Wendy vs RA flare | Arthritis Information
This disease is just a terrible enigma to me. I take injections of methotrexate each week, humira every other week, sulfalazine daily, mobic daily. It seems to me that all those meds would certainly work on anyone who has sero neg RA because it's not supposed to be as bad as those who have RA who give off all the correct enzymes/chemicals that the disease process causes. Yet here I am hurting allover, stiff in every joint, nauseated and this is the second day of work I've missed. My rheumy certainly doesn't seem to be impressed with my disease. My internal medicine doctor is though, he keeps telling me to hang in there that one day just as mysteriously as it came it will go away for awhile and then return. I've had a few days here and there that I have felt normal since my diagnosis but have no idea why I felt good on those few days. I think that because I'm a nurse I look for cause and effect. If it's better today why is it better and if it's worse what did I do to make it worse? I spoke with the internal med doc's nurse on Thursday because I had to have something for pain, he'd had me on percocet and I just felt so bad while taking it that I didn't want to repeat the experience so I ended up on hydrocodone 10 mg three times a day. But it wears off in 4 hours and I start to hurt and this may sound strange, I feel like soemone has put a big supper heavy blanket on me, maybe like the lead lined aprons they use in radiology but in blanket form. I feel like it's pulling my shoulders down toward my chest, making me humpback and I feel so heavy that I can't even move. I am swollen allover, not just my joints, I'm carrying a lot of extra water around in my body but I dunno why. The past few days I've looked forward to night time that way I can take my meds and knock myself out so I don't have to deal with this pain. If I stay in one position too long, I can barely get out of it I'm so stiff. I'm sorry to whine but you guys are truly the only ones who understand what I'm going through. To top it all off, I had a patient come in the other day, young hispanic guy who has only been in Alabama for a few months, came up from Mexico. I had the interprater ask him all the questions on the form including "have you been exposed to tuberculosis" and he answered no. He has TB and was coughing allover his immuno-compromised nurse. I got the TB test yesterday, so far it looks normal. I decided that since I took the TB skin test that I shouldn't take any prednisone because it might mask my response to the test. Prednisone is really the only thing that makes me feel much better, ugh. I think my next visit with the rheumy I will ask him about AP, protect myself from some of the bugs I come in contact with everyday. So, finally at the end of this monologue I'd like to ask a question or two:
1) has anyone here tallied up the AP versus regular treatment to see which way works the best although I know different folks respond differently to all treatments, I just need some hope and I want to use the one that seems to work the best statistically.
2) How often do you have a flare or herx?
3) We all seem to worry about pain medication, what works best for you?
4) Am I the only one who has severe nausea with a flare?
Thanks for letting me vent, Wendy
Hey Wendy -
I think I can only answer some of your questions. Others will jump in in a bit.
I'm really not so convinced that seronegative is any less than seropositive because of the posts I've seen here. Same pain, same responses, less help from MD's - go figure. Personally, I think its another avenue of testing Rheumotology needs to look into - what is different than you guys because right now I think the 'urban legend' makes them say it's less severe, but the reality is nowhere near that.
That being said, you might be able to use that perception into getting AP. ;-)
Truely, if your doc is not helping you, AP or not, you should consider switching to one who listens to you. They don't have to be impressed with your disease - they have to help.
I know that lead blanket feeling - I had that really bad when I first was diagnosed. I don't think mine was related to the pain meds tho because I was on Tramadol, and for about 1 pill, Vicodin. Oddly, I'm still on one 50 mg Tramadol and the only reason I don't dump it is not pain; it's that 'dragging' feeling I have if I don't take it that comes on about 5-6 PM. I can't keep kicking backside if the last 4 hours of my day are 'dragging' KWIM? I will say, however, that I'm beginning to suspect it's just a 'weaning' thing and if I did it for a few weeks that might go away. Who knows? And, sorry, but I don't think this helps you with your question tho.
Are you sure that is water weight? And if so, has the doc checked your kidney function? If that's fine, then nothing to worry about. Call and get a copy of your records - I swear you will find all sorts of clues in there to help you heal, AP or not.
Have you tried probiotics? If you're considering AP (or not ;-) that might really help with pain and swelling. It's not a cure all, but it really helps both APers and Non-APers. You can run a search here, lots of non-APers saying they have had a great response. This might really help you until your next Rheumy appt and keep you moving.
In answer to your questions -
1) There seems to be no concensus. The Arthritis Foundation has on their site that AP works for 60% of users. They are the only place that says that. Most studies put the biologics effective for about 33% which is why (I assume) that they move between the 3 TNF's all the time. Like if one works, the other may work...or whatever. Before anybody gets their knickers in a twist about my OPINION of what I've read here - I'm not dissing the TNF's - just saying it's up to anybody which bandwagon they decide to jump on.
2) I don't. I'm Palindromic RA which had flares in the beginning which moved me into 'all the time'. On AP the pain levels dropped from all the time by a sort of 'muting'. When I went back to all Palindromic, I had 'lurkers' (joint about to go off) to 'nigglers' (visualize a little electric curl in the joint) to almost nothing. I no longer herx on Mino and only herx rarely on Zith and only if I look for it and really decide its a herx and not a random somthing-else.
3) I'm off all pain meds except on Tramadol a day to avoid that dragging thing. My pain is non-existant.
4) I used to have nausea on diagnosis but not sure it was related to the flare. My stomach was so torn up I barfed at the drop of a hat. I used to be on PPI's (awful med, MO) and that did help heal my stomach and have recently weaned myself off the PPI (long, barfing, process). My stomach is now healed, the PPI was unnecessary and the barfing was from unthrottling the stomach after being on a PPI so long.
I don't think I helped with your questions tho.
Hugs,
Pip
Wendy - I certainly understand, and everyone else in here understands, the brutal part of taking multiple medications and it not working. Hang in there, it took over 2 years for me of asking and prodding for different medications to finally get a combo that works, for now.
1) No, all we can do is argue about it :(
2) I am in flare 24/7, as I have been feeling RA taking over my body for about 9 years now and the party never stops
3) Flexeril (muscle relaxant) and Ultram
4) No nausea here, maybe other posters
Good luck, we are all pulling for you. Cathy
Wendy,
First let me say that if for any reason I am in great pain, I will go to urgent care. One thing that people with rheumatoid arthritis don't realize is that if we become sick somewhere in our body or system, our immune system kicks into overdrive, over riding the effects of our meds thus causing what some call flares. You very well may be sick along with the ra. Even if it is the ra alone and the meds aren't working as they should, I would still go to urgent care and have them change my meds, I certainly wouldn't wait a month or two or a week or two, certainly you may very well be sick. I would imagine that by now you have read quite a bit about ap therapy. Those members here that prescribe minocin past it's potential used to use a snippet from the American College of Rheumatolgy as proof of the use of ap therapy. In July of this year, the American College of Rheumatology updated their recomendations for ra therapy and in that recomendations was their recomendation for minocin therapy and it is for the very minor of the mild ra in early onset with low disease activity. Pip has no choice but to quit using the American College of Rheumatolgy's recomendations because she doesn't like them and so now goes fishing elsewhere. This is what she is trying to feed you. This is the complete paragraph, not officially from the arthritis foundation or even a medical doctor. What she quoted was from a q&a at the af answered by a pharmacist and here is the complete paragraph, this isn't from a clinical trial and does not explain what 60% which would be most likey 60% very mild:
"Minocycline is effective in about 60 percent of people with RA who use it. However, it often is not prescribed because it does not have FDA labeling approval for this use, and it is a relatively weak DMARD compared with methotrexate, leflunomide (Arava) or the biologics (Enbrel, Humira, Kineret, Orencia, Remicade and Rituxan). It isn’t the antibiotic properties, but the effects on the immune system and the ability to inhibit enzymes that break down cartilage and connective tissue that make minocycline (and other tetracycline drugs) so effective."
Don Miller, PharmD, Pharmacist
And here Wendy is the recpmendation for minocin therapy from the American College of Rheumatology and they actually do have your best interest in their recomendation and this is real stuff, not a paragraph from a q&a by a pharmd:
Minocycline monotherapy is recommended for patients without poor prognostic features, with low disease activity, and with short disease duration.
I am not saying to not consider all therapies, just letting you know that this forum is not the place for that information and that you need truth in making such serious decisions. Bottom line, you should go to urgent care, you may very well be sick.
LEV
[QUOTE=levlarry]
Don Miller, PharmD, Pharmacist
HI Wendy,
I'm not exactly on AP, because I still take 7.5mg MTX weekly (down from 20mg thanks to Minocin), and 400mg Plaquenil, but I can say that I have improved enormously since adding Minocin to my drug therapy. I'd say that lead blanket feeling is about 95% gone. I still have days with joint pain and swelling, but it is definitely a lot less than it was pre-Minocin. This summer I drove half of 25,000 kilometres and lived in a van for 4 months, visiting some places which were quite rustic and remote. I wouldn't have believed that to be possible 2 years ago.
To answer your questions:
1) No one really knows which works best but what really matters is what works for YOU. Sometimes this might take a little trial and error. the more you know about AP, the more chance of success you will have. Many, many people report doing better on gluten and/or dairy free diets when on AP, as well.
2) I tend to herx or flare every time reduce my MTX, for several weeks. A few times I've had to go back up on MTX and then down again. AP is a VERY SLOW proccess and it's a 3 steps forward, 2 steps back sort of therapy. Everyone will have an individual pattern, or randomness, as the case may be.
3) I don't use pain medication (other than marijuana, and sometimes 200mg Ibuprophen for headaches).
4) I sometimes wake up with a headache caused by a stiff neck, which nauseates me, Usually an ibuprophen fixes me right up. My doctor said some people respond to pain with nausea. I think something else might be going on because the headaches aren't even that bad. Sometimes I will go for months and months without having one, though.
Good luck with whatever course of action you take. This is a terrible disease and every day I wish someone would have a breakthrough in understanding it's mechanism. Until then, all we can do is look for little miracles (and sometimes we find them).Wendy,
Throughout history man has been shunned, tarnished and villified for daring to speak the truth. I told you the truth, period. If they want to show where the AF makes an official statement about minocin then fine. One even says that 60% is 60% no matter what it is and it's, truthfully we don't know because the AF made no official statement. Period.
Ask Suzanne to post the official Arthritis Foundations recomendations for AP therapy. I stand by what I posted, it was a question about long term minocin in q&a and answered by a pharmd, certainly not a spokeperson for the Arthritis Foundation. You will find no recomendation to AP therapy from the Arthritis Foundation, ask them to post the recomendation of AP therapy if it exists, it doesn't, they are fishing because even the ACR gave them the bottom line so that they can't even use snippets any more. Even the pharmd that answered the question says that minocin is weaker than methotrexate but of course they didn't post that. This is from the Arthritis Foundation:
Our Dream for the Future
Given adequate funding, we predict that in the next 10 to 25 years:
• Genetic studies will identify specific genes associated with
the different types of arthritis, leading to genetic testing and
therapy directed at the products of genes.
• Epidemiologic studies will clarify many of the risk factors and
triggers that initiate arthritis.
• Diagnosis before the onset of symptoms will be possible
using biomarkers and imaging tests.
• Treatment will be highly individualized, using very specific
biologic agents and gene therapy.
• Early diagnosis and individualized treatment will increase the
incidence of remissions and reduce complications, disability
and premature death.
• Vaccines will be developed to prevent some forms of arthritis.
• Joint reconstruction and tissue engineering will replace
defective cartilage and resurface joints.
60% is 60% but if you are going to pull numbers out of a statment include the entire statement....
"Minocycline is effective in about 60 percent of people with RA who use it. However, it often is not prescribed because it does not have FDA labeling approval for this use, and it is a relatively weak DMARD compared with methotrexate, leflunomide (Arava) or the biologics (Enbrel, Humira, Kineret, Orencia, Remicade and Rituxan). It isn’t the antibiotic properties, but the effects on the immune system and the ability to inhibit enzymes that break down cartilage and connective tissue that make minocycline (and other tetracycline drugs) so effective."
[QUOTE=Suzanne]
[QUOTE=levlarry]
Don Miller, PharmD, Pharmacist
Pip
sorry suzanne..i missed the quote box...
[QUOTE=levlarry]Wendy,
Our Dream for the Future
Given adequate funding, we predict that in the next 10 to 25 years:
• Genetic studies will identify specific genes associated with
the different types of arthritis, leading to genetic testing and
therapy directed at the products of genes.
• Epidemiologic studies will clarify many of the risk factors and
triggers that initiate arthritis.
• Diagnosis before the onset of symptoms will be possible
using biomarkers and imaging tests.
• Treatment will be highly individualized, using very specific
biologic agents and gene therapy.
• Early diagnosis and individualized treatment will increase the
incidence of remissions and reduce complications, disability
and premature death.
• Vaccines will be developed to prevent some forms of arthritis.
• Joint reconstruction and tissue engineering will replace
defective cartilage and resurface joints.
Suzanne,
Just post the official recomendation for minocin from the Arthritis Foundation, you are starting to make me dizzy running around the bushes and you are hurting my brain talking goobly goop. this is from the Arthritis Foundation. See how easy it is to post the truth, easy stuff:
Frequently Asked Questions About Rheumatoid Arthritis
Treating Rheumatoid Arthritis
Early, aggressive treatment for rheumatoid arthritis is important not only to relieve symptoms and make you more comfortable now, but to help prevent serious problems later – particularly if blood tests indicate you are at risk of developing a more serious form of the disease.
Doctors generally agree that your risk of serious disease is greater if blood tests are positive for antibodies to rheumatoid factor (RF) or cyclic citrullinated proteins (anti-CCP). While not all people with RA test positive for these antibodies, a positive test can indicate that you need more aggressive treatment to help keep the disease from progressing.
Fifteen or 20 years ago, doctors started treatment for virtually all RA patients with aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs) to ease pain and inflammation, and progressed to stronger disease-modifying antirheumatic drugs (DMARDs) if symptoms persisted. Today, however, research shows that that irreparable damage can occur early in the disease process, so doctors make every attempt to treat aggressively early on to slow or even stop that process before damage occurs.
If you are not receiving treatment, or if you’re not being treated aggressively, you risk damage to your joints that could lead to deformity and disability – and possibly necessitate joint replacement surgery – down the road.
Aggressive treatment usually involves a disease-modifying antirheumatic drug such as methotrexate, hydroxychloroquine (Plaquenil), sulfasalazine (Azulfidine); a biologic agent such as etanercept (Enbrel) or adalimumab (Humira), or a combination of both a biologic and a DMARD.
There are many different drugs used in the treatment of rheumatoid arthritis. Some are used primarily to ease the symptoms of RA; others are used to slow or stop the course of the disease and to inhibit structural damage. Most of these drugs fall into one of the following categories:
NSAIDs – Nonsteroidal anti-inflammatory drugs include more than a dozen different medications – some available over-the-counter, some available by prescription only – used to help ease arthritis pain and inflammation. NSAIDs include such drugs as ibuprofen (Advil, Motrin), ketoprofen (Actron, Orudis KT) and naproxen sodium (Aleve), among others. If you have had or are at risk of stomach ulcers, your doctor may prescribe celecoxib (Celebrex), a type of NSAID called a COX-2 inhibitor, which is designed to be safer for the stomach.
Corticosteroids – Corticosteroid medications, including prednisone, prednisolone and methyprednisolone, are potent and quick-acting anti-inflammatory medications. They may be used in RA to get potentially damaging inflammation under control, while waiting for NSAIDs and DMARDs (below) take effect. Because of the risk of side effects with these drugs, doctors prefer to use them for as short a time as possible and in doses as low as possible.
DMARDs – An acronym for disease-modifying antirheumatic drugs, DMARDs are drugs that work slowly to actually modify the course of the disease. In recent years, the most commonly used DMARD for rheumatoid arthritis is methotrexate. But there are about a dozen others that fall into this category. They include hydroxycholorquine (Plaquenil), sulfasalazine (Azulfidine, Azulfidine EN-Tabs), leflunomide (Arava) and azathioprine (Imuran). A person diagnosed with RA today is likely to be prescribed a DMARD fairly early in the course of their disease, as doctors have found that starting these drugs early on can help prevent irreparable joint damage that might occur if their use was delayed.
Biologic agents – The newest category of medications used for rheumatoid arthritis is that of the biologic agents. There are currently six such agents approved for rheumatoid arthritis: abatacept (Orencia), adalimumab (Humira), anakinra (Kineret), etanercept (Enbrel), infliximab (Remicade) and rituximab (Rituxan). Each of the biologics blocks a specific step in the inflammation process. Humira, Enbrel and Remicade block a cytokine called tumor necrosis factor-alpha (TNF-?), and therefore often are called TNF-? inhibitors. Kineret blocks a cytokine called interleukin-1 (IL-1). Orencia blocks the activation of T cells. Rituxan blocks B cells. Because these agents target specific steps in the process, they don’t wipe out the entire immune response as some other RA treatments do, and in many people a biologic agent can slow, modify or stop the disease – even when other treatments haven’t helped much.
For more information, see Arthritis Today's Drug Guide
levlarry2008-10-20 14:31:09Makes you wonder what the pharmacist would do, doesn't it?
[QUOTE=levlarry]Suzanne,
[QUOTE=Pip!]
Which is irrelevent because there are a ton of off label uses of biologics. So how come when we use antibiotics 'off label' its such a big deal and when other docs use it for 'alzheimers' or whatever it's not?
Pip
[/QUOTE]
Pip-this may come across as rude but from my impression from people who have communicated with me is that the objection isn't to the medication but the objection is to the claims of its supporters. People who are on multiple medications give no credit at all to their improvements to the other drugs they are on, people who aren't doing well on AP are given the impression that somehow its their fault they aren't doing well. In fact one thread on raodback that turned me off entirely is one that someone implied that only people on AP care about their health. Many APers claim they have a cure when most people never get off the anti biotic. large studies showing benefits of the biologics are dismissed as junk science when studies of 15 for the antibiotics are touted as proof of its effectiveness. People are given the impression that their drs are not doing their jobs if AP isn't mentioned as a possible treatment. I've said this before that too many APer's tout anit biotics like they are junk cures which scares off a lot of people. The proof is in the science not the anecdotes
The message gets lost when people "right" fight. When people get into name calling arguments with others who disagree with them their message gets as lost just as much as the other persons
Buckeye -
Sorry, my snip was to Lev, I think, with his off label comments he's made many times. It wasn't directed to you. The fact is, yes, AP is used off label. So are the biologics. If it's OK for one group to do that, there the other can too. My point is why is it 'bad' for us vs 'not bad' for them?
In regards to the rest of your post - the point of AP is to wean off the other meds and get down to a maintainance dose. If people start feeling well and then don't want to 'rock the boat' and finish weaning, can any of us who've felt this pain blame them? But is that strict AP? No, it's not. In the Dr. Brown days it was 'sink or swim'. He didn't give people a lot of hand holding. Or a lot of suppressants. It was by faith alone that people made it thru. That's what made me do straight AP - if they lasted thru herxes from hell, so was I.
I don't claim I have the cure. I state, and emphatically, I'm going to go for it, after I hit remission. Yes, I will go med free and yes, I will watch my blood work like a hawk to see if it comes back. If it does, then back on the meds I go. But my AP doc says 10% go med free. So, that's 10% that are cured in my book. From what I see about med free remission, that 10% is a LOT compared to the other med choices.
I cannot explain away that RB comment. Nor would I try to. But when I first got here to AI I must admit I had the same impression. Why wouldn't somebody start on the lowest med possible? Why don't they jump at this? It's taken me a long time to realize there is a lot of fear in NOT trusting your doctor and trusting your own instincts.
Our complaints about the studies for the biologics is the manipulation of the data (JAMA articles supporting that claim) as well as the fact that the biggest researchers seem to have incredibly strong financial ties to Pharma. I'm sorry, but my complaint is with any science that is 'bought and sold' including the vitamin industry, etc. (especially the D Council) and other alternative 'science'. Airborne anybody?
Yes, IMHO, if your doc doesn't mention AP as a possiblity or disses AP because of 'you're going to get Lupus' but fails to mention that Rituxin death NOT related to cancer etc...you can see where we get upset. The proof is in the pudding but if pudding isn't even on the menu...
So, yes, we need more studies but I'm becoming convinced that until enough of us heal and start writing our representatives, that's just not going to happen.
Yes, the message gets lost, but if we didn't have to deal with misinformation like Lev and his flunkies spew then these fights wouldn't happen. Instead, we defend, he or his trolls respond, and the fighting escalates. We'd stay to just answer questions if that idiot didn't think he was saving the world when he doesn't have the brains God gave a gnat and couldn't put up a logical answer to save his butt.
Frankly, I have to give the 'thoughtful' non-APers more credit. At least they ask serious questions.
Pip
Edited for multiple typos.
Pip!2008-10-20 15:57:22AP is not a cure and long term use opens your body up to more problems. you can not actual wipe out all organism in the body without setting up an inbalance. a normal healthy body has all kinds of bacteria and such, even cancer cells that exist until somthing triggers the inbalance. if you pull a tooth you get an inflammatory response, that's what your body does..hello..so unless you have been tested and found to have uncontrollable infection why would you randomly tell everyone to self dx, forget the dr.
come on pip people are logically answering your one-sided train of thought
as far as the fights, you purposely start them with your call to arms on SMACKDOWNS
IF YOU WERE NOT SO HARDHEADED YOU WOULD SEE THAT OTHERS VIEWS ARE THEIRS.
Pip,
What mis-information do i keep posting. Maybe the fact that you don't have rheumatoid arthritis and that you have palindromic arthritis but that you let people believe that you have ra and are in fact being cured of rheumatoid arthritis when you have palindromic arthritis an arthritis that may cause pain for hours or days and then may not cause pain or swelling for weeks, months or even years and causes no joint or bone damage. But for some reason, even tho you don't have our disease you enjoy trying to tell all of us rheumatoid arthritis patients how to cure our disease, even tho you don't have our disease. You just love to let us know that you are going swimming or hiking or skating as if it's some AP rheumatoid arthritis miracle, phoney. If we rheumatoid arthritis patients had palindromic arthritis we could do normal things also during the times that we were not in pain for those few hours or days, our disease does not take months and years off, our disease is constant. What other mis-information? The fact that the American College of Rheumatology has a very clear defined set of recomendations for therapy for rheumatoid arthritis including minocin (AP) and that now you can't use little bits and peices to try to fit your phoney agenda. The mis-information about that phoney marketing study that you used to constantly posts parts of to fit your agenda until I showed that it was an email marketing study, not a medical study as you tried to make us believe. The misinformation about all of your garbage studies that weren't worth the web space it takes to post them. And now you want to say, so what if their are no clinical trials, doctors say and pharmicists say and they are bought and they are sold and to those that came here and said that they had damaged their joints by trying AP therapy you were quick to tell them that they didn't follow protocol and that it's very difficult to follow and of course it was their fault. Why doesn't roadback allow those with bad AP experiences to post and if they do post, they are quickly deleted. Yous are scandelous at the least. Even with the arthritis foundation, yous post only what is to your advantage and you don't post the complete post because it is to your disadvantage. What's wrong with you people? You can continue to say what you want about me but yous need to keep it honest if yous are going to continue to post at this rheumatoid arthritis forum. Your opinions and .29 will buy 1 pound of dryed white beans in alaska. Try to keep it real Pip. And when you are bragging about how functional you are be sure to add the complete story and say "but oh yeah, I don't have your disease, rheumatoid arthritis, I have palindromic arthritis."
LEV
remember Wendy?Hi Pip
my answer wasn't directed at you individually..its come from many years of reading and writing on arthritis boards.
I think one thing we lose sight of a bit is that different people's experiences with RA color our reactions. If you have had the disease for a long time or have been seriously affected by it then your recommendation may be to be as agressive as possible in treating the disease. He's not the most political correct person but I honestly believe that Lev is generally fearful of newcomers getting the same kind of damage he got before his present treatment. And he truly believes that the claims about AP are over exaggerated. Of course it doesn't help that he isn't overly fond of the messenger's either :)
Pip one thing I do know that until you have lived with serious joint damage you really don't know how bad it can get but early diagnosis and no damage is your perspective. Neither are wrong they are just different and they do affect the way you look at this disease and its treatments.
I'm not a real big fan of Dr Phil's but his favorite question applies here: "how's this working for you" not the meds but the fighting. You are never going to win the fight with Larry nor he with you. One side has to agree to dsagree. Rebutting everything he says simply escalates things into a schoolyard fight. Now if it were me and everytime I was involved in a discussion about a certain subject it ended up in a fight I would change the way i discussed it. don't address Larry or anything he posts. Refuse to engage him....people here are smart enough to figure things out but when you guys engage in the fighting and escalation, and it does take 2 to fight, you lose a lot of credibility. All newcomers see is 2 or more people fighting they don't even read what the argument is about sometimes.
oh....I hope that I'm included in the thoughtful non-apers ? I think if an adult, intelligent person has looked over the options and decided to try AP, it's none of LevLarry's business.[QUOTE=buckeye][QUOTE=Pip!]
Which is irrelevent because there are a ton of off label uses of biologics. So how come when we use antibiotics 'off label' its such a big deal and when other docs use it for 'alzheimers' or whatever it's not?
Pip
[/QUOTE]
Pip-this may come across as rude but from my impression from people who have communicated with me is that the objection isn't to the medication but the objection is to the claims of its supporters. People who are on multiple medications give no credit at all to their improvements to the other drugs they are on, people who aren't doing well on AP are given the impression that somehow its their fault they aren't doing well. In fact one thread on raodback that turned me off entirely is one that someone implied that only people on AP care about their health. Many APers claim they have a cure when most people never get off the anti biotic. large studies showing benefits of the biologics are dismissed as junk science when studies of 15 for the antibiotics are touted as proof of its effectiveness. People are given the impression that their drs are not doing their jobs if AP isn't mentioned as a possible treatment. I've said this before that too many APer's tout anit biotics like they are junk cures which scares off a lot of people. The proof is in the science not the anecdotes
The message gets lost when people "right" fight. When people get into name calling arguments with others who disagree with them their message gets as lost just as much as the other persons
[/QUOTE]
That sums it up perfectly.........
Pam,
I remember Wendy. I am reminded every day of how fast rheumatoid arthritis can cause irrepairable damage to the bones and the joints and that's why I insist on honesty and truth. All I ask is for the truth to be posted with medical and science fact to back it up. I read the posts of others that tried AP and received joint damage and Pip quickly accuses the patient of doing "it" wrong, the patients fault. I remember Wendy, and it's easy to be led down a bad path even if it's labeled road back, when we're looking for the "miracle" cure.
LEV
Wendy? Are you still out there? I'm sorry, but I don't know much about you, but you mention you are a nurse. Most nurses I know work 12 hour shifts, I was wondering what your job was like. These days there are a lot of drug options to treat RA, but that is only one part, though an important part, in managing RA, a demanding, stressful job can take its toll, and then add to that the responsibility of a family, should one have one.
Things will turn around for you, once you find the right treatment path for you, though it can, unfortunately be a trial and error kind of thing, and tough to make the decision as to which med to take. There is hope, things will get better. I've had RA for 31 years, and I recall my RA doc's waiting room in my early years, I saw more people in pain back then and occassionally folks in wheelchairs, now more patients look normal, its only old timers like myself that limp around. Take care, and hope you start getting some relief from the RA real soon.
Wendy - hope you are hanging in there. Like I said, we are pulling for you. Hi Wendy. I hope you are still here. Sometimes a topic will kind of set someone off and it kind of takes on a life of its own. But I hope you made it through all that.
I just wanted to let you know something I recently found out, regarding the edema. As you know, edema, in itself, can make you hurt, too.
Anyway, I've been having terrible swelling in my feet and legs for about a year. I already take 160 mg of Lasix a day due to an ongoing edema problem. When I would continue to retain water, my doc had me take a second dose of Lasix for a week, til the swelling went down and I lost the 6-8 lbs that I gain when it's out of control.
Since I've had so much trouble with it, all my docs look at my feet when I come in. My rheumy checked last week and I was horribly swollen with water. She looked at my meds list and said that the Meloxicam (Mobic) could easily be the culprit! I only take one a day, but she told me to take just a half and see if the edema got better. That was Friday, and today I actually have leg-shaped legs, again! And the pain from the skin stretching and the water in my tissues has almost gone away.
My rheumy said that ALL N-Saids could do that to us! I sure wish someone had told me that sooner. I've had episodes of edema frequently for a long, long time.
So, for that one problem, talk to your doc about any NSaids you are on.
I'm so sorry you are having such a bad time with the pain. I know how difficult that can make your life. It seems that it's the only thing you can think about when it's that bad, doesn't it? I hope you find the combination that will help you very soon. It sometimes can take a while to hit upon the right combination, but try to stay strong. I know it's hard to believe, but there are some really effective meds out there for RA at this time. It hasn't been too long since there was almost nothing with which to treat RA. I'm know it's hard to stay optimistic, but we are here for you anytime you need someone to talk to. We do try to help each other through our bad times.
The quarreling you saw here doesn't happen all the time. People are just very passionate about their treatments if they have had some success with them. I don't really know why the AP therapy pushes people's buttons so much, but you can do your research about it and make up your own mind. I know very little about it so I offer no opinion. (Don't know why my font changed. It doesn't indicate anything, though)
Well I've gone on long enough. My thoughts and prayers are with you. I hope you find your successful combination soon. Come visit us anytime!
Gentle hugs, Nini
wendy,
I'm really sorry you are going through such a rough time. So discouraging to be on so many meds and still with so much pain and stiffness. I dont have any exp with AP and am fortunate that my ra is not as severe as yours is sounding. I do though get nauseated from the pain
I agree with Nini you have to research and make your own decision. Whatever you do decide to do/try I hope it will work wonders for you!!!
Wow, I didn't mean to start an online fight! Believe me I've seen drugs used off label and have used them for such myself as prescribed by a doctor. To answer a few questions, yes, as far as I know I have normal kidney function and so am "assuming" that the edema I have is because of medication or because I have a job that requires me to sit a lot and have been traveling some which is the reason I haven't been here to see the responses to my post. I am a triage nurse in a local ER. I've been a nurse for more than 20 years, most of that in the ER. We abuse our bodies in the ER by pulling and pushing people we shouldn't often without any help because most of the time the patients out number the nurses something like 4 to 1. I've had a bad back for years and years, the diagnosis of RA has only added to the pain. Most of my pain is in my shoulders and neck and I have terrible SI joints. I think the big puzzle here is if we have so many things to treat RA with then why do so many of us still hurt? Is it the damage we already have or have the medications we take done nothing to stop the damage to come? Truly, I beleive that the meds have to be doing something or I would already be crippled. I do feel better than when I was first diagnosed and if I am repeating myself, sorry. When I saw the rheumy a few weeks ago he seemed flabbergasted when I said "sometimes I can't get my hands behind my back to fasten or undo my bra, sometimes I can't get my arms over my head to take my shirt off." He looked like he couldn't believe what he was hearing. It seems that only my primary care physician truly understands anything I say. He's been out of the office, he has lymphoma and I swear getting his office to do anything while he's out seems foreign to them. He works with a huge group of doctors so it's not impossible but it seems his office thinks I am only after drugs. There are a whole lot of medical people who don't get the distinction, I'm after pain relief, not drugs. If there were some way other than narcotics to relieve my pain, I'd be doing just that. I know many of you know EXACTLY what I'm talking about because you guys get treated that way too. Thank so many of you for responding, sometimes just knowing that there are others who feel just like you do makes all the difference in the world. I mentioned travel, I went to Fl to see my son who lives in the panhandle near the beach. My boyfriend and I love to fish so we went out on a deepsea boat and we caught so many fish that other people on the boat were asking us what we were doing differently. It was great fun but about killed me! We were fishing in about 150 feet of water so bringing up a fish of any size from that depth took all the strength and then some. Sometimes I would just hand the rod to Rocky and tell him to get the fish in! Getting way helps too as does being with family who ya miss.Wendy -
You didn't start the fight, it's that same person who always does.
I have no pain anymore. Period. I missed ALL my meds Tuesday and ran from when I woke up at 8AM until 2 AM the next day. I took my meds today minus the pain pill. Don't need it anymore. Still seem to need the Naproxen.
Buckeye - yes, I meant you were a thougthful non-APer. Some of the best convos we've had were with you and over research.
Pip
3) We all seem to worry about pain medication, what works best for you?
Answer: 1 Vicodin (750 mg) morning.... 1 Ibprofin( 800 mg)Afternoon...1 vicodin (750mg) bedtime
I was worry more about living with so much pain. I am 44 years old and I don't want 40 more + years not controlling my pain. For now this is what I do. My Rheumy, Ortho and family doc all agree with this regimen.
Peace and good luck
Inflamed Online
[QUOTE=inflamedOnline]3) We all seem to worry about pain medication, what works best for you?
Answer: 1 Vicodin (750 mg) morning.... 1 Ibprofin( 800 mg)Afternoon...1 vicodin (750mg) bedtime
[/QUOTE]
I have a RA factor over 2000 but I am not in pain often. I just can't walk well because of the pain in my ankle. MTX and prednisone seem to be working well for me even though I am weaning off prednisone. Yesterday I was having pain in my finger and took 1 500 Naproxen. Most days I don't take anything for pain. I watch what I eat because I notice if I eat too much chocolate, red meat, bacon or diary products I get a flare. You might try fasting on just salads for 3 days and see if you feel better. It usually works for me. I don't get nauseaus. Also for swelling I would try ice pacts followed by heating pad.
I'm sorry you are hurting I know how you feel. Your internal doc is right. When I was first diagnosed the disease dissappeared and then came back again. For me this is the 3rd time it has left and returned and this time it is crippling me.
I just don't get it, why fuss about who is right... regularly prescribed RA meds such as NSIDS, DMARDS and TNFs versus antibiotic protocol. This is like fighting over which works for fever tylenol (acetaminophen) or advil (ibuprofen). Guess what? They both work. I can't take advil, it makes my tummy burn so when I have a fever I take generic acetaminophin and the next thing I know I'm sweating like a piggy and my temp goes down. Just like it would if I took Ibuprofen and I don't get an upset tummy. So Tylenol is better for ME. I don't think I need to tell anyone here what works best for them. When I ask "what makes YOUR pain go away?" I want to know what works best for YOU, not your neighbor or your sister or anyone else that uses this forum. I don't want to know what the arthritis foundation says because (and this is just my theory) they get money from drug manufacturers to say what works and what doesn't. If you have proof I'm wrong, I don't care. That's not the question I asked. What works for YOU is what I asked. I'm really tired of coming here looking for answers from people who know what it's really like to have RA and instead of getting answers a fight ensues over something I didn't even ask! If you wanna argue with someone, find another post, not mine please. Thanks, Wendy
I absolutely agree WendyR.Yes, WendyR, you are exactly right.Pip,
You posted this:
Wendy -
You didn't start the fight, it's that same person who always does.
I have no pain anymore. Period. I missed ALL my meds Tuesday and ran from when I woke up at 8AM until 2 AM the next day. I took my meds today minus the pain pill. Don't need it anymore. Still seem to need the Naproxen.
Buckeye - yes, I meant you were a thougthful non-APer. Some of the best convos we've had were with you and over research.
Pip |
|
Antibiotic Protocol - Mino, Zith, Naproxen, Folic Acid down to 1 mg, Milk Thistle, Bromelain, Potassium, Magnesium & 1/4 my old Tramadol! Adding Nystatin, Diflucan, NAC, GSE, OofOregano & Melatonin! |
Pip,
Now what did you forget to mention when you were bragging about your good conditon? You forgot to tell everyone that you are doing so well because you don't have our disease, rheumatoid arthritis. We here at the rheumatoid arthritis forum would all be doing good if we too didn't have rheumatoid arthritis but unfortunately we, unlike you, do indeed have rheumatoid arthritis. Why are you such a phoney? What do you get out of lying about having a disease just for the fact of saying you are being cured of a fake disease by using minocin? Pip does not have rheumatoid arthritis. She just likes to make people believe that she has rheumatoid arthritis and to make people believe that she is being cured of rheumatoid arthritis for what purpose can only be imagined. She has palindromic arthritis.
LEV
Wendy, Well said!
oH, byt the way, I do not have tuberculosis. Also LevLarry, have you ever looked up palindromic arthritis? I really don't see much difference in it and RA. What I read said it's exceptionally hard to treat. I am glad Pip is doing well, I wish everyone here the same success she has had in treating her affliction. We should all be so proactive as Pip has been and willing to share her good news with us so that we may better understand our own problems. If I ask a question about my illness, Pip is usually one of the first to answer, one of the first to explain her rationale for whatever she is telling me and she offers me hope that I too can get better. I dunno what the problem is between the two of you. It's not like she's leading any of us astray, we're all adults her, all able to come to our own conclusion. She's not trying to sell me berry juice not trying to tell me that taking antibiotics is the only thing that will work. I've been on about 7 different arthritis medications since my diagnosis and while some have helped I don't believe I have been in any kind of remission and this is what I don't understand. If the medications are so grand, especially the very, very expensive TNF's then why the hell am I still hurting. Why am I here writing to you guys and not out enjoying my life? My son is a big believer in the government lying to the people, he thinks the FDA is a big joke. He thinks that most medication in the US is approved because the companies pay the FDA to approve it, which is at least partially true. Drug studies are mostly paid for by the manufacturer which sometimes comes back to bite them in the a$$. I just hope that I'm not taking something that's gonna kill me. Perhaps Pip has the right idea, the meds she is on have been around for a very long time and they work for her without much risk to her. So who is smarter Pip, or me or any of us who take multiple meds and wonder if they are actually doing anything?
Wendy I am sero neg and my rheumy is convinced that we suffer the same as those who are positive...he thinks a lot of his neg patients seem to suffer more pain and less swelling and positive are more swelling and less pain...Im not sure!! I suffer with a lot of pain, not a lot of swelling. Please dont worry about the negative posts on here, they come and go
take care
"So who is smarter Pip, or me or any of us who take multiple meds and wonder if they are actually doing anything?"
wendyr
I can't speak for anyone but myself...I'm seronegative and after years of not having a very good response to any meds, I now use Rituxan. It has worked quite well for me. It has enabled me to stop using both MTX and Prednisone. I have also not had any new joint damage since I've been on it.
So I guess I can say that I'm very satisfied with my meds and that I know that they are working..........
Lynn492008-10-25 11:09:48Thanks Wendy, for looking up PRA - we appreciate when others understand and then can possibly help another of us if they present with the same symptoms. I think a lot of PRA peeps get lost in the shuffle because the rheumies don't see a lot of us.
We need to concentrate on healing with which ever road we decide to travel.
Hugs,
Pip
And that's exactly what I'm after Lynn, I just want to KNOW that they're working. I think I stay more upset about the possibility that I won't be able to work or take care of myself within the next 5 years. I still have my daughter's student loans to pay for, a mortgage etc. Can't imagine not working, I think I'd go nuts staying at home all the time. I want relief and I want it now!Wendyr,
What I posted, I posted with good intentions. Many members have previously posted that they didn't realize that Pip does not have rheumatoid arthritis. They had just assumed that since she was constantly posting on a rheumatoid arthritis forum that she was being cured by minocin and she didn't bother to mention that she doesn't have rheumatoid arthritis, they just assumed that she was being cured of rheumatoid arthritis with minocin. So when I mentioned that to you, I did it with good intentions. I know how very fast real rheumatoid arthritis can damage bone and joints, irreversably. I wanted to be sure that anyone with real rheumatoid arthritis is not deceitfully sent to a roadback that may take them down a road that can never get them back to good. I realize that you and Pip have much in common. Yous both believe that the fda and medical and science is paid off by big pharm. I do want to correct you on your assumption that palindromic arthritis is almost just like rheumatoid arthritis. Palindromic arthritis is as different from rheumatoid arthritis as acne is to small pox. The real similarities is that both do cause swelling and pain in joints. Real rehumatoid arthritis can be deadly, affecting major organs and arteries, not so palindromic. Real ra can destroy joints and bones, not so palindromic. RA is constant, palindromic may last for a few hours or a few days and then may not flare again for months or years, therfore it is hard to diagnose. Rheumatoid arthritis does not take a break. Rheumatoid arthritis affects multiple joints from both sides of the body where palindromic may affect just one toe. If damage is done by palindromic arthritis, such as a bent toe, the damage is usaualy repaired with time, not so ra joint and bone damage. In short, palindromic arthritis is a totally different disease than rheumatoid arthritis. This from the Mayo Clinic:
Why is palindromic rheumatism so difficult to treat?
- No name / No state given
Answer
Palindromic rheumatism is a rare type of inflammatory arthritis. Treatment can be challenging because the attacks are so difficult to predict.
Palindromic rheumatism is characterized by sudden and recurrent attacks of painful swelling of the joints and surrounding tissues. Attacks may last for several days or just a few hours. Between attacks, pain and swelling completely disappear.
Once an attack starts, treatment may include:
- Nonsteroidal anti-inflammatory drugs
- Intra-articular injections with corticosteroids
- Oral prednisone
To help prevent attacks, your doctor may prescribe:
- Colchicine, an anti-inflammatory medication
- Disease-modifying antirheumatic drugs (DMARDs)
Although palindromic rheumatism can recur over many years, it doesn't usually cause permanent joint damage.