I think that perhaps it is time to take this floating palace in another direction--change the tack, turn into the wind.
I am open to questions re: AP, why I discontinued AP, why I am considering adding AP as an anti-inflammatory agent and any other query that I can reasonable answer.
It is past time, methinks, to end the bickering and divisive behaviour.
want to use your self control........ [/QUOTE]
Thank you Shug and I agree wholeheartedly. See you later.
Pat
Spelunker,
I am very anti-biotic shy. I had a problem where I had to use anti-biotics for about 5 months. Over two of those months I pumped them into my PIC line that was inserted into a vein just above my elbow and went to the opening of my heart. I self administered every 8 hours.
I know that anti-biotics, no matter which ones can be devastating to the complete food canal. I think that Pip still has vaginitis and thrush that she can't get rid of. These diseases are absolutely caused by the anti-biotics. Trying to get the stomach and the rest of the canals back to good after anti-biotics can be almost impossible. To think that I can buy the best pro-biotic and believe that I can replenish all the "good" bacteria that I killed of is not even a possibility. Altho I have not taken the anti-biotics for some time, I am still very succeptable to c. diff. probably forever. If a person does so much damage to the canal, the only chance to repair the damge is stool replacements that is, insert someone elses stool into the damged persons canal, to grow new good bacteria. The only problem is the donors bad bacteria is also given to the recipient.
I sure posted probably too much information just to say that I am anti-biotic shy. Oh well, it's raining outside so I have the time to spare. If any of the information is not quite accurate, it is not for misinformation sake but is actually the way I believe it was told to me and my interpretation.
LEV
Good idea Shug. Since I've had to stop all RA meds, including Sulfasalazine due to a very persistent infection I'm considering starting AP again for the anti-inflammatory aspect of the drug. I had no idea that you were considering the same. Interesting timing for us. In June I plan on restarting MXT and if my research and my new RD agrees then I'll start AP along with it.
Humira has been too hard on my body. I was in RA clinical remission but at what price...a persistent fungal infection that covered my entire lower leg for a year. I finally saw a doctor at the University of Washington Psoriatic Clinic who diagnosed it properly; a UTI, 2 gum abcesses, 4 bouts of a lower intestine bacterial infection and several sinus infections. In 18 months I've been on antibiotics 8 times. It took me awhile to realize that I wasn't doing as well as I thought I was. Isn't denial wonderful/scarey/dangerous?
So far I've been off RA meds a total of 12 weeks and have some inflammation and swelling and a small amount of pain. Nothing like I thought would occur. I have to make a decision which is worse, Humira side effects or the inflammation. Right now I think any of the biologics are worse. When I started AP I was just officially diagnosed with a severe onset of RA. I couldn't walk and the pain was so intense. AP at that stage of the disease didn't work. I'm at the mild stage at the moment and if AP truly works then this will be the most opportune time for me to try it. I'll have routine xrays and examinations to make sure that damage isn't occuring. I won't be foolish about the treatment and it will be monitored closely. My decision to retry AP had absolutely nothing to do with any of the posts on any of the threads on this forum or the Road Back. It had to do with talking one on one with several people who have RA, not PRA or any of the other diseases and research.
If it works then I'm where I want to be with the disease and my lifestyle. If it doesn't work then I restart Humira and hope for the best and give up my lifestyle. For me it's worth trying.
One of the reasons I want to try this is the obvious reason , I feel it's less invasive and in the longterm a better option for my aging body. The second reason it's easier to travel and live in Mexico if I'm on an oral medication that I can acquire over the counter and without a prescription. It's reasonable and I can pay out of pocket. We truly are in paradise for 6 months of the year and I don't want to give up my life. If AP works then I won't have to limit myself. For me it's worth trying again at this mild stage of the disease. Lindy
Lev, I hear what you're saying about being AP shy but since I have to be off all of my RA meds for 2-4 months then this is the perfect time to try AP. I also have concerns about the opportunistic side effects and diseases with AP but at my age I'm worrying more about the severe side effects from the biologics. For me it's a catch 22 situation. I'll PM you because I want some AP information that you have. Lindy
Edited to add part to Lev.
LinB2009-04-28 11:27:58
Hi Lev, thank you for your input.
I absolutely agree re:the gut/vaginal and urinary tract and antibiotic therapy. My personal consideration at this time is that I am unable to take any NSAIDS and I admit to being plagued by a seemingly never-ending series of aches, pains, and stiffness. I truly need some relief of the constant nagging interruption of my day-to-day life.
Antibiotic therapy as inflammatory control is certainly not ideal, but neither is an ability to live life without pain.
Everything is a trade off, a choice, a decision...it is unfortunate that many, if not most, of us have to sit down and make a list of those trade offs versus quality of life.
I am currently
wishing for a physical alteration that will afford me the opportunity to make a list re: biological therapy.
Cheers, Shug
ETA a missing "r", my left index finger seems to resist reaching for that key today...Spelunker2009-04-28 11:54:26LinB and Spelunker,
Have you considered rituxin? I'm certainly not pushing it. Rituxin works differently than tnf blockers. LinB, you would only have to go back every several months. As a matter of fact, it would be interesting to have credible members adding an anti-biotic, that would give the anti-biotic it's fair share of credit along with credit to the other drugs being taken.
LEV
[QUOTE=LinB]Good idea Shug. ... Isn't denial wonderful/scarey/dangerous?...
Lindy
[QUOTE=levlarry]LinB and Spelunker,
Okay,
I believe that if you and LinB go with an anti-biotic as a mix or by itself, neither of you are agenda driven and so we will be able to believe what yous say about the results and that's the most important part of the equation.
LEV
Lev, should I/my medical team decide to go with AP as an addition to my current therapy I will certainly provide updates. If the idea is nixed I will post that as well.
I want to thank you and Lindy for this rational, productive, and informative discussion. What a treat this has been for me!
yay! That was very nice to read! when a few sensible adults get together we can make beautiful music.
I will also be awaiting the results....
Thanks, lev, Shug and LinB
[QUOTE=Spelunker]Lev, should I/my medical team decide to go with AP as an addition to my current therapy I will certainly provide updates. If the idea is nixed I will post that as well.
I want to thank you and Lindy for this rational, productive, and informative discussion. What a treat this has been for me!
[/QUOTE]
According to Pipology, it won't work (AKA a built-in excuse for failure):
"Another thing you can't remember is Dr. Brown did a 'sink or swim' AP -
either you lasted thru the herxes or you didn't. AP is STRICTLY an
antibiotic. It's not even a probiotic and an antibiotic. It is NOT AP
if you use another DMARD with it - and that includes GoGo's wean from
mtx. It's not AP's fault if somebody didn't do AP because they were
using the other meds too. That supposed AP failure is the result of
the suppressent. Sorry if that bothers you - yet another biologic
failure. At best, with using both, you'll get a holding action.
In
reality - it will fail. That's the NATURE of a suppressent. "
http://www.arthritisinsight.com/forum/forum_posts.asp?TID=9762&KW=veeeery&PID=235523#235523For the time being I have excluded Pipology and will lean toward my medical team.
[QUOTE=Spelunker]For the time being I have excluded Pipology and will lean toward my medical team. [/QUOTE]
I should have added my medical team to the decision making process.
Another Piscean, We're not strangers to staying afloat and treading the waters. I don't like the word fail, it's not part of my vocabulary. I may not respond but I failure isn't an option.
I don't have any agenda except finding the right RA med for me and I'll share my story and success with everyone. I plan on keeping a daily disease activity log if I start AP. Lindy
[QUOTE=LinB]I may not respond but I failure isn't an option.
I know I really need to look at all sides here. I really appreciate my RD, she is open and kind and available to me (when she is not having a baby!) but I think our doctors can only work with what is available to them and when you get to the short rows, (a farming term) you have to get creative.
Waddie...deeeeepppp breath. Let's face it , sometimes treating our disease is a
crap shoot and the short rows need to be hoed to be productive (wow...that is an underwhelming mixing of metaphors, but hopefully you get my drift, say eh?)
I would think that the Enbrel would be to boost the action of the antibiotic and vice-versa. Earlier today Lynn posted a link to an article about combination therapy and its benefits. It is the combination that my medical team is looking at right now.
Please know that whatever your decision that I and others are right here supporting you and encouraging you.
Best wishes!
Thanks Shug, I so appreciate the support of you and others here. I have made some wonderful friends here that have given me a strength that I did not know I had. I am open to anything anyone has to offer and I will read anything anyone has to send my way. I know you all won't give up on me and that is enough for me to not give up on myself!
Thank-you Shug, and I appreciate your info!
waddie..
it does sadden me that you were fearful of making your plans known.... and that you too, misunderstood that the issue is not AP...... AP is a good choice for some kinds of RA and other issues/diseases..... but false inflated information about it or any other regimen isn't tolerated...
As you know, I wish you the best!! ....
Aw, Babs, I didn't mean it that way. I know the issue is not AP, I just did not want anything I had to say to be taken one way or another or misunderstood in anyway by anyone. And, I was still trying to process the information myself. I know how you feel, Babs, and I think you are a lovely person and would feel awful if I made you feel bad! I too believe we need truth and honesty in all levels of discussion of medication and treatment. There is a huge difference in fact and opinion, and just making that clarification might just be the answer.
Thank-you, Babs, and I know you do wish me the best!
This is the kind of discussion/conversation that I find interesting. I know several people with RA who use mino in conjunction with other RA meds. Double and triple combo therapy is a great option to treat RA and has been very successful.
I'm hopeful that all of you have good success with your treatment, whatever you choose.
I ran through most meds fairly quickly and didn't respond well to any of them except Humira. Unfortunately, I had an anaphylactic reaction to it and had to stop...As I understand it, Rituxan users are less likely to have issues with infections and so far, that has been my experience.
Hope you all start feeling better soon,
Lynn aka the grim reaper
For those wanting information about rituxin, probably Lynn49 would be the one to ask. I really don't see much risk with rituxin infusions but then I don't plan on looking real, real close either. I know that it is known to go very slowly with the first infusions because bad things can happen. But with the slow, slow infusion and the constant monitoring of all vitals and constant attention by the nurses during infusion, if one does have a reaction, they can quickly and safely counteract the allergic reaction. The plus is that rituxin takes away the realization of having ra for me. I had to have a very major surgery. I asked the ID doctor about having rituxin infusion about 3 months previous. Dr. Shuman said they weren't concerned about the rituxin. She said that my bcells replenish quite quickly. I asked her if I will have to continue to take the anti-biotics. Dr. Shuman said to quit taking the anti-biotics the day before sugery and don't take anymore. Tada. The best part is that I don't have to take the mtx, or weekly injections. I do take 5 mgs of prednisone because of adrenal insuficiency. I will start my wean next month.
LEV
Lynn,
oh waddie, I'm so sorry for you! I wish I could offer some helpful advice or insights but I'm so new to this disease. It seems crazily unfair to have this horrible disease and not be able to use the complete arsenal of medicines.
All I can share is what I learned when my baby daughter was diagnosed with one significant disability after another. Breathe in, breathe out. Take one step at a time. Repeat.
I'll be thinking of you.
Waddie,
My adrenal insufficiency has to do with my long term use of prednisone. The adrenal gland slows or stops producing because of the sufficient amount of prednisolone from the prednisone. I went down on my prednisone extremely fast. It didn't bother me until I went down to three mgs. Prior to surgery I was told to go back up to 5mgs. I just kind of continued on with the 5mgs. Will start next month to slow wean.
LEV
If you need to be brought back to reality and how fortunate we are, find some of the "old timers" those that have had this disease for more than ten years. Ask them about the "bad old days" and the crippling life that was almost gaurenteed.
LEV
Nearly every visit to the RD's office is a lesson in reality. In particular there is a wonderfully articulate woman in her early-to-mid 60's who has had RA for about 35 years. As has been mentioned before, joint destruction takes place early in active RA and her hands and feet are very crippled and many of her joints have been replaced.
Her attitude is certainly not crippled and she is a breathing example of seeking remission using all the means at her fingertips.
[QUOTE=waddie]Hey Lindy and Shug. I found out yesterday that Humira has failed me. I am unable to take Orencia due to my lung issues, my Rd also feels like Remicade is not the answer and I have the same reservations (my RD too) about Rituxan as Lindy. I am unable to take MTX due to nodules in the lungs and severe rashes. No Imuran due to prior issues with white blood cells, no sulfa drugs due to allergies, no gold due to liver issues. I am sure I have left out some therapy, but believe me, we discussed them all yesterday.
So my RD suggested trying uping the fish oil, (my suggestion thanks to Jas I know I really need to look at all sides here. I really appreciate my RD, she is open and kind and available to me (when she is not having a baby!) but I think our doctors can only work with what is available to them and when you get to the short rows, (a farming term) you have to get creative. [/QUOTE]
I am sorry to hear that, waddie. I hope the change in meds will help you.
Much and many hugs to you.
[QUOTE=Spelunker]
I would think that the Enbrel would be to boost the action of the antibiotic and vice-versa.
[/QUOTE]
In what way do you think Enbrel could boost the action of the antibiotic?
Pip
Good question Pip, I would like to know that too !!
Sorry to hear that Waddie.
I know just how you feel when there is nothing available that can help, I have watched my daughter in intensive care whilst whatever was wrong with her just took it's course because there is nothing they can give her to help.
Will be interested to see how you go if you choose to use mino - perhaps the combination of both will give some relief.
Keep your chin up, am thinking of you.
[QUOTE=waddie]
So my RD suggested trying uping the fish oil, (my suggestion thanks to Jas ) adding mino as a DMARD and returning to Enbrel because I did better on it than Humira. I will add she does not expect I will respond positively to the Enbrel. I am now wondering why even take the Enbrel?
[/QUOTE]
You might check out some of The Zone books by Dr. Barry Sears (a biologist, not an MD). In particular there is one called "The Anti-Inflammation Zone" and "The Omega Rx Zone." You can pick up used copies of either book from amazon.com for just a few $$$.
Best of luck.
[QUOTE=Pip!][QUOTE=Spelunker]
I would think that the Enbrel would be to boost the action of the antibiotic and vice-versa.
[/QUOTE]
In what way do you think Enbrel could boost the action of the antibiotic?
Pip
[/QUOTE]
IDK if SHug missed this or what but I'd like to take my own stab at it.
IMO... OPINION.. Antibiotics are DMARDS... DMARDS help enbrel do its job and vice versa....
Dear Waddie...You are always one of the first to be there to offer support to someone else. I hope you know that you are in my prayers and whatever road you travel I hope for smooth ride and the very best. Be sure to keep us posted as to what your Dr. plans for you.
Good Luck,
Pat
[QUOTE=Pip!]In what way do you think Enbrel could boost the action of the antibiotic?
[QUOTE=babs10]
There are no studies that I'm aware of using Minocycline with Enbrel or any other biologic. Have you seen any?
I just find it mildly amusing that the ARC calls it anti-inflammatory, ignores its antibiotic capabilities, and then find all these new antibiotics coming out - sort of a revamped Minocin. Seems they couldn't invent one that worked as just an antiinflamm without the abx component, so they time released it to get it back under patent.
Pip
[QUOTE=Spelunker] [QUOTE=babs10]
IDK if SHug missed this or what but I'd like to take my own stab at it.
IMO... OPINION.. Antibiotics are DMARDS... DMARDS help enbrel do its job and vice versa....
[/QUOTE]
Shug was out listening to Spanish guitar and enjoying an evening of tapas served with a very fine, old Spanish port.
Thanks for answering the question!
[/QUOTE]
Okay, now I'm jealous I am glad you are amused. No, I have not seen such a study, but then I have not looked for one either. Combination therapy is, however, the latest recommendations from many physicians.
[QUOTE=Lynn49]Okay, now I'm jealous [/QUOTE]
Well now you've gone and done it...The grim reaper is bereft of all happiness and incredibly jealous...It sounds like you had an absolutely fabulous evening. Yes, it was a wonderful evening and I am going to sit on the verandah and enjoy the perfume of the honeysuckle and jasmine and watch the crescent Moon sail across the sky to end the pleasant evening on a continuing pleasant note.
[QUOTE=Spelunker]Yes, it was a wonderful evening and I am going to sit on the verandah and enjoy the perfume of the honeysuckle and jasmine and watch the crescent Moon sail across the sky to end the pleasant evening on a continuing pleasant note.
[/QUOTE]
I've been scrubbing the kitchen and bathroom all day; I don't think you want to smell my "perfume"I just returned from dinner with my man to find this wonderful conversation going on. Thanks, Lyn and Lev for your info on Rituxin.
Waddie, Several weeks ago I felt just like you feel now. I felt betrayed by my meds. The reality of the situation left me desperate. It took several days for me to calm down and start thinking about other options.
You need to re-evaluate your whole lifestyle, physical limitations and complications, and medications that are available to you. Each of us are different; have different medical problems; have had different side effects; some are younger, some older; many of us have had RA for years and drift between stages of RA. We have to choose medications that are right for us based on our physical facts not just RA.
I also feel that MTX and AP may work well together. They have for others with mild to moderate RA.
Jas, that's what I was doing earlier today.....but I took a shower
Lindy
[QUOTE=LinB]... re-evaluate ...[/QUOTE]
That is certainly where I find myself. I did not think that re-evaluation, prioritizing, introspection, and leaning to pace myself would have to take place as often as it does, but there it is--the main focus once again.
Accepting my limitations (not only those brought about by RA, but also those keep pace with my birthdays) continues to be difficult for me, but each time I push beyond those limitations and then come face-to-face with the consequences I learn another bit of the lesson. I also have a very hard time asking for assistance, but am learning to do that as well.
Not too long ago I accepted that I was not either safe or comfortable driving my vehicle and traded a sporty truck with standard shift for a Highlander with big doors to facilitate getting in and out and an automatic transmission. I did, however, insist of pin stripping!
Shug, I had to laugh about trading in your vehicle for something easier on your body. I've done the same thing. We went to a larger truck with as automatic running board for me. It has wonderful, comfy seats, lots of places to stash things.
I've always drove sports cars but I had my last one in 2003. It was way too difficult to get out of and stand with my bad knees. I had sports cars for over 40 years and that was the most difficult thing to give up! I had a hell of a time accepting that. Lindy
Lindy, you advice is right on the mark. I had a small epiphany yesterday when, after a day of doctor visits for my mom and me, I was immobile due to horrible knee pain. "Dang arthritis!" I thought. Then it hit me, I should have been cursing the shoes I wore! I know if I had not had those shoes on I would not have had the knee issue! Something so simple, the car is low to the ground... the shoes have a little height to them (and they are cute too!) and a tiny bit of heal. Just enough to put pressure where it does not need to be on my knee. So I guess the shoes (they felt comfy too) go to the donation box...
[QUOTE=waddie]I know this is a small evaluation in comparison to what you are speaking of, but maybe that is just how far I need to go with my re-evaluation - down to the nth. [/QUOTE]
Waddie, not speaking for Lindy, but simply as an aside to what she will offer, it has been my experience that the evaluation MUST include the smallest of items. For instance, something as small as changing out all the doorknobs in the house from the standard grab-'n-turn to lever-type or adding padded grab bars in the baths.
At least for me the small evaluations take place in much the same way your epiphany regarding the cute, heeled shoes took place.
All my best to you and to your Mother, Shug
[QUOTE=waddie]Lindy, you advice is right on the mark. I had a small epiphany yesterday when, after a day of doctor visits for my mom and me, I was immobile due to horrible knee pain. "Dang arthritis!" I thought. Then it hit me, I should have been cursing the shoes I wore! I know if I had not had those shoes on I would not have had the knee issue! Something so simple, the car is low to the ground... the shoes have a little height to them (and they are cute too!) and a tiny bit of heal. Just enough to put pressure where it does not need to be on my knee. So I guess the shoes (they felt comfy too) go to the donation box... [/QUOTE]
Something as trivial as heel height can make a great deal of difference in how you cope with walking. I wear flats that have a good base - I love Flexies. I haven't wore heels in about 5 years. When I went to flats I was able to walk more and was much more comfortable. This past winter I bought a pair of black, evening sandals with about a 2" heel to match a beautiful black and white gauze evening dress. I wore them for 1 hour and happily gave them to my friend. It was a weak moment because I love girly, sexy shoes but no longer on me.
You must evaluate your kitchen and change what's uncomfortable. If you have RA friendly devices and a stool for sitting and thick mat for standing then it makes cooking more pleasurable.
Your bathroom also can be made to accomadate you in a friendlier manner. You may need a support in the shower, a stool, and reorganization of cabinets so that you can reach and find more easily what you need. Like Shug said, you should look at changing the door knobs to a type that's easier for you to use.
There are a million things we can do to make our lives easier but we have to evaluate, research, and ACCEPT that we need to do this.
Sometimes, it just comes down to simplifying and uncluttering our life. We may not have to do a lot of changes. I actually started with simplifying and uncluttering and that worked for a long time then I had to move on to making changes that made my life more comfortable.
Along with these changes come less stress. We all can do with less stress. Take care. Lindy
Shug, I had not really thought about the door knobs,
(it is the waffle weave liners that are used in lieu of terry bar
towels on which to tip glasses to dry and keeps barware from slippin'
and slidin'). We cut it is a variety of sizes to use to open bottles
and jars; squares of it keep bowls from skittering across the counter
when I am trying to whisk ingredients. I use pieces of it to grasp
dishes, cups, and glasses as I load and unload the dishwasher. Plates
especially have a way of slipping out of my grip and a dropped glass
smacking our concrete floor is akin to a hand grenade.
Over-sized
kitchen sponges and dish-washing clothes are another must for me.
Long handled combs and brushes help with hair care: a tooth brush and a water pick with
big
handles makes that chore easier; and shower dispensers are
indispensable. Bob bought me a lovely foot scrubber that attaches firmly to
the shower floor with a couple of different types of brushes and a pumice stone. A shower chair is
super and a long handled razor allows me to shave both legs and
underarms. Instead of trying to towel dry I have a couple heavy terry
cloth robes that I wrap in when my hands/wrists are aching. And of course no-slip strips, not only in
the shower but in front of the sink and commode prevent more than a few
opps! Grab bars with LARGE cushioned hand grips are spaced around the
bathroom to provide support, stability, and insurance against other
opps. A raised toilet seat and the sink cabinet raised to 38 inches
has made the b'room more user friendly.
Shug, do you know where you purchased the foot scrubber? Sounds ideal. I also use the shelf liner to grip, it works so well. A lot of these items I've had to get out of storage. My hands are taking a real hit since I've been off meds. One of my comfort items is a washable pillow that I use under my feet when I'm on the computer. I write a column and am a moderator on another non RA forum so I spend a fair amount of time at the computer. I take my shoes off and I have a nice soft pillow to rest my feet on. Makes a big difference. Lindy
[QUOTE=LinB]Shug, do you know where you purchased the foot scrubber? [/QUOTE]
Hi Lindy...it came from one of the online "medical supply" sites, but I am not sure which one and Bob is out running errands for me. It
seems like it was from MaxiAids.com, but then we all know about depending on my memory, say eh?!
.........long pause..............I checked the "order file" in the cabinet and of course cannot find the order for this particular item so it may have come from Bed and Bath!
Thanks, Shug. I'm on a mission. Lindyis this it?