Comparisons.. different methods | Arthritis Information
I am tring to figure out what I should do... and getting input from everyone will be most helpful.
What regimen are you doing for your RA? (MTX, bio, pred, antibiotics, etc.)
How long have you been following this?
What positives have you encountered?
What negatives ?
Are you in remission?
Thanks all .. so much!!
every medication has its plusses and minuses. You are likely to get a lot of answers but here is my 2cents worth.
You can not rely upon others experiences to make your choice. There are simply too many variables that you are not aware of that affect these choices and reactions. Overall medical history and health, disease activitly and severity, lifestyle choices, side effect risks. For example someone that wants to continue a drinking habit may want to avoid MTX. I personally have chosen to avoid prednisone at all costs because of my weighing of the risks/benefits. For others that may be a drug of choice or need. for some people a particular drug may be a lifesaver for others may have hated that same drug.
Research the individual medications, not others regimines. Get your doctors recommendation and find out what his alternatice couses. Ask him a million questions about all the meds you researched. Then make a decision. Make it with people who know you and your case.
Babs10,
I agree with Buckeye. Treatment is as individual as the presentation of RA.
My person experience:
Plaquenil = This was the first drug I was on and although it was mild, it worked great for about the first two years. The only side effect I had was waves of nausea for the first week and a half.
Sulfasalazine = When the Plaquenil quit working, I tried Sulfasalazine. I had significant abdominal pain and couldn't even make it to the normal dosage.
Prednisone = After I couldn't tolerate the Sulfasalazine, I really fell back on burst-and-tapers of prednisone. Unlike most people, I have great side effects from prednisone. I sleep better, lose weight, feel better emotionally, etc. But, I was really having to take it all the time. As soon as I finished a taper, the flares would return. My RD only wanted me on it as a last resort, so on to the next drug.
MTX - I started on 7.5 and increased to 15 mg. I feel really yucky the day after I take it so I try not to make any plans. I didn't think it was doing anything at all until I had to stop taking it when I got Bronchitis. I was wrong. It was helping but not enough. So, added the next one.
Enbrel - Just two weeks after I started Enbrel, I felt so much better. I have absolutely no side effects, not even injection site reactions. I've been taking it since December and I'm doing so well (no flares), that I'm getting ready to start reducing the MTX. I feel like I did when my RA was mild and I had started Plaquenil.
Basically, I went with my RD's recommendations on my treatment, although he always gave me handouts on lots of drugs and encouraged me to research.
thank you.. both...I appreciate your responses..
While I do know that it is individualized and that we are all different.
My questions are part of my research to see what things I wish to try.
I'm very intrigued by the antibiotic therapy... and hope to learn more about that.
I am on 20mg MTX and I feel crappy for two days after now. Previously I had almost no issues w/ the day after except tired.
In my attempt to learn, in my attempt to bring knowledgeable questions to my RD, I was hoping to hear some responses and some ideas that I haven't, perhaps, thought of.
Prednisone - turned me into the megabitch. I was very aggressive and impatient (and I was eating us broke) so that didn't last long at all.
Plaquenil - I tried for a few weeks. Then my stomach went haywire and my hair started falling out big time so that was quickly ended.
MTX, 10mg - Started it 04/07 and I'm still on it now. It makes me feel hungover, increases the amount of hair I shed and from time to time gives me horrible stomach issues. Here lately the stomach issues have been occuring more often.
Enbrel, 50mg - I started this 07/07 and it worked for the most part. My fatigue was lifted and the pain was muted. My doc said it was keeping my RA under control, but then I started having "lupus-like" symptoms which could be caused by the Enbrel. (?)
Humira - I'm supposed to be starting this soon. It's just a matter of paperwork. I don't know what it's going to do to me. Hopefully it will take care of the RA with no side effects. (Ha ha ha...)
Vicodin - Taken as needed. Turns me into chatty Kathy and makes me constipated, which is always fun. Good times. I take it when I just can't handle the pain anymore.
Flexeril - Taken as needed. It seems to help occassionally, more not than often. I haven't had any for about a month and a half now. (Ran out of refills.)
Ambien - Helps get me to sleep and keeps me asleep for the most part. Yay for sleeping through nightsweats! Weehoo!!
You're making me work here, let's see:
1. Antibiotic therapy for 6 months, no change in symptoms. Homebound due to pain and swelling in feet and legs.
2. MXT for 6 months with no relief but started Pred. and had immediate relief. Enough relief to return to work.
3. Went into what doctors thought was remission but wasn't. Damage was being done.
4. Stayed relatively pain free for about 5 years, then major flare from hell hit.
5. Went back on Pred. and Enbrel
6. On Enbrel for a year and achieved a 50% decrease in symptoms.
7. Added MXT and got only a little better.
8. Stopped Enbrel and started Humira along with MXT but no change in symptoms.
9. Stopped Humira and started Remicade.
10. Symptoms were 90% better for a year till I had to have my knee replaced and stopped Remicade and MXT for 4 weeks. Then had to stop a month later for another surgery. Never was able to achieve the same amount of relief once I started back on Remicade and MXT.
11. Went back to Humira just recently along with MXT, Sulfazaline and have achieved clinical remission according to physical exam, labs, and mri.
Yes, it can be done but sometimes it takes a long time a circuitous road. It took 10 years for me to hit remission. In that time I've developed cardiac and pulmonary complications secondary to RA and PA. Also damage to fingers, wrists, knees, ankles and toes. If you don't achieve remission or a slowing of the disease in the early years then there are future complications that you will face. Take care and I wish you the best. Lindy
Modified antibiotic protocol - Minocin 200 mgs MWF (Zithromax T, Th added Oct 07 to address stalled RF and rising strep titres.
8/06
Positives - Got my life back. Can get on the floor and play with the baby - got yelled at by my husband for bopping around the kitchen yesterday to my Ipod (Kid Rock, Prince, Tom Petty) etc when my leg hasn't healed from my accident yet. I was getting down doing the dishes LOL. No pain. I'm Palindromic which translates to horrendous pain - so no pain, no lurkers since Oct 07 and only one 'niggler' a few weeks ago when stress level went to 50. I can mall crawl and when I do I take a day for it and hit about 3 - 5 malls. I like being able to dance again because my daughter needs help with dance routines for school. Oh, I can wear high heels again and my friend just gave me these fab CFMP's for the next time hubby takes me out (as if...but a girl can dream).
Negatives - AP is not a one size fits all protocol. The 2 basics are Minocin and probiotics and that's about it. But, if you want to 'go for the cure' you have to learn this stuff and figure out what your body needs. You cannot just feel great and just stop the meds (or in my case the probiotics) as you will relapse. For continued success you need to study and then translate what you learned into info that you can use to heal permanently. For me, I've learned that I can't do aspirin (damn!) because it effects my thyroids. Its a weird side effect so of course I developed it. But somebody not studying all the time would have assumed they needed another med for the fatigue that came out of nowhere. I posted, a friend found some info on a countraindication, I took it to my my doc, and am now off both meds and am my usual bright eyed and bushy tailed self. I learn about natural meds and things I can do to boost my Big 3 levels (calcium, potassium, and magnesium). I mean, it's a never ending process but I'm convinced I can make it 40+ years on AP even if I can't get my cure.
I am in remission via the biologic charts for remission. Morning stiffness lasts about 1 minute. All joints don't have pain etc. I am NOT in remission via AP standards as my labs have NOT returned to normal (RF still sky high and strep still not lowered). I think I have an underlying yeast issue that holding everything up. I'm hoping to hit true remission soon.
Hugs,
Pip
You've already gotten some good advice above, but since you asked, I'll share my progression, although I'm guessing it's not as typical as some.
Before the RA, I was already taking an NSAID and muscle relaxant for fibro, so my baseline there are Relafen and Skelaxin, both of which help somewhat and I have taken for a long time.
When I was diagnosed, my rheumy started me on Enbrel. No methotrexate (mtx) or anything. After spending some time on this forum, I asked him about it a month or so in and he added the mtx. After 3 months we decided the Enbrel wasn't doing anything.
Then I was just on the mtx, but my liver enzymes went up and he switched me to Arava. I had bad side effects from that and no improvement, so after a month or two, he switched me to Imuran.
I am still on the Imuran, at an increased dosage, and I am not sure whether it is doing much, but I am tolerating it well.
In November, I got two Rituxan infusions. My rheumy said if Enbrel didn't work, than Humira and Remicade are unlikely to either....this seems to be contrary to what everyone else is doing, BTW.
After waiting over 4 months with no improvement, I am now scheduled to start Orencia on Wednesday. I am still on the Imuran.
For pain relief, I am currently taking Vicodin HP (10 mg) every 6 hours. I have taken lesser meds and stronger meds, but this seems to be helping me as much as anything right now.
I have occasionally taken pred Medrol packs for really bad swelling, stiffness and pain, and for a short period took a regular dosage, but I don't find that it works as well for me as for most.
As you can probably tell, I am definitely not in remission, my symptoms aren't even well controlled. It can sometimes be a long and frustrating path trying to find the right treatment(s). In fact, I am already thinking about what to do next if the Orencia (w/Imuran) doesn't help (perhaps optimism would be more helpful, but I'm trying to be practical). I know that Actemra is set to come out late this year if all goes well, or otherwise I might be ready to try AP (antibiotics).
Quote
"I am in remission via the biologic charts for remission. Morning stiffness lasts about 1 minute. All joints don't have pain etc. I am NOT in remission via AP standards as my labs have NOT returned to normal (RF still sky high and strep still not lowered). I think I have an underlying yeast issue that holding everything up. I'm hoping to hit true remission soon"
Pip, If you were in remission then your labs would be normal. That's the primary criteria for remission irregardless of which therapy one uses - dmards, biologics, or antibiotic therapy. You can't be in remission with abnormal RF, seds, etc. Becaue you have no pain, doesn't mean you're in remission, it means that your Pal. arthritis has calmed. The above quote is confusing. Maybe you meant something else when you posted it. I don't know but remission is just that, no pain, normal labs, normal physical examination, and no synovial fluid lurking based on MRI. Lindy
No Lin, that's what I meant. I'd seen reseach on what constitutes remission on the biologics and they count a decrease in joints as 'remission', And in numbers. But not the same things AP docs count. For us, we have to be tottally 'clean'. They use that ARC 70/50/20 chart and if you go from 70 to 50 its remission. Give me a break. That's stacking the deck.
If you can, search AF - the posts and studies were there. I can't get their search function to work.
Pip
i agee whith buckeye and eveyone is different..
pred 13yrs.. no dmrd worked well enough to stop it god send for me
sulphalazine... never worked
gold injects.. worked but allergic reaction.. breathing probs
mtx 4yrs worked wonders.. stopped working
arava.. worked well.. affected my brain.. so stopped
plaquinell never worked.. ended up whith hand held heart monitor
after big bang in the chest.. but this has happend again on buscopan
so may not be related..
azathiaprine... stopped turned me grey really ill first dose
mtx restart... chest infections for 8mths ..stopped
arava restart... ice cold feelings in my legs.. went very aggresive . went into depresion stoped
depomedrol monthly injections... worked wonders... but got coloured vision
around eyes.. headaches.. swollen lips .. lump on leg .. massive pressure in
the head... steroid overload i think
just noticed you are on mtx and feeling yuky....
i took folic acid everyday except mtx day and metoclopramide a few hours before
mtx and 4 hrs after.. worked well... strange i had noside effects at all
1st time on mtx... simply stopped working
Hi Pip, here's the criteria from the Journal of Rheumatology re: remission.
Remission was defined as (1) American College of Rheumatology (ACR) remission (fatigue excluded), (2) clinical remission with no tender and no swollen joints and normal erythrocyte sedimentation rate, and (3) radiographic remission with no worsening of erosions and no new erosions from baseline to 5 years.
The newest thought on remission is to add an MRI to check on synovial fluid that's still lurking in the most prominent joints. Xrays aren't sufficient to pick up small amounts of synovial fluid. If the MRI is negative and the above labs and physical exam are negative then a diagnosis of clinical remission is made. RA factor can be elevated due to other reasons. Lindy
I don't know what the criteria for remission is for antibiotic therapy but I do know the criteria that's used for biologics.
Girl, I am so slammed - but I'm gonna try and find that info for you. If it were only one that I saw, I would agree it was some sort of abberation. Instead, there were some continous posts that all said the same thing. Maybe it's just in the efficacy studies and most MDs don't look at that. But it was noticible and I started calling it 'cheating'. My thoughts were it made the drugs look a lot more 'helpful' then they were. If I don't get to it in a few days - PM me please as I'd really value your imput and see if you see what I see.
Hugs,
Pip
Hey Pip, I know the post you're referencing but I can't remember where, how, why, what? I was going to respond to it but got side tracked with PsA pain from hell. We have RA and our memories are just that a memory! I'll let you know if I find it. LindyStarted sulfasalzine when I was dx'd 20 years ago
Went off that when we were trying to get pg with 2nd DD, had pg remission.
2 weeks after she was born had a terrible flare and started MTX
Stayed on MTX for the next 16 years, slowly increasing the dosage and enduring the slow progression of damage to my hands and knees.
Had a terrible flare 2 years ago, started Enbrel, went off and then back on MTX, but Enbrel didn't work, tried for 3 months.
Started Remicade and Prednisone. My blood work indicates it's working, but because of the damage I already have, I will never be pain free or have ROM in my damaged joints.
On a lighter note, I don't have any adverse reactions to the medication. I take Vicodin occasionally for pain, but have been off Pred for over a year.
Ninilchicken2008-04-07 10:29:30I really appreciate everyone taking the time to post. I can truly see the vast differences between all the regimens and each of us.
Please.. if you haven't posted, please do..
thanks..
It is an individual choice and you have to weigh the good with the bad, but here's my short history as requested.
Started with mtx and relafen in April 07, added enbrel in August 07. The combination seems to have taken care of the swelling, stiffness, etc. Not sure what my counts are for CCP or RF as those haven't been taken in the past year. Too soon to tell if this combination will continue to work, but feel I'm pretty lucky in that I'm able to continue to work and for the most part feel pretty good. Still fatigued at times - much worse the day or two after mtx, but I've learned to enjoy my naps on weekends and a quick snooze after work if needed.
Best of luck in whatever you decide.
My first line of attack was 75mg Pred (three days), tapering back to 10mg untill I had seen the specialist.
Then it was 10mg of MTX and 5mg of the Pred.
My current is 15mg MTX (weekly), 400mg Plaquenil (daily), Folic acid (twice weekly of 5mg), 5mg pred (daily) .
This is working ok but I am left with the side effects of fatigue, some dizziness, and some panic attacks.
I can live with that but I'm not working at the moment.
If doing some work I am spent at about the four hour mark and need to take it easier from there in.
I might add that I am more open to stress these days, does not take much.
Bodak2008-04-07 16:38:32I have a very short history as well.
11/13/07- Had a sudden onset and was diagnosed within 2 weeks. Was put on MTX started at 10 mgs. progressed and stayed at 15 mgs. per week. Folic acid 1 mg per day.
Put on prednisone-started at 10 mgs per day and increased to 40 mgs. a day over a 8 week period as I was getting no response to meds at all and was a swelled up, miserable with pain person who didn't want to live. Besides the awful pain my hands were useless- I could do nothing.
The day after the prednisone was jacked up to 40 mgs I turned the corner and was about 85% better. I continued to progress on a daily basis. 2 weeks later I went back to working my 2 jobs.
In mid Feb. I was told by my doctor I was in a medicine induced remission. My blood work was all in normal range. He warned he did not think it would last without prednisone. He has been tapering me and I am down to 10 mgs. a day. Still feeling pretty good- but I am anxious to have another blood work up. I still get right out of bed in the AM. But my wrists, ankles and my neck are often achey.
I forgot about the positives and negatives-
Positive- I made a tremendous comeback!
No problems with feeling bad on the MTX except fatigue and I just don't let it get to me.
My doctor was amazed and how well I did on such a high dose of prednisone-
BUT- it was lucky at my sickest that I lost 18 lbs. because I have such an appetite now! At first I didn't gain an ounce no matter how much I ate- then it started jumping back on 6 lbs. at a time.
Then I started to have to trim whiskers every morning- that bummed me out. However now that I've tapered the appetite and whiskers are tapering too.
So they are the negatives.
I literally woke up with my feet killing me. Lasted a month before I went to a doctor. Got the RA diagnosis put on MTX. Spent a month in bed sleeping only getting up to throw up. I went to the internet and found AP. Talked to my rheumy and he said if I did it, I would be in wheelchair in a year. I also spent a few months going the holistic method, lots of vitamins...
I left all that not looking back and went to roadback.org and found a wonderful doctor. It was a lot of two steps forward, one step back. It took two years to reach remission and that was almost 1 1/2 years ago.
Becky
I started on 10mg of pred, able to move pretty good which was nice cuz i was bed ridden before, couldn't roll over etc.
Then they put me to 5mg and started methotrexate and naproxen. I had a horrible reaction to methotrexate, i swelled up horribly so they took me off. Naproxen messed up my stomach so bad i had to stop that too.
Then they tried me on Arava 20mg, pred 5mg and ibuprofen, i had a bad asthma reaction to ibuprofen but didn't know what drug caused it, so they took me off all for 6 months which was extremely painful.
Then i was on celebrex and prednisone but celebrex swelled me so i had to stop.
Then pred and meloxicam, but meloxicam messed up my stomach.
So, now i am still on 5mg of pred, quite painful but doable. And arava 10mg which is doing ok, not sure if it is helping me, but it isn't hurting. I hope they up it soon. Been on it for about 6 months now.
So, prednisone is my #1 works for me drug. I find out in a week if my bone scan is good and how my liver functions are doing. I just hope arava likes me.
I have chronic bacterial vaginosis, it returns on it's own so i can't take biologics. I basicly ran out of drugs.
Back in the early 80's
Enteric coated Entrophen and extra strength tylenol for 3 years
Relafen for 13 years
Vioxx and Celebrex, a few months each... didn't work
back to relafen for 6 months
naproxen for 6 months
Mtx Dec/06-May07 - started to feel the benefits but the side effects were awful
June07 injectible MTX - side effects got worse
Low dose prednisone July-Sept
Plaquenil 200mg Sept-Dec. Increased to 400mg. Added probiotic to help with GI issues from the med. Plaquenil is working. My hands look so skinny. Wish the rest of me could look the same!
I am just a difficult one to treat. So i try, try again sometimes. I can not do antibiotic proticol as allergic to the antibiotics that are usually used. I have been sick alot and had been on alot of antibiotics for many months. Tryed Arava was allergic. Have been on Mtx for three weeks. Will start something else in about two weeks. Biologics are a possibility it looks like a probability. I just have to see what my body will allow. And what i will respond to. We are all different. I have also been on prednisone scince October 5th. I also take presciption Omacor for high cholesterol. It is made of consentrated fishoil fat. I take probiotics and i am big on vitamins. I have low potasium so i have a diet consisting mostly of meat veggetables and fruit. I do like an occasional bowl of oatmeal or rasin bran. I am just still in the learning process. My course of treatment has been plaquinil and other meds to treat individual side effects. I have recently gone off my meds and am a few days from being off the Nadolol. I have changed my life style by eating a healthy whole diet, exercise, and take better care of myself. Medication is not the only aspect of this disease. Many people here are way over medicated. Doctors seem to feel pretty free with writing RX. You cannot just look at medications as the primary treatment. You cannot have this disease and then keep smoking and drinking and eating unhealthy. Your body has warned you and is now in its own way, turned against part of you. When your inflammatory markers are elevated, it is not just from RA, or one problem. There is inflammation throughout your whole body and you need to take measures to bring it down and the way to do that is a total lifestyle change. I hate to see people pop so many pills to get through the day but then puff way on that cigarette. That seems so strange to me. Anyway, I wanted to mention other aspects of treatments besides medication.I am new to this disease, was diagnosed in August, '07. My RF and anti-CCP were positive although quite low, (RF 16.5, CCP 10), and I had an elevated sed rate and CRP, so I was diagnosed immediately, at age 55. One year earlier, I was diagnosed hypothyroid.
Aside from the initial 2-week flare that jumped from joint to joint, I have been relatively pain free and have not been on medication other than otc (aspirin, aleve). My last blood test in January '08 -- sed rate and CRP -- were within normal range. As happy as I was, my RD burst my balloon by telling me that I will eventually develop full-blown RA.
Since early March I have been experiencing joint pain, and once again, it hops around, lasts a day or two in my shoulder, then goes to the wrist, and day or two later the knee, etc. The level pf pain hasn't been quite as bad as my initial flare, but I am rarely without it and it seems to be concentrated in my shoulders. I have an RD appointment on Monday, 4/14, and I believe I will begin MTX, as that is what she said she'd start me on when the time came.
To concur with lorster's very excellent point, I do believe we need to take control, do our part, by making lifestyle changes. I am doing everything I possibly can to help myself. For example, I started a gluten-free diet, not just for the possible RA benefit, but also to help lose weight, which is slow but sure. I take 3 doses of fish oil daily. I walk, whenever possible, 2 miles a day, and go to Curves when my joints permit, usually 4-5 times weekly. Although not much of a drinker, I started enjoying a glass of red wine a few evenings a week for the anti-inflammatory benefit (I am going to miss this when I start MTX!!!). I read everything I can on the topic of RA but when I feel I am becoming obsessed, I step back. Above all, I remind myself constantly that there are millions and millions of people who would trade places with me, RA and all.
Hi Babs-
I've been researching AP and got The New Arthritis Breakthrough by Scammel which includes The Road Back by Dr. Brown. 15 testimonials and alot of information. Plus the Road Back Foundation website has a physicians packet with 12 page description of the protocol for AP which was fairly understandable even for a non-science person. You might check these out for info. It has been helpful to me.
Good luck.
Jan
Currently I don't take any medication. I follow a diet, since I can identify all the foods that trigger my RH. To achieve this I did an ellimination diet, you need to start from nothing to know what it is that's causing the pain. The diet is well mapped out:
http://www.frot.co.nz/dietnet/resources/ediet_howto.htm
http://www.frot.co.nz/dietnet/reviews/mcferran01.htmI also take supplements based on a practitioners work who has been there:
http://www.nutritionhelp.com/Prior to starting the diet I had a RF just over 100.
6 years on; last blood tests showed RF of 34.
I can reduce my inflamation rate to 5 if I really strick with the diet for an extended period.
Hope this helps.
That inflammation is the key to all the lovely 'side-effects' of these diseases. We have to cut it.
Pip
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