So now what? | Arthritis Information

I have my next RD appt. next Monday. I am quite tired of this RA stuff. My joints are toast, I have gained weight because I cannot exercise and it just hurts too much to exercise.

Are there any new drugs out there? I have been on Remicade, Orencia, Kineret, Enbrel, and Humira. Three I had a reaction, two did not work. Because of my tendency to stop breathing I am NOT taking Rituxin. Perhaps I haven't reached that level of desperation but each reaction seems to get worse.

I also need to stop DayPro because of rectal bleeding. As before, I can only tolerate it for about a year. I have been on Naproxen, Relafen, Vioxx, Darvacet, Mobic, Arthrotec and countless of other NSAID type of drugs. Arava gave me uncontrollable GERD. Methotrexate does little to help me...I get horrible mouth ulcers. Plaquenil was useless. I am allergic to Sulfa so that eliminates a few choices.

Natural supplements? I have probably been on them all.

Currently I am only on prednisone and DayPro. Because of insomnia at higher doses, and psychotic episodes at MUCH higher doses I stay where I am on prednisone.

Any suggestions I can present my RD? He is usually willing to listen to any suggestions I can bring him. I think I would feel much better without this 40 extra pounds on me but with my dieting I cannot break through where I am without exercising. Aside from going to class I am pretty much stuck on the sofa all day.

Shandi

Shandi, It sounds as if you have tried everything. You must be so-ooo frustrated. I hope that someone knows of a drug that might help, but I don't know of any that you did'nt mention. I am also tired of this RA. As for the weight, I can tell you ,that when my doctor put me on the anti-depressant bupropion, that I lost weight. A welcome side effect for me. I started it Jan. 06 and was down 44 lbs by May 06. I did'nt diet or exercise. Just maybe you would have the same side effects... I don't know if you have ever been on an anti-depressant, but I was on Zoloft prior to the Bupropion and gained weight. Hope you get some good suggestions. GinniDear shandi, Oh my gosh you must be really frustrated. All the super drugs have not done your body any good. And they take so long to sort out ya or nay! I'm sorry to hear methotrexate/remicade hasn't worked but I also have had help from prednisone. Good luck and I hope with less pain you can figure this out, LOL!....sarah

Oh Shandi ((((hugs))). I can so understand how frustrated you are. But please do not give up. My daughter was just diagnosed with JRA and our doc told us there are new meds coming out. He did not say what they are because we were wigging out about daughters dx.

Ask your doc about a low impact exercise program. Is there someplace near you that you can take a water aerobics class? In a WARM pool.

Did you take folic acid with the mtx? If so, how much? I have had one mouth sore since being on it for about 8 months now. My hair is thinning and falling out tho.

I wish you the best at your next appointment. I am just out of suggestions for you since you have been on everything. Can you up your pred dose? As much as we hate pred it is that magic bullet sometimes. Ugh Shandi I wish I could be more of a help to you. Man I feel so bad I can't be. (((hugs)))

Shandi, I would be so scared and frustrated to be where you are at. Some people are just highly sensitive to medications. I guess if I was at the place you are, I would make a chart of each thing that was tried and the exact reaction to it. Then, I would look at all meds that aren't on your list and research them.

I would also list every alternative treatment out there, and any result from trying those. Some people have paired a good Nauturapathic doctor with their Rheumy and have got some good results. I definitely would check out the AP therapy if you are not allergic to antibiotics.

The other thing to try is locate any RA studies that are taking place. Some Rheumys and universities are really on the cutting edge of these programs.

Just don't give up because there have been so many new treatments available. You are just going to have to be your lead researcher in discovering a treatment that will work for you. I would definitely check out the recommendation for antidepressants as a possible aid. And since stress is such a big trigger, I would hit up a good counselor to delve into anything that might be affecting your health. I know that's a long shot, but that's where you are right now, long shots.

Do look at anything that triggers inflammation for you. One obvious one is diet. But I would keep a log of any triggers from stress, overworking, not enough sleep. Visit your local health food store and talk to the store clerks. Be careful and research. Anything you try, note your reaction to it and only try one new thing at least four days apart so that you can see what your reaction to it is. Be sure to check out everything you want to try with your doctor first as there can be reactions to your meds.

I hope this triggers some ideas for you. In the end, our treatment is in our own hands. Learn your body. Something is bound to work for you. Do not give up. You are obviously a fighter. Keep fighting. Your struggle might help many others. But I would love to see it help you.
I was also going to suggest you look into AP. The book The New Arthritis
Breakthough by Henry Scammell is a good place to start AP research and
web resources are www.roadback.org and www.rheumaticsupport.net. HI Shandi, I am very much in the same boat as you, with reactions to most things and I drive my Dr mad as I can't seem to tolerate many things, I am currently on Pred, with lots of side effects, weight gain being the worst for me. I have tried everything to lose it, but cannot exercise due to constant inflammation and pain. My Dr recommended a product to help me lose weight which is backed by the medical profession and it does work and it tastes yummy!!!!! It is called Kicstart and is available from pharmacies here in Australia. I have lost 10kg in 7.5 weeks, WITHOUT EXERCISE!!!!!!!!!! It is the only thing I reckon works for people like us, and my blood sugar levels have gone to normal also my triglycerides are at the best ever!!!!!!! Feel free to email me if you need any more info, best of luck, Janie. I am sure that losing a bit of weight will help my joints and the stress that they are constantly under. Currently I am back on MTX and I usyually can't tolerate it after 6 weeks, but presently I am doing OK, folic acid 20mg 12 hrs after 5mg MTX on Monday, 10mg next morning, 5 mg next, then another split dose of MTX 5mg on Thurs and same folic acid regime, hopefully this will help the horrible side effects of which I get the same as you. I also take Neurontin for nerve pain and that has helped d facet joint inflammation in my spine. Hope this info might help you.

As others said maybe the Antibiotic Protocol. I am in my 7th month and it does take time. Were you taking the oral MTX? My Dr read that we sometimes only absorb 50% of the oral and put me on injection.

((((Hugs))))

Hi shandy

Like you I have either no reaction or help from meds or really bad ones.I am on Humira at the moment but it doesnt seem to be helping.It is so frustrating especially as some people try one and it works wonders. I would suggest water exercise in a warm pool too and some people find yoga very beneficial.

AP therapy might be another choice as others have suggested.

Good luck