Hi Folks, I have been on almost every Dmard there is including the biologics, I have either failed them or had an allergic type reaction etc which have made me unable to continue, so I am still on prednisone for 6 years. I have been diagnosed with severe RA, osteoporosis, ruptured discs and disc degeneration in my spine, facet joint inflammation in the spine, fibromyalgia, sleep apnoea, glaucoma, high blood pressure, high cholesterol, depression and anxiety, and obesity, the last 5 being attributed to the prednisone. I have a good rheumatologist who really does not know what to do with me anymore, he has along with my GP decided to send me to a pain specialist and wants me to start NEORAL, my GP wanted me to wait a while as I have started other new meds recently (neurontin and Kapanol, Pariet and Avapro) to make it clearer if there are any side effects from the Neoral, that we know it is coming from that and not anything else.
Anyway, sorry this is so long winded, I need your advice, since I have gone on the new medication, it has helped all my pain considerably and I don't know if I should start the NEORAL or not, I am frightened of taking it due to some awful experiences with DMARDS and also if I don't need it, why should I take it?
But I am wondering if the new pain drugs are just masking the underlying disease process. How do I know? My ESR still fluctuates, my joints have been really good until today, but if that goes away again, I don't know what to do, take them or not take them as they are quite toxic. I am scheduled to see my Rheumatologist in September but he has wanted me to start Neoral before then. I am going into the pain clinic for two weeks from the 24th to do a pain management programme and don't want to start any more new drugs now. Any advice? Many thanks for listening to me, kind regards Janie.
Jane, I have no idea what you need to do. I can see why you have so much pain especially with the back and spine problems involved. I think it is possible for pain medicines to mask the development of other problems.
I don't know anything about the Neoral or whether you should try it. But I would think that you need something that at least tries to control the pain.
September 24th is a long time to wait for someone who is trying to make such crucial decisions in their healthcare. I guess I would suggest doing as much online research on all the facets on your problems. Then, make a list of questions and get in to see your doctor sooner. Also, maybe consulting with a second Rheumy might bring a different perspective to the problem.
Have they done a consult with a spine specialist yet? Pain specialist can be really helpful, but they don't necessarily work towards correcting problems. But my daughter uses one and it is the only way she makes it through a day.
Also, I'm not real big about alternative meds, but some friends I know have had some good success with bringing a naturalpathetic doctor into the mix, along with their regular doctors. With you unable to take so many medications, this may be a path you might want to consider.
If the medications are not working to slow the disease, you have to find another way to turn off that overactive immune system. Stress has to be brought under control (we all have the problem). Some form of relaxation that works for you, listening to tapes, meditation, etc. I mean really look into this. Some people (not me, though I should try this) really have done some amazing things through meditation. Whatever form of exercise you can do, ROM, water therapy, etc., try and do. I realize that may be very difficult with your spine problems. Get with a PT or a fitness trainer that can help navigate you around those problems.
Do as many enjoyable activities as you are able to do. Tell yourself that you are going to fill each day with the best experiences, the golden ones and that you are not going keep any focus on the negative, irratating ones. Of course, you have to deal with life. But make your focus on those things that bring you joy.
Also, ask your Rheumy about any new studies that they are doing. List all the medications that you have had bad reactions too. How many of them are in the same family? When you are seeing doctors over several years, the complete picture fades. If you can come up with a complete list and your reaction to each, a pattern of types may immerge. This might help your doctors find something that falls outside of this.
I wish you luck. You are in a very difficult position.
I've been one of the lucky ones and almost every DMARD I've used worked....at least for a while. I really don't know your problems; but can imagine your frustration.
I only wanted to wish you good luck and encourage you to stay strong!!
Lovie
Janie, It is so hard to second guess the doctors. I would like to hear if you start this DMARD as my docs want to start me on a new one. I refuse to go back on pred. because of all the probems you describe.
I don't know the DMARD you are questioning.
I am sorry you are going through such a terrible time. I think we all ask the same question as you are asking yourself. I hate piling on the meds. I hope whatever you do - you get better. This is no fun and many of the people on this board understand. Pleasee keep us posted.
Sorry you are going through such a hard time. I'm allergic to all DMARDS and aspirin along with most antibiotics like sulfa and penicillin. It really makes dealilng with RA a challenge. Have you actually had an allergic reaction to other DMARDS (anaphylaxis or rashes)? If you have, the doctor won't want you to try new ones. I manage on Tylenol(extra strength) and a host of other non DMARDS. I think there must be a connection between severe allergies and drug reactions with at least some of us with RA. I also have OA, fibro, sjogren's, hearing impairment and diverticuliticular disease. I 've had skin cancer.
I'm leary of the holistic approach but have found help in warm water exercise classes, gentle exercise, physical therapy techniques, etc. I've tried some goofy diets that didn't work but the gluchhosamine/condroitin combination has helped with my OA.I don't meditate but I paint and that is a way of focusing on something positive other than the pain.
Hi girls thanks for the replies, I really do appreciate it, I have been on other boards and you don't get much interest or feedback which can be disheartening.Geez, Janie, you have a world of problems. I don't envy you any of it. But I must say that I think you are handling it all quite well, having taken every step that is possible for you.
I guess hang in there and keep believing that there has to be some answer for you. I've heard of them doing plasma transfusions, but not bone marrow. That does sound scary.
Yes, please come back and let us know how you do with this. Good luck with your treatments. I hope they help.
Since you have had real allergic reactions to those drugs I would have to agree that the prospect of trying another one would be scarey. My opinion, for what it's worth, is to pass on the DMARD for now. I would if I were you anyways. It sounds like you just have so much going on, but you have your pain under control and that is a good thing. Good luck!