Meds aren't working anymore... | Arthritis Information
Well after waiting for 6 months for the imuran to work I felt really great for 3-4 months and then everything started going downhill and my prednisone had to be increased to 20mg. Of course I felt quite good on that, but the neuropathy is still progressing and affecting how I walk. I am trying to decrease to 10 mg (slowly) and all my symptoms are coming back with every step down, so I guess the imuran is not working. I know with RA the drugs tend to become ineffective after a while, but this fast? I really have got to get down on the prednisone, I hate the side effects. My options are cytoxan or go off everything and let the disease take over so they can make a more specific dx which might give me more treatment options. I am pretty sure I would not be able work if I do that and I love my job. I go back to the drs in a few weeks and I am hoping there will be a 3rd option, but I doubt it. Sigh....
Laker
Why don't they want to move you forward in the drug world?? Immuran is a pretty mild med, comparatively....
Hi Katie,
Because I lack a dx backed up by testing they are hesitant. But I have developed some problems consistent with the vasculitis dx in the last few months so maybe that will clinch it. They seem to think cytoxan is the next step and that it is too toxic to prescribe without certainty of the dx.
Gotcha. Whats cytoxan? And are you having more Vasculitis symptoms, than RA symptoms??
Yes, it is starting to look like that may be the primary disease.Aw, Laker, I'm really sorry to hear about this. How frustrated you must be. Besides the neuropathy, what kind of vasculitis symptoms are you having? Was your ANCA blood work normal? Is that why they don't have a firm DX? It seems many others get pretty strong drugs even while being sero-negative. I'm sure your RD has his reasons for being so cautious, and I guess that's a good thing, but you need help getting this under control. I am sorry to hear that, Laker.
I hope everything gets worked out quick for you.
Much Hugs
I had a positive ANCA once but never again, thought I was being treated each time they tested after that and I think ANCA can go normal during treatment. I also have low IgG but no seems to know why or what that means, my emg/NCV are abnormal. SED rate goes up and down, highest was 80. I had a sural nerve biopsy which was inconclusive, it was done at a time when I was feeling well and my dr thinks that is why. I would discourage anyone from having this test. Incredibly painful.
Symptoms I notice are very red skin even on my face, tiny spots all over my legs, random pain from inflammation in cartilage, joints and muscles, chest pains, blurred vision, progressing neuropathy, puffy hands, extreme fatigue, fuzzy thinking and memory trouble, aphasia, abdominal pain, parathesia including sharp shooting pains, tingling, sensitivity to vibrations, feelings of ice water running down skin, oh and my personal favorite and latest, bladder inflammation.
Now doesn't it seem like all that should mean something? I think they will do another emg/ncv this month and I have finally begun to see the paterns of symptoms and recognize and track them, so maybe that will help.
Feel sorry for my husband, he works so hard and then is stuck with sick me but is always so good to me.
Sorry for the long whiney post it is very disappointing to me to be like this again when I was so much better in the late summer and fall.
Laker
Oh Laker I am so sorry to hear that your meds are no longer working for you. I do hope the doctors can help you and help you to feel better quickly.
Do not worry about you labs not showing disease. Your rd should look at the total picture...not just what your labs show. My labs are never very high (always just slightly elevated) and I have a raging case of RA and I have some neuropathy issues altho my neuropathy is nowhere as severe as yours. It really sucks having the combo of issues and I really feel for you.
Just keep thinking that you were doing very well once...and you will do very well again.
Laker, I'm sorry you're in this situation. It is always a scary thing to me, that my meds will stop working. It seems like it goes that way for just about everyone at some point. Let's hope for the best, that the next thing would be just the thing you need and your symptoms will go away. Well, I guess that's the second best, the best would be complete remission. But I don't know if that happens with vasculitis.Laker, like you, my ANCA went normal after starting the meds but the neuropathy continues, so I guess that's a typical pattern. I so feel your pain (no pun intended, I just know what you're going through). I wish there was something I could do for you. So many of us here know how disheartening it is to be doing well, feeling great about life again, only to get slapped down when we're busy getting on with our lives. I suppose a better way to look at it is, thank God we have the meds to "step up" to even though we hate to. I'll never forget a neighbor of mine when I was a child. She was in constant agony with her RA and there was absolutely nothing they could do for her. We have so much available to us now. I'm hoping your doctors make the decision on how to proceed very quickly. You deserve to have some relief. Please keep us posted. Have you ever been examined for fibro? some of your symptoms sound like mine and I got a diagnosis of fibro in addition to all the others. Just a thought.Jesse,
That is interesting about the anca. I am going to ask about it. When I saw a vasculitis specialist this summer, she suggested I stop the meds so they could better dx me, but I was finally feeling good and starting to get the benefit of the immuran after being on it 6 months so my rheum agreed with me that I should continue treatment. It scares me, but maybe stopping meds is what needs to be done.
Reader,
There is some thought that I also have fibro, but I have not been dx with it, I think because I don't have enough of the pressure points. I'll ask about that too. Maybe Lyrica would help.
I need to remember how much better things are now. Husband's grandmother has suffered with osteoarthritis for many years and endures terrible pain with a smile on her face. I am blessed in many ways and if I had to quit working to sort this out, I could-I just don't want too!
Thank you all for lifting my spirits
Laker
Good Morning Laker. I totally understand the disappointment of coming out of remission. It's a disappointment that goes deep and there's not much that anyone can say that will help.
Why don't you talk to your doctors about starting Lyrica? If it helps, then you have a little bit of your life back. If it doesn't, that gives the doctors a little more information for putting the puzzle together.
I also had a job that I loved, volunteered in the community, held public office. I had to make a decision and retired and resigned from public office, and quit volunteering until I started to feel better. I really had no choice. I wasn't functioning at 100% and my job and activities required 100%. Once I made the decision I was relieved and was able to start the road to recovery. But that was me and you might not feel that way. For me it was a relief to cut my responsibilities by 50% and to have time to start the journey of recovery. It was the hardest decision I've ever made but I made it and never looked back. At the time I wasn't able to walk over 10 feet and had failed 2 DMARDS and a biologic. That was two and half years ago and now I'm in clinical remission. I can't go back to work due to the damage from RA/OA/PA but I certainly enjoy life more now than before. Even though we love our work, sometimes it adds to our stress and disease process. Take care. Lindy
Hi Laker,
Ron
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