Rheumatoid Arthritis Support Group

I have tried to stay positive about finding a new rheumatologist and having new tests, but I'm burning up inside and I need to vent.

After hearing the comments of both doctors in the new office I feel I have received horrible treatment over the past year. I was initially started with methotrexate and prednisone. Pretty normal. The prednisone turned me into a basket case. The 1st rheumie seemed to find that funny but I told him I wanted off of it so he started weaning me off. His office was very dirty and disorganized. I thought they must have just moved in. I had a skin reaction where they drew my blood. Next time I went back everything looked the same so I asked, and no they hadn't moved they've been there for years. The doctor prescribed Enbrel but never told me it was something injectable. When I called to ask them about it, it took 2 days to get a call back and they said I'd have to wait 2 weeks for an appointment for the nurse. I said forget it. How hard can it be. I'll just read the instructions and do it by myself. I had a full body itching reaction and let the doctor know but he didn't seem concerned. I had another reaction to that blood draw and decided it was time to seek out a new rheumatologist. I found a new one and started with him. After several Enbrel injections always with itching all over, but no imimprovement in the RA he said I should switch toHumira. At that point I was still trusting docs and went home and gave myself my 1st Humira injection. I itched everywhere so badly I wanted to tear my skin off. I called the doctor but he was "unavaiable" which I learned later was always the case. I called the specialty pharmacy in TN that sent me the medication and they had one of their specialty pharmacists call me back even though it was night time. He told me he didn't know why they would switch from Enbrel to Humira since it was even more likely to cause a reaction. He told me to load up on benedryl. The next day the rheumie called me back and wanted to change to Simponi. By now I was getting a little skeptical and losing that blind faith in the doctor thing. When I went to the new doctor last week she asked one question. Are you allergic to latex? I said yes. I she just rolled her eyes. she didn't seem to want to make any comments about the treatment I had received before coming to her. I looked it up when I got home and the injector pens have latex tips which can carry latex into your blood stream. Each time you expose yourself the reaction gets worse. Why didn't the 2nd doc know this? He said he wanted to put me on Orencia, but since I was going on vacation for two weeks we could start when I returned. I had a major probelm while on vacation. I couldn't even walk. When I called his office he was as usual "unavailable." I told them what was going on and how frightened i was and they couldn't have cared less. They said maybe he'll call you back and maybe he won't. I had given careful instructions about where I was since I was away from home. The doctor did not call me, but instead called in an rx for prednisone to my home pharmacy 200 miles away. When I returned from vacation and talked to the doctor about it he said he had staffing problems and he had corrected the situation and was very sorry. I told him very honestly. If I can't ever reach you, you could be the best doctor in the world, but what good does that do me? His staff dedicates themselves to avoiding even passing on a question to him. He said I should just insist on speaking to him. Fine, maybe things will improve. They set me up for Orencia and I started it the following week. I had home infusions done by an RN. The IV was no problem, but for the next four days I had nausea and a headache. When I saw the doctor next I think I had had the 3 loading doses and told him I still spent several days ill after each treatment. He just made a noise and made a note in the file. The next time the RN came to the house I told her about the reaction too. She said most people don't get that. Maybe the doctor could give you something for the nausea. Back in the new rheumies office the following week for the sonogram on my hand and he said he shouldn't be seeing the synovitis/inflammation if I had just had a dose of Orencia a week ago. I mentioned I had been feeling sick for a week since that treatment and he gave me a strange look and left the room. When he came back, he said oh your former doctor prescribed that not us. He wanted to know if I'd advised that doctor of my reaction which of course I had multiple times. He said I can't take any further doses of Orencia. That this was an immunological reaction and I probably had hives internally in my stomach and intestines. Lovely. No wonder I feel sick.

I called the 2nd docs office when I got home just to cancel an appointment I still had on the books with him. His staff showed their usual rudeness and inefficiency. An answering machine picked up and said I should hold, then a staff member picked up and said hold on and I heard her put down the receiver. the phone went dead and I got a dial tone. I called back and said oh I just got cut off and....I was interupted with a rude barrage about how she wasn't the one who cut me off because she hadn't answered the phone. Within my hearing a long conversation was carried out amongst the staff where they determined that I was the one who hung up. The women came back and I said yes, I heard and now that we've established it was all my fault may I please just cancel an appointment which is all I needed to do? She became very angry and rude snapping at me for my name and appointment. I gave my name and the date and she was just being so horrible when she asked me what time it was like I was a moron for not having said so, I just quietly said, I'm going to just let you look that up for yourself and hung up. My husband was standing right next to me and I said see? This is what ZI go through with this office. He went outside to tdo something. Meanwhile the office manager called and wanted to know about the phone conversation that took place. Stupid me thought she must have heard how rude the woman was and was calling back to apologize. Instead she grilled me on what was said and told me her staff member said I called her a bitch. I said that was an outright lie. I said no such thing. I don't even speak that way. She kept harassing me and when I told her I was going to hear any more about it she asked if there was anything else she could help me with!! I was so furious I went outside and told my husband. He was standing next to me and knew exactly what tone and words I had used. He called and asked to speak to the doctor and the office manager got on the phone and started in again. He told her he was in the room during the conversation and heard it all and that his wife didn't speak that way anyhow. He got no where with her so asked to have the doctor call him. When the doctor called he said his staff was not rude and had I cancelled my appointment. My husband told him he needed to work on customer care courtesy which of course was a waste of breath. My husband had to admit. Now I see what you've been dealing with. Also the prior week I had elevated liver functions so the 2nd doc switched me from methotrexate to Arava. My pharmacist was concerned and called me so I told him to hold off on filling it, that I was seeing a new rheumie the next day. When I asked her about it she looked at me like I had three heads and said you absolutely should not start taking Arava if you already have elevated liver function tests.

Sorry this is so long, but I feel like I wasted a year getting treatment that was poor to mediocre at best and malpractice at the worst. I have gotten progressively worse and worse over the past year. I recently have done hours and hours of research figuring I can't just trust what a doctor says to me. I need to understand not only how this disease works, but how the drugs work. With all my reading and notes and a new understanding I went to the new rheumie and openly told her I'm doctor shopping and right now I'm sorry but I don't know who to trust so please don't be offended. She said who had I been seeing and when I asked her if she knew them all she would say is we all know each other.

After looking at my records and history she said s=we needed to start from scratch. I hadn't had enthe right tests to determine what I did or didn't have. I just looked at my husband like this can't be real. AFter a whole year? She seemed very knowledgeable although not warm and fuzzy, but I can live with that if she can help me. I feel like I just spent over a year in pain and misery without proper treatment.

just as an icing on the cake the 2nd rheumie's office called the infusion company to cancel my prescription for Orencia they asked a lot of questions which I said I wasn't going to answer over the phone. Both the doctor and the nurse had been advised of the reactions I was having and they could talk to them about it. She wanted to know if I had a new doctor and I just said well I guess I'll have to won't I? The rx was approved for 10 treatments by insurance. The only reason they called to cancel it was pure meaness. of course I wasn't planning on taking it any way but people never cease to amaze me. I made the office manager mad so she figured she'd get me back. I am so thankful I have a new doctor and never have to go back there.

Okay I'm done. But no more blindly following for me. Everything will be questioned and I'll do my own research to make sure I understand what's happening even if I have to take a chemistry course. LOL
Posted on 11/06/09, 04:11 pm