Rheumatoid Arthritis - What is your relationship like with your RA Dr?
- Posted:
- 15 Jan 2011 by Branwen33
- Topics:
- cimzia, rheumatoid arthritis, cushing's syndrome, methotrexate, prednisolone, actemra
Details:
I've been thinking about trying a new RA Dr. All the stuff I've been reading always speaks of this wonderful "relationship" you should have w/ your Dr. (Which only makes since seeing how often I'm there.) And how all these treatmt options should be available & discussed to not just make life bearable but to ensure a greater quality of life. And when I ask my Dr what my options are his reply is that I should file for disability now & that they don't perform surgery to increase mobility just decrease pain. Maybe that is true but how do you tell someone that's not even 40 yet that they should pretty much just give up?! Is this that great re pore they speak of?? Or am I being unrealistic? I hate the thought of re establishing w/ a new Dr (I've been w/ this office 9 yrs). But I can see my hand/fingers starting to turn & typing is difficult & writing even more so. Isn't there something that can be done before the damage is too great or is this what the mean by "suffering with RA"???
Please tell me about your experience, diagnosis, RXs ect...
Thanx!!!
16 Jan 2011
I haven't been lucky enough to get a good RA Specialist yet, we just moved house to another town and the one I saw here just moved my arms and legs about took notes and sent me on my way without even a prescription! And charged me $210 for the privilege. He only comes once every two weeks to our town and the waiting list is long. So I think I may drive 130 km to see a Dr in Melbourne. It's been a struggle for the last 10 years trying to work out what I had and how to treat it. Yet my sister-in-law got to see a specialist and treated straight away. It's the luck of the draw, I really think you should at least be able to bring up your concerns and get answers without feeling stupid or feeling like you are wasting their time! So if you don't feel comfortable with them why pay your money to them? Transfer your file and notes across to another Dr if you like them, check out some first, find one you relate well with and can talk to and be LISTENED to and get them to request your medical notes. Hope this helps.
A second opinion isn't a bad thing!
16 Jan 2011
Are you on meds at all for RA? You didn't say. I can not imagine an RA doctor not offering different options, such as one of the biologics. My hands also turned, and I even had an operation on one, before it got too bad to be corrected. I am on one of the biologics; the Dr and the patient make together a decision which ones to try. This is the third one I've been on; had to see which one worked best for me. Sometimes it turns out to be trial and error. I am happy with my specialist. Is your Dr a specialist?
17 Jan 2011
Branwen33,
The rheumatologist that first diagnosed me with RA was rude & miserable! She offered minimal hope and should have her license revoked! I stayed with her for almost 9 months because I didn't know anyone else! Of course my husband thought I was overreacting and went with me one day. Boy was he shocked! We left her office and went straight to the computer and phone book. I opted for a physician associated with a major teaching facility, with active research and trials. It is a huge practice and at times, I do feel like a number and not a patient. However, my physician was wonderful! He said to give him a year, and he will have me functioning as well as last year. That was about 3 years ago, and he did. I really have minimal symptoms now. It is very important that you find a physician that you are compatible and comfortable with. You must trust him/her. Keep looking. This is your body and your life. Remember, you have a right to quality health care!
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I just started Actemra-Monday's my 2nd treatment. Tried most of the biologics & none seemed to really help. I was in a Rituxam study for almost 5 yrs but felt it had stopped working like it should.Staying hopeful that this new type of RX will be "the one".
My Dr is a RA specialist but we dont seem to get along. The women I saw all those years have now left the practice. At one point he even told me that I needed to stop acting like a child when I got a little teary describing how bad I had been feeling & scared of how my hands were starting to look! I couldn't believe he would be so cold. I just wonder how these people would react if it were them?
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So what made you decide to have surgery on your hand? What did they do and how long did it take to recover? My wrist is almost completely fused (naturally) which seems to be making the fingers turn out. I'm afraid if I wait it will be harder to fix but the RA Dr talks like it's not an option. But how am I suppose to continue working if I can't even write?? It's amazing what I can now do left-handed but that's not the point. Some days I can't touch my face w' my right hand. None of them can imagine what that does to you mentally if nothing else.
Thanks for your reply & time. The isolation of this disease is really starting to take its toll! I hope your RX works well for you!
Well, you have quite a history at such a young age. I had silicone replacement of the knuckles of my R hand and carpal tunnel to straighten out the hand. It took a couple of months; I was driving before 6 weeks.
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Sorry how you feel towards your rheumi. It sounds like he's trying to help though. We are each different, and I can't imagine how they manage all their cases. You may not like my thought on this, but if I were in your situation I would try and change my own perspective on what's happening. I have about 30 years on you and have learned from some experience. I would try to find anything positive that's going on and expand on it. For example, the fact that you're getting good with the other hand is a positive thing. Try showing your lighter side when you visit your rheumi. Try to believe that this new med is going to work for you. Think positive and you may be surprised what may happen. Smile at your rheumi and see what happens. Your emotions are based on your fears. Fears are really False Evidence Appearing Real (past data that you remember). Turn Fear into "Feeling Excited And Ready". This always works for me. Wishing you the best!
I believe I do try to have an "attitude of gratitude" & everyone always says how upbeat & positive I am (considering). But if I can't be honest w/ my Dr who can I discuss my true feelings with? Maybe part of it is I'm afraid if people can see the RA (hands turning) they will treat me different & I want so very much to be "normal" as long as possible. There are plenty of times that I could lay around or call in because I don't feel good but by me pushing myself I've been able to continue working at least.
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Your words of wisdom are heard & heded (FEAR, really like that)! In all reality I know I need to come to grips with all of this. You would think after having it 20 years (I was 19 when diagnosed) I would have by now. Funny thing is that I think I'm just now getting through the denial stage. By me reaching out, I am hoping to meet others, like yourself, that have been there & done that. Your advise is truly appreciated!
Do you have a local support group you attend? There isn't one that I have found (which is crazy considering I live in the retirement capital of the US). Some have suggested I start one but I wouldn't know where to begin. Bottom line - I fear that I have become my disease and I will die crippled & alone!
Sorry to carry on. Maybe I need a shrink. I should delete all of this & be graciously accepting of your words but it is what it is. I will at least go to my treatment today with a different attitude.
Thank you again & thank anyone for "listening"!
Sincerely ~W