What made you change? Did you tell the doctor you were leaving or did you just go? If you did not tell the doctor, why not?
Has anyone changed rheumatologists fo... - Lupus Foundation ...
Has anyone changed rheumatologists for treating your lupus?
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gazorpf
Lupus Florida
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Yes, I changed Rheumies because I was feeling so lousy and we were constantly butting heads about treatments. I have more than just Lupus, many of my symptoms overlap other autoimmune illnesses, yet he NEVER ran his own bloodwork. He strictly went by the standard CBC and the other standard one that the primary care runs every year. My new one does the same thing--is that common? No, I did not tell the old one I was leaving, I didn't think he would care one way or other. The month after I left, I got a letter saying he left the practice, so he was leaving and wasn't telling patients (at least not his problem patients) anyways. I know docs want to cure their patients and make them feel better, but Lupus (and most autoimmune diseases) can't be cured. My current rheumy has told me it frustrates him that he can't make me feel better. I told him I'm not asking him to make me pain free, just HELP me make my discomfort tolerable and work with me if treatments don't work for me due to my multiple chemical sensitivities (don't many of us have this issue??)? He said, "of course." Well, now that I'm off Prednisone which was his first order of business, he's telling me I have to walk and just wait for adrenals to kick in. He said I have anemia because of going off prednisone and that all red counts are low and debilitating fatigue will reverse when adrenals start working. My blood was tested 3 months prior to seeing him, wouldn't another simple blood test be in order? I asked, he said no. I have to wait till July. I can barely get out of bed and there's other symptoms that are getting worse, but I don't know if I should trust him or switch again, and to whom? Sorry I used this question to ask another Linda! But this is why I switched to begin with!
Did you go off prednisone all at once or did you wean off? How much were you on? Prednisone is a synthetic form of adrenaline. When you take prednisone, your adrenals might go into hibernation. It takes time for them to ramp up again. Walking is important in general, not sure how it may affect the adrenals. I was on 10 mg prednisone for three and a half years. It took me nine months to wean down from 10 mg to none. Each reduction resulted in fatigue and joint pain. My body would adjust, then we reduced the dose again. To this day I have a love/hate relationship with prednisone.
My blood test usually just few days or a week before the appointment, the lab would get the results in time for my doctor discussing to me about my currently conditions on my appointment day. She always give me the lab order in advance to take to the lab for up coming appointment.
I was on 10 mg Prednisone for 3 years and we reduced the dose by 1 mg per month. I reacted like you with each reduction. He told me once I finished the 1 mg dose to just stop. I thought I would go to every other day before stopping, but he said (at THAT time--I was at 3 mg), that the adrenals will probably kick in quickly! Yeah, has he met people with autoimmune illnesses? How long did it take for you to feel better after you stopped completely? When I had been off the Pred a month, the doc told me (in a patronizing tone), I could go back on the 10 mg and I could start the weaning process over again! I may have my brain dead moments, but I'm not an idiot! I don't want to go through withdrawal again! I think that's why I'm so ticked off. He acts likes I can control how my body reacts to this kind of thing! Any advice as to how to deal with the doc (switch again?) or the symptoms, I'm all ears! God bless you for your patience and understanding!
gazorpfLupus Florida
It took me 9 months to wean off the prednisone. It was over a year after I stopped that I still had extreme fatigue issues and some pain.
In acute illness, like a broken bone or infection the doctor/patient roles are clear. The doctor dictates and you are the doo bee. In chronic illness the roles have to be different. You and the doctors are partners in your care. Your job is to manage your illness day to day and to report symptoms. The doctor's job is to listen to you, educate and advise you. Most doctors don't get that. There are some techniques that help communication in some cases. Sending "I" messages like "I don't feel like I am being heard" work better than "You never listen to me." But it takes two people for communication to happen. You might make an appointment to just talk for 15 minutes. Write out your concerns and bring a copy. If you are afraid that you will get flustered just read it. "I am frustrated because I can't seem to get any relief. It has been several months and I still feel awful. What if the adrenals do not kick in? Is there a test we can do to see how the adrenals are functioning, etc."
Then check out the book, Full Catastrophe Living by Jon Kabat-Zinn. Let me know how you do!
Hello fellow current or ex Prednisolone users. I also have love/hate relationship with this drug. A year ago I was diagnosed with polymyalgia rheumatica inflammation of the muscles which causes dreadful pains.
I started with 15mgs and am now on 4mg daily. I keep trying to come down but the pains creep back.
I am now in the process of researching ways of boosting my immune system to produce my own natural seroids. I have learnt that Pantethine manufactured in the body from Vitamin B5 is essential for the proper functioning of the adrenal glands for the production of natural steroids called 'gluco corticoids'!
To-day I intend to visit my doctor armed with my questions . I realise there are very busy and quite honestly I don't think they know the answers.
I would love to contact anyone else who has this condition or similar. I have started to take magnesium and apple cider vinegar(with the Mother) and have also read that eating grains does us suffered no favours.
I would love someone to direct me in my efforts to wean me off these awful steroids - but that will not leave me to devastated with the pain
A further note of interest I was diagnosed with bowel cancer three years - fortunately did not need chemo-and the result is that I am left with a very short bowel which mean I should not eat too much fibre,etc. But I'm alive! I often wonder is the polymyalgia come on due to the trauma of this major operation.
Love to you all
Jean
I did change rheumy's but it wasn't because the first one was terrible, I just liked and seemed to "click" with the current one. I also prefer the hospital my current one is associated with (highly skilled physicians and a really good lab that produces consistent and accurate results) and her location is much closer to where I live.
I did inform my first one I was leaving (did this via a letter sent through the patient portal) and explained the reasons why I was switching. He wished me well.
I was fortunate that I had met two very qualified rheumys who were efficient and thorough in their treatments so I really couldn't have made a wrong choice.