Good morning, today I have an appointment with my new rheumy, just to give you an update my previous rheumy took me down from 5mg pred to 2.5 for 3 days then stop.
I have been off for 2 weeks now, my CRP levels have risen dramatically, I have pain in my knee which is a TKR had it Xrayed yesterday the actual knee is fine it’s inflammation. Have it in so many areas of my body. I am so depressed that I have referred myself to MIND.
I’ve still got breathing problems from a 5 week old chest infection am now on a Sabutamol inhaler.
I have no idea what I am dealing with the previous rhemy said Polymyalgia does PMR present with all of these symptoms?
Where I am so depressed my family tell me it’s only Rheumatoid arthritis hundreds of people have it. I just cannot get through to them it’s not JUST RA. Far from it.
Anyway I’m hoping the new rheumy knows his stuff, well he is a Professor and also gives me my 6 monthly Osteoporosis injections although he won’t remember me I’m sure.
Thank you all for reading this, I read the posts on here everyday. It is a very safe place for me and full of understanding people.
Yours Sincerely
Linda
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Wonderfullifeandmore
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No wonder you are feeling miserable. We often face really dense misunderstanding and a lack of sympathy. The trouble is we tend to look well and our nearest sometimes do not want to acknowledge that we are genuinely suffering. This additional stress makes PMR symptoms worse. I hope the cruel comment was a one off. Have you had a look at FAQs. DorsetLady has written wonderful explanatory posts about all aspects of this disease and the management of it. Maybe the most sympathetic of your people would be prepared to have a read and understand.
Rheumatoid Arthritis is not to be dismissed I have friends and a member of my family who have suffered a great deal with it, there is no “just” or “ only” about it. It is a different disease from PMR and a good doctor will be able to distinguish the two.
My main concern here is our adrenal function hasn’t been considered by the Rheumy and unfortunately it can be the case that they have little knowledge of this aspect of reducing Pred. It is basic medicine/pharmacy too so no excuse. Depression and anxiety is one side effect of poor adrenal function along with fatigue, general aches and pains amongst others. You should never have Pred stopped that quickly and your doctor seems to think dropping the dose by 50% for 3 days and then stopping is slow when really it needs to be about 0.5mg every 4 weeks at least. It is very common that people’s adrenal glands don’t come back on line that quickly.
The problem with inflammation markers is that they can be increased by anything else such as a lingering chest infection for example. As for “only RA”, hmm, perhaps they should try it and try feeling ok because “100’s have it”!
5mg and 2.5mg are still high enough doses to keep PMR and other inflammation nicely at bay. I’m sure others will weigh in here.
This is from the FAQ’s and is essential reading for anyone coming down from 10mg of Pred.
I think a lot of people think Rheumatoid arthritis is the same as osteo arthritis which their Granny has. They do not realise RA is an auto immune illness. I do blame the press who definitely don’t understand RA.
Thank you so much for your very helpful replies, I have read the tapering advice posted by Dorsettlady and will definitely adhere to that when the time comes. In hindsight if only I had read that before following my previous rheumy’s instructions, although I put all of my faith In a Dr as one would, unless you experience otherwise which I now have. I will give you an update tomorrow after my appointment today. Once again I thank you all so much.
Hello Wonderfulliffeandmore, what a great nomme de plume! I just wanted to say I am so glad that you find this site 'a very safe place' for you, as so many of us do. Equally sorry, though, to hear what a tough time you are having, especially with people not understanding how you are feeling and dismissing your illness so readily. I do hope all goes well with your new Rheumy appt and look forward to hearing how you got on. Tempus👍
I do hope this rheumy has more idea about managing rheumatic disease than the previous one. Somehow, most of them in Kent I have come across are hopeless ...
I am really baffled that a rheumatologist is so clueless about inflammatory diseases and treatment as I've so often read on this site. I had the opinion that, they, more than any other doctor would understand symptoms, the causes, what to avoid, etc. My primary has referred me to a rheumatologist and I have to wonder if this person will have much understanding of PMR or will be dismissive. I've seen someone state some rheumys would rather treat rheumatoid arthritis -- maybe because of the arsenal of drugs now on the market? Maybe because of insurance, which seems to play into any diagnosis nowadays? Maybe we don't make doctors enough money? That being said, I've known a person with rheumatoid arthritis, the suffering -- my heart goes out with empathy to anyone who has this disease. I can't stress this enough!
I think it is a combination of a few factors, They are used to RA, it is a fairly clear diagnosis with "real" blood markers in the form of ACCP and they have a whole range of medications, starting with the traditional DMARDs and now a whole slew of biologics so there is a progression of management. PMR is a far more sticky diagnosis with no specific markers and only one drug, pred, and one they are terrified of using effectively for more than a few months at most. They THINK that PMR is benign and over in 18 months to 2 years - it isn't, that is quite clear to the rheumies who have really got stuck into it in the last 10 years or so. But established doctors think they know it all with PMR, it isn't a "real" illness and for some is "beneath" them, they aren't interested when it lasts longer unless the patient agrees to their demands to take DMARDs since it can't be PMR if it lasts over 2 years even though it is unlikely they will benefit from them. Insurance may be a factor in the USA, it isn't in the UK and Europe, but the UK has similar problems with rheumies. I haven't met it as badly here but we don't have that many to judge.
And there are a lot of rheumies who are simply overwhelmed with a specialism they didn't really know enough about when they chose it: they thought it would be no nights and weekends, no emergencies so would be family-friendly if you like. Depends on the system of course - my guy is in a system where EVERY physician takes their turns on nights and weekends for emergency duty in the ED and on the wards. They train and then are set loose on patients - and then they discover the truth: they left medical school convinced they were knights in shining armour whose task was to heal the world but there are no cures in rheumatology! And the task of walking with us, making our journey as good as it can be isn't the same. The good ones do it, perhaps they understood better what they were getting into. The less good ones lay the blame on the patients when things don't go as the doctor wanted or expected. And so we end up where we all too often are ...
Thank you for taking the time to express your educated opinions and knowledge. A rheumy is hard to find (as others have noted). I do not want to travel a great distance, so my upcoming appointment is with a male doctor with a different cultural background than mine. He does have certification which is a plus. I think (I hope) we are living in a time when women's symptoms are less likely to be dismissed as "neurotic" as was historically the case in much of the previous century. Online forums, such as this one, can give people hope -- and I note that nearly all commenters are women. Of course, our sex is more likely to get PMR (in part because we live longer?). However, my brother (a couple years older than I) also had PMR, successfully treated with prednisone. Anyone else on forum with a PMR sibling?
hi wonderful lifeandmore! Just remember people who have not had PMR , even the medical profession , do not understand how we feel. So many of us say family and friends make stupid remarks. I have had this awful disease for over 2 years and whenever people start making stupid remarks “isn’t your face fat!” , “ well you look ok”, I tend to either walk away or switch off, with the thought , “another idiot. “. Another one for people not to understand is the 2 or 3 years span. “Really?” They say in amazement. Meanwhile I am now down to 1mg and feel fine. When people ask how I am I just say “alive and ticking” because really they have now lost interest. Keep strong my dear, we will win!
Hi Linda. Chest. Give it time. About 25 years ago when I was definitely fit I had an atypical pneumonia at first inadequately treated, resulting in my being very, very ill. I was off work three months and then back at half-time. i started walking very small distances, very slowly. Six months later I was walking 10 miles across the Downs.
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