I finally had my Rheumatologist appointment today and he does not feel I have PMR- Even though I have had a reduction in pain on prednisone, my SED is still 79 and my pain is inching back up, which in combination with other health factors and familial history, he feels is more indicitive of RA, or Chrones. He is tapering me QUICKLY to enduce a flare so that he can examine me when I am in pain. I am not looking forward to this. The prospect of Chrone's is upsetting as well, as my aunt passed away 8 years ago from Chrone's related complications. He also kept saying Lupis, which is what I have felt all along, but then kept going back to RA or Chrones. I just don't know what to think.
He is also very concerned since my resting BP was 153/96 and I am already on a low sodium/high potassium diet
Hi i can sympathise with you regarding getting a positive diagnosis, unfortunately the drs do not seem to be informed about these painful illnesses.i was diagnosed with fibromyalgia/ chronic fatigue about 9 years ago had been ill probably many years before that. I am now wondering if i have PMR i had a blood test yesterday to measure my inflammation and the pain only eases when i take predisolone.I have wondered along the way whether i had lupus, ms,arthritis,osteoperosis and probably many more.Not getting any relief from all painkillers including morphine make you wonder what on earth have i got. maybe this week will show i have PMR i will have to wait to see my dr and find out.Why do they think you may have chrones what are the symptoms? good luck
Hello heyyady, so, more uncertainty, but at least your rheumatologist appears to be being very precise, which is good. If I am right the SED rate will be raised if you have inflamation, but of course that inflamation can be anywhere in your body. I agree with Liz, what makes him think it's chron's disease? I was lead to believe that chron's has its own very specific symtoms, lower gut pain, diarrhoea, etc, has you been experiencing any of those symptoms? I know that Eileen often talks of some PMR patients that have originally mistakenly been diagnosed with PMR only for the long term diagnosis to be ra.
i can understand your apprehension about being tapered off the prednisolone quickly, I do sympathise, but provided he gets you back in his consulting room in haste hopefully you will not be left for months in pain. All of the conditions that he mentioned are all auto immune related, I think, and to some degree have symptoms that do overlap. And, his concern re your blood pressure which is high could be because of the prednisolone as that can cause our pressure to rise and of course if there is still inflamation in our bodies left untreated that can also make our blood pressure rise. I understand you are on a low sodium/potassium diet but you may also need some additional help to keep your blood pressure lower by being prescribed blood pressure tablets. That's what my Dr is considering in my case.
i am no expert but your rheumatologist appears to be being very through and often the road to a correct diagnosis can be a long one, but if he pulls his finger out and gets on with it promptly hopely you will experience the minimum amount of discomfort. All the best and do keep us informed. Christina
I think this man is playing with you! If he doesn't think prednisone is suitable for what he thinks is RA or chrones or lupus, which have very different symptoms, what other drugs does he have in mind for you? Can you put both arms above your head and get up easy from a crounching position? You might have PMR and other illnesses, has he thought of that?
I know it must be upsetting to have the feeling of starting all over again - but it does sound as if your rheumy is being thorough. There have been several ladies over the last few months who were diagnosed with PMR initially but have later had to reduce their pred dose to be examined properly - some of them at least had a rough few months but now have a diagnosis and treatment that is working. Usually it means a different drug which the doctors have fewer concerns about using long term - which has to be a plus!
As someone else has said - they are all autoimmune disorders (although Crohns is a bit different) and there is often overlap in symptoms or you can have more than one if you are greedy. He is at least being broad-minded about what it might be and not just saying "it isn't PMR, stop pred..." which a few have done without doing anything else.
Hopefully you won't have to wait too long for the flare - most of us would be there in days as soon as we reduced our dose! Good luck and do keep us informed of your experiences whatever it turns out to be.
This is my story also and the rheumatologist made me go off the predisone dropping 2.5 every five days. When I went back it was then take the predisone again and start methotrexate. I am in the process of going up in the doseage of methotrexate and dropping the predisone. It is a long slow process but he assures me the RA can be controlled. I was tested for lupus by my GP.
I am am no longer a PMR Patient but have severe RA.
I have been tested for RA and Lupus by my GP, which were both negative- but the rheumy wants me to retest at a different lab? And the Crohns is because I have terrible gastrointestional issues, severe food allergies, skin issues, and a familial history.
I'm still unsure about his methods. He kept repeating "Well, in MY 42 years of doing this" blah blah blah, but he didn't want to listen to half of my symptoms.
I'm just being sour about it.
Oh, and he has me dropping 5mg a week! I expect to be back to non functional in a week
Well yes - but it is because he wants to see your "whateveritis" in its full glory. If you have all those gut problems too then there must be something else going on too and really that needs to be sorted out as to wha tit is before you can say "PMR" - it is a diagnosis of exclusion and that means any other possibilities have been ruled out as far as it is possible.
When he is faced with a patient who is non-functional with things that are most likely NOT Crohns then he wil have to find an answer to that too. But if he doesn't LISTEN he won't the right answers will he? But I'd give him a chance before finding someone who WILL listen.
I was able to talk him in to 2.5 mg reduction every 5 days instead of 5mg a week- I am at 12.5 mg a day until tomorrow I go down to 10- I am SOOOO TIRED! I fell asleep, sitting up, watching a movie. I NEVER do that. It's like 10 o'clock comes around and I am suddenly drugged! Is this type of exhaustion related to the pred reduction?
Probably - but you are still at high enough a dose for you not to have to worry too much about an adrenal crisis yet. However - from 10mg on, if you feel ill and desperately tired all the time check with your GP, I can't find a link I can put here that won't be moderated but google adrenal crisis and look at the NHS article that should come up - it is simple, the one on this site is for professionals. Should you be really ill call 999 - and tell them you are reducing pred quite fast. Just in case. Have you got a steroid card? If so, keep it up to date. If you don't, write it all out on a sheet of paper and keep it in your bag - again, just in case.
That should be fun to figure out, since I feel ill and tired all the time as a matter of course.
You would be close to collapse - I don't think you'd miss it! It does get pretty extreme, worse than the usual...