Just beginning: I see the rheumatoid doctor next... - PMRGCAuk

PMRGCAuk

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Just beginning

1958hurts
1958hurts

I see the rheumatoid doctor next Friday to get diagnosed but my pcp and I believe I have PMR. Started months ago in my both hips. I thought I was just getting older and OA. But then 3 weeks later I woke up to hips and now both shoulders and neck. After a couple I could not handle anymore and saw my provider. She started in on a pred pack which helped within a couple of days but when when I got down to the 10 mg the pain and discomfort return worse then before. I am now on 20 mg daily. My CRP and sedrate blood levels were elevated but not horribly. Never heard of this disease before and know nothing about it. I am hoping you all can help me, and wish me luck at the rheumatologist office next week.

19 Replies

It sounds like you may have reduced too quickly. What dose did you start on and how long did you take to reduce to 10mg. Good luck with the rheumatologist.

1958hurts
1958hurts in reply to piglette

40 mg for 3 days then 30 for 3 then 20 for 3 then 10 for 3. But could not handle the 10 and was put back up to 20. Which is where I am.

piglette
piglette in reply to 1958hurts

My gosh I would have been flat on my back with that taper. It is usual to start at around 15-20mg, at 40mg PMR can be muddled up with other things. I was told to go from 20mg to 15mg and it nearly finished me and I went back to 20mg. As PMRPro says you are at the right dose now. I would stay on it for four weeks personally before trying to taper again, but slowly this time.

1958hurts
1958hurts in reply to piglette

Thanks. My family DO actually took me off all until my rheumatoid appointment next Thursday. He was afraid it would mask what ever the specialist needs. He said my sedrate (33) and CRP (1.2) wasn’t high enough to be PMR in his opinion and the steriods should of help by now. Taking for three weeks now.

piglette
piglette in reply to 1958hurts

Have you told your DO that 20% of the population do not show inflammation markers, you may be one of them! Also you should not just stop taking pred if you have been on it for more than a couple of weeks or the results could be disastrous. Can you get them to look tapering up somewhere as he obviously does not know about PMR, inflammation blood tests or steroid withdrawal.

PMRpro
PMRproAmbassador in reply to 1958hurts

Up to 20% of PMR and GCA patients have ESR/CRPlevels that are "in normal range" - though that doesn't always mean they are normal for them. Someone whose personal normal is 4 will have a fairly raised level if it gets to 18 which is still "in normal range". The rapid taper has clouded the view - the pred did help but 10mg wasn't enough and so the symptoms returned.

Your family doctor can't have it all ways!

Welcome to the forum! Stick with us (well others are more knowlegable than I as I have only been diagnosed with PMR 4.5 months ago). Much collective wisdom and support here.

I started on 20mgs and had a return of symptoms (a flare) due to the rheumys suggested textbook taper that was too fast. I’m now down to 11mg and tapering at my own rate.

I had never heard of PMR either, but have learned about the importance of slow pred tapering methods, self-care, and balancing activity, rest and healthy diet on this journey. I went through stages of shock, denial, and finally acceptance. Ive made some significant lifestyle changes losing 25 lbs and reducing my blood pressure meds in half.

Utilize the resources you have and feel free to ask us anything. Being part of this forum helps with isolation as well. We “get” one another because we face similar challenges.

Take deep breaths....it will get better.

1958hurts
1958hurts in reply to PMRCanada

Thank you.

1958hurts,

I am no expert but it sounds like PMR. Good luck at the rheumatologist !

Hi and welcome to the club that none of us wanted to join. It does sound like you have reduced the pred either too soon, too quickly or both. The “aunties” will be here when Europe wakes up they have a lot of sympathy and knowledge. What dose did you start on and how quickly have you tapered? Me I’m two and a half years of PMR and GCA. There is a lot of help on this forum, sympathy and sometimes a good laugh along the way. All good wishes with your rheumy.

1958hurts
1958hurts in reply to CT-5012

After reading on PMR I thought it was strange to taper so fast but she was the provider. I just wanted to feel better. I turned 60 in July, what a Birthday present. Thanks for all the support.

CT-5012
CT-5012 in reply to 1958hurts

Only a suggestion, try looking at some old posts about tapering and you’ll see what we mean about slow down it’s not a race. Two and a half years in and I am just down to 8.5mg my rheumy tried to get me down too quickly causing a flare last year, not good but he is learning to be more patient. 😁

Longtimer
Longtimer in reply to 1958hurts

I got the same birthday present as you at 60...but I wish I had been aware of this forum then, I had a rheumy that wanted me off pred in 2 years....well, that made me so ill....reduce very slowly...…..half a mg at a time when you are at 10mg, well that is what would have suited me...but we are all different....listen to your body not the rheumy...if you feel ill...

Good luck with the appointment...keep us posted.....

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to 1958hurts

Hi,

I guess as your doctor wasn’t sure about the diagnosis, or didn’t know better, she put you on a quick taper. That way if it hadn’t been PMR the steroids would have been easier to stop (after three weeks on them your own adrenal glands stop producing cortisol - which is what steroids are in a chemical form).

Have a read of this, so you are aware and may have questions for the Rheumatologist at your appointment.

healthunlocked.com/pmrgcauk...

Good luck

Welcome to this great forum - it will be one of the best things you can 'have' if your PMR diagnosis turns out to be correct. That taper seems way too fast anyway - and this is one of the main bugbears of this condition as you will see. However we have some fantastic people here with years of 'expertise' and personal experience and I'm sure they will soon chime in I'm sure with invaluable support and help when you need it. All good wishes with this journey - however it unfolds.

Rimmy

1958hurts
1958hurts in reply to Rimmy

Thanks. Besides maybe having PMR I am also a diabetic and with the steroids I can’t seem to control the sugars like I use to. Worried about how that is going to hurt me in the long run.

Rimmy
Rimmy in reply to 1958hurts

Yes you will need to keep an eye on all that as diabetes can also develop (a possible side effect) when on corticosteroids and if you already have that it will need some vigilance I imagine. But try not to worry too much there are others here who manage both conditions well and will be able to discuss this much better than me. One of the things which can be helpful is to keep weight under control when on corticosteroids by eating a low carb diet. Obviously this is also a 'good' idea if you already have diabetes. Many people do get concerned about gaining weight (another possible side effect) but many have lost weight by doing this and it is recommended. I hope you are at least getting some relief from all that discomfort - which is the best thing about taking Pred.

Hi! I’m also very new to this PMR, but very old with Fibromyalgia. I literally thought at first that it was a never ending flare of Fibro, until I was so depressed I had to see a doctor. Blood tests came and CRP 20 and SED rate at 68. So very high. Doctor not so sure PMR because I’m young... still, I feel so much better and less depressed because of less pain. Wishing you an excellent drs Appointment and continue to feel better!

PMRpro
PMRproAmbassador

I do wish I understood why so many in the USA insist on using these packs for suspected PMR. 40mg is too high a dose to get a good indication it might be PMR - 20mg should be plenty. Other things will respond to 40mg. And reducing at that rate always ends up with the same result! Never mind - you are at the right dose for PMR now.

This is a link to a resources post on another PMRGCA forum:

patient.info/forums/discuss...

where you will find links to reliable info about PMR. If you don't understand something - ask here! Someone will have been there...

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