Prednisone initial dosage and tapering off - PMRGCAuk

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Prednisone initial dosage and tapering off

Cpires2323
Cpires2323

So happy to have found this PMR community and support group!

I’ve been reading about PMR quite a bit the past few weeks and most articles say you should stay on it for at least a couple of years, so I am now familiarizing myself with my own situation....

After feeling miserable for about 2+ years with extreme fatigue/lethargy and only getting worse (and unfortunately no real diagnosis from my primary care physician)... in the last couple of months the pain in my shoulders, hips, thighs, and neck have gotten so bad that I could barely move. Only then I came across what are the PMR symptoms through my own online research and realized it was very close to how I felt.

Scheduled an appointment with a Rheumatologist and bingo! It may very well be it! I understand there will be a long recovery road but just knowing I’m not crazy and I’m not making this feeling of malaise up in my head (and that I am not just being lazy), makes me feel more optimistic about the future.

He requested an extensive list of tests/blood work to confirm. But decided to get me started with 15mg of prednisone right away for 1 week, 10mg the following week and 1 more week at 5mg.

QUESTION: Is this the norm for some people?

He scheduled a follow up appointment in two weeks to review the blood results. So hopefully, by then the prednisone will have kicked in already (started yesterday) and together we’ll be able to figure out the long term course of treatment.

Can’t wait to start working out again and not feel miserable (so exhausted and in constant pain) anymore! By the way I’m only 50 and used to be very athletic until 2 to 3 years ago when the fatigue and lethargy (which My primary care physician assumed -and so did I- was related to stress and overwork) slowly creeped in...

QUESTION: anyone in similar situation?

So grateful to be able to talk to people that can understand me. 😅

Hope to continue exchanging our journeys through this channel. 💕🙏🏻

Thank you! Namaste.

29 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi and welcome -

“I’ve been reading about PMR quite a bit the past few weeks and most articles say you should stay on it for at least a couple of years, so I am now familiarizing myself with my own situation....”

actually you need to stay on it as long as the illness is active - and that could be 2 years, could be 4, could be longer. - we never know at outset.

The trial your Rheumy has put you on will hopefully confirm whether PMR or not. With your age and ethnicity he may not be sure - but latest info states it’s quite usual in 50s If it is you will need a much longer regime.

This might give you a bit more reading - from a patient’s viewpoint though - healthunlocked.com/pmrgcauk...

Please ask any further questions - and keep us informed of how you go on.

Thank you so much for your reply! Will continue reading more and educating myself about it. And will be sharing my experiences here as well. Thank you!

Welcome, let us know how you get on with your follow up visit.

PMRpro
PMRproAmbassador

After 5+ years with symptoms but no diagnosis I was started on a taper to get me over a working trip to the USA. I had 2 weeks each of 15, 10 and 5mg. Within 6 hours of the first dose I could move normally, within 6 hours of missing the first 5mg dose I was in a worse state than before - but the rheumy wouldn't accept it was likely to be PMR.

Cpires2323
Cpires2323 in reply to PMRpro

Wow! Thanks for sharing your experience. What happened next?

PMRpro
PMRproAmbassador in reply to Cpires2323

I saw a different GP - the only one in the practice who seemed to know about PMR/GCA. No argument from her and she handed out pred. Then I saw the rheumy again, or rather, I had a follow-up for the diagnosis. But they handed me over to a "GP with a special interest in rheumatology" who simply repeated the first appointment actions and admitted he hadn't a clue and fetched the boss- he didn't want it to be PMR, gave the impression that was below him. All the options he'd said were more likely had been ruled out by then but he was "sure" it was an inflamamtory arthritis despite no joint problems at all. He wanted me to start on sulphasalazine but for that I needed a consultant to monitor me and I was about to move to Italy. No-one here has ever disputed PMR.

Cpires2323
Cpires2323 in reply to PMRpro

Oh! Wow! How frustrating. It seems you have a good GP now that is helping you through the process correct?

I’ve been reading some stories that give me a chill. I hope my diagnosis is confirmed and that prednisone works well for me.

I will keep you posted. Thanks again for sharing your story. 🙏🏻

PMRpro
PMRproAmbassador in reply to Cpires2323

I have 4 very laid back doctors who are more interested in quality of life than anything else - in general, I live pretty well :)

Louisa1840
Louisa1840 in reply to PMRpro

Hello Pro,

I researched "Inflammatory arthritis" as it is supposedly what I have with PMR on top, only to find that PMR was listed as a form of inflammatory arthritis. More & more confused........

PMRpro
PMRproAmbassador in reply to Louisa1840

There are some very out-of-date sites around that still insist on talking about PMR as an arthritis. But since an arthritis predominantly involves joints that leads some doctors to reject the muscle problems that are the bulk of the disability in PMR.

Recent work on the pathology of PMR declares it to be a musculotendinous problem - the muscles and tendons surrounding the joints

jrheum.org/content/46/12/1552

It is a rheumatological disorder - maybe it is all semantics! But a problem I see is that by calling it an inflammatory arthritis it encourages the idea that DMARDs will work in PMR because they work so well in inflammatory joint disease. They don't always.

Louisa1840
Louisa1840 in reply to PMRpro

Thanks so much Pro. The link is really interesting and raises a lot more questions I have had particularly re a link between PMR & GCA. It is all a bit above my head unless with a medical dictionary alongside. Is it saying that TCZ is worth a try for recalcitrant PMR? I know people on this site are on it.

PMRpro
PMRproAmbassador in reply to Louisa1840

Probably - it should work and the pilot studies suggest it will. But it isn't likely to be generally used for PMR - it is a very heavy duty drug and very expensive, financing it would cripple any health service.

Sorry - it is hard going! Have you seen this:

academic.oup.com/rheumatolo...

where at least Fig 1 is easy to get the gist of!!!! It is about the relationship between GCA and PMR.

Louisa1840
Louisa1840 in reply to PMRpro

Thank you Pro! Yes, liked Fig 1.....................

I echo what Cpires says (below me). Thank you so much for sharing all your knowledge and expertise so readily.

PMRpro
PMRproAmbassador in reply to Louisa1840

I wouldn't claim expertise except of the practical experience variety!

Louisa1840
Louisa1840 in reply to PMRpro

Isn't that the best kind.........?

PMRpro
PMRproAmbassador in reply to Louisa1840

You'd think!!! I think a lot of doctors need to walk a mile or two in our shoes!

Cpires2323
Cpires2323 in reply to PMRpro

Thank you so much for helping all of us and guiding us through our journeys based on your own experience! 🙏🏻

I was started on 15mg in January - pain gone in 6 hours. Did too much the nexy day because I felt so well. Stupid.

Went on 12.5 mg after 3 weeks, then to 10mg after another month. After six months pain still absent - but not the extreme fatigue and other stuff. Rheumy kept me on 10mg for 26 weeks (too long IMO) and wanted me to reduce overnight to 7.5mg so I sacked him and went back to my GP who agreed that I don't need a rheumy any more and agreed to a very slow taper to 9mg in two months and then 8 mg in another two months. Today was my first day on 9mg and I plan 6 days again at 10mg, so not expecting any withdrawal symptoms yet (or not at all as I'm tapering so slowly).

Excellent that you had all the blood tests - monthly for some is recommended. Your taper so far seems rather fast.

It seems possible to me that you are expecting to do too much too soon.

Take care of any stress - I suspect that it was this that contributed to my PMR.

Welcome and you will find many stories and some excellent advice and help here.

(Edited to correct taper times.)

Thank you so much for sharing your experience! I look forward to sharing more and getting tips from everyone based on what works for some or not.

Today is my second day on prednisone. I’m not in excruciating pain but I can still feel pain in my hips (depending on the movement), knees and thighs.

But I will definitely ease my way back into my exercise routine so I don’t mess things up.

Thanks again so much!

Do not reduce until you are pain free, the plan you have been given is extremely optimistic if not foolish, when you do decide you are well enough to taper then do it by no more than 1mg at a time and the same rules apply only reduce again if you remain pain /symptom free.

PMRpro
PMRproAmbassador in reply to Polymialgia

This is a common diagnostic approach - does a moderate dose of pred achieve a reduction in pain? By doing it as a standard reduction over 3 weeks, if the starting dose has no effect it will be possible to just stop the pred without more ado and then look for another diagnosis.

Thank you so much!

Good morning you appear to mirror myself except I am 75 yrs all would say is that the suggested taper may be too much too soon. Try it by all means but be prepared for a flair the other point is you will have to limit the working out. I played golf 2rounds in two days walking and I will be resting totally for the next 2 days I have a pain in my right knee today

which is where the original problem manifest itself. Good Luck

PMRpro
PMRproAmbassador in reply to Billhill

This is a common diagnostic approach - does a moderate dose of pred achieve a reduction in pain? By doing it as a standard reduction over 3 weeks, if the starting dose has no effect it will be possible to just stop the pred without more ado and then look for another diagnosis.

Cpires2323
Cpires2323 in reply to Billhill

Thank you so much. This is great feedback.

For what it’s worth I think to start at 15mg and drop so fast to 5mg is potentially setting you back. I started 19months ago on 15mg - miracle cure in 48 hours! I then started tapering - much slower than you are going to do but had a massive relapse at 3mg that needed 30mg a day to bring under control. With this disease you need to be in control and never go lower if you have any pain. You will know in a day or so if it is PMG you have. Good luck and I wish you all the best.

I started at 15mg and stayed on that for a month, then 12.5 mg for a month, 10 mg for a month and then dropped 1 mg. month until I got to 5, then dropped by 0.5 mg a month. Now at 2 mg, some tapers better than others - am beginning to doubt my pill cutting as the drop to the x +0.5 doses seem harder! Have tried various remedies as well as the Pred - just started a course of acupuncture with a lovely lady

PMRpro
PMRproAmbassador in reply to Arflane97G

But the percentage change in dose is much higher - you can't just go on absolute figures.

Arflane97G
Arflane97G in reply to PMRpro

Very true

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