Visit to Arthritis Doctor: I want to thank... - PMRGCAuk

PMRGCAuk
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Visit to Arthritis Doctor

29Pain00
29Pain00

I want to thank everyone that responded to my recent request about PMR affecting hands and feet. I went to my arthritis doctor yesterday and she still is not convinced I have PMR. She wants me off of prednisone as soon as possible. I am tapering but not as quickly as she would like. If she can diagnose me with something besides PMR and has something that makes feel as good as prednisone I say go for it. In the meantime, I will continue to slowly taper my dosage which is currently 10 one day 9 the next. Next week I will do 9 daily for 3 to 4 weeks then 9/8. I have gotten to 8 twice before and then ended up back at 10. This time I am going much slower. Again thank you for all your responses. I am so happy I found this great group of people to communicate with.

14 Replies
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Good luck!

29Pain00
29Pain00 in reply to HeronNS

Thank you

Don’t be forced to rush the taper. Stick with your plan. It took three attempts for me to get past 10mg - presently on 6mg and progressing slowly. Slow and steady wins the race. Good luck!🌻

Hidden
Hidden

THe problem is that, apparently, many people who are diagnosed with PMR actually have late onset rheumatoid arthritis. One indicator of this can be difficulty in getting below 10mg of prednisolone. Another can be problems with peripheral joints such as in the fingers. However, one might expect that other markers such as rheumatoid factor would be elevated. Taking prednisolone at more than 10mg for a long time has problems, even though it can be effective, and doctors prefer to use other disease-modifying drugs if it is rheumatoid.

I'd be tempted to ask her if she has fully investigated you for other inflammatory arthritis. It is a bit of a minefield because blood tests and xrays don't always tell the whole story.

PMRpro
PMRproAmbassador in reply to Hidden

I struggle to get below 10mg pred - I don't have any signs of inflammatory arthritis despite the second rheumy I saw being desperate it should be. Over 10 years later nothing has changed. But now I also need more pred because the inflammation makes my atrial fibrillation worse.

I wouldn't say though that "many" people are misdiagnosed as PMR when they have an inflammatory arthritis - from the experiences on the forums over more than 10 years I would suggest "some" would be more accurate. However - I am waiting for an expert opinion on figures there!

Hidden
Hidden in reply to PMRpro

I wasn't trying to imply that it's misdiagnosed. The protocols suggest that if after 6 months the dosage can't get below 10mg then, consider Rheumatoid and maybe try a drug like chloroquine which seems to be very effective in late onset RA. This is complex and it's worth considering all options.

PMRpro
PMRproAmbassador in reply to Hidden

If everyone who couldn't get below 10mg in 6 months was considered to not be PMR that would probably involve more than half of patients!!

Hidden
Hidden in reply to PMRpro

One study I read said it was well over half of people with a diagnosis of PMR. It may be wrong, but maybe not. It was meant to be an observation of interest, not a challenge.

PMRpro
PMRproAmbassador in reply to Hidden

Wasn't taken as a challenge.

29Pain00
29Pain00 in reply to Hidden

My doctor did put me on 0.6 mg Colchicine tablet daily...sometimes used for Gout. She is hoping it will help me to taper Prednisone quicker or easier.. I am willing to try anything but still not rushing the taper. I do have osteoarthritis. She also checked for rheumatoid arthritis but evidently I am okay there.

Hidden
Hidden in reply to 29Pain00

That's interesting... Clochicine is one of the oldest drugs in the world. I believe it's extracted from the autumn crocus and was used by the Romans to treat gout (no help to you, but interesting!). It can be used to treat recurrent pericarditis (inflammation of the bag around the heart), particularly when recurrent and associated with SLE, and is used to treat familial Mediterranean fever as well as gout.

I've just run quick search and I can't find any reference to its use in PMR, although it seems to be suggested as a drug worthy of investigation for other inflammatory conditions as it appears to have a general anti-inflammatory effect. I think I'd ask what your doctor's rationale for using it is as it is only licensed in the UK for the treatment of gout. I have read about hydroxychloroquine or chloroquine being used where the diagnosis of PMR is on doubt.

The other thing she needs to consider is whether you have arthritis in your hands... after all at our ages, having both osteoarthritis and PMR is not remotely unusual.

PMRpro
PMRproAmbassador in reply to 29Pain00

What a strange drug to choose - did they say why? It has been looked at as a potential steroid sparing agent in asthma - and the conclusion was it did nothing. No mention of it being used elsewhere.

I'm left to wonder how much of their pharmacology lectures they were awake for!

29Pain00
29Pain00 in reply to PMRpro

Please see my reply to Mikeo99- my doctor felt it would help with my taper. It is used for Gout and can reduce pain and swelling in joints.

PMRpro
PMRproAmbassador in reply to 29Pain00

But gout has nothing to do with PMR - and it's effect in swollen joints is for a specific reason - it reduces the buildup of the uric acid crystals that are the problem in gout. Just seems strange.

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