Needing help on my condition : Help please reduced... - PMRGCAuk

PMRGCAuk

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Needing help on my condition

Jizer profile image
17 Replies

Help please reduced to zero presdilone in start of January 2021. Over the past few weeks I have noticed lots of symptoms returning. Main ones are stiff neck pain between shoulder blades and all over horrible skin feeling on my back shoulders and thighs. I would appreciate any advice

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Jizer profile image
Jizer
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17 Replies
PMRpro profile image
PMRproAmbassador

It is not uncommonn for people to experience symptoms returning after 7 or 8 months and what it often means is that the underlying autoimmune disorder was in a low activity state when the pred was stopped but it continued at a low level or possibly even increased a bit and eventually the unmanaged inflammation built up until it got to a level that was enough to cause symptoms. Often just sticking at 1mg pred a day is plenty to avoid the relapse threat. Prof Dasgupta in Southend told us last year in a seminar that he often keeps patients on 2-3mg longterm and find it avoids the risk of relapses.

It might be worth discussing going back to a low dose of pred - because it is easier to avoid a complete relapse when you take action sooner rather than later

Jizer profile image
Jizer in reply to PMRpro

Thanks for your reply I am based in uk. And waiting list or even trying to get appointment to see rummy takes months I still have indate pred do u think I should take pred and if so what amount and over what period. Thanks john

PMRpro profile image
PMRproAmbassador in reply to Jizer

If it were me I would try it - but we cannot tell you to do that without a doctor's approval. Which is why I suggested discussing it with your GP.

Jizer profile image
Jizer in reply to PMRpro

OK thanks will try to get appointment with doc tomorrow will keep u informed

Jizer profile image
Jizer in reply to Jizer

Good morn pmr Pro got phone appointment with doc he has told me to take 4mg of pred for two weeks then start reducing by 1mm also appoint with nurse to check bloods. What's your thoughts

PMRpro profile image
PMRproAmbassador in reply to Jizer

Probably a good start - though why 4 rather than 5mg??? How soon will the bloods be done?

Jizer profile image
Jizer in reply to PMRpro

Getting bloods done today won t hold breath for results will keep u updated thanks again for help

Jizer profile image
Jizer in reply to Jizer

Good morning pmr Pro just to let you know bloods came back OK what would your advise be on reducing steroids. phone app doc told me to take 4mg for 2 weeks and that was his input

PMRpro profile image
PMRproAmbassador in reply to Jizer

Mmmm - but what does "OK" mean! My ESR was never out of "normal range" but it was significantly raised for me!I'd try the 4 or 5mg for a week if it clears the symptoms quickly - and then try 2.5mg to see if that is still enough. The fact you got to zero means the disease activity is pretty low and a low dose will probably be plenty. But in my experience, symptoms are far more meaningful than blood test results.

Jizer profile image
Jizer in reply to PMRpro

Hi pmr Pro I haven't got any knowledge off what bloods should and should not be I will forward a copy of bloods hope to hear from you. John

Bloods
PMRpro profile image
PMRproAmbassador in reply to Jizer

Indeed very OK!! I somehow doubt your normal ESR is any lower!

But that doesn't mean you aren't having a flare and symptoms rule.Has the raised pred dose helped?

Jizer profile image
Jizer in reply to PMRpro

Almost all symptoms gone within 24 hours

PMRpro profile image
PMRproAmbassador in reply to Jizer

Then I would drop to 2 or 2.5mg and see how that does. Then try 1mg - it is a titration to find out what you need and it could well be just that low. But you only find out by trying.

Jizer profile image
Jizer in reply to PMRpro

Thanks for your help much appreciated

Arflane97G profile image
Arflane97G

Do you have a good gp / rheumatologist? I have been off pred since December last year and my rheumatologist said that if any symptoms returned she would not automatically assume it was pmr but would conduce a series of tests before prescribing more pred.

Jizer profile image
Jizer in reply to Arflane97G

Just wondering did your pmr actually return. Thanks

Arflane97G profile image
Arflane97G in reply to Jizer

Not so far thank goodness, do have an issue with my right shoulder so waiting for scan and possible steroid shot to deal with rotator cuff issue. Pain is nothing like pmr and I only feel it with certain actions like pouring water from a kettle or wine from a bottle 🙂

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