Has pmr gone into remission

[Leepeelee]

I’ve noticed a change in my symptoms over the past couple of months.

I had blood results showing Zero signs of inflammation which was followed by an appointment with my rheumy about 4 weeks ago.

She told me that my PMR had gone into remission and was told to reduce preds by 1mg every 8 weeks

I had been complaining of aches and pains in my upper arms, legs,& wrists . My rheumy told me that based on my blood results this is just pains due to wear and tear and to take paracetamol regularly

3 weeks ago I reduced from 5mg to 4 mg which lead to a week of withdrawal symptoms but seems to have worked

So, I am now on 4mg preds, my symptoms seem different than before, my aches and pains are now seem to be worse after a days work but do go away if I take paracetamol.

I’m not 100% convinced that the Pmr has gone completely, I feel that it is still there but maybe not as active as before. I’m not sure if the aches and pains that I am experiencing are just wear & tear or Doms from working . If it was Doms related, would paracetamol help ?

I am in a better place than before (I think) but still not feeling the best

Does good blood results = PMR remission???

[dancersize2]

I'd try 1/2 mg drop each four weeks to lessen the withdrawl symptoms. I think paracetamol would help with delayed onset muscle soreness if that is the problem. Good luck and stop the reductions if you feel worse.

[Hidden]

Good morning, I've just read your post. My recent ESR = 2.4 and CRP = 2. So I consider that a good reading for my present inflammation level. However, like you, I am still suffering the odd aches and pains, particularly from my right shoulder and upper arms. I'm due another blood test a week before my next appt with my rheumy next month. I get concerned as we decrease our prednisone, does the inflammation increase again. I've just realised that I may now be suffering from Pred withdrawal symptoms. I've only just connected the way I've recently been feeling and now putting it down to my pred reduction. Symptoms include: Breathlessness, Fatigue after doing anything too strenuous, and worst of all feeling lightheaded.

What were/are your symptoms when you started to reduce ?

Also, did you use the Dead Slow and Stop Method, as I am.

I've just finished the weeks where I was taking some days 9mg and the rest 8mg. I have now finished this part and tomorrow due to start 8mg some days and 7mg the next. I think I'm going to remain on 8mg for the rest of May then try the next regime. But instead of taking 7mg I will go more slowly and take 7.5

I was originally diagnosed with PMR Dec 2019, inflammation was 515. By the time I'd reduced to 8mg GCA kicked in. Up to 40mg and been reducing ever since. I started the Dead Slow and Stop Method once I'd reached 10mg.

I personally don't think your aches and pain are down to wear and tear and

as many docs tell us old age too. I'd say that it's PMR sitting in the background. However, I'm no expert and take lots of advice from the ladies

on the forum. No doubt you'll be receiving many replies soon from the

ladies that know more than I.

Best wishes

Anne

[DorsetLady PMRGCAuk volunteer]

Hi, “Does good blood results = PMR remission???”

Not necessarily- just means the inflammation is under control, not that the underlying illness has gone......not quite the same thing, and not sure how Rheumys don’t know the difference!

She may be partially correct, in that at lower doses normal aches and pains return, think I said that on the Arthritis forum a few months ago when you complained about wrists.

Is anything being done about them?

I would say you have a bit of both, arthritis and PMR....

if Paracetamol helps then it’s not purely PMR. ....and as your PMR is only 2 years old it’s unlikely to be gone completely, not impossible, but unlikely.

Follow her instructions 1mg every 8 weeks, but better option 0.5mg every month, and maybe a slow taper - this is just one - healthunlocked.com/pmrgcauk...

[Leepeelee in reply to DorsetLady]

Thanks I’ll take a look at the link 😊

[Leepeelee in reply to DorsetLady]

Hi DL, for some reason I can’t get onto the slow taper plan via the link. Is there anywhere else that I can find it ?

[DorsetLady PMRGCAuk volunteer in reply to Leepeelee]

Resent - healthunlocked.com/pmrgcauk... or type “taper” into search facility Or do you mean you can’t get spreadsheet? For that you need to message me with email address (not on open forum).

Post

[Leepeelee]

Thanks Anne, I am also not convinced that the pains that I am feeling are unrelated to Pmr, the only thing different is that paracetamol is helping which is why I thought that it could be doms as I am still working manually.

[PMRpro Ambassador]

Only in the sense that you are in what is called "drug induced remission" and that you are taking enough pred to manage the current level of inflammation being created each day by the shedding in the body of inflammatoory substances because of the underlying autoimmune condition that causes PMR. Like in my dripping tap and bucket analogy: inflammation is being dripped into your body every day, the pred is scooping out the inflammation and keeping the markers stable as long as you are taking as much or more than is needed to get ris of it all.

True remission means that there isn't any new inflammation being created so there is nothing for the pred to clear out - and you can go on without the symptoms returning. That is how you are able to reduce the dose of pred - but since most of us are aiming for that every day anyway it is a rather superfluous statement (IMHO) and you just carry on as you have been. And if the symptoms return and get worse - it's likely the PMR is still there. At least she is saying a fairly sensible speed - the return of normal adrenal function is what is important now.

Trying 1/2mg at a time and using one of the slowed tapers might help the withdrawal discomfort, it does for most people.

The other aches and pains could be due to various things - but it is fairly reasonable to say that if it is PMRparacetamol probably won't help but it may well help with other things,

[jinasc]

I looked at your profile and there is no information in it, ie what Country, when diagnosed and the date, this information does help when trying to answer a question.

I looked at the list of your previous posts and see the first one was a round a year ago. Have I read it correctly?

[Leepeelee in reply to jinasc]

I’ve was diagnosed in January 2020, I’m 53 years old, live in the uk , I’m a male !

[PMRpro Ambassador in reply to Leepeelee]

Mmmm - but could you add that info to your profile please? That's where we look to find out such things and it really does help us give you a sensible reply

[Constance13 in reply to PMRpro]

Quite! I always imagined Leepeelee was a woman!😂

[Leepeelee in reply to PMRpro]

Updated my profile, didn't realise it was an option but thanks for pointing it out

[PMRpro Ambassador in reply to Leepeelee]

Excellent - thank you!

[piglette]

Another rheumy with a crystal ball!