I am a Newbie

[magmarcrew123]

I am new to PMR. Although it never showed up in blood the doctor is convinced I have it. It started during lockdow. Pain in my leg then my hip. One week later pain in so many parts of my body. I could not get out of bed for days and was so stiff. I am now taking steroids and it really has helped. The doctor wants to get me off them after 6 months. Is it possible to have PMR if it is not showing on a blood test.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Yes it is - up to 20% of patients don’t have raised markers.

You doctor may want you off steroids in 6 months- but it doesn’t work like that.

PMR comes on when it wants - and goes in the same manner.

You might want to have a read if this - healthunlocked.com/pmrgcauk...

[rcwz]

My understanding is PMR itself isn't specifically detectable via a blood test - though you'd be more likely to have some raised inflammation indicators. And the glorious pain.

[autumnlass]

Magnacrew123 Hi and welcome to you.

I’m new to this illness as well, the symptoms became really aggressive on about 25 June. It’s like having a permanent low grade flu in March . I started Prednisolone on July 6 and began to feel better with 3 hours only the Prednisolone gives me roaring insomnia although I breakfasted at 8 this not early enough to take them. The pain relief is manageable now but unbearable before the steroids and in so far as all the blood markers that they took were negative when the were done, 3 weeks ago like you, and that’s when my GP prescribed me 15 mgms nearly two weeks ago. Are you experiencing insomnia too? I hope it settles.. I around this to you after 1 hours sleep at 2.46 am! All good wishes Autumn Lass 🍂 x

[artisam]

You were lucky your GP recognised PMR without blood markers. It didn't show in my blood either and was told that it would be very bad practice to diagnose it as it was extremely rare! Hence delays in diagnosis and much suffering. I now now it's not that rare at all. I also now know that it will go when it will go and I doubt that will be in 6 months. Best wishes and fight on!

[autumnlass in reply to artisam]

Thank you for your cheery wishes. x

[Woodiesmum]

As most of the comments show yes it’s possible x

I was on so many tablets that when we looked into them most read that they brought the markers down x so maybe if I hadn’t been on anything it would be through the roof x

But my gp would just look as if it to say x well I don’t know how it can possibly be that if the bloods are normal x

But I found a consultant who listened and wasn’t interested in the bloods x he is amazing and fours years later I am still using steroids and in my case I couldn’t come off yet anyway but don’t let them rush you xx

[Purplecrow]

Hi, my blood tests never indicated PMR. My doc diagnosed by my pain patterns and by my rapid response to prednisone. Blood tests continue to provide no clues although I am nearly 7 years into my journey.

Insomnia is a common problem in early stages of treatment. Some times a cup of warm milk (with vanilla flavoring) helps sleep come. Melatonin can also be helpful.

When you are awake on what I call my sleep less nites, read back in archives of this forum. (Find it at upper right side under " search Healthunlocked").. Most every issue is discussed, and it helps normalize your experience when you can see that many others have walked the path before you.

PMR is not a simple disorder, and predicting its remission is near impossible. Few people are off prednisone quickly, it sounds like your doc has some learning to do regarding the disorder. Many of us have helped our docs learn about PMR, in fact some of us soon knew more about than our docs did.

Keep coming back to the forum, someone is here 24-7. Our really wise ones keep close tabs on new folks, offering support and encouragement along with wise words.

Kind regards, Jerri

PMR diagnosed 2013

[Juliey43]

Hi. I got PMR in March during lockdown too. Very little in terms of raised markers but on prednisolone. So much better now. Do you think there is a link between PMR and Covid? Also how long do you need to take steroids for? Anyone know why it comes on? Sorry for the questions, I'm a newbie too.

[Purplecrow in reply to Juliey43]

Having had PMR since2013, I see no reason to link PMR and Covid.

I've taken steroids for 7 years. Much remains to be learned about PMR, but the research continues.

[PMRpro Ambassador in reply to Juliey43]

No, no link - PMR has been recognised to be around since 1888. Covid since last autumn!

[Daffodilia]

I think you should reduce pred slowly - might take longer than 6 months - good luck

[alangg]

It is possible to not have raised blood markers and rare for doctors to diagnose without them! My situation was similar and it took about 9 months of visits tothe GP before I was given pred with the message that if the symptoms go, it probably is PMR and if they don't, it probably isn't.

Mine has lasted over 3 years now and it still hasn't really gone although I am coping at the moment without taking the pred (although I do have a couple of packs if it gets worse).

6 months is unrealistic and make sure that you taper the dose down very slowly - no more than 10% at a time and stay on the new dose for a few weeks if possible. Otherwise, you are likely to have a flare up of symptoms and have to go up to a higher dose to get rid of the accumulated inflammation.

[Hidden]

Good morning I am interested in your description of the onset of PMR I have also just being diagnosed and started treatment 2 weeks ago. Initially I had 3 pain points right knee and both shoulders I thought these were due to over excetion

[PMRpro Ambassador]

Find another doctor - PMR does NOT go away in 6 months.

Please read this thread - saves me writing it again

healthunlocked.com/pmrgcauk...

[Jackoh]

As many have already said, my blood work has never been indicative of having PMR and the later development of GCA as well. I was diagnosed with PMR in November 2014 and still have it. I would echo PMRpro’s advice to try to find a GP who perhaps knows more about PMR. Suggesting to you that PMR could go in six months is totally unrealistic and could set you up for failure. Some folk can get through PMR in 2 years but the average time is I think about 5.7 years. To suggest 6 months will have you reducing your steroid dose too quickly which could lead to flares and put you back to square one.