Trying to come to terms with PMR.

[Rebel21]

Hi I am a 62 year old female diagnosed with PMR end of November 2019, so very early days for me. Still trying to come to terms with the diagnosis. Not a lot of info from gp, just take the Prednisolone 15mg if you feel better continue for a month then reduce by 2.5mg and take that dose for a month. No further blood tests, no advise about BP or raised blood sugars, had to argue with them to get a card to show I was on steroids. Anyway first reduction of Pred occurred a week before Christmas, within a week all symptoms of pmr were back, spoke on the phone to gp who told me to increase back to 15mg for a month then try to reduce again. Have a real problem with fatigue and going to work. I am a trained nurse and to be honest didn't no anything about pmr prior to diagnosis. This forum will be a godsend for me and may help me understand the problems I have been experiencing and to not feel so alone.

[Cyclegirl54]

Hi Rebel21,

Sorry you’ve been diagnosed with PMR. I hadn’t heard of it either (or Giant Cell Arteritis) so it does take time to get ones head around it all.

There will be experienced forum members along soon , I’m sure, to offer expert advice. In the meantime, take it easy🌸

[SheffieldJane]

That was more or less how I was dealt with. I am extremely glad that I found this forum fairly early. I hadn’t heard of PMR and had no real idea about the fact that it was a condition that could last years. By the time I got a Rheumatologist referral, I was clued up enough to ask to be referred to another one who is a leader in these fields. This is important as I could feel myself being dismissed and symptoms being attributed to Fibromyalgia without the evidence. My GP agreed albeit reluctantly, so between my knowledgeable Rheumatologist and this forum, I have felt informed enough to manage what can be an isolating and frightening condition.

I was started on 20 mgs of Pred which I needed. I dropped in two 2.5 stages when my symptoms settled and used the dead slow nearly stop tapering programmes that appear as pinned posts on this site. I never reduced by more than 10% of my dose at a time.

It will be difficult to do a strenuous job like nursing with PMR and I would be seeking a meeting with HR to see if reasonable adjustments could be made to my duties/ hours/ environment that meant I could continue in employment. You may find that in a profession like yours PMR is not unfamiliar to them. The fatigue can be an on- going problem for many of us and a demanding, stressful profession is likely to impede recovery. PMR can last for several years. It is very important that you are able to rest and pace your activities. You will have plenty of specific questions as time goes on and there are a lot of experienced, fellow sufferers who are happy to advise. Welcome to the forum!

[PMRpro Ambassador]

Unfortunately it isn't just a case of taking the pills - you have to do your part too, especially with regard to activity. The fatigue is only managed by pacing and although the pred manages the inflammation it does nothing to the actual underlying autoimmune disorder and that chugs along in the background leaving your muscles intolerant of acute exercise - so there you may need to make lifestyle changes to reduce the risk of DOMS that appears in response to far less activity than you expect. You can "train" again but you usually have to start at a very low level and build up very slowly.

healthunlocked.com/pmrgcauk......

[DorsetLady PMRGCAuk volunteer]

Hi.

and welcome

Have a read of this to give you an overview of the illnesses we discuss on here. I’m sure you have many more questions so come back at any time.

Unfortunately lots of GPs seem to have little knowledge of how to treat them. But with our help you’ll get through - and maybe be able to enlighten your doctor.

healthunlocked.com/pmrgcauk...

[piglette]

I am so sorry you have been diagnosed with PMR. At least your GP had heard if it, I had to see a rheumie privately to get a diagnosis. Also they are listening to you, which is often not the case reading this board. I have real trouble reducing and have to go in small steps.

[123mossie]

I’m about a month later than you in my diagnosis, I reduce to 12.5 next week. My gp advice has been via phone, I had been told re borderline sugar & hba1c, but no info given other than Pred dosage. This suits me at the moment, but most of my info has come from this forum, luckily, such a brilliant resource. If your working in an active job like nursing could you be doing a bit too much? No way could I have worked for the first few weeks.

[GOOD_GRIEF]

It may be that your reduction is too steep and too swift. Ask your doctor if you can try dropping by 1mg or 0.5mg every two weeks or so and see of that goes better.

[Whitner]

Welcome Rebel21. I am relatively new too. It is definitely a lifestyle adjustment of trial and error. See how you feel the next day after certain activities the previous day. Rest when needed. As suggested you may have reduced your pred too soon and during a particularly busy time. I hope you feel better back on 15 mg. You will find the information here a huge benefit!

[Jackoh]

Hello and welcome! There is some invaluable information on here so just stick around and consume!!

I think many of us had never heard of PMR or GCA before being diagnosed and some of us didn’t get a lot of information from our GPs.

[Gary1310]

Pacing is what got me through,.....and naps. Learned pacing on this site. I say No to most invitations and keep energy for only most important activities. Nothing is more important than wellness. Bed at 9 up at 5. Naps during the day. Will exercise when this condition is in remission......