Hello everyone

[Gyspysmum]

Hi, my name is Marie and I was tentatively diagnosed with PNR a week and a half ago. I have had symptoms since early February but my previous dr had no idea what she was doing and was piling on every pain killer to no avail.

I changed surgery's, my new dr did blood tests and my csr was 45 up from 20 the previous week. I was also deficient in Vitamin D, and thyroid is overworking.

I am currently on a second week of Pred at 40mg as I was completely pain free at my last drs call so he didn't want to reduce yet.

I originally had small joint pain, fingers, toes, shoulders and neck but all markers for RA were negative.

Constantly tired and feeling a bit fed up that my once independent life seems like a memory!! m x

[123-go]

Hello Gypsysmum. This must be so distressing for you! Is your GP referring you for diagnostic tests? He certainly should be.

[Gyspysmum in reply to 123-go]

As of yet, none other than Blood tests. I am speaking to My dr again on Thursday and was going to see if I could be referred to a rheumatologist, this is all so new right now I actually dont know what I should be asking for.

[123-go in reply to Gyspysmum]

My reply has crossed with yours. I'm not sure that a rheumatologist is who you need for the symptoms you describe but your doctor should know who would be best for your symptoms. You have to push him to resolve this for you. You aren't being a nuisance!

[Gyspysmum in reply to 123-go]

I definitely will, my new dr has been really responsive and I am sure he will help.

[123-go in reply to Gyspysmum]

Just to avoid any confusion, I was referring to the PND symptoms.It's good that your new doctor is responsive to your concerns. I wish you well.

[Gyspysmum in reply to 123-go]

Thankyou, that is really appreciated.

[PMRpro Ambassador]

Hi and welcome.

"Small joint pain" - where? I had tendonitis in my hands and feet but that usually confuses doctors but other joint involvement and pain is less usual in PMR. Your GP has really gone a bit high with the pred dose for it to be useful in a PMR diagnosis, 15-20 is the usual range for using response to pred as a criterion for diagnosis.

OTOH, freedom from pain is a good result. Has he put you on high dose vit D? The symptoms of PMR can be mimicked by low vit D so it is something to sort out fairly quickly to rule that out.

[Gyspysmum in reply to PMRpro]

Pain started in my pointy fingers, Im an artist so thought I had overdone it, have previous had carpal tunnel so wore my splint but it didn't help, next day woke up with what I though was frozen shoulder as I couldn't lift it above shoulder height, few days later other arm started, then pain in both pointy fingers, swelling in all small joints of fingers, very swollen and hot. Pain then started in my small toe and the one next to it, again hot and painful, couldnt get my shoes on and I felt very unsteady on my feet.I had to swap drs as they were doing nothing, they did the wrong tests and were just prescribing painkillers, Currently on Pregabalin, Naproxen and 20.000 vit D supplement. I have been taking the Vit d for a month but that didn't stop the inflamation. Only when I started the Pred did the inflammation stop. I do have awful pain in my shoulders, its like my arms are being pulled off.

[PMRpro Ambassador in reply to Gyspysmum]

Hmmm - the hot and painful joints doesn't really fit with PMR but it is possible to have a polymyalgic onset of some forms of inflammatory arthritis. Or to have both. Have you still got the shoulder pain? Has the GP ordered any imaging? x-rays at least, preferably ultrasound.

Be careful taking Naproxen and pred together - they SAY that Naproxen is safer in terms of gastric irritation. That doesn't mean it doesn't do it.

[Gyspysmum in reply to PMRpro]

I am also on Omeprazole, I have actually stopped taking the naproxen, I felt they were making absolutely no difference ( but wanted to add what I had been prescribed) They put me on 500mg dose while just wiped me out. Dr is aware of the shoulder pain, I told him last Thursday, and we have a repeat telephone ( due to covid) appointment this Thursday.

I feel like my previous drs didn't care, and I told them as such because they had no idea really, the first dr did mention RA, but as there was no family history didn't think that would be the case.

This dr ( new one) did a blood test for calcium () not sure what that means in regards to bone thinning ect) and it was normal, as were my kidneys, liver. Only raised pointers were inflammation, and thyroid gland, and low vitamin D.

[PMRpro Ambassador in reply to Gyspysmum]

Calcium? You mean the "bone panel"? Doesn't mean a lot without the context of a dexascan as a baseline really. I don't get why a GP doesn't recognise when they are out of their depth - my SIL got a 2 week referral to a rheumy because of suspected inflammatory arthritis. Rheumy thinks carpal tunnel and OA. But that is the way it should be.

[Gyspysmum in reply to PMRpro]

Absolutely, I want to know what it is, because I dont want to be treated for something that I havent got.

[SnazzyD in reply to Gyspysmum]

Ideally Naproxen isn’t given at the same time as Prednisolone, especially at this high dose due to the risk of gastrointestinal bleeding. bnf.nice.org.uk/interaction...

The vitamin D isn’t so much to stop the inflammation but to make sure your body is not suffering from the wide range of problems a deficiency brings. Most importantly the Pred can cause thinning of bones and if you have low vitamin D you haven’t a hope of getting calcium into the bones because they work together. Ideally they should give you a DEXA scan to see what your bone density is like before Pred has any effect and to see if any long term deficit of vitamin D has caused bone thinning already.

[Gyspysmum in reply to SnazzyD]

Thank you for this. I have no idea what that scan means but I am definitely going to get a notebook and get all of these pointers noted down so I can ask my dr at the next appointment.

[HeronNS in reply to SnazzyD]

Actually, even if low Vitamin D has nothing to do with inflammation, one of its side effects can be muscle pain.

[Gyspysmum in reply to HeronNS]

I actually had really achy muscles, like the day after you have a cramp or a long walk, but these also cleared up once I started taking pred

[HeronNS in reply to Gyspysmum]

That was my main PMR symptom too, the feeling that you have been exercising too much, but it never goes away. I think things like low magnesium or low D simply contribute to the problem, these deficiencies are not the cause of PMR!

[Gyspysmum in reply to HeronNS]

Yes. I had just been made redundant from my pretty busy job and had gone from 1000 miles an hour to zero and Ithought it was that change in activity that had almost caused my muscles to spasm or something, then when I started getting the finger pains I thought I had been doing too much crafting, but it doesnt matter what I do i was still in pain. I have never before had pain just laying, I wasnt moving just pain from being still. It was awful.

[HeronNS in reply to Gyspysmum]

Yes, I think everyone here completely understands. I hope you are starting to feel better, not just PMRwise but also with the dramatic and sudden changes in your life? I got sick around the time I retired, which was planned, and also had a bunch of other stressful events. (btw, to complete an edit of your post you actually have to "re" post - option given at the bottom of post as you edit)

[Gyspysmum in reply to HeronNS]

Ah ok, thank you. I am learning about a condition I had ZERO knowledge of before so I think it will take some time to get my head around it.

[HeronNS in reply to Gyspysmum]

Considering PMR is one of the most common rheumatic conditions you'd think it would be better known wouldn't you? I still have to correct people who think I meant to say "fibromyalgia" when I said "polymyalgia"! Not that I do really say much, except in the forum, but you know how it is....

[Gyspysmum in reply to HeronNS]

I have no friends online or otherwise because of a recent breakdown so I havent told anyone of my diagnosis, my husband and parents is all who know.

[HeronNS in reply to Gyspysmum]

🤗 There are friends here.

[PMRpro Ambassador in reply to Gyspysmum]

In your post you say PND - I assumed it was a typo and should have been PMR??? Just checking ...

[Gyspysmum in reply to PMRpro]

yes.. sorry fat fingers!!

[Gyspysmum in reply to PMRpro]

Have edited it, thank you🙂

[PMRpro Ambassador in reply to Gyspysmum]

No problem - just wanted to be sure I was right ...

[Bcol]

Nothing to add to the other comments but just to agree with what HeronNS said that on the forum you will always find friends and someone who will listen and provide advice and help from their own experiences.

[Uglow]

Hi gypsymum I know how you feel I’m early on in diagnosis and it broke my spirit the first few weeks. Pain so bad I couldn’t walk then prednisone changed the ball game. Still learning and having tests. But a lot better since steroids. A bit up and down and I’m not great at pacing myself yet. But hang on in there. My steroids were decreased and I went back for a bit. Stay with this group it will help to understand this complicated health issue. You are not alone x

[katiemills]

Welcome to the group! Dorset Lady has written an article about PMR which you might find useful , as well as a realistic tapering programme . Most GP’s and rheumys try and get us off pred ASAP , but most of us struggle with that . Kate Gilbert has written a very useful book about PMR and GCA which you can get on Amazon. Before my hips and shoulders joined the pain party , I had carpel tunnel for months . My GP didn’t know it can be a symptom of PMR , ( in fact he didn’t know a lot about PMR 🙄but he’s very supportive now) and the carpel tunnel pain disappeared when I started prednisone.

Never be timid about asking for advice or support on this forum . It’s been a lifeline for a lot of us . Good luck !

[Liby57 in reply to katiemills]

Hi Katie. You mention carpel tunnel pain disappeared with steroids. I also suffered with carpel tunnel pain and numbness in my hands and had a call with rheumatology the other day. She advised that the carpel tunnel pain and numbness in my hands was caused by the Prednisolone side affects and not PMR. I am now down to 1.25 mg and my carpel tunnel pain and numbness in my hands has disappeared. The carpel tunnel pain only reduced when I got down to about 4 or 5 mg.

[Gaycreasey]

I would add my agreement to all the comments about finding friends here. The support is wonderful for us who find ourselves with a painful, confusing condition that no one seems to know anything about. The worst thing I find is when friends say that they know someone who had pmr and it went within a year! That just make me feel like some wimp who is just feeling sorry for myself and won’t ‘pull myself together’. The people in this forum know how it is and they ‘get us’. Wish I could say the same for GPS! Keep going and keep talking!!

[Feelingpoorly]

Hi so sorry to hear you are suffering - PMRpro mentioned Polymyalgic onset of inflammatory arthritis and this has happened to me. I had PMR symptoms which later turned out to be seronegative (RF blood test was negative) rheumatoid arthritis. I have described my journey on my profile which might be useful to you.I also was distressed, scared and grieving for my previous life. This site helps enormously and it sounds as if your GP is responsive. It’s not easy to speak up when you are poorly especially in these times but you must gently but firmly ask your GP for the help you need.

Sending massive virtual hug to you.

[remission]

We’ve all been there, would be an excellent idea to have your doctor run tests as PMR can mimic other issues, although your symptoms sound very much like how mine started and remember the fatigue and high dosage will not last for ever it’s only for a short term to things under control......be patient and what I found helped is every day to find things first thing in the morning I was grateful for.....

[Hosers2 in reply to remission]

My daughter turned from religion in general a long time ago, yet is one of the most positive people I know. She tells me that she starts her day finding things that she is grateful for. You both benefit from a happy disposition.

[Hosers2]

You are one of the few of us where PMR affected you fingers (carpal tunnel). After being on Prednisone, most of my symptoms subsided, but the pain, numbness, and pins and needles, in my wrists, thumbs, pointer, and middle fingers was the last to to decrease. And if I wake with a recurrence, it always shows up in my wrists and fingers first. I didn’t, however, have any problem with my feet and toes.

One thing that really helped me was taking my prednisone in two doses; first dose at 2:00am, and the second dose at noon. This method seemed to reduce the morning stiffness upon rising.

One other item: While I have only had PMR since last June, I did experience the same exact pains six years ago as a result of taking Simvastatin for high cholesterol. The debilitating aches and pains went away very shortly after I discontinued taking statins.

[Gyspysmum]

Thank you everyone for your comments and advice, I am taking it all on board. I am feeling very overwhelmed with everything right now, and learning to pace myself has to be my first learning task because I get so exhausted so quickly. Thank you all once again. I am so glad that I am not alone xx

[Whitner]

Welcome Gyspysmum! While you feel tired and unwell at the present time, hang in there. It has been my experience that things will get better. I was diagnosed in October 2019 and started on 20 mg of prednisone. Today I have gotten that down to 8.5 and so far I am not having any PMR symptoms. I've tried this before and the symptoms returned so my advise to you is to decrease very slowly and listen to your body. Rest when you need it but do try to walk daily, it makes everything feel better 😊