stiffness

[TedTheMaineCoon]

Hi

I have read that people experience lot of stiffness with PMR , especially in the mornings . However , I never do , maybe slightly for a few mins.

GPS say I do have pmr. My inflammation levels were 39 in the spring . I was given 40mg steroids per day , as suspected GCA . Then saw a rheumy who reduced me to nil steroids in 8 weeks . During tapering at around 15,20mg per day , I felt the same pain return - neck, shoulders & upper arms . Also legs, groin & hips .

Appetite declined . I Also have hands that turn white, red & bluish & go a bit numb . Sometimes

I get a red butterfly mark across my nose and cheeks . Muscle waste in thighs and upper arms . Ulcers in mouth , boils up my nose . Runny nose that goes on for months .

Blurry vision & seem to get puffiness around eyes and puffy arms. Painful swollen knees .

Fingers & wrists sore and swollen in the mornings - the list of symptoms seem never ending!

This has been going on for several years .

I’ve seen a rheumy twice & I’ve told her all this . On Monday she said it might be RA , my diabetes , weight or rotator cuff ! She sent me for X-rays on hands & shoulders . Also

More blood tests . She said my last inflammation levels in September were in normal range . she is going to send me for a scan !

Somehow I think she’s not listening to me& she doesn’t think it’s pmr , she said something is going on , but it’s a mystery .

I had been in agony until she gave me a steroid injection in my shoulder on Monday, although pain still there & other places .

I understand it’s tricky diagnosing auto immune diseases .

But feeI don’t know what to do . Please can anyone give me some reassurance or guidance ?

Sorry for long message .

Lesley

[PMRpro Ambassador]

"Ulcers in mouth , boils up my nose . Runny nose that goes on for months "

Has the rheumatologist done the ANCA blood test?

It rings alarm bells when I hear anyone mentioning such symptoms in association with a diagnosis of PMR/GCA. There is someone on the forum who recently had their diagnosis changed to ANCA vasculitis by a new rheumy - the previous rheumy had ignored a positive ANCA all through the illness. If a PMR/GCA patient has a positive ANCA test - it almost certainly ISN'T PMR or GCA and more likely to be granulomatosis with polyangiitis although there are 3 different ones including what was called Wegeners and another called Churg-Strauss syndrome. They tend to involve nasal and chest symptoms.

You describe typical Raynauds symptoms (hands that turn white, red & bluish & go a bit numb) - also seen in ANCA vasculitis and less likely in PMR though it does happen.

It may not be - but this article points out it needs a high level of suspicion as it is so rare. So I think it may be worth you asking the question.

ncbi.nlm.nih.gov/books/NBK5....

[TedTheMaineCoon in reply to PMRpro]

Thank you so very much , for this information. I do feel I’m being ignored and fobbed off ! I will ask gp for a 2nd opinion as not totally happy . Or save to have a private consultation.

Kind Regards

[PMRpro Ambassador in reply to TedTheMaineCoon]

It is possible the GP can request the ANCA test if it hasn't been done . It being negative doesn't rule it out - but being positive makes it much more likely. Though since the GP is convinced it is PMR and the rheumy is being a bit slow, a second opinion from someone without blinkers is likely the best.

[TedTheMaineCoon]

I’m sure I haven’t had the ANCA test . I will ask Gp . Thank you .

[piglette]

The red butterfly mark across your nose and cheeks is a typical sign of lupus. It resembles the wings of a butterfly unfolding across both cheeks. It may not be but it may be worth mentioning it to someone.

[TedTheMaineCoon in reply to piglette]

Thank you . Yes I have mentioned it a couple of times . But the rheumy said Lupus didn’t show up in the blood tests 🤷🏻‍♀️ 5or 6 years ago I woke up with a scabby sort of mark across 1 cheek and bridge of nose . It resembled half the butterfly mark , but was smaller .

[piglette in reply to TedTheMaineCoon]

Apparently Lupus can be hard to diagnose because it has many symptoms that are often mistaken for symptoms of other diseases. Many people have lupus for a while before they find out they have it. No single test can tell if a person has lupus. Do you know what tests they did?

[TedTheMaineCoon in reply to piglette]

Thank you for reply . Earlier in spring I had ANA -negative . CCP - negative , rheumatoid factor less than 10 , GGT 107 , ALT 58 , ESR 39 CRP less 4

[PMRpro Ambassador in reply to TedTheMaineCoon]

The butterfly mark appears in a lot of disorders.

[Indigo2417]

Can’t give you any advice as I’m not an expert, but I am interested because I’m currently on Pred after a recent consultation with a rheumatologist who suggested I have PMR. But, he also advised my GP to get an ANCA blood test and a chest X-ray. I think to rule out Wegeners granulomatosis. I haven’t had the test or the X-ray yet. I’ve had sinus problems for years and I’ve also had some of my fingers going white. Sorry I can’t give you any advice, but I would be interested to know how you get on. Good luck.

[TedTheMaineCoon in reply to Indigo2417]

Thanks for your message Indigo .

I’ll update you when I know more . I’m to contact rheumatology dept on Friday , blood tests and X-rays should be back by then .

Regards & all the best