Am brand new to the forum.Saw a Rheumatologist Consultant on Tuesday whose initial diagnosis of my symptoms was PMR.Had blood tests the following day and also prescribed 15mg Prednisolone & Omeprozole. Began taking steroids yesterday and due to see consultant again on 13 April.He informs me he will compare recent bloods with ones I had taken in early Feb to see if inflammation has remained the same,better or worse.Am assuming steroids impact varies from person to person?Have suffered with pain in my shoulders particularly my right shoulder and arms and hands for three months.Any advice anybody can provide relating to PMR would be much appreciated as I knew nothing about the condition until the consultant explained to me and been reading lots of posts on the forum.Very impressed and lots for me to digest.
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Countybowler
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Yes, but you need to send it via private message rather than on open forum - just tap my picture above - will take you to my profile - then select Message - new page - add details
What sort of information do you want? It would be really helpful if you added a bit about your history so far to your profile - the bit where you say Hi is good so we can always find it.
Prednisolone/prednisone does NOT cause cancer. And contrary to your wishful thinking - PMR is NOT curable, it can just be managed pretty well using pred.
And it is hardly hidden or new news that the old shingles vaccine can cause PMR - I wrote about it for the first time probably 5 years ago, certainly 4 years ago and it wasn't new then.
At the current point, I have decided that my PMR becoming worse due to the Covid vaccine is preferable to the risk of getting Covid, which would undoubtedly kill my husband,
Hi Ambassador1 you have been one of my top gurus throughout my journey but I'm surprised when you say 'PMR is NOT curable'. Yeah, they don't have a 'cure' but doesn't it usually 'gives up' within 2-3 years? I realise there are many of you on this site who have endured it for longer but I was under the impression that it normally relinquished it's hold over a person in about 95% of cases?
That isn't the same as curable - it is just that for a lot of patients the underlying a/i disorder burns out and goes into remission eventually and that happens whether they are treated or not. It has nothing to do with the pred, or even the tocilizumab that will also get patients off pred, but it may relapse later because that is the nature of autoimmune disease. It can be well managed for many people - but not banished like taking an antibiotic gets rid of an infection by killing off the causative bacteria or an operation removes a diseased appendix.
However, it is NOT in the 2 years that a lot of doctors think. One in 5 patients can get off pred in a year, by 2 years it is a third. Half of patients are able to get off pred by 6 years - 40% of patients still need pred at 10 years although usually at a very low dose and some may be due to poor adrenal function. These are more recent figures than the 95% that we quoted in the past.
Hi , do you really think the COVID vaccine can make the pmr worse ? It’s funny you say that I got my vaccine and was really ill and everything got worse and ended up with jaw pain and head pain on the right side , finally seen a rheumatologist and she’s doing loads of tests and getting MRI today think she suspects giant cell she up the prednisolone to 30 and wants to put me on Azathioprine what are you thoughts on this medicine .
Not sure that azathioprine is much point in GCA - it isn't even recommended for PMR never mind GCA. There is some noise about methotrexate in GCA if started early and it does have a beneficial for some cases of PMR, not all.
Theoretically anything that has a go at the immune system can lead to a flare - and that ranges from stress, over other illnesses/infections to vaccines. If you already have PMR then by definition you have a deranged immune system which is likely to respond to anything sending it out of the balance it has achieved by having a wobble, But if the vaccine can do it - just think what the virus itself could do. It causes severe vasculitis in previously healthy people.
Really so you think there is no point in taking this medicine so what is this used for then ? I don’t want to start taking other meds if I don’t have to . I have felt terrible since the vaccine you are right I wouldn’t like to experience the getting COVID omg
It's just it isn't usually suggested in GCA - it is said by some to work as a steroid sparer and it is used in RA and severe hepatitis for that. However - GCA and PMR are different, Methotrexate has been tried in GCA and PMR but the results were equivocal to say the least. And when you add in yet another drug, it inevitably adds another layer of side effects so you feel there should be some evidence to back its use!
I do keep an open mind though. Anything may well be worth the trial - but only if they don't make you feel even worse! With methotrexate I felt as bad as I did with undiagnosed, untreated PMR plus I got pred side effects I had never had before. And that really isn't the idea is it?
We don’t want that I feel like I’m on a terrible rollercoaster ride already I will see what the rheumatologist says after all the tests are done . Thank you
Hi. My PMR definitely FLARED after the 2nd shot. About 3 days after. I was at 4.5 mg. and went to 10 for 5 days then 7 for 2 then 6 for 1 and now am at 5 and holding. it worked. The only other flare I had was a year ago June and that took me from 2.5 to 10 and kept me tapering dsns for months. Happy to have returned to the 5 so quickly. Now to keep on going down. (PMR for 3.5 years started at 15mg. now at 5mg)
Hello Countybowler and everyone. I found this site last night so am new here too. There's a wealth of information that wasn't available anywhere else .My GP for all her helpfulness wasn't able to give me any real information; she seemed to think it will go away once the steroids have worked, she clearly didn't see it as the product of an underlying illness and incurable; I admit to feeling daunted by the prospect of it being ongoing for years! Good luck and I hope you don't get too many side effects from the steroids. The one I didn't expect was a runny nose!
Please see my note below...as a fellow “newbie” the amount of knowledge and expertise on this forum is daunting and brilliant. These folks may just have saved my life by helping me understand how wrongly I have been treated for the past 6 months. The misery could have been spared had I found this site sooner. Best wishes on this wobbly journey back to health!
As a “newbie”, I also reached out on this site and received brilliant insights into PMR. I was told the 10 mg. Prednisone was inadequate to stop the pain and inflammation that I’ve been dealing with for 6 months. I was informed that it would take 15 to 20 mg. to stop the pain. If it didn’t stop with that level of steroids, then I did NOT have PMR. Yesterday, I sought a second opinion from another Rheumatologist, who confirmed what the PMRPro and DorsetLady advised. I am so grateful for their wealth of knowledge. It appears I may have Spondylitis which cannot be helped with steroids but can be contained with some new medications, which are not Methotrexate or DMARDS. I read so much great information on this site that my eyes seemed to be crossed for days after. Yet, these people are incredibly knowledgeable and just lovely human beings.
The side effects of the steroids have been many and varied (and awful) but through supporting one another, we can make it through this twisted path.
hi there I would be grateful if you could elaborate your comment about medication for spondylitis and what meds you will get to treat that pain. very best wishes polly
Polly, I know very little about Spondylitis or the medication for it, as it was just given as a potential diagnosis three days ago. However, the internist/rheumatologist I saw, told me there are two new medications which are superior to the TNF inhibitors and DMARD’s. The only “new” one I found is, as follows: “Cosentyx® (secukinumab) for two new indications –– the treatment of adult patients with active ankylosing spondylitis (AS) and active psoriatic arthritis (PsA).”
The amazing Ambassadors and others on this site are very knowledgeable about these two new types of medications. They answered my inquiries about this new medication but I cannot locate the response at this time.
I would strongly recommend Kate Gilbert's book to all newbies. There is so much information on this site for which I have been so grateful but I still prefer to have the written word from an expert sufferer as well.
hi Photojournalist, interested in your post which received response : 'Prednisolone/prednisone does NOT cause cancer PMR can just be managed pretty well using pred.
the old shingles vaccine can cause PMR
PMR becoming worse due to the Covid vac
are you able to elucidate yr concerns in your original post, so we can better understand the response,
best wishes and thanks for sharing your thoughts and experiences, all much valued, Polly
Hi! I didn't write that first sentence, I've been discussing Ambassador's reply to the question. In fact, I can't even see where that came from. Sorry.
The reply which contained the reference between Pred and cancer has been deleted by Admin, which has left the response from PMRpro somewhat ‘hanging in the air’.
The comment made by PMRpro 18 hours ago in her reply to Photojournalist that "Prednisolone/prednisone does NOT cause cancer" was the greatest Easter Gift I could have hoped for. This statement by your Ambassador on this wonderful trusted Forum that Prednisalone/prednisone does not cause cancer, is such a massive relief, as so many chemicals and natural substances do, so it is heartening to know that this is one battle that we with PMR never have to worry that Pred will cause us to have cancer! This caste iron statement from our deeply trusted source should be posted at the top of every post regarding Pred and cancer, worldwide.
Our Forum always asks that everyone provides the source of our statements, so could HealthUnlocked please kindly resolve the apparent conflicting statement from Dartmouth Medical School 4 May 2004 below, as this is such a massively important issue.
"In that study, conducted by Dartmouth Medical School researchers, people taking oral steroids like prednisone were found to have a 2.31-fold elevated risk for squamous cell carcinoma and a 1.49-fold elevated risk for basal cell carcinoma.4 May 2004"
My philosphy is always to be caring, sharing and never scaring, and this post is sent with a genuine sincere wish to learn whether Pred causes cancer, or not. Polly.
I wasn't actually thinking of skin cancer when I wrote it - but you are right, that study found it does appear to increase the risk of some skin forms, There were other studies suggesting something similar. However, we are told early on (or should be at least) that we should avoid too much sun exposure and always use high factor sunscreen.
I would have to do a lot more reading but I do know that there are other papers alleging an increase in certain forms of cancer in steroid users, lymphoma in GCA/PMR patients for example, but further studies showed that when confounders were taken into account the apparent increase disappeared.
This systematic review of the use of topical steroids found no evidence they were linked to any increase in skin cancer
So work done considerably later than that Dartmouth paper has come to the conclusion it was not the case that pred increases the risk of non-melanoma skin ca.
I have had squamous cancer since taking Prednisone, however I am 74 and spent my days on boats and lying in the sun for years and years and years and years and I suspect my skin cancer is not from prednisone but from my fun but foolhardy sun worshipping! Prednisone has saved me from 3 years of PAIN and misery. I will watch my skin carefully but never stop being grateful for the prednisone!!
Hello Photojournalist, below is the post from PMRproAmbassador in relpy to Photojournalist a few hours ago:
"PMRproPMRproAmbassador in reply to Photojournalist 2 hours agoThat isn't the same as curable - it is just that for a lot of patients the underlying a/i disorder burns out and goes into remission eventually and that happens whether they are treated or not. It has nothing to do with the pred, or even the tocilizumab that will also get patients off pred, but it may relapse later because that is the nature of autoimmune disease. It can be well managed for many people - but not banished like taking an antibiotic gets rid of an infection by killing off the causative bacteria or an operation removes a diseased appendix.
However, it is NOT in the 2 years that a lot of doctors think. One in 5 patients can get off pred in a year, by 2 years it is a third. Half of patients are able to get off pred by 6 years - 40% of patients still need pred at 10 years although usually at a very low dose and some may be due to poor adrenal function. These are more recent figures than the 95% that we quoted in the past. "
Dorset Lady has just informed me that 'the reply which contained the reference between Pred and cancer has been deleted by Admin, which has left the response from PMRpro somewhat 'hanging in the air'.
so you can see how it appears you generated a post which PMRpro has responded to, and I interested in what appears to be your original post.... very best wishes Polly
oh I see now understand the original post by PMRpro referring to prednisalone and cancer, was posted 18 hours ago, in response to another member. You responded about her being your guru and it read as if you had generated the question, so sorry about the pickle, we are all on a lot of drugs (legal ones) so confusion is par for the course, have a cracking good easter break, and I wish you well, Polly
YES - first step is to get this superb book! Then one can understand where everyone on this great Forum is coming from - not least the huge variations each of us is experiencing. I’m a newbie too, and never having even heard of PMR until some weeks ago I can share the feeling of being quite overwhelmed that there is just so so much to try and get one’s head around!
There is so much to learn. My first cynical response to that is that we have years to learn it! My experience has been that Prednisolone dealt with the severe pain immediately and I could get on with life. The other stuff - fatigue, lethargy, dizziness, reactions to medications - was faced and dealt with in their own time. And that's where this Forum has been so helpful. I haven't had to bother a GP with the 'simple' things as the answers are here. Where I have 'bothered' the GP I have gone in with all the information at hand and have been able to assist in, for example, changes in medication. Fortunately (and I am) my GP has been willing to learn about PMR.
I don't wish to underplay our overwhelming feelings, they are real, but in time we do feel a lot better able to understand and move forward.
Hello Countybowler, I felt exactly the same this time last year. I was given my diagnosis in June last year but was in pain since February during lock-down. I was started on 30 mg of pred and I am now down to 8 mg. You will get there just take it slowly when tapering. The lovely people on here helped me as I tried to go down too much too fast. I have felt the weather conditions have affected me so not going to go any lower until it gets warmer. Take care and keep in touch.
I was diagnosed with PMR 2 years ago, initially prescribed 20mg pred. reducing after a couple of months by 1 mg. every 2 weeks, all was fine for 3 months then had a flare up, Went to 25mg. pred. after 3 months still a lot of background pain, not debilitating but there 24hours a day, Prescribed 15mg. of methotrexate once a week with folic acid and continue with pred. until next meeting, was then increased to 25mg. of the meth. At further meeting methotrexate tablets were changed to single injection weekly and reduce pred, 1mg. again, (blood test every 2 weeks) I now have low background discomfort but if this persists they will also prescribe Hydroxychloroquine. I have also been re-diagnosed as having seora, I am 67 and still manage to work in electronics.
thank you DadCue and wishing you a happy easter. We are so very very blessed to have ths Forum with experts we can trust and truly rely on, I feel it is a gift to us PMR sufferers and welcome every single post, including yours. thankyou for sharing and caring. have a great day, Polly
I am so grateful to you for taking the time to help me DadCue, I am in excrutiating pain since 2 Feb with cervical spondylosis in my right neck and shoulder trapezium muscles, so severe causing double vision as nerves disturbed/inflammed? makes me feel nauseus, dizzy and light headed. As soon as I use the pincer grip with my right hand to hold a spoon or pen, a spasm of stabbing pain shoots through the affected muscle group and cripples me for the day, in a vice like grip of agony. so debilitating.
Hereditorially, my dear father had cervical spondylosis; he had a crumbling spine and wore a neck collar for many many years as his neck was too weak to support the weight of his skull. He was a Warrant Office in the British Army for 22 years, and all the saluting and square bashing plus oesteo arthritis destroyed his neck and shoulder, bless him.
I have severe oesteoarthritis, boney outcrops and calcification lumps, bumps and spurs on thumb and finger joints, my clavicle, ear bones, wrists, turning into Mrs John Hurt's elephant woman! I do expect wear and tear, but the co codamol is not helping with this particlur specific 10 week pain.
I have PMR and am on the many headed good cop bad cop monster that is Pred. Exhausted with pain, PMR , pandemic, vaccinations et al but asa I am able, I must get help for this CS and you are my first knight in shining armour. Thanks for helping me Sir Lancelot, Happy Easter, Bumpy Lumpy Grumpy Polly.
Yes that's right, sorry, on lot drugs and brain function compromised, meant spondylosis for me and spondylitis for hubby; thankyou for the helpful link.
Pain triggered on same day 2nd Feb, in him by 8 hours in our garage obsessively polishing his MGA vintage car, while I was in dining room obsessively polishing, cleaning, repairing my Dolls House Collection during lockdown. How foolish are we?
Well, we are both being summarily punished for our sins. He has had to lay flat on the floor for 10 weeks as can't sit on our recliner chairs nor lie on our sofa. He's walking crunched up and sideways like a crab , looks like Lurch! Old trauma as suffered an horrific 'accident' age 46, x-rays showed damaged spine at neck, when knocked of his sport bicycle 3pm broad daylight on an 'empty' road and left for dead, hit and run... police said if he had not been wearing his helmet, which was split in two, he might have been killed. They also broke his leg badly, so couldn't drive to work for 6 weeks... Police Never caught the baskets who did this, so we've left it with Him upstairs.... Currently Dr prescribed 10mg Amitriptalyne, which make him so drowsie he's shifted into zombie mode. Took himself of it after a week as didn't help much with the pain levels. Poor soul.
I have cervical spondylosis in my right neck/shoulder. I'm Right handed, German Translator so lots typing 40 years, exacerbated by four year BA Hons degree typing, reading, writing notes, research for 10,000 word dissertations .. so repetative strain... just been told by neuropysiology I have carpal tunnel could be a clue in this jigsaw; and also just had an horrific day with trangeminal nerve pain left ear following op. So lots pain, inflammation in hot joints, plus, spurs ops, calcium lumps on clavical, bumps thumb bones etc. PMR and the many headed good cop bad cop Pred collatoral damage limitation that is my life now. Plus few other nightmares thrown in recently...
Don't know where to start with my cervical spondylosis in this pandemic... I'll have a run at it after Easter. Thankyou for the time and care you gift to us all on here, you really do have the patience of a saint.... best wishes Pollyinagonysomeofthetime...
wow thanks for all the help advice support and wisdom. great link so helpful. I truly wish you well, and in the easter wishes there is always hope, sometimes we get buried in what life throws at us, sometimes we go down before we can rise up again in a new form , that's easter and with the help on here it lifts us all up one way or another. regards, blessed grandmother polly.
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Newbie, 20 months in on steroids, pmr. Psoriasis 
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