for the last 2 weeks my husband has had some headaches, neck ache, back ache, right leg ache and a pain in his groin. He’s found it difficult to sleep during the night. I’ve giving him a hot water bottle to wrap around the top of his leg which he says helped. He’s lost 4lb in weight in a week and is finding it helps. But he can’t bend or dress himself so I’m helping him with socks and shoes. He’s a young 67 years old and always been a strong macho type but this has hit him bad. I finally got him to the doctor today who thinks he may have PMR. He’s having a blood test tomorrow and been prescribed a 5mg steroid 6 times a day and then back to GP next Wednesday.
Does this sound like PMR as I’m quite concerned. We’re going away for 8 days in Dec so I guess once diagnosed I need to update travel insurance. Whst is anyone’s thoughts.
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JayceeJC
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Thank you for your email. I’m quite worried because my husband has not been one for taking tablets. He tries to ignore things till they get to a stage where he can’t cope and then he goes into a quiet withdrawn mood. I knows it’s early days but I will update this time next week.
It says can cause problems with upper respiratory infections just like Prednisone does me. Have you heard of success with the expensive stuff called Kevzara? $4300 a dose
"It says can cause problems with upper respiratory infections just like Prednisone does me"
Sorry - not clear what "it" is?
Kevzara is another IL-6 inhibitor, similar to Actemra but specifically approved by the FDA for PMR rather than GCA - it isn't approved anywhere else besides the USA as yet, There are one or two on the forum on it but very recently so not much experience beyond the results of the clinical trials.
The Rheumy also told me that 90% of PMR patients can be off prednisone pretty much pain free in less than 2yrs. First inclination was this guy is using very old data. He thinks I have rheumatoid arthritis but I am text book PMR.
The GP also told my husband that he could be pain free in 11/2 to 2 years as it’s early days it’s just getting the dosage right at the start and then run with it 🤞
He's talking rubbish. If you are going to quote 90% it is more likely to apply to the number who have PMR for more than 1 year though the Mayo study suggests that about 20% are off pred in a year, about a third in 2 years.
There are a few studies published in the last few years. The Mayo Clinic paper suggests a median treatment time of 5.9 years - that means half of patients are off pred in just under 6 years. The British study is more like 40% need pred for more than 5 years I think but I can't remember and can't find it.
comes from a particularly good group in Australia and clearly states
"Once thought to be a self-limiting condition universally responsive to a limited course of prednisolone, it is now clear that most people with PMR require prolonged corticosteroids beyond two years."
I think part of the problem we experience is mentioned here:
"Classification criteria for PMR exist (Box 1) but are primarily intended to define a homogeneous population in research settings rather than as diagnostic criteria in clinical practice. In practice, not all patients with PMR will fulfil these criteria, thus PMR remains a clinical diagnosis based on a construct of typical symptoms together with raised inflammatory markers, erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).3 ESR is classically highly elevated in PMR, but cases do occur with normal levels."
That is the reason so many patients struggle to be diagnosed - we don't often fulfil the criteria to be included in studies and so they are looking at only a small proportion of patients. The rest of us - probably the majority in fact - are either told we are "atypical" or ignored altogether.
I trust you folks more than all three of the Rheumatologists. Zero will submit work for short term disability. I paid the insurance but Indiana does not consider pain to be a disability so just had to quit my crazy well paying job. They were forcing me to do international travel. Just don’t give a shit about money at this point. Two weeks since my last day of work. One week without prednisone. No flare yet like I had on 5mg. On Family Medical leave atm, but took early retirement for a sabbatical. Career can just wait.
who knew pain was not considered a disability, I guess they want you to use narcotics but never will repeat that mistake.
I don’t like taking medication so was very reluctant to take steroids. In the end I relented and took them. I am now well and have been off them for a number of years. I’m a woman and stubborn!!
Some of the symptoms do sound a bit PMRish…. but it is usually bilateral, that’s not to say it isn’t… and the headaches/neck aches might indicate GCA , which is why GP has given 30mg. That’s a bit high for PMR..
Not sure GP is certain what it is , but at least they are taking action - and tablets should be taken as one dose first thing in morning, not spread out during the day.
Please let us know how he gets on…. There is plenty of info in FAQs - but you might wish to wait until you are certain what it is before you read too much.
PS - forgot to say re insurance….you’ll need to inform company-but shouldn’t be an issue - a slight increase in premium. Never worried about my GCA…more interested in my osteoarthritis…
I was advised to take them all together in the morning. I’m surprised that he’s started on 30 as I started on 20 but perhaps recommendation has changed.
take all the steroids in one go after breakfast with a glass of water. I swallow mine with a big spoonful of yogurt but you’ll get plenty of helpful advice on this site. We all hate being reliant on drugs but if the choice is debilitating pain or relief we mostly choose the latter.
I was a healthy 71 year old 2 years ago. Hated pills, in fact had great anxiety over it. Still do with new meds. I had been in debilitating pain for 5 months prior to diagnosis, being told it was just old age. It was actually "just PMR". Took that Prednisone right at the pharmacy as soon as she handed me the bottle. After 2 days 95% of the pain was gone. I was able to dress, walk, shower, sit on the loo, reach my nightstand. It was a life saver. Your husband must take the 30 mg. all at once. Even to see if it works. He may notice a change within hours. If it does...Bob's your uncle. If not, then he probably has something else.
Thank you so much for your message. Surprisingly he took all 6 tablets this morning. However, headache, neck ache, and back ache gone. But..after 6 hours, right leg pain and groin pain still there. 😩
That could be bursitis - a typical part of PMR but it takes longer to resolve than the muscle part. Mine was there for a couple of months before I suddenly realised it no longer hurt! That't why they say 70% global improvement - some can be 95-100% gone, other bits a lot less.
Is the right leg pain on the outer aspect of the thigh? Hurts more if he lies on it?
Maybe get your husband to read up on PMR & steroids for it. As Dorsetlady says look up on this site & maybe get him to read it . Hope he listens ! All the best .
So don't panic. I have OMR not GCA but I mistakenly too my 15mg of pred in 2 doses early say 8am and again at 7 pm. My PMR symptoms went within 24 hours.
I think in theory it should be one d dose but as I stated 2 is ok. Not worth stressing as that can make things worse.
Like others my only issue is that it's not bi lateral in your husband's case. Usually it is and that forms part of a doctors diagnosis.
You also mention his groin pain mine was a.very strange feeling at first I thought it was.a double groin strain .
Good luck on the journey pred will help is like a magic treatment taken carefully. It will not cure him but make life close to normal.
I have no experience on GCA only PMR so my thoughts are based purely on my experience.
I gained weight because I couldn't exercise. And after a while, I comfort ate. I craved carbs in the afternoon - no idea why, never had before. The day I took my first dose of pred - just a cup of tea was enough. Everyone is different.
I guess he is just sticking to what the dr told him ! No social media advice for him ! Best clarify with the surgery or next Wednesday. He might change his mind as he realises how much pred helps
With regards to taking prednisolone as a single dose could you ask the pharmacist where the prescription was dispensed to speak to your husband , He should really have been counselled on taking as a single dose and given a steroid card also.
Jaycee, PMR, did not affect my travel insurance when I phoned them, it went up when I told them I'd been in hospital over night,thy told me that hospital stay put it up £90 xx
Not to jump to conclusions, and I hope you don’t mind the advice, but it sounds like your husband might be one who starts to feel better on the steroids and try to jump back into life full speed. You might want to gently caution him to pace himself and remember the disease (assuming it is PMR) is still there and active. It is simply being masked by the prednisone. Prednisone gives us our lives back, but PMR still slows us down in many ways. Oh, one more caution… once he starts to slowly reduce his dose, he needs to be sure not to stubbornly overshoot the proper dose in an attempt to get off them sooner. The goal of tapering is to find the lowest dose that manages the symptoms… not a relentless push to zero. This is a stumbling block for many of us as we want off the steroids and many doctors push hard to get us off of them without fully respecting the time that can take for some (longer than the 1-3 years the literature often states.) Hope he’s feeling better very soon!
Thank you so much cranberryt. You’ve read him well. He’s had a blood test this morning but already he is feeling much better and has taken his dosage 2 at a time but has now had 6 and he is planning to take all 6 at midday tomorrow. He seems a lot happier too.
If the Pred works almost like a miracle (70% improvement or more they say), then it probably is PMR. He'll come to love those pills if it takes the pain away
Thank you DorsetLady. I have read your information and find it quite worrying that he indeed has PMR as he’s feeling so good after only 6 tabs. So I won’t push him any further and wait until he goes back to GP next Wednesday for blood results. I assume the test will confirm PMR.
There isn’t an actual test for PMR as such -it’s a matter of ruling out other diseases,, and then looking at the usual symptoms (including raised inflammation markers -although not everyone has them) and the reaction to the steroids. Which is why it can take some time to get a diagnosis.
His symptoms and the speedy response to pred add to the wall of evidence. Your unenviable task now is to calm him down from the boost of being pain-free PLUS 30mg pred and get him to understand this is a management strategy and not a cure. The disease is still there, attacking his body, the burst pipe is still pumping out water but the containment strategy is working well. No catching up on all he hasn't done all week - the trick is to pace and rest as required and keep taking the pills. Though the amount will reduce steadily to find the lowest dose that gives the same result he has now. But he can't rush that! If he does, it will all go pear-shaped.
everything you have said makes sense and your prediction is spot on. He’s had a siesta and apparently sprung out of bed with no pain and is now very pleased with himself. Only 6 days to go and he’ll get an update from the GP and I’ll make sure I’m in with him so I hear what he needs to do going forward etc.
In the meantime, familiarise yourself with the stuff in the FAQs - so you are one step ahead of him.
Unfortunately, a lot of GPs think it is as simple as your husband probably does at present - but for the majority, it isn't! He will have to find out for himself though so do your best to keep him calm in the meantime. Many people used to arrive here at the forum because either they hadn't got off pred successfully in the promised 2 years or because they had tapered the dose like the GP suggested and it all came racing back.
What sort of job does/did your husband do? What sort of approach usually works with him? And having had one of the "goes quiet rather than admit they are ill", I realise how difficult that is to answer!!
But remember - we are here anytime you end up having a meltdown. It is an international group and a few night owls, so there is usually someone to hear a cry for help. And you will be there at some point!
I think the fact the pred has made the pain go away tells you it is PMR with possible GCA too.Doctor blood tests can be misleading. For me I can feel if my inflation markers have gone up usually caused by over doing things. When the pains gone you forget you have PMR and do normal things maybe more than you should.
My best suggestion is for you both to relax and not worry.
Thank you again for your thoughts. It’s been really helpful. The funniest thing is I have been limping and in pain in my right knee/leg since 20/9 with a suspected meniscus tear and waiting to see a specialist finally on 7/11. 😂 we must look a sight walking together in the supermarket!
UPDATE. Husband has been diagnosed with PMR. Inflammation markers were 68mg instead of 0-5. Steroid has been increased to 8 x 5mg as he still has pain and calcium tablets and Omeprazole prescribed too. Next blood test in 10 days.
No mention of Gca. The Doctor had hoped he would have had a better outcome from only 30mg. He’s only got to have 40mg till the next appointment in 2 weeks when they’ll check his blood results again.
steroids only kept the headache and back ache away but still pain in groin and hip area. Was taking Co codamol just to get rid of pain but that’s not 100% either. He has lost 7lb in weight even with an appetite.
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