After today I feel the need to write a little about myself and hope to receive some advice.
I am 65yrs, I am Hyperthyroid also Asthma and IBS. The last few months I have had both joint shoulder , arm, lower neck ,hip, elbow, left foot pain for a few months. I can't lift my arms, more so one above my shoulder, bringing my arms down is painful, cannot really hold anything that has weight to it ,sleepless nights make me feel exhausted most of the time along with feeling low/emotional. I am mobile can walk uncomfortably for 2 miles a day with my dog. Do all normal everyday things but in such pain I feel no-one in my family believe me.
I visited my doctor a few weeks ago who told me he thought I may have Polymyalgia Rheumatica or RA (RA runs in family) he wasn't sure, he gave me a thorough examination then sent me for bloods and gave me information to read about it.
My results came back today via a telephone call. A different dr told me the results were borderline with raised inflammatory markers in last 12m. But because of my symptoms they want to give me a high dose of steroid for 2 weeks to see if I do well on it. If I don't and still have symptom's then it may be RA which would be different treatment. I asked if it would be best if I was referred to a rheumatologist but she said they usually treat patients with this illness in-house. I also have a F2F appt with my own doctor who sent me for the blood test next week. As it is I have refused the steroids so she said she will send me for the same tests again in 4 wks is this usual practice. ? totally confused and need to know the questions to ask. Thank you . Apologies for long post.
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Ellibeth10
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You sound a lot better than I was. I could hardly get out of bed, but after taking one dose of steroids I was able to join the human race again. I hooe it works for you.
I understand that, when I read people are bed ridden or unable to function it makes me question doctors diagnosis, I am in dreadful pain some days worse than others but I can still get around, walk our dog etc which is what confuses me. Thank you for replying .
Not everybody has exactly the same symptoms -.That’s what makes it difficult to diagnose. Plus we all have different bodies and/or existing health issues. There isn’t a simple answer -more’s the pity.
I wasn't bedridden. Your doc's plan sounds very good to me and exactly what he/she should be doing. The steroids are somewhat of a miracle for most of us. Keep us updated!
Yes - that is absolutely normal practice and the taking of the pred is part of the diagnostic procedure for PMR. If you respond well to a moderate dose - it is unlikely to be more than 20mg under normal guidelines and with PMR you will get speedy relief of the symptoms. If it isn't the response is likely to be a bit different and then you would be sent to a rheumatologist. If they refer you now as ?PMR you are likely to wait months for an appointment. so I really do encourage you to agree to trying the pred, If it doesn't work, you have lost nothing, if it does, then your pain will be much improved and you will have had a quick diagnosis. My symptoms were similar but my bloods weren't raised at all - I waited 5 years for a diagnosis, in pain and disabled the entire time.
What you describe is fairly textbook PMR symptoms. There are various tests they do to rule out other things but there are no tests that confirm PMR, it is a clinical diagnosis after ruling out other possibilities. You have a doctor who recognises it and is willing to treat you to confirm her suspicions. You already have other autoimmune disorders - it increases the likelhood you will develop another.
We are here to walk the road with you, explain what is going on and why you feel as you do, with and without pred. It feels scary at the present - but you are not alone.
It’s very much worth taking the steroids as it helps with diagnosis which you still need at some point. Sounds like PMR though and if it is, the right dose of steroid will really help. As PMRPro says it is a moderate dose, not a high one if the usual guidelines are followed. The doctor is suggesting the right course in the circumstances and many here have trodden the same path successfully, but the first step can be scary.
just to add...many of us on here are diagnosed and treated only by a GP and never have contact with a rheumatologist. A well-informed, intelligent GP is worth much more than many rheumatologists.
As already said the dose of steroids is part of the diagnostic procedure. You sound like you have a great GP stick with him...and do take the steroids ....they clarify the diagnosis ...and if it is PMR, they are the essential treatment and will eradicate the symptoms (or almost eradiacte for some) and prevent this disease from causing other serious damage.
please take the steroids - I know it's scary but if it's PMR they will work. My friend didn't take them and everything ended up so much worse and developed GCA plus she was miserable. I took mine straight away - in fact was begging for them as I knew they would take the pain away. I was desperate from lack of sleep for months. It is overwhelming at first but this step is part of the diagnosis.
All so confusing I know!! Can’t tell you what you should do but can say if it were me I’d take the steroids (15/20 mg pred) for two weeks. It will do you no harm and will be able to diagnose PMR. Worked for me. If no ‘amazing’ cure then it’s likely to be something else. Best of luck.
As others have said, try the steroids…. It’s only for 2 weeks. If they work, then you’ll have your answer - you might not want it, but at least you’ll be out of pain.
If they don’t work, then you move on to next option.
But if you don’t try, then whatever it is - PMR or RA or anything else, it’s just going to get worse.
Please stick with us, we’ll get you through.. and let us know how things go.
Just to say I couldn’t wait to get to the chemist to got my first prednisolone prescription. Then straight to the coffee shop to get them into me.
They gave me my life back.
It really is much better all round to know where you stand, so, if I were in your shoes, and with the knowledge I have acquired through having pmr, I would go for a trial.
Hi, I was looked after by my GP for the first year. He only referred me when I kept getting flares. I now see my Rheumatologist about every 6 months and my GP looks after me between visits.
Please do try the steroids. It was the only thing that worked for me. I was in so much pain I could barely get out of bed. I took 30mg of prednisolone and was 75% better within 24 hours. I only stayed on that high a dose for 2 weeks and then started to taper. That was in 2016! I am now on 4mg a day to keep my symptoms under control.
Have a good talk with your GP but seriously consider the steroids as a trial. It's a better quality of life with them than without them that's for sure. So welcome to the club no one wants to join 😀
Hope you give Pred a chance. I was left 7 months before getting a diagnosis - fobbed off with the age reason.
After about 5 hours of taking 15 mg Pred. I could get up from a chair to standing and all the other things and I thought it was a miracle.
I got a lot of help from Dr Hughes You Tube and more recently the lecture by Dr Mackie on line. However mostly the support and help I have received is from this forum. I showed my GP the advice from here and he was very appreciative. He admitted he knew very little about PMR or Steroid sparing medication.
I may as well add to the others - if your condition is due to PMR the steroids will indeed give you your life back, to a large extent or pretty much entirely. and then you'll know ails you. I certainly wasn't bedridden but struggled to turn over in bed, couldn't pick anything up from the floor or put my socks on. And, oh, the aches. Prednisolone was like a miracle, I feel quite emotional thinking about it, really. Yeah, then you have to join the gang and taper down . . . we're here. I was diagnosed during lockdown, lucky had a GP that listened and sent me straight for blood tests then prescribed Pred. (I reckon she must have had it herself, she understood everything I was feeling.) Never seen a consultant. Actually I've never seen the GP either as the practice still favours phone appointments and as it happens that works for me too. Good luck whatever you decide.
To avoid confusion, is your thyroid working too hard (hyperthyroidism) or not hard enough (hypothyroidism)? The name of your medicine would give it away.
Please can you add an approximate age to your profile: it helps to put your symptoms in context. Whether in the UK, US or elsewhere helps, too.
As others have said, a diagnosis of PMR is not really confirmed until it responds to a 2 - 3 week course of the right steroid at the right dose. There's no need to taper off such a short course if you decide not to continue.
Hi, I am in the UK. I am 65yrs old,female, hypothyroidism taking thyroxine 150 mg daily, I should know I have been taking it for over 10yrs. I put wrong name in my post. Thank you for your advice.
Thank you for confirming that. It's important because the average age for PMR sufferers is much older than 65; and hypothyroidism can present confounding symptoms with PMR.
If you click on "Profile" at the top of your page, you can then work through your "Bio", using the "Edit" buttons to add these facts to your profile. Anyone thinking of contributing can then check your status first, without wading through every comment in every previous post.
Morning Ellibeth 10, apologies for being a tad late to the party but been sorting out a few of my own problems the last few days. It has to be your choice but your symptoms are certainly showing a very good chance of PMR. When I was diagnosed I was in such pain, virtually unable to move let alone walk and pretty much carried into hospital. My own GP's diagnosed and sorted the problem. Within a few hours of taking Pred the pain was very diminished and within a few days I was walking/moving relatively normally and out of pain completely. You have nothing to lose in trying the Pred for a week or two. If it works you have your answer, if it doesn't then you also have an answer and the chance for your doctors to look for other causes.
I've never seen a Rheumy and been excellently looked after by my own GP's.
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