Hello, I joined the forum back in September when I was on holiday but went through a bad time and deleted my account. My forum name back then was LittleJane. I apologise and have realised that I need the wise advice and counsel available on this site as the doctors mean well but have a sort of 'one size fits all' approach and they don't really know, do they? I was diagnosed with PMR in August and started on Prednisolone 15mg. Following blood tests in early October some doubt was cast on the diagnosis and I was told I had to wean off the steroids and am currently taking 12.5mg. The doctor is still not sure whether I have PMR or not and I am thinking of going to see my husband's private rheumatologist. In the meantime I am struggling with withdrawal effects of the steroids, I am reducing 1mg a fortnight as advised but feel this is too much for me. I feel isolated and alone and remembered how helpful and supportive the forum was back in September so I have rejoined.
Good Morning: Hello, I joined the forum back in... - PMRGCAuk
Good Morning
Hello again,
Think it probably would be wise to get a second opinion from husband's rheumatologist... and probably the sooner the better.
If your blood tests were the usual inflammatory ones - CRP and ESR -then as you had been on Pred for a while they probably won't have shown anything. So if that is the basis of saying you don't have PMR - it's wrong.
Hello and thank you for your reply. The doubt is because the steroids have not fully dealt with the muscle pain. They did at first and the diagnosis was based on that. Now the aching muscles have returned as I decrease the dose.
Well if I recall you had a very chequered start - and I doubt if your PMR was ever fully under control. So perhaps a new set of eyes and mindset would be beneficial.
Hi LadyJayne, I think many of us have been through this initial period where the GP is going by the book but the book is wrong. Luckily after being introduced to this forum I could talk to my listening GP and tell him the book is wrong and this is how it is - inflammation markers are absolutely no valid guide - reducing Pred too fast as per 15-12.5 -10 mg/day is far too fast. Lucky for me he fully agreed and we get along fine.
The point you bring up on pain and muscle ache - I have defined pain as things like putting my shirt on or tying my shoe laces - that was real pain which the Pred very nicely got rid of, at least for me. The aching muscles or what I now refer to as muscle fatigue is something that for me varies in leg to leg, calf or thigh and intensity. This fatigue is something I am hoping will reduce with time but I have no insight whether this is the case or not. I hope someone can help out with this question ?
good luck and hope you can use the enormous experience of people on the forum to sway your GP
Hello again - welcome back. I like the elevation to the nobility!!
I agree with DL - the way you had your dose messed about at the start is a common cause of what you are experiencing - and they are continuing the pattern. If you are on pred - you should have low markers. And if you aren't on ENOUGH pred you can have pain without the markers rising. It really isn't rocket science.
And I agree about a second opinion too.
Thank you both. I am arranging a consultation with my husbands private rheumatologist in the near future.
good...
Good. Let us know what they think.
I will do, thank you
Hi again,
Oh dear- sounds as though you are being messed around again, which I am very sorry to hear.
Good luck when you see the rheumatologist, and I think you might be well advised to keep in touch with us.
Thank you, everyone has been kind and welcoming. I am humbled by it
Well maybe don’t be on it too much.. that’s what overloaded you last time..😊
I know, and am aware. Thanks for your kind concern
🌸
Welcome back, I’m on the same journey as you diagnosed in sept. Know how confusing and worrying all this is and how hard it is to explain all this to family members. Can you find out if your husbands rheumatologist has any experience of PMR, sometimes that information is available on line. Wishing you all the best
Hello, yes, she specialises in autoimmune and inflammatory conditions. Thank you, how are you doing?
okay so far thanks, four weeks on 15 mg doing four weeks on. 12.5mg , meant to drop to 10mg but anxious about doing it, might try 11.25 for a week first. Did you have classic PMR symptoms, stiff hips, stiff neck and shoulders, couldn’t turn over in bed or walk easily?
I did yes, I still do. Long story short I was diagnosed by a GP registrar based on raised ESR. Then the diagnosis was queried by a senior GP. By then I had been started on steroids and given a reducing schedule. They still can't decide either way which is why I decided to get a private consultation.
rheumatologist sounds ideal, that’s good news! Such great advice and support on this forum, please let us know how you get on 🌻
The pro advisors usually say that it’s fairly definite PMR if the pred clears the inflammation, possibly your starting dose was a bit too low. Hope your appointment sorts this out for you, very best wishes
This is interesting, thank you for posting
Welcome back Jane. Your husband’s Rheumatologist sounds perfect for your needs and having the forum will support you.
Welcome back,glad you have found somebody who specialises in autoimmune diseases.Stay close to the forum.x🌼😜
you’ve come to the right place LadyJayne68. You can’t get any better help than on here.
If you’ve got the opportunity to see a private rheumy, then great!
All I can say is, I’ve been on Pred for 4.5 years, currently on 2.5 mg, but I have been tapering “very, very” slowly, I.e. at 0.5mg a time. Slowness is key.
Do let us know how things go.
Hello again, it’s good to hear from you. I’m sorry you were overwhelmed at the start by advice from the forum. The trouble is PMR comes in all shapes and forms with a common theme of bilateral pain and fatigue which can be managed by one nasty little drug called prednisolone. We all have slightly different experiences of it so you will always get lots of advice at the start and possibly every time you look to the forum for support.
But please be assured the advice is well meant and genuine and is closely monitored by the PMRGCAUk charity administrator for trolling or negativity. You can always report things you don’t find acceptable.
You have had excellent advice today about seeing your husband’s rheumatologist and I would also remind you that you should be pacing yourself and not trying to do too much, and WORRYING is fueling your inflammation. At this stage you should try and treat yourself very kindly, eat well, and rest when you need to. Sending hugs .
Thank you for taking the time to post your lovely response. It was no one's fault I got overwhelmed, it's what I do when I am faced with too much sensory input. I have ASD traits and struggle with multitasking and sensory overload. I have recently seen my counsellor and am in a better place now to deal with this. That is why I decided to see my husband's rheumatologist. The mixed messages from the GPs are confusing me.I know I need to do less, physically and mentally. I am learning the hard way as I am not well enough to go with my husband to visit family, including baby grandson, next week 😢
Everyone here is so kind. I was silly to go away.
Oh what a shame - I'm sure that is upsetting too. Hope they send you lots of videos and pictures.
I get updates almost daily and they visit often 🙂
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