My upper body stiffness continues. Mostly it feels like someone has tried to rip my arms from my sockets! Oh and the typical hard to turn over in bed! But it is my shoulders this time not hips!!!
Also getting up from a lie down position when you need to push up on your arms is difficult! So I am thinking PMR!!! I have a supply of steriods but am not sure how much I should take??? To be honest it’s now getting me down. When I sneeze my chest is really sore like I have pulled a muscle.(I haven’t)
Not sure if I should get my bloods done on Monday or just bite the bullet or in this case the steroid. Just not sure what does to go for.
Oh the joys but I know that this isn’t right!!! It’s 3 years since my original symptoms started 2.6 years since I was formally diagnosed. I had been on steriods for 2.2 years and looks like I am heading back😢
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JulieR2
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As you know the starting dose for PMR is between 15-25mg . What dose did you start at last time around - I say last time loosely as I don’t believe it went away, and I think I said that in answer to your previous post.
I would suggest you book for bloods, but in the meanwhile take a couple of doses of 15mg over the weekend, and see what happens. If you get a good response, then that’s probably your answer, and then discuss with GP on Monday. If the Pred doesn’t work, then you can stop it with no harm done.
If you are dubious about taking Pred without medical advice, then ring nhs helpline, explain your symptoms and situation, and ask if they agree taking Pred is recommended. That way you are covered should your GP query.
That really is early days - somewhere between 3+ and 5 years is far more usual. So, as DL says, it probably hadn't gone away but was being managed at a low dose. It may even mean you can get away with 10mg - or at least will be able to taper down quite quickly to well into single figures.
I think it is wiser for your long term care to wait and have the blood tests done on Monday , but then ask if you can start the initial Pred dose straight after the blood test.
If you take the Pred beforehand , you may not get results that will allow a definitive diagnosis and that could cause you more stress and make it harder to get the long term care you need as you go along.
Try and rest and take movement slowly over the weekend and use what ever you can that you usually use to relax to distract you.
Don't try and just push through the pain to do daily chores and scale back your plans this weekend until you see someone on Monday.
Tell them you need an emergency appointment if they say they have no space on the list , you don't want to wait past Monday.
Thanks everyone I will let you know how it goes! Funny old disease isn’t it! Hope mine is a cautionary tale to those who are in a rush! I can tell you it’s far more debilitating for me being off pred if it’s needed rather than being on it if you need it!!
I'd get the blood work first. Your results may be effected by taking the pred beforehand, and you may have a really hard time getting your medical team to sign on to your diagnosis thereafter.
Hi there I have already taken it as I couldn’t stand the pain. I am sure my GP will be fine as I do have a long relationship with her. But I will let you all know how that goes😀
It’s only been a year Julie. You know already don’t you? The dragon is awake. Do you know, your vivid description catapulted me back to my early florid symptoms and made me realise that what I moan about now, 3.5 years on is a walk in the park in comparison. I am on 4.5 mgs.
I wouldn’t want to wait - talk to your doctors - but this fire needs putting out and quickly. I might try 10mgs. I am grateful for the reminder about how bad it gets and I feel really sorry for you in all this scary pain.
Thanks Jane. Yes it definitely is. I have had it three years and the first lap was 2 years 2 months on steroids! 4 months off and now back on!! I took 15mgs yesterday evening and this morning I am already feeling the difference. ( I know I was advised to wait) You are so right we quickly forget how limiting the condition is when we are on steriods and the focus is being off. I had the briefest glimpse of being steroid free but right now I am happy to be back on. I work full time and have done ever since original diagnosis apart from a month off. I am retiring in 2.5 years so my plan has always been to be fully recovered by then! So keeping at low level doses is the best policy! I plan to try to reduce quickly to a dose that maintains if I can. Then it’s dead slow all the way😂
HI, I had these symptoms early on in my first two years (took two years to get the proper diagnosis of PMR). Once on Prednisone (I started at 20 mg) these symptoms drastically were reduced but I had other symptoms that were less painful. I gradually reduced dosage to 0 three different times during the last six years (this includes the 2 years undiagnosed) but had flairs each time and had to take the Prednisone again, but not at the original starting point of 20. One time it was 15 and the next 10 and once even 8. This last time it was again 15 but am now down to 1 mg every other day and have been on the that for about one week. I am hoping that this time it will work. Try not to worry about the time you have been on steroids and focus on what reduces the symptoms at the lowest dosage. However, you should not do this without a doctors advise. I personally knew of someone who only had PMR for one year (a man) but my doctor told me that he had a patient who was on Prednisone for 10 years. And my doctor told me of another man that couldn't get off Prednisone when it got down to 3 mgs. So much is trial and error, I believe, and knowing your own body. Has your doctor ever mentioned having a SED rate test? My doctor always makes me have this test when I think I am having a flair to add more credibility that I really am, even though I know all of the symptoms and I tell him, "You would know if you ever had PMR. It is impossible to attribute these symptoms to anything else.: Good luck and hope you resolve your dilemma. Robin
Thanks so much. I haven’t seen my doctor for ages. Really me not them. I have taken some prednisone last night as I couldn’t stand things any longer. The results amazing! So I know I have my answer!! I will see my GP this start to calibrate what I need. The reason I was in a rush was because I had had so many problems with my teeth etc I believe because of the pred but I obviously still have PMR so I need it!
Hi Robin just re read some of your old posts. Some of the things I have had are similar. I have had clavicle pain and didn’t know if it was PMR. As others have said it’s so weird this disease and the way it manifests itself . I am ok about taking the pred as I can’t live my life at present without it.
Over 40% of PMR patients are still on at least a low dose of pred after 10 years. I've had PMR for 15 years, diagnosed and on pred for 10 years - and currently on 10mg. I have been lower but every few years I have a flare of symptoms.
It certainly is a bizarre condition! I have had PMR for 3 years and whilst it was initially all focused in my hips and not much in my upper body it then switched about 18 months ago to my upper body! I can’t even take take a deep breath in, turning over at night is a real challenge and as for sneezing.....OMG, I have to push on my sternum to reduce the pain which to the outsider must look very odd! Do hope you continue to get relief from our friend Pred!
Thanks so much. My experience seems to be following yours. Hips to start and now upper body! In a bizarre way it’s reassuring that others are having the same experiences although I wish none of us were in this pickle! I remind myself that it isn’t forever and there are much worse things to have.
There are but this one takes the biscuit for weirdness!! In the midst of PMR I was diagnosed with breast cancer following a routine mammogram last September. It was DCIS so early stage but still had to go through mastectomy with reconstruction and some radiotherapy. Funny thing was that I wasn’t half as angry at the time than I was when I was diagnosed with PMR. I guess because the cancer was painless but PMR or Polly, as I like to call her, makes herself known and cannot be ignored!
My shoulder would pull out of the socket during sleep and cause horrible pain until it went back in. Did sleep on that side with arm forward though, the way I like to sleep. After two years on prednisolone it Is mostly ok now but comes close sometimes. Not sure if it is a PMR/GCA thing or ageing.
Hi Julie, sorry, a bit behind reading these, what a devil it is. Just when you thought it was all behind you. You're right, your post is a cautionary tale for us all as we aim for that magical 0 dose, I am dreading getting there so will continue nice and slow. Am currently between 5 and 6, and seem to be doing OK. I now say,, 'seem', as who knows??? We all get hooked into a false sense of security I now feel. Glad you're back on pred though. As you say, life stinks when you're in so much pain. I couldn't stand it before diagnosis and was in tears at the Dr's. All the best, and do keep us posted. I'll try to remember to keep up!! 🤣
Thanks so much. I am at day 4 and I took 7.5 mg today. I am just so much better and hope to get to 5. Where I plan to stay for a month and then try and taper. Living life is the most important thing and I was feeling really fed up. Hoping I have caught it in time. I amNow pain free and the sore throat I was feeling has gone. Mind you haven’t seen a dr yet as I didn’t want to see a Locum😂 good luck to you. 😀
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