Hi, all, just feel like asking for support or counsel. I have been in so much pain for a month, trying to keep to just 10mg of prednisone. Now I have a sharp pain in my back ribs that goes up to my shoulder and down my right arm. I don't know if I strained a rib or what. Today has been murder and I feel like crying. My apt with dr rheumatologist is Thursday. Anyway the past two days I went up to 20mg of pred, and after taking it I felt better for awhile, till it came back. I don't think I should take more than 20. I hope I can stand it till Thursday.
Hi debbiehurts I feel your pain my love I am a recent sufferer also and I know exactly how you feel and in truth you can't describe the pain to anybody else unless they've had it themselves it's chronic the pred is for the inflammation and like you I'm on 20mg and I won't go any lower as this 20mgis just about taking the edge off my pain but I between taking this pred I also take up to 8 paracetamol per day for the pain and that does help slightly but you have to be a little bit active so as not to stiffen up but also to take plenty of rest as this pain effects you both physically and mentally
Keep in touch and let us know how you get on at the hospital xxxx
Debbie, you are really going through it, aren't you. When you see the Rheumy just remember to tell him exactly how it has been and then some. Don't dismiss his questions with an airy 'I'm fine' which we all do sooner or later.
I think you struggled too long and perhaps should have gone higher much sooner. There is no point in forcing reductions or struggling to cope on a certain dose as that is a no-win situation - you get what side effects are still hanging around but no benefit from the Pred. 10mg is often a sticking point and some have to try it several times before it is successful.
It's also perfecly possible that you have something else going on, just because you have PMR doesn't make you invincible to other bugs or conditions going around. There are several conditions which have similar symptoms to PMR.
I do hope you feel better soon.
Hi Debbie, and I'm sorry you're in so much pain. However, if you have been in so much pain for a month, why ever have you been "trying to keep to just 10mg of prednisone"? If this is a flare in PMR inflammation - ie if your symptoms are similar to those at the start - then you need to be on the right dose that controls that inflammation, otherwise you are taking some steroids with their possible risk of side effects but without any of the benefits. If increasing back to 20mg hasn't solved the pain, then you may have pulled a muscle somehow, in fact your description of a "sharp pain in your back ribs that goes up to your shoulder and down your right arm" doesn't sound much like typical PMR pain. If you can get to a physio who understands PMR and the need to not pull anything about but just use gentle massage and heat treatment that could help enormously.
Hello Debbie.. I know exactly how you feel. Just over 2 year's ago I was diagnosed and I too made the same mistake trying to lower the pred dosage. I totally agree with everything Mrs O has said and, as I was advised by people on this site, treat steroids as your friend. It makes sense! Hope you improve soon.
Thank you all for your support, I appreciate it because it shows I'm not alone. I guess I tried to keep to the dr's idea of 10mg because he was so afraid I was going to gain "30 pounds" if I kept it higher and he saw that my sed rate was down to 20, so I guess he figured my pain was part of my "depression." Maddening!
Yes, I do think the shoulder/rib pain is a strain, since I had a bad cold two weeks ago and coughed hard. That's the sensible explanation, but of course, I looked back rib pain up online and found sometimes a person has gall bladder trouble or other serious problems with that pain, so I got scared. I'm funny that way...;O)
But the main problem is the PMR type pain in my shoulders/arms/hips/legs and my knee which I think needs a cortizone shot again. My other knee is a replacement. I also have arthritis in back and neck! It is all not due to depression, but I know my depression is linked to all this pain. Who wouldn't be sad about it?
Thanks for letting me complain. I try not to complain to people too much.
It still worries me a little with regards to the pred as my doctor said that although I am waiting to see a specialist I should continue with 20mg no more till I see the specialist but with reading other reviews pmrs are upping and downing their own pred as to what they seem to feel is right for them and I am wondering whether to do the same as 20mg is only barely touching the inflammation and I'm not sure what to do about this atall
with regards to you having a good old moan that is what we are all here for to have a good old moan to catch up on ideas and to know that we are not alone with this nasty painful PMR
moan away darling and give us some ideas and feed back it's always useful
There is no point struggling to keep to 10mg pred - you have all the downsides and side effects but none of the benefits. All that happens is that the inflammation gets out of control and you are back to the start.
I suspect what you have isn't just from the PMR - there is something called myofascial pain syndrome where the same substances called cytokines inflame local areas of muscles and can cause knots in the muscles. The higher dose of pred would help a bit but not for long - a cortisone injection at the trigger point is far better. It gives a higher concentration where you need it and causes fewer side effects overall. A good physio or massage therapist would also be able to mobilise the hard muscle cells - that's how I dealt with it for years.
I'm so sorry you feel so rotten - and I do hope the rheumy can offer some suggestions on Thursday. Some are very good with this sortof thing, others aren't - so I hope you have the right sort.
Those of us who adjust their doses themselves have been doing this with our doctor's blessing for a long time after a diagnosis based on 15 or 20 mg achieving a good result.
My concern for you Marilyn is that if 20mg isn't doing much it isn't PMR you have but one of the other things that look similar. If it is PMR then 20mg should achieve a good effect - if you need more it can mask the symptoms of what you really have.
Yes very true Eileenh I know you're right with this and it makes sense now to just stick with the 20mg as if it is something else I would be doing more harm than good but I feel so desperate at times due to the constant 24/7 pain and I suppose I'm clutching at straws for a bit of relief
so no I won't take any more than 20mg and just try and be patient thank you I can always rely on you for good answers bless you xx
Hi Everyone, I went to the rheumatologist today and was in significant pain especially in my arms. Turns out I had 5mg pred. not 10mg, as I thought. So while I was trying to live on 10, I was actually living on 5, and when I went up to what I thought was 20 was really 10. I guess it might help to read the prescription bottle, eh? Anyway I'm to try 17.5 for the next month and see him again. I came home and took that amount. We'll see. Thanks for listening.
Debbie, Doh!! Blame it on Pred head - I do and I'm not on steroids any more! Hope to hear happier news from you now.
Haha, yes, I hope so, too!
That will account for a lot of things! ;-) Don't worry - most of us have done it at some point - you tend not to notice if you take too much! But it wasn't anything we'd have thought of!!!!!!