having been to my chiropractor for 4 weeks he felt my arm and neck pains were something else and sent me to my doctor for a blood test I saw a locum who took the blood there and then and got the result back same day rang me and diagnosed PMR my ESR was23? He gave me 15mg if prednisolone I took it morning with breakfast. By the 3 day I was crawling the walls NO sleep my body was crawling and I felt. like a zombie But the pain was gone however I couldn't take the pills my eyes felt like they were being pushed out of my head and I was shaking. I went back we stopped the pills and I am back to square 1 trying neproxen helps the pain but back to docs next week if not gone any ideas on reaction to prednisolone , what do I do next, I did have a Very bad reaction to tegretol many years ago nearly killed me any links?
Sue, I expect you were taking your Pred in the morning as that's the usual advice. I, like you, had unbearble side effects but they did not start until I had been on Pred for a long time.My GP said try taking them at night and that helped me a lot. Don't know whether the idea was that I'd have the jitters in my sleep. Sleeplessness was not one of my problems but, for those for whom it is, taking the pills at night would not be an option I imagine. Hope someone comes up with a solution that works for you.
I don't understand, 'you said back to square one'.
Did you stop taking them without tellling or seeing your GP?
If so you need to see your GP and talk the whole thing over. It is unusual for someone to be allergic or have such a bad re-action to pred and you really need medical advice.
No I went back to the doctor and he stopped them. Saying we could try nsaids just to make sure diagnosed PMR correct as they wouldn't work if it was and I'm to go back next week to restart pred if still in pain but a lower dose I'm very frightened now thankyou for your concerns and Betty's it's just better not to feel so alone.
That is a wait off my mind and you seem to have an on the ball GP, so stick to hm like glue.
NSAIDs won't touch PMR
If you really cannot take pred, this might just help.
A Lady in Scotland had the same sort of problem, she was sent to a Haemotologist and whatever s/he said, afterward she was able to take pred. If she had not been able to take it at all, they were going to see if a new drug (licensed for RA) now currently undergoing trials for GCA would help. So don't despair.
Thankyou for that perhaps she will come back to me later .
Hi Sue,
Sorry to hear of your distress.
While I was in extreme pain for 4 months and had no clue what it was from, I was taking over the counter anti-inflammatories and they did not help. I tried them all: naproxen, ibuprofen, aspirin, you name it. I ended up with a bleeding stomach and then had to take Tylenol (paracetamol) instead. (also did not help).
I did see a very good acupuncturist and she helped me somewhat.
Then, I found a good rheumatologist, who diagnosed PMR and put me on 20 mgs of Prednisone, and the symptoms disappeared. I was high as a kite when first taking 20 mgs, even though I split the dose, half in the morning, half 12 hours later, for the first 6 weeks or so. My reaction was not as severe as yours. Eventually, my body adjusted. After those first weeks, I started taking the Prednisone all in the morning and still do with no apparent ill effects other than my cataracts got worse, but those are now fixed.
I hope you find relief from the pain.
You might try splitting the dose as it is quite a whammie to take 15 mgs all at once, all of a sudden.
All the best,
Paula
Hello sue, how awful for you. I think there is a member of the forum who. Like you cannot take preds, I'm not sure why though, I think because of her stomach. Whatever, I understand she receives her steriods via injection monthly. That could also be an alternative.
hopefully she'll be online soon.
all the best, tina.
Thankyou going back to docs next weds so will c then
Thankyou will bear all this in mind when go back x
Yes I couldn't tolerate Prednisolone so now have 120 mg of depo medrone injected started on 2 weekly, then 2 and a half weekly then 3 , three and a half and now 4. So side effects whatsoever. Good luck
That was meant to read no side effects
Thanks again will look into it
The consultant who I saw privately at the beginning told me that every 3 weeks was the equivalent of about 6 mg a day of Pred and now I am on 4 weekly (had one this afternoon at doctors and probably have gone longer) is equivalent just over 4 mg. from what I have been told, although GP won't do anything without consultant's say so and its a very long wait down here on NHS, I need to stay on 120 mg for 3 more months then try to stretch it to 2 monthly and then reduce the amount each time. I just find it magic as I don't have to take pills and the injection kicks in within 24 hours. When I first saw the consultant I couldn't get out of bed or dress myself. Had the injection at 5 pm and the next morning I was a lot better and by the evening back to normal. I now have no tiredness and sleep well. Walked the dog for 45 minutes this afternoon in the woods and walked around historical Rye with some visitors for 3 hours yesterday. I'm not sure why this isn't the treatment offered to everyone.
Sue, your Dr is unlikely to have diagnosed you with PMR from that ESR result along as a reading of 23 is within the normal range. Now, if that was a CRP blood test result, that would be a completely different kettle of fish as the normal range for that is from 0 to 5.
However, one in five patients with PMR never have raised blood test markers.
if you do have PMR - and the quick response to the steroids can pretty much be taken as confirmation of that - depending on the severity of inflammation you may be able to get away with a lower starting dose, ie 10mg. My rheumy who has a special interest in PMR/GCA and is involved in research, is of the opinion that a lower starting dose can prove successful.
Very interesting Mrs o I will check that he said recommended 12 to 16 max I will check thanks
I have had to split my dose because of side effects....It`s worth a try....
I think because you have been very lucky - for most people it is used for it doesn't last as long. 6mg/day wouldn't be enough for very many people.
How long ago was the beginning?
Around January time. Yes I am probably lucky Eileen but have read research papers that favour Depo rather than Pred . Believe me I was like a 90 year old before the initial pills and then the jabs. I do think it is such a debilitating disease and nobody understands. However, I have survived being born with Marfan Syndrome, 2 perforated stomach ulcers, breaking my back eventing my horse which is not possible now, and Zolinger Ellison Syndrome so believe me this is a very crap walk in the park but survivable. Not life threatening and as I have always done, tried to get on with it and live every day. I did have a huge wobbly before I married Miguel but I just thought I have survived before and this lovely man is there to help me over this hurdle