I was diagnose with PMR in June & put on 15mg. of Pred June 15th., two weeks later my regular GP put this up to 30mg.as I was still in a lot of pain (CRP 61.7 & ESR 30) readings from first blood test. Results from blood test July 17th.(CRP 5 & ESR 5) Pred dropped to 25mg.July27th.,feeling pretty good apart from a general tingley/very sensative/irritable feeling over most parts of my body. This even includes soles of my feet & palms of my hands, compared to a lot of other people who contribute to this forum I consider myself very fortunate & feel that my problem is quite trivial. But would be interested to know of anybody with similar symptoms. I take alot of comfort from the valuable advice & help offered by mebers of tthe forum, I know I am not alone!!!
Richard, skin irritation is among the listed side effects of Pred but if it continues then do mention it to your GP in case it is more of an allergic reaction - s/he may be ble to recommend a simple antihistamine medication to help. You have been on rather a high dose for 'just' PMR so hopefully this side effect will improve as you lower the dose. A good response otherwise though, and long may it continue.
Hi Richard I can't help as I am also a new diagnosis like yourself and not sorted yet but I have to endorse the comfort this forum has been I also felt so alone, and friends even said "well you look well" !!! All the best x
Hi Richard I was Diagnosed May 2014 started on 15mg two weeks then 20mg two weeks and started Reduction from there,After two Flares and a lot more Knowledge, Iam just starting to reduce from 40mg, This time I will be Reducing a lot slower than last time. Regarding the Sensations the top of my Back broke out in small Vains and I used to get a Horrible Crawling Sensations and it used to itch, Don't know what caused it but its gone away for now.1st May 2014 at the start of all this PMR ESR 118 CRP100.Hope this has been of some help for you.
Hello richard, I can't say that I experience this particular side effect. In fact so far I've done ok on the side effects, can't think I've experienced 1 although I'd hate to think about what's going on inside my body!
have you read the Bristol PMR plan, very informative too. Many of us follow this plan until we hit the 10mgs mark then go onto the dead slow and almost stop plan. As 1mgs drop each reduction is just abit too much for some of us from that point on. All the best, tina
Hi Richard, I have had PMR for 14 months now with similar side effects as you. One of the worst for me seemed to be skin irritation as per Mrs O which my doctor put down to Hives, this seemed to disappear once I got my dose down to 15mg a day (which I am currently on) and I have been rash free for nearly 3 months. The main thing now is to reduce very very slowly as everyone will tell you as with most of us we have learnt from our mistakes. Good luck going forward.
Hi Richard and welcome, I was diagnosed. In February this year with PMR and then GCA. Just watch when your tapering down. I started off with flu like symptoms. Pain in neck. And then pains in my thighs until I couldn't walk. My CRP was 83 I seen a Rheumatologist . I was put on 20mg pred and it was only when they reduced the dose , over 2 weeks I was down to 12.5 and I started to get jaw pain and arteries in temple area were swollen and then terrible headache. I was admitted to hospital and was put on 60mg pred.had positive biopsy and said I had severe form of GCA. I was discharged after 4 days and felt great. My CRP had gone down,
But next day headache came back, went back to hospital ( they didn't seem to want to increase the dose ) so they prescribed pain killers, but after a week I had temporary sight loss in right eye which was so scary my CRP went back up to 70, so then they up my dose to 80mg and everything settle down, I'm down to 15 mg now but am doing my own tapering down which is slower then they suggest, I have a lot of side effects including irritable.but check with doctor. just come down off steroids really slow take care
MrsO forgot something she told me and I asked, got it and then had very little problems.
Double Base Gel, can be prescribed by your GP because of being on pred, which causes skin thinning and sometimes irritation.
You must follow the directions of using it. I still use it although I have been off pred going on nearly 4 years.
If your GP won't prescribe it, it can be bought at Boots around £11.50p Worth every penny as I no longer get it on prescription I buy it and never use soap or other stuff.
Well remembered, Lodger - good job I've got you!
My last repeat prescription request for Double Base was refused on the grounds that our local area Health Authority is no longer prescribing emolient creams and the like, and I guess that will now apply to many local authorities. No matter - just hope the day doesn't come when we have to pay for our meds!
Richard, I remember the very sensitive feeling when I was on the higher doses; rather the same kind of feeling I got if I had feverish cold and almost like a mild electric shock. Is that how it feels to you?.
I can't honestly remember at what stage it stopped but I connected it with lowering my Pred. doses. As you say it's better than the pain any day but a bit disconcerting. Hope you saty pain free ( ish ) and stop tingling before too long.
Hi mrs O just finished the changeover cleaning, luckily the cottages wereleft nice and clean so not too much graft.
i do have to pay for my prescriptions, so everyone out there who also,has to pay for them purchase a prepayment certificate. For a payment of £104.00 for a year I have saved myself a fortune in prescription charges. It's not just the preds that are covered but all medication prescribed. Honestly add out just how much your spending each month and multiply by 12 you'll save loads.
regards, tina
Once you are 60 - no prescription charges! Under 60, if you need more than 5 prescriptions a quarter - worth getting a pre-payment cert.
Hi Betty, No Feverish symptoms what so ever, just this on going tingly/irritable/ultra sensative feeling that seems to go on for all my day time hours. I mostly sleep OK so it does not affect me over night. Today the tingly feeling has only been in my Hips/top of my thighs & hands, it has left the rest of the body alone???. I still think that I'm one of the more fortunate Members of of 'The PMR Club' as with care I can do most of the things I used to do Pre. PMR, be it that I do them all alot slower and in maller bites.We all have to manage in own individual way whilst listening to others & using bits of good advice as & when applicable. Thanks Betty & all others who took time out to reply to my original querie. ATB Richard
PS. As a complete aside, does anybody Know of a PMR support group in the Preston/Blackburn area of Lancashire?
Just changed my forum ID 'Nick Name' from richard 21217 to Mr.Solo, this was the name my dad used to sign his score card when he played cards at whist drives in the 1950s, sorry for any confusion this may cause on all fronts. Younger people + non UK residents may not even know about whist drives, definitely not part of the digital age!!! ATB Mr.Solo (richard21217)
How about Mr.Solo and either UK or County - easier when we know where you are.
Yes, I don't know about whist drives but when I saw Mr solo I immediately thought, Hans Solo, from the man from uncle! I think! Regards, tina
Tina, I must remember that not everyone is as old as me so still have to pay for their prescriptions!! Good advice from you for those that do.
That's good managing the changeover cleaning in just one day of the weekend....and in spite of having PMR. Hopefully that means you can have a relaxing Sunday, with your little 4-legged friends!
Hi Mr Solo and welcome under your new name! The Geater Manchester and North West Support Group meet in Leigh, at Sporting Lodge Inns Greyhound Hotel, Warrington Road, Leigh WN7 3XQ - any good to you. If so and you send me a PM, I will give you the website and other contact details. Can't quote the website here or it will disappear for moderating.
Go to this pinned section on this site http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Then go to North East site and look under Support Groups, you will find the email address and telephone number for Ann Chambers the lady who runs the PMRGCA UK North West Support.
Napoleon...