I had arthroscopic surgery on Nov 18th on my ankle and a couple of weeks ago developed a rash on the outside of my ankle fairly close to one of the incisions. It is only about 1 1/2 inches square in area and started by being very itchy. I couldn't/can't see it very well because of the location but must have scratched it fairly hard and although it didn't bleed it scabbed over much like a mosquito bite would. It is healing very slowly and sometimes gets itchy again. I now have pain in that spot and it hurts to lie with the side of my foot on the bed or sometimes when nothing is touching it at all. I usually heal very quickly, even with the prednisone, and I can't quite figure this out.
I've also read a report done that says recent research has shown people with shingles are at a considerable risk of having a stroke because of the affect of the virus on blood vessels and that antiviral medication should be given as soon as possible. When I checked on the internet it says antivirals shouldn't be given to people taking immunosupressive drugs like prednisone. FYI I am 65.
If anyone has experienced anything similar to this I'd love it if you'd share.
Thanks,
Diana
Sorry should have told you I have had PMR for over 2 years and am currently on 4mg of prednisone and may increase to 5 because I recently tried a decrease to 3 1/2 using the very slow almost stop method and it didn't work for me this time. My PMR pain seems to be getting worse and that's why I'm considering going to 5mg.
It doesn't sound like shingles - shingles is from the dormant herpes virus left in the body after having chicken pox waking up again. It is in nerve endings and usually in specific places - most often around the waist area though it can affect other places too. It sounds more like infection or an allergic from the arthroscopy.
I'm not sure what you found on the internet - they commonly use antiviral medication to make shingles less bad, usually acyclovir, even when we are on pred. You are on a low dose now so it shouldn't make any difference I would have thought.
I get patches of itchy skin, mostly smaller than that though, they are probably keratoses from the pred. I have a patch on the back of one ear at present. They started when I was on Medrol and is almost gone now.
Sounds like 4mg is where you are meant to be - like me!
Thanks Eileen, don't think its keratoses but I was also thinking of something relating to the surgery. Just a bit confused about the pain with or without contact. I'll try some hydrocortisone cream I have and see what happens.
I agree, I am meant to be at 4mg
That old patience thing again.
I hate PMR!!!!
Hugs, Diana
Hello mrs Mac, have you thought of using germoline or something like that, it has an antiseptic quality they may help, also whenever you damage your body there is often abit of pain until the damage reduces. Also I suffer from cold sores very badly, always have, at least 1 a month and I was given acyclovir tablets 400 mgs to help heal them especially when they are very bad and I'm on 9.5 mgs preds and I was given acyclovir Tablets even when I was on 15 mgs although I realise cold sores are not as bad as shingles. Regards christina
I felt a tiny needlike prick on my waiste band area. Just one (and a half) tiny red spots. However, I am a hot kind of person. Have red hot hands on even the coldest of days (I had a menopause of hugely hot flushes) and have had high fevers with PMR and CGA. Around the time of the discovery of the tiny blisters, I had an entire week of the most horrendous shivvers and shaking with hypothermia. I had toi get a hot water bottle every night and often during the day
because I was shaking with chills. If this was just a touch of shingles, I would not like to have it badly. One of the problems with this illness is that it requires such a time of GP and hospital appointments, often travelling on public transport, all the easier to catch an infection.
Shingles usually occurs in older people with a weakened immune system.
It usually begins with pain or tingling, not itching, which can be quite intense, and can last for many months.
It also can cause much fatigue.
I agree with Eileen. This doesn't sound like shingles.
I, too have been on prednisone, and have been tapering for 9 months.
In September, I began having pain on my forehead , over the left eye.
it took 2-3 days to figure out what was wrong, and and by then, it was in the cornea, of the eye.
i was lucky that the pain, and fatigue, lasted only 2 1/2 months, after takings the initial dose of Acyclovir, which is the anti viral med you mentioned.
I was also, very lucky that I didn't have complications in the eye.
I think you would do well to follow Eileen's advice.
barb
Diana, although shingles can occasionally occur in the most unlikely places (I had it on my lower forearm), your rash sounds more like an infection, perhaps caused by scratching the itchy area initially. I think you would be wise to get it checked out, and antibiotics prescribed if necessary.
On the PMR front, don't hesitate to go to 5mg rather than put up with increasing pain. After a flare at 3mgs requiring an increase to 10mg, my rheumy kept me on 5mg for 6-7 months. I then followed a snail's approach to reducing - just half a mg decrements, tapering over 7 weeks to the next dose. It worked all the way to remission and zero Pred.
Hi,
Impetigo springs to mind, blisterey spots that are itchy, normally a child's complaint but I have seen adults with it too.
Thanks everyone for your responses. It sounds like it's likely not shingles so my first step will be to try something topical and if that doesn't clear it up I'll see my GP to see what she has to say.
Mrs. O, I.ve increased my pred to 5mg to see if the pain will subside. Could I then go down to 4mg fairly soon? 4mg seemed to work well for me. No problems travelling, having surgery or a nasty cold.
if it doesn't work should I blast it with 10mg and if so what does the reduction plan look like?
Thanks, Diana
If the 5mg works (and at this level it did for me) I took it for a few days until it all looked good and then went back to 4mg straight away. If that doesn't work, you could do the same with 10mg for a few days, back to 5mg for a couple of days and back to 4mg. The quicker you hit it, the less you need.
Diana, if you find being back on 5mg resolves your pain, then you might be successful returning straight back to 4mg where you last felt comfortable. Certainly this can prove successful on the higher doses. However, doses below 5mg are very low doses and as you reduce from this level you are reducing by a higher percentage with each reduction, and it seems the body is very clever at noticing the tiniest amount of steroid withdrawal. So, if it was me, I would be tempted to go via 4.5mg.
When I experienced worsening symptoms at 5mg, I continued reducing to 3mgs (it was some 7 years ago so we didn't know then what we know now!). Needless to say once at 3mg I was almost back to pre-diagnosis days and unable to walk for the pain. The rheumy thought going back to 4mg would fix things but it didn't and blood test two months later showed increasing ESR and CRP. He advised increasing back to 10mg for 2 weeks, followed by alternate days of 7.5 and 5mgs for 2 weeks, then 5mgs for for 10 weeks. At this point, and in spite of blood markers having returned to normal, he decided to keep me at 5mg for another 4 months. It was the point where things went seriously pear-shaped before, so with hindsight it was the very best advice to really stabilise the inflammation.
Because you are tackling the increased pain with a small increase straightaway, with a bit of luck and the proverbial following wind, you will be luckier than me and find that 5mg does the trick. I do hope so.
Thanks Mrs. O. Rather than take a chance on symptoms getting worse ( pain and stiffness has increased the past few days even at 5) I think I'll justs go to 10mg for a few days then reduce till symptoms get better then decrease to 7.5 and see how that goes. If I feel the symptoms aren't returning I'll follow your method of reducing to 5mgs and stay until I think my body has accepted this dose. I haven't reached any where near my original symptoms and have only some stiffness and pain in my butt and hips so maybe I can reduce a little faster than you did. I hope so... I did only decrease from 4 to 3 1/2 on the VSAS method starting Jan 4th and can't quite believe that my body has rejected this dose. I been at 4mg since Nov. 9th and will definitely give it a longer at each dose from now on. I'm afraid this seesaw with pred. is going to make things worse each time so staying on the same dose for 4 or 6 months is a better plan. Even longer if it sees like it's needed.
How did you know when the PMR had finally burnt itself out? Is there a way of telling or do you go by markers since your prednisone dose is so low at that point?
Thanks for your input. It is very much appreciated.
Hugs, Diana
Boy, that was confusing?? I meant, I will increase to 10mg for a few days and if symptoms are gone will decrease to 7.5 and see how that goes.
Golly, I think it's affecting my brain to
I can't remember what MrsO said, another lady said she woke up one day simply feeling WELL and nothing hurt! She'd always stuck at about 7mg before. She and I matched each other with symptoms and reductions on similar schemes (hers isn't quite the same as mine) but she has got to 1mg, I stuck at 4mg but I do feel pretty well. I can't use markers - my ESR was 4 even when I couldn't move, it has never been above 7. I think this lady is the same.
It is really a case of every few months trying another 1/2mg reduction and being very aware. With the very slow reductions it is unlikely to be steroid withdrawal and they allow us to identify the correct long term dose very accurately - that's why the 1/2mg makes such a difference if the PMR is still there.
Diana, I felt pretty much quite well when returning to 5mg and below following the flare. However, because I still had a certain stiffness in my leg and ankle joints, and then at around 2/3mg some pain in an upper arm muscle and shoulder blade, I knew that I wasn't back to 'normal'! I did find a wonderful physio who found some knots in my shoulder blade area which he treated with gentle massage, heat and ultrasound over a few sessions which resolved the pain. I did have a long bout of what seemed like sciatic pain whilst on 2mg which rather confused the issue but ESR and CRP tests were normal so sciatica was confirmed and it resolved itself many months later. Blood tests always proved to be a very reliable guide for me, in that if I thought I might be having an actual flare they were always found to correspond with higher readings.
When I came off steroids, I was still finding that a little stiffness would return in my legs following any walks up the slightest inclines or steps. My knee and ankle joints remained stiff and I found myself accepting that this was something I just had to put up with. However, many months later I suddenly became aware that this too had resolved. We are told that it can take our bodies up to a year to recover completely once off steroids and that certainly proved to be the case as far as my knees/ankles were concerned. I had spent months in bed undiagnosed so I guess my muscles were weaker than most. It's important to remember that long-term steroids can weaken the muscles so even when we feel well, we can cause injury if we overdo things before those muscles are back to strength.
I do apologise, Diana, I've gone on a bit here! I hope it helps somewhere between the lines!
Thanks Eileen, it is so crazy how prednisone decreases in PMR are so different for each person. It really is trial and error but helps to hear the experiences others have.
thanks Mrs. O, certainly no need to apologize😊. It is helpful to hear how your journey to "0" went. I haven't really been watching my markers because in Canada they will only allow one or other of the tests and I only see my Rhuemy once every 3 or 4 months. Since I'm having a flare right now I may give him a call to see if he'll fax a requisition to the lab.
I took 10mg at 4:00am on Thursday morning and had quite an improvement yesterday. Much less pain and stiffness until the evening. Took 10mg this morning at about 4:30 am and still having pain in hips and butt. Will keep at it for a few more days to see how I feel. Hope I don't have to go higher than 10mg. I've always taken my pred in the morning after I get up and I'm wondering if it wore out in the evening yesterday because I was taking it so early in the morning??
It will take a few days to calm down a flare if it really got hold.
I didn't get significantly below 10mg for 4 years - I got down 9mg and went back up several times. If I'd got to 7.5mg I'd have been over the moon. Hence being grateful to be down to 5mg and fine.
Haven't you had some eather changes the last few days? I always suffer from weather changes - but not when they happen but a few days before. I'm more accurate than the weather forecasts - not that that is particularly difficult ;-)