Has anyone developed shingles from prednisone use?

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

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.

Thanks Eileen🌻

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 ;-)

Diana, hang on to the fact that you had such an improvement immediately after returning to 10mg - it will take a few days for the inflammation to really stabilise.  Just be sure to take things easy for those few days to help the steroids along.  It's probably quite feasible that the relief from the increased dose taken so early in the morning may not continue into the evening.   Everyone can be a little different in how they respond to the steroids - the pain relief from any given dose may last longer for some than others.  I used to take my steroids around 9am and my most comfortable time of day was mid-afternoon.  Fingers crossed for a continued improvement for you.

No real changes although living in the Pacific Northwest we have had our share of  grey damp days with teasers of sun thrown in so we don't go completely crazy.  We have also had some stress with the sale of our business but that has been going on for months.  

Definitely have been better today and not doing much at all.

think I just need to get back to Mexico 😉

Thanks Mrs. O, 

think I'll move the time up a bit gradually to my regular time. My body is used to that.

Thanks for sending your good wishes😊