Flare or not

[Helag]

Another question, as I always find the answers from this forum are a great help to me as I know nobody diagnosed with PMR. I wrote a question about 1 month ago.I am trying to reduce my prednisolone dose ready for an abdominal operation in the future. I was down to 4 mg {having reduced by .5mg every 3 weeks from 6 mg}. I love to garden but have done nothing ( since diagnosis 1 year ago) until 3 weeks ago and I was only pruning and chopping for 2 hours the next day a stiff neck and stiff painful muscles between my scapula which worsened. I then improved so the next weekend I gardened again for 2 hours and it then went far worse and I cared for my 1 year old grandson for a day, so lifting and carrying him. The next day could hardly move neck and muscles and same painful on movement. But NOT my original PMR symptoms ( unable to move arms or legs without a sickening pain) have not returned) . I also have laryngitis which has continued for 4 weeks so maybe I should not have made the last Prednisolone reduction. I had a blood test and it showed 46 ( it was £8 at my diagnosis) so the gp reckoned it was a flare. But can it be due to muscle damage after overuse and my laryngitis? I increased to 6 mg 2 days ago and yesterday the pain and stiffness had gone!! But is this just reduction in inflammation of the muscles. Any thoughts would be gratefully accepted.

[PMRpro Ambassador]

"I was only pruning and chopping for 2 hours"

If I had a quid for every time that has been said ... Both involve repetitive use of muscles that are still delicate - the pred has cured nothing, it is managing the inflammation, That is all. The actual underlying autoimmune disorder continues in the background, attacking soft tissues and muscles as if they were foreign bodies. In many ways it is like having chronic flu, proper flu, not a bad cold. It is DOMS, delayed onset muscle soreness

physio-pedia.com/Delayed_on....

There is a degree of inflammation - not sure if it is enough to raise the ESR. But since your muscles are impaired, most of the usual suggestions for dealing with DOMS don't apply sp don't go trying to exercise it away! You will have to wait for the microtears to heal and that takes longer with PMR ravaged muscles and pred.

[Helag in reply to PMRpro]

Sorry I meant CPR 46 (at diagnosis 38).

Thanks so much for your reply and it all makes sense. So my question is can I gradually increase the amount of muscle work I do without this awful inflammation happening again. It does feel like my energy level is always low so I presume that will not go until I am off prednisolone. I asked my consultant and she thought the Laryngitis will have used up my low level of steroids in my body ( being only on 4 mg)and then I made it even lower by being over jealous at gardening. Now as the 6mg is is keeping me pain free and my neck mobility is fine ; then I continue on this for 10 more days and then start reducing again. My mental happiness is being strained with this condition as I never feel I am winning apart from feeling somewhat positive at least when able to reduce the prednisolone. Thanks again for your time and advice.

[PMRpro Ambassador in reply to Helag]

Possibly - but you will have to go about it VERY gradually and get into "training". The others - Snazzy and DL - are the experts on "how much can I do" when it comes to gardening!

You can't "win" against PMR/GCA, you have to learn to live with the gorilla in the house.

healthunlocked.com/pmrgcauk......

Read the links ...

[SnazzyD]

I’m am totally not surprised your body reacted like it did. Pred and deconditioning make one so more susceptible to muscle strain. In my experience it is in another league to getting back on track after a month off for flu or a bad knee or something. That was a real shocker to me. If you have done some muscle damage I’d expect some increase in your inflammation markers but how much I don’t know. I’m assuming the 46 is for the ESR. Not sure what £8 is 😂; ESR of8? The recovery the first time without dose increase suggests it was muscle damage. The second time you did increase so it isn’t so clear.

Did this laryngitis come on with viral type symptoms or just on its own? If it is an infection that may also increase the ESR. If it came on its own keep an eye on it because it can be a symptom of GCA. My voice became more gravelly before diagnosis.

[DorsetLady PMRGCAuk volunteer]

2 hours of gardening is definitely a no, no.

Best to split into sections of 1/2hr at most..then sit/rest for 5 mins, then off again….and repeat…. It’s all too easy to get lured into doing too much all in one go.

I no longer have GCA, but I do have a lumbar problem, so am very aware of how long I can work before I need a 5 minute break….

..and just make sure it isn’t a flare that needs addressing…if it is you know what to do!

[Helag in reply to DorsetLady]

Thank you I will go by your advise on gardening and get my husband to do all the rest of it. Thanks for your article on reducing prednisolone and for flares it is so helpful as info is scarce on these conditions. My reply to PMRpro shows how I am now. Thanks very much for all the advice you give on this site it is always so helpful.

[christine2715]

Additional work or stress can often bring on a flare I find and the fact you have resolved the problem by putting up your pred. probably confirms that but there again the gardening could have been a separate strain and the predisilone would have helped with that - I have osteoarthritis of the knees and putting up my dose eases it. If you are anything like me as soon as you feel better there is a tendency to do all the things you were able to do before but as Dorset Lady says you just have to pace yourself. All the best

[Helag in reply to christine2715]

Thanks so much for your reply. Yes I am discovering at last is that what you say is absolutely true. I just need to pace but it is so difficult when I care for my 14 month old grandson as I get carried away caring and playing etc but I am now learning to let my husband take over for most of the time. My reply to PMRpro gives info on my state now. Thanks again for your reply and good wishes.