Prednisolone experience

[waltztherapy]

Prednisolone experience, thanks for request.

It's nearly a year since my PMR diagnosis and starter treatment of 15 mg of prednisolone for three weeks. There was some pain relief so I was started on a tapering programme. After weeks of remissions and flare ups, I reached 10 mg last August for a happy four weeks with the least pain. Back up to 15 mg by late Autumn then put on a very slow tapering programme, reducing by 0.5mg prednisolone every 3/4 weeks. Currently on 11mg per day.

I am never without pain, but with alternating flare ups and remissions I continue with my life 'normally' exercising daily, (dancing, walking etc), keeping busy and resting of course - all at variable levels on good/bad days. I feel fortunate.

I do believe some pain is a side effect of the steroids, but it's a slow journey to find out!

Good luck to all, it's not easy is it.

Thankyou to this group for helpful contributions,

Waltztherapy.

[DorsetLady PMRGCAuk volunteer]

It’s not easy, but certainly could have been easier. In retrospect , you should have been on initial dose for longer - why most plans quote 3 weeks is beyond me . Most people need more at least 4 weeks, 6 would be better, then all the built up inflammation is well controlled before tapering starts -and you’re much less likely to flare.

Hopefully with smaller decreases your future tapering will be more successful.

And if you are never without pain then I would say your PMR is still not properly controlled, and part of that maybe trying to continue ‘normal’ life… but that’s your choice of course.

What pain in particular do you think is Pred related rather than PMR related?

[waltztherapy in reply to DorsetLady]

Thankyou so much for your very helpful reply Dorset lady.I believe there are a few unwanted side effects with prednisolone (like most meds),

There is PMR pain around some joints with bloods showing normal. Whilst some of it is mechanical, my rheumatologist confirmed that prednidolone does have this side effect.

Waltztherapy

[SnazzyD in reply to waltztherapy]

What side effect exactly? It doesn’t just cause pain and if it does that should get better with reducing. Do they mean muscle wasting or joint issues? If so, what do they suggest to help this?

What I found was that by the end my muscles were very prone to delayed onset muscle pain so kick back from a particular activity occurred a couple of days later. I also, found my muscles’ tolerance to strain and exercise was reduced and had to be carefully managed, much to my frustration. Any poor posture was punished too. I ended up with quite severe tendinitis too.

It is really great that your quality of life is good but I am concerned that this is against a backdrop of flares and remissions if that means you are popping up the dose to deal with them. This suggests the inflammation is not done. Alternating over doing it pain with healing without Pred, not so bad but I’d be careful so as not to do deeper damage.

[waltztherapy in reply to SnazzyD]

I take your points and am wary, thanks SnazzyD.Rheumatologist suggested ibuprofen, sparingly, for flare ups from now on instead of upping the prednisolone. He also emphasises the need to keep active. I do take regular rests between activities, not at all frenetic about them, days off when needed etc. Thanks for warnings.

Waltztherapy

[SnazzyD in reply to waltztherapy]

I’m surprised they think sparingly taken Ibuprofen will work for proper flare ups. Did they mean the occasional flooding dose or small doses for a longer period. Or do they mean, try Ibuprofen first.

[waltztherapy in reply to SnazzyD]

Think small occasional dose was inferred, but in the light of fresh advice and opinions. I've decided to ditch the ibuprofen in favour of paracetamol only. Problem with co-codamol is constipation.I also look at trigger foods which were identified when I had rosacia flareups, so avoiding those now of course, which I believe is helping.

[SnazzyD in reply to waltztherapy]

I’m a bit confused because a ‘true’ flare up due to inflammation of PMR then Ibuprofen is possibly not going to help much because it doesn’t have cover a wide enough spectrum of inflammatory processes. Cocodamol won’t help inflammation which is the thing that causes the trouble with PMR. A year is still early too. I agree with DL that you may not have had the initial inflammation dealt with and as you reduce it’s always a step ahead. Time will tell. It is difficult for sure.

[waltztherapy in reply to SnazzyD]

Indeed.Thanks.

[Sharitone in reply to SnazzyD]

Did you have tendinitis round many joints? Did it take long for it to clear?

It is very encouraging hearing about your trials now that they are largely over!

[SnazzyD in reply to Sharitone]

It was mildly in my forearms, fingers, pelvis and neck but the worst was the Achilles which was crippling. My muscles were generally weak and I was found to have severe weakness in my low abdomen, pelvis and back by a podiatrist and a specialist pelvic physio. Exercises, orthotics and time helped all of it. The Achilles took well over a year. 18m? The rest was within a year. That said I am not how I used to be pre Pred 6 years ago. For various reasons, not least 6 years of ageing and ill health that ship has sailed so I’m trying to work out where my new normal is. Covid hasn’t helped!

[PMRpro Ambassador in reply to waltztherapy]

My daughter has joint pain with high dose pred which she often needs for asthma - and it is nothing like PMR!

Some rheumatologists have some very funny concepts about pred side effects.

What did you mean when you said "Prednisolone experience, thanks for request."?

[waltztherapy in reply to PMRpro]

I was asked to talk about my prednisolone experience, by someone in this group.

[PMRpro Ambassador in reply to waltztherapy]

Must have been one of HU's clever ideas!!! Just wondered

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

my rheumatologist confirmed that prednisolone does have this side effect.

Really? .., and taking ibuprofen with Pred on a regular basis is a no,no...together they can cause stomach issues... warning in the Patient Information Leaflet not to take NSAIDs [of which ibuprofen is].

Are you sure joint pains aren't osteoartritis?

[waltztherapy in reply to DorsetLady]

Yes I do have osteoarthritis and understand that some pains are not all due to PMR. Also, I don't use ibuorofen very much, and after your warning, I'll avoid it altogether. Thankyou for flagging this up.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Would have been better if Rheumy has suggested Ibuprofen gel - but again use sparingly… I did when I was still on Pred [GCA] with doctors agreement, but I was also on a PPI at the time so stomach was protected.

[waltztherapy in reply to DorsetLady]

I take 20 mg of omeprazole daily, does that qualify please?I use ibuprofen gel occasionally - think I'll stick with paracetamol for now!

Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Omeprazole was what I was on at the time….can’t remember dose - but probably 20mg.… have you tried Flexiseq - no drugs in it - not cheap, but very often on offer, and at least you don’t have to worry about mixing with medication -

flexiseq.com/

[Bcol]

Hi, I also suffer with OA and only use Co-Codamol, which works for me but is not always a possible for some. I would wonder/question whether your PMR has been under total control and also whether you have adapted your life style to the new norms of a systemic long term ailment. Perhaps think about not tapering until/unless you feel that things are under control with your present dose.

[waltztherapy in reply to Bcol]

Thanks Bcol.Agreed. I usually wait for a noticeable improvement before next half mg reduction, and that lasts about two weeks.

Hoping to see an improvement as the dose reduces. My consultants and some fellow sufferers have found this to be the case. I was told after blood tests showed all normal, that I could safely continue with the tapering programme as set out by my rheumatologist. However, I do apply the caution you suggest. Thankyou.