Stuck at 6.5 Prednisolone

[Malaga47]

Hi Folks,

Reduced from 7mg to 6.5 using 5 week slow reduction. All was fine until last 2days when I felt both shoulders aching again. However I decided to keep going with the 6.5 for the next 5 weeks, that is until now. During the last 5 weeks it has been only the left shoulder that has bothered me. This is painful in the morning but improves as the day goes on. Would love advice as to if I should stick on the 6.5mg longer or increase, even by a little. Advice would be much appreciated.

Should say I’ve been attending Physiotherapist who still thinks the cause is the PMR and not a rotar cuff problem or other shoulder problem.

[PMRpro Ambassador]

That sounds very typical of a flare starting up because the dose of pred is no marginally too low. It is a place to use the flare protocol: add 5mg to the dose where you are flaring for a week or two and drop back to the dose where you were last good. If you get in quickly you may need the extra for less than a week which is always a bonus.

[Lancs56 in reply to PMRpro]

That’s very helpful advice. Thank you 🙏

[Malaga47 in reply to PMRpro]

Many thanks. I wondered about using the flare protocol but was unsure if that was the right thing to do as it hasn’t become worse over last 5 weeks but has persisted. Thank you again.

[DorsetLady PMRGCAuk volunteer in reply to Malaga47]

Sensible to try that -and then back to 7mg rather than 6.5mg..it may not have got worse, but that doesn’t mean it wouldn’t have given time..

[Malaga47 in reply to DorsetLady]

Thank you again. What you and PMRpro have said is what I’ve been thinking. Unfortunately I still have a GP ‘sitting on my shoulder’ suggesting I should be reducing. I really have to get over that and do what my body is telling me.

[PMRpro Ambassador in reply to Malaga47]

You will - jut not just yet ... And they need to learn that if you push the patient they will end up needing more pred in the longter tem - not less which is what they want.

[DorsetLady PMRGCAuk volunteer in reply to Malaga47]

Yes -and as we say over and over - do wish some doctors would realise that..

[Lickle in reply to PMRpro]

I seem to be stuck on the same level. After getting down to 7mg a few weeks back, I did the Flare protocol went up to 8mg and added 5mg for 10 days, then back to 8mg for few weeks and am now on 7mg again and doing the very slow reduction to 6mg. I do notice that it's mainly my hands that are stiff when I wake, occasionally a twinge in my neck and shoulders.

I seem to be lucky with my GP though, whose attitude is that he's happy that I am managing my PMR and the Pred reduction sensibly. He was more concerned about my blood sugar count at the last blood test and insisted I go back on Metformin until off the Pred. He understood my not liking having to take another drug, but assured me that once I am much lower or off the Pred, I can get off the Metformin. Assuming my blood sugar count is down enough. His concern is the Pred's effect on the blood sugar count.

Any of the more experienced on here have any views on this ?

[DorsetLady PMRGCAuk volunteer in reply to Lickle]

Blood sugars should reduce as you lower Pred… so do you really need to go back on Metformin ?b Not the nicest of drugs- my late hubby was on it, didn’t affect him too much, but have know others where it did!

As for reductions.. can you try only 0.5mg a time - many find once at your levels makes life much easier… Uncoated tablets can be cut quite easily.l.

[Lickle in reply to DorsetLady]

As my answer to PMR Pro I think I'll get a testing kit and do my own blood sugar tests for a while.

I'm doing your very slow reduction at the moment and am at 1 day new dose 5 days old. I planned to see how that goes at the next change and if I still get the increased stiffness will try your suggestion of 0.05mg

My biggest regret is that I haven't gone back to the gym yet am just so wary of overdoing it again and causing another flare.

[Odosmum in reply to DorsetLady]

I recommend 0.5 decreases. The local pharmacy sells pill cutters, so cutting the 1mg pills is easy. I also stay on reduced dose for 2 months (below 5mg) before further reduction. There is no prize for finishing quickly.

I have steroid induced diabetes and take metformin but do not test daily. I never have. My sugar levels are monitored by the HbA1c blood test. It is fascinating to see how both my weight and blood sugar levels fluctuate according to my prednisone intake, in spite of my diet remaining pretty constant.

[DorsetLady PMRGCAuk volunteer in reply to Odosmum]

Don’t think you meant this for me 😊 -but original author will see it anyway…

[Odosmum in reply to DorsetLady]

Oops! Sorry x

[DorsetLady PMRGCAuk volunteer in reply to Odosmum]

No problem -along with PMRpro I read every reply anyway… 😊

[PMRpro Ambassador in reply to Lickle]

Have you cut your carb intake? Several members have got their Hba1c counts down to pre-diabetic and even normal levels despite being on pred by doing so, mine has never risen. It does very much depend what your Hba1c is - do you know the number? If it is any consolation, metformin is now being found to have some other very beneficial side effects.

[Lickle in reply to PMRpro]

I am sticking to a low carb regime anyway. My GP says that the blood sugar is ok but approaching pre-diabetes, and is concerned that the Pred does actively raise blood sugar. I don't know what the readings are. I think maybe I'll get my own testing kit and do some regular tests.

[Hunter134 in reply to Lickle]

I had to take metformin but I only take one tablet.It makes me a bit nauseous but if I eat it goes away.Not sure if it's doing much though.I may need two a day.

[Hunter134]

I've got the same issue.I dropped from 7.5 to 7 mg.But after 4 weeks I can feel the inflammation building up.I went up to 8 mg but not thinking that's enough.Been 5 years and it's very discouraging.Iam sure I am not the only one ❤️

[bonio]

No Hunter134 youre not the only one. I got stuck on 6.5mg my lovely puppy got ill, I got ill, my puppy died and I flared. Been on pred 3 1/2 years and now back on 8mg. Hadn't had a flare for a year! It's a bit like a merry go round! Just have to adapt and be patient. Look after yourself.

[rocketman42]

Count me in with being stuck at 6.75. I’ve learned to decrease by .25 each reduction in order to make any progress.

I’m fairly comfortable at 6.75 but each time I try for 6.5 my symptoms return so I’ll just stick with it for a while and try again in the near future.

Eight years on this journey for me. Not fun but I figure things could be worse so trying to stay positive

Good luck to all !

[Nextoneplease]

Hi Malaga 😊

Gosh this thread is a relief! I am stuck on 7mg after3.5 years, and flare every time I try to reduce. Lots of stress and pressure doesn’t help, Not looking forward to seeing rheumatologist in September- last year he insisted I should be completely off pred by now!

Thank you all, it’s such a comfort to know how many of us struggle with this xx

[PMRpro Ambassador in reply to Nextoneplease]

I'm on 7mg after 20 years of PMR, 15 years of pred and two and a half years of Actemra!!!!!

PMR lasts a great deal longer than most rheumies think and the 2 year figure is a myth - as defined by Prof Sarah Mackie who is probably THE leader in the UK.

[Nextoneplease in reply to PMRpro]

Thank you PMRpro 😊

You’re an example to many (although I’m sure you wish you weren’t!) It’s just so demoralising feeling that the doc isn’t on my side (although maybe I do him a disservice- we’ll see in September) x

[PMRpro Ambassador in reply to Nextoneplease]

At least I don't have that problem! I probably will if I return to the UK though!

[Odosmum in reply to PMRpro]

I am very thankful that after 7+ years of PMR and pred, I am down to 0.5 mg. I have tried several times over the last 2 years or so, to go lower (every other day) and even stopped for a few months, but it flares up again. My Rheumatologist is happy to let it continue and even up my dose in response to illness induced flares (vaccine ones too!), so I have called it a day with tapering. For now anyway. If next year I'm still stable, I might try and taper, but I'm pretty resigned to where I am.

[PMRpro Ambassador in reply to Odosmum]

Good rheumy though - a relatively rare breed.

[Odosmum in reply to PMRpro]

He's a youngish chap. I think this is his first post as consultant. I have a great deal of time and respect for him.

[PMRpro Ambassador in reply to Odosmum]

I would too.

[ladygigger]

Sounds like a lot of us are stuck around this level: I originally started on 15mg, doubled to 30mg when that didn't do the trick and gradually tapered to 10mg. I got down to 6mg a few months ago but then had a flare so up to 11mg for a week, then back down to 7mg. Have only managed to drop .5mg since then and I know I'm going to get earache at the end of the month when I have my second ever rheumatologist appointment. First one was in January 2023 and I've had one telephone appointment since then, although I have called a couple of times for advice.

[PMRpro Ambassador in reply to ladygigger]

7mg is well known to be a difficult stage - but your rheumy needs to learn that PMR needs what it needs!! You aren't immediately heading for zero - this is a chronic illness and the pred has cured nothing. It is a management strategy with a fairly open end timewise!

[ladygigger in reply to PMRpro]

Thank you (and DorsetLady ) for the reassurance. The flare was actually piriformis syndrome which is (thankfully) at last under control now but as you mentioned before, I think I'll be doing those exercises til the day I die if I don't want it to come back!

[DorsetLady PMRGCAuk volunteer in reply to ladygigger]

‘Earache’ in that context is better than generally feeling rubbish and flaring because ‘someone’ wants you hurtling down too fast!😊

[Italybound62]

That happened to me when I reduced to the 3mg - 2mg range. Same shoulder pain which got worse and moved into arms and then fingers. I kept thinking (hoping) it was something else, so after 1 month, I listened to the experts here and followed the flare protocol. Went up to 10mg for a few days, down to 8mg, then to 6 mg. and then on day 14 down to 4mg and I'm sticking here for a while.

[Whatawonderfullife]

Ah yes, nearly 5 years in with GCA and I’m down to 6.5mg pred again. I am developing pain in my shoulders and neck and in my fingers and now pain in temple.

I’m confused with how I should proceed with the pred. Last appointment with the ophthalmologist, she told me to ignore all symptoms unless it affects my eyes. I was surprised by this, a, because of the pain and b, what if it affects my sight before I have a chance to act?

Would like your opinion on this too.

[DorsetLady PMRGCAuk volunteer in reply to Whatawonderfullife]

That’s rather a blasé approach - and not helpful. If you have symptoms- or pain of any sort - they can’t just be ignored.

Maybe try the flare protocol described in this link - and ifs that doesn’t work then the need to see your regular doctor -

healthunlocked.com/pmrgcauk...

Just for further information, it much better to raise a new post when you have a query like this rather than in another thread… it’s likely to get missed. It’s only likely to be seen by the author, PMRpro and myself or anyone who has saved it - whereas as a new post will be seen by all members.

[Whatawonderfullife in reply to DorsetLady]

Ok, noted, thank you. And thank you for your reply.

[Slappe]

I have PMR and instead of Prednisone (started on 5mg for a week to help with inflammation and to stop my body from attacking itself) I started on 800mg of Advil (400 in AM and 400 in evening), which has helped the stiffness/pain so that I can walk and do my gardening. And to counteract the side effects of Advil I take Culturell (probiotics) for possible indigestion plus chew 4 papaya pills and always have Tums on hand. Hope this helps... Best of luck!

[PMRpro Ambassador in reply to Slappe]

We often say that if ibuprofen/Advil makes a significant difference that it may be worth investigating the diagnosis further - NSAIDs are no longer recommended for management of PMR, partly because of the considerable cardiovascular and renal effects longterm but mainly because if it works it is less likely to be PMR and possibly a polymyalgic presentation of an inflammatory arthritis.