Flare again. Think I have not gone up enough. Stupid really. Should I up again now?

[Ebiker]

From previous posts you will see that I either flared or, as discussed on forum, that the bivalent jab reactivated my pmr in Dec. I had to up from 6.5mg to 12/12.5 eventually. Got stiffness and aches, which were not too bad, under control and stayed on 12.5mg for 7 to 8 weeks. Was fine so started slow drop to 11mg and started awful flare less than 2 weeks in. This time aching back, thighs and a lot of stiffness. Unfortunately I had suffered a twist/jerk of lower torso a couple if weeks earlier when a gust of wind whipped a door I was opening!Increased to 15mg and some improvement, ie not almost collapsing when I get up in the night. Back pain seemed to decrease after a couple of days but worsened again. I felt back to where I was when diagnosed nearly 4 years ago!I should have increased +5mg I know. I have had 4 days on 15mg.

I take my pred in the evening and think I should take 17mg tonight. Am I right? This is more than my initial starting dose.

I am so concerned about not being able to drop back.

Really need some reassurance.

Thanks all you lovely contibutors.

[DorsetLady PMRGCAuk volunteer]

You probably do need more Pred, but I would be a bit concerned there is more going on than just a straightforward flare (if there is such a thing) as it’s been rumbling on for more that a couple of months.

Obviously the twist in torso hasn’t helped - but think a visit to GP (sorry) is in order.

As you rightly say the more you increase Pred the more you have to come down again eventually …and if it’s not all PMR then you don’t want to be increasing it unnecessarily.

[Ebiker in reply to DorsetLady]

Thanks DL. I have felt so poorly the last few days with other problems reoccurring. I am wiped out, weak, and shaky as well as suffering awful GERD due to increased pred...that leads to increased omeprazole. Doc is aware of all this but not this last flare.This fatigue starting again a couple of weeks ago so had tel app with him as I have seen him a number of times recently and I asked for another B12 injection...but not till next week. I have had a number of tests and checks over the last few months and all checked out fine except duodenitis and start of osteoporosis.

I will ask for a tel conversation tomorrow re this flare and hope I get one. Our health centre is very good.

Meanwhile I guess I have no choice but to increase next dose.

Another route is to have a private appt but not sure what sort of specialist to ask for.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Does sound as if some could be down to B12, any chance of getting doctor to bring that forward? .

But I guess you could take extra Pred for a few days, if it’s doesn’t do anything, you can always revert to previous/current dose.

Hopefully you can get a tel app tomorrow…

[Ebiker in reply to DorsetLady]

Tried to get it brought forward but no joy. If I get to speak to doc tomorrow I will explain current situation and ask again.Forgot to say that it all improves, including back, later in day about 5pm.

PMRpro said something similar to yourself last time I wrote. She was puzzled that it improved as day went on.

[Ebiker in reply to DorsetLady]

Well done DL. You are quite right. The stiffness had lessened the last couple of days but the back was the problem it seems! It improved yesterday and again today so I moved carefully when getting out of bed etc and established that it is all coming from previous back problem disc. I have a good physio locally so will not contact doc yet.So relieved that I can now drop back. Took 17mg last night so should I go to 14/15mg for a couple of days before dropping to 13mg?

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Probably would be wise...and hope you can get back sorted soon...

[Ebiker in reply to DorsetLady]

Did as suggested and the pmr seems to be managed again apart from a little groin/ thigh stiffness which goes. Back much improved by not using it. Am on 13.5mg now and will go to 13mg before trying 12.5mg will stay there for a while. Took 13.5mg yesterday evening as I have been taking pred then.My pred does not last all day so thought I should either move to morning dose or split. Can you advise on how to move please. If I split the dose 2/3rd to 1/3rd at what point should I change?

Thanks as always.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Well you need to think about whether you want to move to morning or split the dose.

Some people might suggest moving the time gradually over a number of nights [but I think that's likely to make you feel worse] so probably just as well to do it as suggested below -

If you are going to mornings only, then the day you are going to swap, take dose in the morning [even though it means less that 24 hrs, it will give you a better day that day] - and just stick to that. from thereon

If you are going to mornings and night - then take the 2/3rd in morning [again you will have a better day, but not as good as full dose] - and then 1/3rd in evening....

But do give new regime time to settle before you try and reduce...

[Ebiker in reply to DorsetLady]

Many thanks for reply. Clear to follow too.

[PMRpro Ambassador]

I'm not sure that can all be blamed on a flare - especially if you know you were injured. Some imaging of some sort would seem appropriate.

[Ebiker in reply to PMRpro]

Thanks PMRpro. I will ask if the back problem can be checked out with xray or scan. Meanwhile tonight I will up to 17mg. 😱.The way I feel now it is hard to imagine that we were chatting a few weeks ago about my hopes of getting to Lans this autumn. I can't even find the energy to get to the medical centre!

[Ebiker in reply to PMRpro]

PMRpro. Hope you read my reply to DL as it is for you too.It is difficult to separate these things when one cannot take nsaids (on warfarin). I did risk one ibuprofen.

Btw you mentioned famotidine as a possible replacement for long term omeprazole and doc was happy to prescribe...but it gave me awful side effects and it was less effective.

[PMRpro Ambassador in reply to Ebiker]

Fair enough - everyone is different.

[Ebiker in reply to PMRpro]

I was disappointed must say. It seems that my system simply responds badly to any meds.

[Ebiker in reply to PMRpro]

Morning Pp...copied from reply to DL.

Did as suggested and the pmr seems to be managed again apart from a little groin/ thigh stiffness which goes. Back much improved by not using it. Am on 13.5mg now and will go to 13mg before trying 12.5mg will stay there for a while. Took 13.5mg yesterday evening as I have been taking pred then.

My pred does not last all day so thought I should either move to morning dose or split. Can you advise on how to move please. If I split the dose 2/3rd to 1/3rd at what point should I change?

Magic...we have sun today.😁

Thanks as always.

[PMRpro Ambassador in reply to Ebiker]

For the record - DL's already said what I'd say ...

[Ebiker in reply to PMRpro]

Thanks Pro

[Maggie1313]

good evening i think I have the same as you. I reduced down to 3.5mg from 4mg on the slow reduction,and six weeks in I got pain in my back on right hand side under my ribs and travels round to front. Like you it is painful for a day or two and settles a bit for a day and then flares again. I know I did not hurt myself but my doctor says it a pulled muscle and it could take 6wks or more to heal, it’s now 4wk still sore when I bend and so very sore when I touch the spot. Could this be a flare and if could be how much would I need to up my steroids .

[DorsetLady PMRGCAuk volunteer in reply to Maggie1313]

Doesn’t sound typical of a flare, the pains would normally increase - not come and go as you describe. Many people on here seem to suffer with Costochondritis - maybe have a look at this fairly recent post and see if the links in it from PMRpro ring any bells - if so then talk to your doctor again

healthunlocked.com/pmrgcauk...

if it’s not that - this link contains the usual advice for dealing with a flare-

healthunlocked.com/pmrgcauk...

[Ebiker in reply to Maggie1313]

I agree with DL. It does not sound like a flare. Worth further investigation before thinking about increasing steroids.

[PMRpro Ambassador in reply to Maggie1313]

My immediate thought is also costochondritis. Not the same as a pulled muscle but it will improve with time.