Prednisolene: Good Morning . I was diagnosed with... - PMRGCAuk

PMRGCAuk

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Prednisolene

Portopetro profile image
10 Replies

Good Morning .

I was diagnosed with Rheumatoid Arthritis nearly three years ago . My private consultant started me on 15 mg of steroids for a month followed by a slow taper along with 15 mg methotrexate . I had a really good 18 months playing tennis and generally feeling really well with CRP around 5 . I came off the steroids in September 2022 but symptoms started to slowly return by this New Year following covid . I went into the NHS in February and seven months down the line have had the worst seven months ever . My consultant says I have palindromic arthritis which i well could have but I am still on 15 mg of methotrexate and nothing else . During that seven months she has arranged a Depomedrone injection which was wonderful for 8 weeks twice and my crp came down to 12 . I feel the depomedrone is just a sticking plaster . My CRP is constantly around 35 . I am getting so fed up as have had the most terrible pain at night along with feeling really cold . I feel that I should be put back on steroids properly again and am seeing this consultant next week . Any thoughts would be so appreciated .

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Portopetro profile image
Portopetro
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10 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi,

Although we do use and discuss a lot about prednisolone on this forum it’s not an arthritis forum it’s for PMR and GCA - so you might get more answers from one these regarding palindromic arthritis

healthunlocked.com/oa-action

healthunlocked.com/arthriti...

Or even this, as you have RA as well -

healthunlocked.com/nras/about

..and yes your CRP is high, so needs more investigation…good luck

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Except we have one member who comes here because PR is so rare no-one else knows much and we have relevant advice!

Portopetro profile image
Portopetro in reply toDorsetLady

Thank you . Didn’t realise that .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPortopetro

No probs... as PMRpro there is a lot of knowledge on here abouts steroids....😊

PMRpro profile image
PMRproAmbassador

I might dispute the palindromic rheumatism (PR) - what are your symptoms that are relieved by pred? Is it joints specifically or all over? Does it come and go? PR by its very nature appears for hours or days in a joint and then moves on to return later somewhere else. Tell us more details. ("In rheumatology, palindromic rheumatism is a form of joint inflammation in which the joints involved by the arthritis appear to change periodically from one region of the body to another and back again."

It is perfectly possible to have RA and PMR and PMR and PR have been confused before.

Depomedrone can be used continuously - an injection on an approximately monthly basis has been used to manage PMR in much the same way as oral pred but one-off injections are no use for that, they must be repeated as the dose released each day falls to a level that allows the inflammation to build up again. Unfortunately, many doctors don't seem to grasp how it works.

healthunlocked.com/user/Adm...

is a former member who managed PMR with injections and did a lot of research into how it worked for him.

This is a link to the original work by Dasgupta in 1991 on the use of injections to manage PMR - he went on to become a name in GCA in the UK.

ncbi.nlm.nih.gov/pmc/articl...

It hasn't really been repeated so doesn't figure much in the literature but it is included in the 2015 Recommendations for management of PMR.

15mg of MTX is a very LOW dose for rheumatology, 20mg is much more common, even 25mg.

Portopetro profile image
Portopetro in reply toPMRpro

Thanks for that very helpful information . I have symptoms all over the place . It continually moves could be be shoulders , hands , thighs knees wrists . I feel that it usually occurs when I have done repetive moves . It will last a couple of days and disappear . One thing I don’t get is much swelling and the pain can be in the muscle not necessarily in the joints.

PMRpro profile image
PMRproAmbassador in reply toPortopetro

How long do you have between episodes?

I don't know if anything like that has ever been attributed to PMR - and it really doesn't fit with the stuff I have read about PR if you say muscles are involved.

versusarthritis.org/about-a...

You need what a friend with lupus calls "A True Detective rheumy"! One who is curious and looks at the individual patient and I'm not sure you current one scores too well there,

Portopetro profile image
Portopetro in reply toPMRpro

You can never really know what the trigger is but I was diagnosed with PMR initially which the consultant said had gone into rheumatoid arthritis . My NHS consultant thought it was palindromic arthritis which on reading about it sounds more likely . Anyway thank you for your response . The article about three weekly injections was really interesting and helpful.

Knitwits profile image
Knitwits

Hi portopetro

I am so sorry you are having so much pain.

I was slowly tapering with my steroids but every time I got to 5 mg my crps would come back big time.

I was then put on 15mg injecto pen of methotrexate once a week and to still slowly taper my steroids.

A year later I am still on the same dose of methotrexate and down to 3mg of steroids and very little pain it is a very slow process but I think it has been worth it.

My consultant uses a very good tapering which I find is much better I will try to explain it but I may not.

You have one month of 5mg every day then the next month you change to:

5mg one day and 4mg the next and alternate like this throughout the month.

The next month you change to 4mg every day.

The next month is 4mg one day 3mg next day and alternate throughout the month.

While I have been on methotrexate I have been on the same dose of steroids for 2 months instead of one.

I have found this slow tapering much better for me.

I hope this is helpful

Portopetro profile image
Portopetro in reply toKnitwits

Thank you so much . Yes that’s really helpful.

Will be seeing consultant next week so fingers crossed.

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