symptoms of pmr returning have managed on 2mg for 2 months have asked for gp phone consultation tomorrow just wanted to talk to you folks fi

[Mofred]

Hi I have had pmr for nearly 2 years . Because inflammation was high initially gp put me on 30 mg . I was able to reduce to lower quite quickly and felt well though experienced side effects of poor sleep being hot , being very active probably a bit elated, constipated and my face made me look in my sisters words like a hamster (she is lovely really) . over the months with a need to increase dose a little sometimes, i have managed to reduce to 2 mg but when i have tried to go lower allowing for adrenal issues i have felt tired and gone back to 2 . Over the past couple of weeks i have felt very tired and a bit low in mood ( i am on citalopram anyway so wondered if bit of depression) I have rested a bit more but still going out and about . Over the past few days have experienced difficulty turning over in bed half way through the night and pain in my bottom particularly on my right side and pain in the legs . I have difficulty bending down and going upstairs but as the day goes on the symptoms do ease . I know I ve just got to be kind to myself and not overdo it but try and do some exercise . The last gp i spoke with many months ago was very understanding and agreed that i was managing my dose of steroids well and i just ask for repeats but feel I need some guidance now that the symptoms are returning . I do worry about the long term effects of steroid use but recognise there is no other way to manage pmr so that we can live our lives .

[MamaBeagle]

Im sure the gurus will be along to advise you. And IMHO you'll get more help from them than from most GPs. I basically self managed PMR from the help on this site

[DorsetLady PMRGCAuk volunteer]

Would say two thing -

too fast a taper and below the level of Pred your PMR requires - hence hips/legs/turning over in bed issues... so you need more Pred. rather than try reducing, see this for dealing with a flare -

healthunlocked.com/pmrgcauk...

and adrenals need nurturing and nudging into working again - they don't just switch on like a like bulb... slow tapering, small steps and patience required...

see this - healthunlocked.com/pmrgcauk...

[piglette]

What you could try is to increase your pred dose by say 5mg for a week and see if it helps. You can then drop back down again without tapering.

[PMRpro Ambassador]

You are never reducing relentlessly to zero pred - you are looking for the lowest effective dose, the lowest dose that gives the same level of symptom relief as the starting dose did. It sounds to me as if you have overshot that dose and 2mg is slightly too low fr what you need to manage the daily amount of new inflammation the underlying autoimmune cause of the symptoms we call PMR is creating.

Once you get below that dose the inflammation that isn't being mopped up will build up until there is enough to cause symptoms again. You are at a low dose so there really isn't much to worry about being on it long term - and Prof Dasgupta, long time patron of the charity, told us he often keeps patients at 2 to 3mg to reduce the risk of a relapse. I think you probably need 2.5 or 3mg still and if you remain at 2mg the stiffness will get worse. It is like dripping tap - eventually the bucket fills up and overflows!

[borednow]

I'm now 1.5mg a day. That's the lowest since 2017 when I started with PMR at 20mg. I have no intention of trying to go lower, I can function well on this low dose. Occasionally I've found it necessary to increase a bit so have upped to 5mg and then reduced again. As others have said, it's not a race. Please be kind to yourself!! I wish you well.

[Meggsy]

I came down by .5mg from 10mg staying longer at some stages along the way when necessary. However could not get to 2mg from 2.5 so started cutting tablets into 4 (0.25mg) and managed to to get to 1.25mg with very slow tapers. Can’t seem to get to 1 mg so quite happy to stay where I am for however long it takes. Over four and a half years now, starting at 25mg, and not the least bit worried about pred effects at this low dose. I was just thrilled to get below 5mg. No rushing and all the best. 🌻

[Wallysma]

Hi Mofred...I am so glad you asked this question. I think those of us with docs losing their minds over dosing have success being getting off the pred. But to further support theidea that a low dose might be forever and it will all be ok (as long as it keeps PMR in control) I was put on 3 mg. of pred in 2015 for Sjogrens RA. The pred worked well with placquenil to get and keep the RA under control. My GP would groan about the pred every now and then but I never had issues. I moved a year ago.so now I have new docs. I wish I had my previous ones but thank God for these folks here.

I too resemble a hamster...with mouth full of feed. Just adds to the wonderful mysteries of this disease.

good luck ...be well.

[Mofred in reply to Wallysma]

thankyou that really cheered me up have gone up to 4 mg. if no pain in bed tonight will stick at that . gp reluctantly agreed and ordered full blood test including test of inflammation . he did recognise that increase in steroids will reduce the reading . The farce is because of backlog of need for blood tests you have to phone phlebotomy now and the earliest i can get is 4 th november by which time i hopefully will feel better . but i know that the readings doesnt always reflect how you feel .I am reconciled to hamster face if it returns . My favourite character in tales of the river bank was always Hammy . (showing my age again )

[Wallysma in reply to Mofred]

I think it is interesting that we have a disease where decisions are made by symptoms almost daily yet a lot of is...regardless of country are having trouble getting to see the docs who control the scripts..mor need to see blood work. I was surprised when I learned that the labs could be ok because of the pred but symptoms could be off the charts. We are all pushing through and doing the best we can. I would be happy to end my pred journey back at 3 or 4. I am just worried about.the push to reduce too much too soon.

 q. Was your hammy face bigger on one side than the other? Mine sticks out on the right side for some reason. And if I continue to lose hair I will be even more attractive.....lordy...I am too old for this bs. My tits are not.up to it really!

take good care. Fingers crossed 4 works.

.

[Whitner]

Interesting you mentioned pain in your bottom. I have a pain in my lower back that seems almost in my tail bone. That went away but now I have a pain that runs down my left butt cheek and the back of my left thigh. I am finding that rest is helping along with my chiropractor. I'm on 1.5 mg of pred and trying to get to zero!