PMR facial twitch ?

[CSMM]

Hi I was diagnosed after 3 month of being crippled I was misdiagnosed I’m 53 female and started at 15mg prednisolone went up to 20mg Then tapered to 17.5 then 15mg my pains are back night sweats too and such an annoying eyebrow twitch . Anyone else get facial twitch ? I took 20mg this morning after hour twitch is gone .

[Hidden]

Hi csmm, well it's sounds like you are having a bit of a flare. Night sweats are one of my indicators. If I get overtired or stressed my left eye twitches. Perhaps that's what happening to you..

[CSMM in reply to Hidden]

Yes I’m very tired at the moment thank you for your reply x

[Blearyeyed]

Sounds like a flare from tapering too quickly.

As Poops says , night sweats can be a Pred related side effect or to do with too rapid withdrawal of medication , PMR related inflammation or chemical imbalance.

Twitches can also be a side effect of neuro pain or neurologucal reactions caused by drug withdrawal or over tiredness .

You could try an increase for a few days to see if too rapid reduction of steroids is the cause if you are also experiencing additional pain.

Or , if the pain increase is not significant or does not feel the same as the previous PMR pain, continue current dose but do not taper for a period until your body has had chance to rebalance and restore itself properly before the next taper to reduce withdrawal symptoms.

If you choose to remain on the current dose just monitor your symptoms and if your pain and fatigue begin to increase then increase your dose but discuss it with your doctor too.

It is good to keep them in the loop and discuss doseage changes , especially in the early days as you want a good partnership with them working against the disease.

It does sound though that you have been tapered too quickly before the body had , had chance to cope with the original inflammation and then tapered too quickly early in your treatment.

[CSMM in reply to Blearyeyed]

Thank you very much for your reply x

[piglette]

I quite often get a twitch around my eye. I had them before pred too. I can actually see the skin twitching!

[CSMM in reply to piglette]

So annoying thank you for your reply x

[PMRpro Ambassador]

I had a bit of an eyebrow twitch during the 5 years of PMR with no pred - seemed to disappear after starting pred so I assumed something to do with the PMR.

You don't give any timings but I'd say you have reduced too far too soon and the pred as no longer enough to manage the inflammation. Night sweats are always a sign of a flare for me. You should stick at 20mg until your symptoms are improved notably - and then spend 3 to 4 weeks at each new dose before trying another reduction. We also advise going slowly - not straight from every day one dose to every day a lower one. This isn't a race and at the beginning you are likely to need more pred than later so don't rush to drop the dose.

What do you mean when you say you were misdiagnosed?

[CSMM in reply to PMRpro]

The doctor refused to take bloods and I was treated for mechanical back pain 3 months I was crippled and continued to work I couldn’t even brush my hair pull up my trousers etc . My doctor had to be forced to take blood what’s point she said you don’t have cancer or rheumatoid arthritis so no point . My inflammation markers were at top of scale she admitted I was text book case imagine how I felt 😢

[PMRpro Ambassador in reply to CSMM]

I trust you complained? Bloods give indicators for other things beside RA and cancer. And actually - how did she know it wasn't RA or cancer? Or does she have x-ray vision? She could make a fortune - except it seems faulty ...

[Blearyeyed in reply to PMRpro]

Faulty x-ray specs from the back page page of a comic book no doubt!😋😂😂😂

[PMRpro Ambassador in reply to Blearyeyed]

Could save the NHS a lot of money ...

[CSMM in reply to Blearyeyed]

Exactly what we said you should be working in A&E their would be no que I didn’t complain they know they made big mess and never once apologised but they would be admitting they were wrong then . It was a private physio I had that phoned them for second time to say look theirs something very wrong with my patient imagine 😏

[Maz48]

Yep I have experience of Prednisolone. Two years of hell. I was misdiagnosed with Polymyalgia. My pain in my left leg started soon after I hada successful hip replacement in my right hip. Nothing was done about it just physio, no x ray. Then in her infinite wisdom, my Dr said it was Polymyalgia & put me on Preds 15mg. Month after month i said they werent working & was told to increase them. I ended up gaving both my eyes done for cataracts, blood pressure & sugar levels up, & of course weight gain. After 2 yrs, with me ending up in a wheelchair, she said it cant be Polymyalgia as you arent getting any better. Come off them gradually. It took months & the withdrawal symptoms were horrendous. During this time we moved from Devon to Scotland where my husband is from, within 4 months, I’d seen a Specialist, had x rays, tests etc & 3 months after that I had a new hip. He told me my hip was just hanging there. I now have my life back thanks to Scottish NHS.

[PMRpro Ambassador in reply to Maz48]

Was that a GP? A GP didn't send my husband for the x-ray that would have found the tumour sooner - persistent cough for weeks, abx didn't work x3, his peak flow was low so it must be asthma. It would be low with a 10 inch tumour shoving lungs to one side! It wasn't as if it was difficult - don't know in England but where we were in Scotland they had open access.

But to be fair - your two years of hell can't be blamed on the pred but an incompetent doctor. If pred doesn't make a difference in the first month it probably isn't PMR and can be stopped easily. Pigheaded persistence makes it all harder.