Steroid withdrawal?

[Lovetobe]

Hi, following on from my previous post back in Jan/feb I'm still struggling and feeling unwell.

Last July I was on 5mg when headaches started.

Had synacthen test in Feb 2023 , then again last week when I had reduced slowly to 3mg.

Apparently now my adrenals are functioning well. He suggested still slowly tapering.

He said my symptoms fatigue headache not sleeping moody is all steroid withdrawal.

I'm not so sure my pmg is not happy. I just feel so unwell and my shoulders ache, and now I'm getting tingling through my shoulders into my neck.

I was loathe to increase my pred after lowering to 3mg and adrenals working.

But I think I'm going to have to increase, pse could anyone advise maybe what I could go up to and for how long which may not impair my adrenal function

I feel so low and fed up and nauseous.

Ive asked when my next rheumi appointment is and they can't tell me other than im on the waiting list !

Tks so much

[PMRpro Ambassador]

The usual advice for dealing with a flare is to add 5mg to the dose where the flare occured for a week or so and drop back to the last dose you were good at. That doesn't affect adrenal function, it isn't long enough.

Right enough - all those symptoms could well be the PMR and endocrinologists tend not to thinkof that, Have you got the results for the synacthen test last week? However, the synacthen test may tell you the adrenals are able to produce cortisol when given a chemical kick, but that doesn't mean they are doing so reliably day to day. And at a lower dose of pred, the PMR could well be starting to make its presence felt adding to the feelings.

[Lovetobe in reply to PMRpro]

Thankyou for your prompt reply i will have to answer later today as just having a natter with friends, tks so much

[Lovetobe in reply to PMRpro]

Hi PMRpro thanks for your reply this morning. I had phone call from the endo he just said he was pleased my adrenals were functioning well, I wasn't given any figures.

Up till now I've resisted upping the pred, I think the past year of getting from 5 to 3 was slow, but I guess thinking back when I hit 5.5 it all went wrong so I should of upped then instead of being stubborn maybe.

I'm just confused and unsure who if any doctor/consultant to go to.

This burning tingling tightness across shoulders and into neck is new in past 2 weeks, buy if I'm honest my shoulders and hips have been niggling for a long time.

I will stop waffling now, and I think try going up to 10mg tomorrow for a week and see what happens 🤷‍♀️

Tks again for always replying

[AnniesRyder5 in reply to PMRpro]

Dear PMR pro

Picking up on your advice to Lovetobe

I’m struggling at 4mg and the latest annoyance being Piriformis syndrome for which I’m doing the recommended stretches and taking ibubrofen - would you think an extra 5mg for a week or so could help with this overwhelming tiredness and lethargy?

🫤

[PMRpro Ambassador in reply to AnniesRyder5]

Well it might in the short term - but if you are to get lower on pred and eventually off it altogether, then this is a stage you have to endure. SnazzyD writes eloquently about getting through this and out the other side. There are no short cuts, no magic potions, only a consistently low dose of pred and patience will get you there.

[DorsetLady PMRGCAuk volunteer]

Virtually all your symptoms sound as if your adrenals are struggling…. and not down to steroid withdrawal…. Some could be a combination of both….

Never mind the ‘Apparently now my adrenals are functioning well.’

Not sure that’s true, they may be ‘capable’ of functioning which is all the test shows… not how much or how well. And it’s a well documented fact that after being on steroids long term it can take anything between 6 to 12 months for them to be working 100%

I appreciate you feel rotten, but only time, a very slow taper with small steps will nudge your adrenals into working. It be inclined to stay at 3mg for a good while [at least a month or maybe two] to give the adrenals a chance to catch up rather than increasing if you can… and ride the storm.

But if you can’t pmrpro has give advice on flares.

See this link from FAQs re adrenals -

healthunlocked.com/pmrgcauk...

Have to say I’m slightly concerned that nearly all your posts have mentioned headaches - have any meaningful investigations been carried out to find out what they are?

[Lovetobe in reply to DorsetLady]

Thankyou DorsetLady, the 6 to 12months you mention is that after stopping pred completely?

Months ago before Christmas, I.had ct scan and all was OK.

I haven't mentioned it to my gp recently only the rheumi back in Feb and the endo consultant.

My gp last year said it sounded like stress tension headache and wanted to put me on amitryptaline which I refused, so guess I'm not helping myself.

[DorsetLady PMRGCAuk volunteer in reply to Lovetobe]

Yes, after you have finished Pred… sorry I didn’t make that clear.

I’m not sure about Amitriptyline- it does help some, but it’s another powerful drug with its own issues, so maybe best to steer clear if you can.

[Lovetobe in reply to DorsetLady]

Yes amitryptaline sent my mum do dally many years ago.

I was prescribed it years ago when first diagnosed with fibromyalgia to help sleep, indeed a nasty drug.

Since the onset of the pmr I completely forgot I had fibro, which I had well controlled, just reading up on it again, re the tingling burning in my neck and shoulders maybe its a fibro flare, who knows! But that doesn't still count for my headaches.

I'm going to try hard to cut out sugar, which I did at the start of pmr, but its all slowly crept back as has the weight which is depressing for me too. A viscious circle isn't it for many of us

[DorsetLady PMRGCAuk volunteer in reply to Lovetobe]

Certainly can be a viscous circle -and unfortunately not enough doctors seem to appreciate how debilitating chronic illnesses can be…

Hope you soon feel in a better place 🌸

[Lovetobe in reply to DorsetLady]

Thankyou x

[ncfaaeos in reply to Lovetobe]

After weeks of headaches and trips to the emergency (I had had PMR but had been off Prednisolone for a year and I was afraid of having GCA) I was diagnosed with tension headaches. Two months later, after persisting about my headaches (I am not normally a headachy person), I was eventually diagnosed with GCA.

[PMRpro Ambassador in reply to ncfaaeos]

There is even a paper about such a case

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

Personally - a trial of pred is preferable to losing your sight so I wonder why they didn't ...

[ncfaaeos in reply to PMRpro]

Didn't seem to matter how many times I said I was worried about the possibility of having GCA since I had had PMR - to no avail. Seemingly I did not have the usual symptoms. This was the case also when I was eventually diagnosed with PMR earlier. It took a stay in hospital to find out.

[ncfaaeos in reply to ncfaaeos]

PS - thank you for the article - very interesting/useful.

[PMRpro Ambassador in reply to ncfaaeos]

I wish they would learn that neither PMR nor GCA have read their textbooks. The number of people told they are "atypical" would make "atypical" typical ... If you see what I mean!

[Lovetobe in reply to DorsetLady]

I have read and re read you adrenal link, I have been taking the b vits and vit c recommend for the past 4 months, but do need to cut coffee again and cut down on my wine and cards, maybe the latter will help.

[piglette]

I am not sure that your doctor knows that much about the activity of drugs along with a lot of doctors! It does sound as if you need to up the dose for a short period to hit the PMR on the head. As the others say your adrenals may be complaining about being woken up too.

[Lovetobe in reply to piglette]

Tks piglette, I think I will try upping my pred for a week if nothing changes then will guess its adrenals I suppose 🤷‍♀️

[piglette in reply to Lovetobe]

By upping the steroids that should help the adrenals as well.

[Lovetobe in reply to piglette]

Ok tks x

[piglette in reply to Lovetobe]

Good luck.

[pammy_hyland]

I've never been able to lower below 4 mg without having a flare I have been on a maintenance dose of 4mg for many years now and don't intend on changing it as I feel brilliant on it abd can carry on having a good life ...but I did have to draw the line and say this to my GP to get to agree to this ...I hope you get sorted xx

[Raewynne in reply to pammy_hyland]

I have just reduced to 3.5 and I meeting a lot of headaches and very bad blurred vision.I struggled reducing to 4mg.Im hoping it will settle down or I may have to increase again.Its funny how .5mg can make such a difference.

[DorsetLady PMRGCAuk volunteer in reply to Raewynne]

Its funny how .5mg can make such a difference.

It’s not actually -just wish doctor would appreciate that fact….

[pammy_hyland in reply to Raewynne]

You will find and know the right level that you feel good on and won't flare and feel comfortable at I wanted to get to below 5mg so I could stop with the Alendronic acid as it affected me so badly but I didn't want to go any lower and flare again as this would mean I had to go right back up on the Prednisolone and none of us want to go back there ..Good luck and do speak up for yourself you know your body better than anybody xx

[Karenjaninaz in reply to Raewynne]

We are told not to reduce more than 10% at a time; 4 to 3.5 is 12,5 %. Maybe 1/4 mgm might feel more tolerable at such low doses. I cannot even tolerate .5 mgm at 7.5 but I have other medical issues.

[Raewynne in reply to Karenjaninaz]

Goodness.I have other medical issues too.1/4mg could be hard to make.

[DorsetLady PMRGCAuk volunteer in reply to Raewynne]

Not everybody needs to reduce by such tiny amounts …. Most are okay with 0.5mg, but there are a few like Karenjaninaz who are very sensitive to change in dose…

[Karenjaninaz in reply to DorsetLady]

It was easier the first time actually.

[Lovetobe in reply to Raewynne]

Hi Raewynne have you found anything that helps the headaches, paracetamol doesn't touch mine , I seem to have had headaches for a year now since lowering to 5, like I said now on 3mg and no better.

[par600 in reply to pammy_hyland]

Hi, tapering from 6.5 to 6 and feelin generally bad. Yearly check-up with primary care yesterday he believes that anything under 10 mg is acceptable and quality of life should be considered. Suggested I stop tapering and increase dosage to last # I felt good at. FYI: he diagnosed the PMR

[Avadip12]

I am living in the vicious circle of decreasing then increasing. It has been going on for years . I just cannot get through the crippling fatigue and blurred brain. The last 5 yrs I have been up and down from 6 mgs and down 3 mg , when I become almost unable to cope with stiffness and closing down of my brain . The dr repeats the bloods and I have never had a return of raised levels of my original diagnosis over 10 yrs ago. I feel now that I just need to remain on steroids for the sake of a better quality of life . I am now 67 and dont want to keep floundering around in what feels like permanent illness.

[PMRpro Ambassador in reply to Avadip12]

At what point does the fatigue and brain fog go from livable with to not?

[Avadip12 in reply to PMRpro]

I feel it all starts getting bad after I have been reducing from 6 mgs almost straight away . To be honest 6 mgs doesn’t feel like enough , I still feel unwell at that. But I have vowed to never go above 6 again . So at 5 1/2 mg I am feeling it , I stick with it for 8 wks before the next reduction ,all the time not feeling good. So really I spend 6 mths trying to cope till I break , usually around 4 mgs , but 3 mgs being the lowest. All the Dr suggests is I just keep trying, but I feel like I am waisting my life away because I feel unwell everyday TFT normal , synatchen test normal . All pains are associated with my shoulders, neck arms, and lower back and pelvis. I swim everyday for 15 mins and 1/2 mile dog walk. Then I need to sit as I am drowsy , fatigued and have tinnitus. Is there anything else I can do ! Feel lost

Many thanks Gill

[PMRpro Ambassador in reply to Avadip12]

No - not on. You need to be at a dose where life is worth living and every time you try to force it lower, you are adding to the problems because the reduction becomes harder and harder when you yo-yo. Tell the doctor it is affecting your mental health trying to cope on an inadequate dose and to stop pushing you.

It sounds too as if you have a back muscle problem that is over and above the PMR per se. I have too but here I get a lot of therapy from my rheumy and the pain clinic. When the low back problem is not dealt with properly, it spreads to the rest of the back and just gets worse.

[Feeder]

Hello there,

Having tapered Prednisolone recently( for a couple of chest conditions),I suffered the same symptoms. I would not increase them without medical advice. You could discuss it with your GP. Personally I would continue tapering as advised. My thoughts when tapering were to be happy to reduce and have now come off them altogether. I kept telling myself that I would not have to suffer all the side-effects that come with Prednisolone. I wish you well.

[Lovetobe in reply to Feeder]

Hi Feeder thankyou for your reply, I don't think right now I could lower anymore tbh.I'm just experimenting with a increase for 10days to see if it makes any difference to my symptoms, then I will sort of know what I will do next, see my GP ....ha ha....or try and see my rheumi.....bigger ha ha!

[PMRpro Ambassador in reply to Feeder]

I appreciate you have experience of taking pred, however, since you don't appear to be on pred for PMR but for lung conditions, you will not be aware of the balances that we have to achieve in controlling the symptoms of a longterm chronic rheumatological illness. We are happy to reduce - but unfortunately it isn't an easy process titrating the dose we need. The correct procedure for us is to taper until symptoms of the disease start to return and then return to the previous dose at which we had no symptoms.

[Olympian]

H sorry you are suffering but lotss of advice on this site.Personally I have been reducing very very slowly I am now down to 1.5 but and a few niggles and overall stiffness since dropping down.I persevered and a few days later back to overall fitness.This has worked for me but everyone is different basically trial and error and luck if you get a good GP.

[Lovetobe in reply to Olympian]

Thankyou x

[Lovetobe in reply to Olympian]

Thankyou x

[Harrigan]

I no how you feel I got down to 5mg after 3yrs then very not well so Iam back to 10mg. Seems to be going on forever.get so fed up.

[christi48]

Not sure if this helps, but every time I reduce my dose of Pred, even by 1/4 mg. I notice feeling depressed and anxious. These feelings gradually disappear after a few days and the intensity and duration of those feelings lessen with every taper. Good luck.