Tapering question

[Miserere]

I have been reducing by .5mg every 3 weeks since 9mg. After 2-3 days on 6mg I became very lethargic, no energy, brain fog, like walking through treacle with background headaches and neck ache (probably a bit anxious due to this feeling). So I increased to 7mg for one day, then 6.5 for 3 days and all well. I have now reduced again to 6mg and the same symptoms have come back again. Can't concentrate, can't do anything properly, have developed a twitching eyelid and feel useless. This time I think I shall ride it out depending on how long it takes. Eating a very good diet (mainly PK), keeping weight down etc. At last blood test (June) was told I was no longer pre-diabetic - interesting as they never told me I was pre-diabetic in the first place. No point ringing Doctor as my GP has disappeared and I am no longer 'supervised'. Last spoke to a young pharmacist who just warned me of the dangers of staying on Pred any longer than was necessary (these include diabetes, she said). Hmm. Hoping this is just due to the change in dose and energy will ease back to normal shortly. Anyone with similar experience?

[SnazzyD]

Hello, I’d say you are dipping into the dose range where your adrenal glands need to start making up the lack of artificial cortisol (Pred) with its own natural Cortisol. Often the adrenal glands haven’t woken up and will only do so if you keep the dose down and not pop back up to feel better. Obviously if you have PMR pain it would be a different answer. It can make one feel horribly tired, anxious and weak until your adrenal glands become reliable. Do have a read of this from Mrs Nails from FAQ’s. healthunlocked.com/pmrgcauk...

[Miserere in reply to SnazzyD]

Thank you SnazzyD - I have had a look at this and I can see how it would fit. I have been feeling a bit doom and gloom as well since reducing to 6mg, but that cleared when I went back up to 7mg and 6.5mg. I shall try to ride it out but give it longer, as DorsetLady suggests. Perhaps try a slower taper next time. Oh, poo ......

🙃

[SnazzyD in reply to Miserere]

Oh poo indeed. My body noticed every 0.5mg drop so I sneaked it in over weeks. I had to do less in order to not over challenge my body so it had to make more Cortisol than it was capable at the time, it was a pain. Got there in the end though!

[Miserere in reply to SnazzyD]

Thanks so much, Snazzy D. OK - now I can see a way ...

[DorsetLady PMRGCAuk volunteer]

Could be adrenals stuttering and the fact a small increase seemed to help quickly might corroborate that.

If it is, then really all that really helps is a very slow taper -so maybe stick with 0.5mg reductions, but extend the period from 3weeks to longer, perhaps 5 or 6. -and patience!

Have a look at this -

healthunlocked.com/pmrgcauk...

[Miserere in reply to DorsetLady]

Thank you DorsetLady - that is very helpful. I wonder if the adrenals may, indeed, be struggling to get going. I shall stay on 6mg I think but perhaps, as you suggest, for a bit longer than the three weeks and then see what happens. Patience ... is a virtue - I'll try to remember that! Many thanks - what would we do without this forum?

[Oboes22 in reply to Miserere]

Hi Miserere, I use the DSNS method to taper and then stay on the reduced dose for 6 weeks. Am where I was last year about to to to 5.5. All because of a flare last autumn so I am taking it very slowly. Perhaps 3 weeks is not enough for you. Take care.

[Miserere in reply to Oboes22]

Many thanks, Oboes22 - I shall, indeed, take it easy.

Has anyone had the Spring Booster, by the way and, if so, did all go well? I am umming and arrhing about this at the moment so would be glad to hear of others' experiences.

[Oboes22 in reply to Miserere]

I had my 5th a few weeks ago, all well but was a bit under the weather for a day. I had the Moderna when previously I’ve only had Pfizer. It’s supposed to be a good idea to have various vaccines but I wouldn’t have Moderna again.

[Miserere in reply to Oboes22]

Oh, that's interesting. My PMR, without doubt, began with my first vaccine and got worse after the second. So difficult to know. Glad you are feeling no ill effects now, though. Thanks.

[piglette]

Sounds like the adrenals have discovered they have got to start working again and are a bit upset! I went through the deathly fatigue at around 5mg. It was an effort to lift my arm to scratch my nose. I stayed at 5mg for several months until I felt less zombie like.

[Miserere in reply to piglette]

Ah, well ... more patience reqired. Sigh ...

[Hidden in reply to piglette]

Me too. I got down to 3mg n was reasonably comfortable n confident with that. So I took the plunge n went down to 2.5. After 4 weeks of brain fog, head n neck pain n general malaise feeling, I've returned to 3mg. Try again next month?

[Miserere in reply to Hidden]

Absolutely, BrunswickV8 - try, try, try again! Good to know I'm not alone although I wish none of us had to suffer this.

[Seacat30]

I developed a twitching lower eyelid in my first week at 5mg but it might have gone off now. I am tired around lunchtime but seem to recover if I force myself out for a walk.

Cygnets growing up

[Knip in reply to Seacat30]

Thank you for the lovely photo of those little ugly ducklings...who will become very fine swans indeed! On topic, it's funny how actually forcing ourselves to do something when we feel totally whacked, can, not will and not always, reinvigorate us a bit. Take care. K.

[Seacat30 in reply to Knip]

I live by the seaside so have a reward for walking.

View from Brighton Pier

[Miserere in reply to Seacat30]

Thanks, Seacat - I shall try to take it easy but at least keep up the daily walk. As you say, it may make things feel better. Glad I'm not alone in the eye-twitching department. With knee bursitis as well all I should need is a parrot ...

[Seacat30 in reply to Miserere]

Met this one going for his morning walk in the local park.

Parrot walkies

[Miserere in reply to Seacat30]

Friendly little character - you must be in the south east somewhere. Hope the rest of the rest of the day continues like that xx

[Seacat30 in reply to Miserere]

Brighton. Today looks like a good one. xxx

[Miserere in reply to Seacat30]

The best I can hope for is a pigeon!! Enjoy the weekend.

[PMRpro Ambassador]

Into adrenal territory I suspect. Poo indeed - but it is part of the process and if you are unlucky is a hurdle to overcome. Patience - and yes, you may need a lot longer at any given dose than before. However - 6mg is obviously a dose that is shouting at your body to DO something so hanging there for a few months may be enough. Rod Hughes in Chertsey often keeps patients at 5mg for up to 9 months and that sems to make the rest easier. Some people get to the hard part sooner than others - maybe 6mg is your 5 ...

[Miserere in reply to PMRpro]

Oh, dear - I am going to have to come to terms with patience - never a strong virtue in my case. I may have to argue the point with the pharmacist as well if she ever gets in touch again - they parrot the line that reducing steroids is the most important thing. The GP I had seemed to understand to some extent but she appears to have gone AWOL from the practice and no-one talks about her except to say that they do not know if/when she will be back. Mind you, she must have known I was pre-diabetic and did not warn me. So, perhaps I am in control of my own destiny and at least I have this forum for guidance - thank heaven!! I shall progress as sensibly as I can.

[Pandora2 in reply to Miserere]

A good many of us seem to be in the same boat Miserere, useful medical guidance being thin on the ground at the moment. I too have resolved to stick with the forum as being the one place I can make sense of treating this accursed condition. Love the “Ah Poo” fits perfectly. Good luck. X

[Miserere in reply to Pandora2]

Good luck to you, too, Pandora 2! xx

[PMRpro Ambassador in reply to Miserere]

"they parrot the line that reducing steroids is the most important thing"

It is - but appropriately for the condition being treated,Pharmacists know a lot about the drugs they use but not a lot about the clinical features of the various disorders. PMR isn't the same as an inflammatory arthritis or asthma. You aren't using the pred as a management for a flare - you are using it for the long term condition and they need to appreciate that.

[Whitner]

I am sooo grateful for this forum! I am down to 1.5 mg and am experiencing everything you mentioned in addition to feeling a little dizzy (could be allergies). I’ll do as instructed and stay where I am for a few weeks longer! We’ll all get through this. Hang in there Miserere!

[Miserere in reply to Whitner]

Yes, thank heavens for this forum - I'd be lost without it these days. Good luck to you and congratulations on reducing so far. x

[Predsharer in reply to Whitner]

Check your blood pressure. It may be low, that could make you light headed. Make sure you are drinking enough fluids.

[Whitner in reply to Predsharer]

Thanks Predsharer I’ll check that. I drink water all day so that shouldn’t be an issue.

[Francesbarbara]

I was diagnosed with PMR just over 2 years ago and like you have been reducing slowly by 0.5mg since I was on 10mg. I have been lucky and no return of severe pain, my main problem being fatigue. I had got down to 2.5mg and unfortunately at the end of a fortnight on that dose had a fairly stressful weekend. Since then my fatigue level has increased dramatically and I have all the nasty side effects that you describe. I feel like a total zombie, as weak as water and rather 'low'. Because pain is not the problem I am fairly sure this is all to do with adrenals. My dilemma is that I know I must keep reducing so that the adrenals may kick in and if I increase the dose I probably go back go square one. If I was to go with what my body is telling me, I'd probably sleep or at least lie down all day, There comes a time when it all becomes unacceptable and I simply had to up the dose to 5mg this morning. My questions are - having done this, how long should I remain at 5mg and secondly I wonder if age (I am 81 this year) plays a significant part in making this condition(like many others) have an even slower recovery,. I can't find anything on the latter subject in the literature. Do hope that your energy will ease back soon..

[DorsetLady PMRGCAuk volunteer in reply to Francesbarbara]

Maybe have a look at these 2 links, one about adrenals et al and one on dealing with a flare -which will hopefully answer your questions -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Age probably doesn’t help with recovery, as with most things medical -but as our illnesses are considered to be in “older age” range anyway I doubt there is any research etc into that aspect.

[Francesbarbara in reply to DorsetLady]

Thank you - there is so much good advice and info. in the articles, which are well worth keeping.

[Miserere in reply to Francesbarbara]

Well done on reaching 2.5 mg - very impressive. I am probably wrong but I thought 5-7mg was when the adrenals have to start doing their job again - I shall also look at DorsetLady's links which may make things clearer. Sorry that you've had to increase again - it's a devil, isn't it? I hope we can both get through this end up being able to decrease again. Good luck

[Francesbarbara in reply to Miserere]

Yes, I agree, I was told it was about 5-7mg that adrenals started to kick in again. I think in this condition everyone is slightly different. I had a short synacthen test last November and the result gave no figures but just said it was 'normal' and I should be OK to continue reducing the dose. I'll watch out for other posts from you and fingers crossed.

[PMRpro Ambassador in reply to Miserere]

It varies - it can be at as much as 10mg or more that problems appear or it may be at a much lower dose - everyone is different,