Continue to taper or not?

[Maggiechris]

Hi everyone, bit of advice needed.

Earlier on this year, on my GP's advice, I tapered by 1mg per month to 3mg per day by which time I felt so wretchedly ill I couldn't cope and had to up my dose ( I think to 7.5) and start to taper again.

I reached 3mg per day again and felt just as bad as before. At this point I found this wonderful site and it's been a revelation and lifeline. Last month I started one of the slow tapers recommended and I'm now half way through tapering from 6mg to 5.5mg. I still have symptoms of dizziness, fatigue if I do more than 20mins of anything and weakness, particularly on my 5.5 days. Sadly, walking for more than 5mins is out of the question. I know dizziness is a side effect of taking pred but it seems to get worse as I reduce the dose (can't win!) What I would like to ask is......should I persevere until I'm on 5.5mg every day then stay on that until I start to feel better before attempting a further taper? Given time, should my adrenal glands start to kick in at 5.5mg?

One thing that hasn't come back on this roller coaster, even at my very worst, is the pain I first experienced with PMR, before being diagnosed and put on pred. Would this indicate that my relapses are more withdrawal symptoms than the return of PMR?

Look forward to hearing from you knowledgeable people!

[PMRpro Ambassador]

It is difficult to say - the dose range would cause adrenal insufficiency symptoms but some could have been the PMR because you were on too low a dose to control the inflammation. But your GP is in an awful hurry! He does need to bear in mind that at your age your adrenal function will probably be slow to return and may not do so fully.

You say you felt wretchedly ill - in what way? Could you function better at 6mg?

[SnazzyD]

Hello, you say your PMR pain is not present and that your main issues are fatigue and dizziness, especially if you are active. This sounds like your adrenal gland function hasn’t yet caught up with your reductions. Yes, they should be starting to work at 5.5mg which they would always do in an ideal world. For many they don’t and they flutter back to life in fits and starts. The only way for your body to take up the slack of the reduced artificial cortisol in Pred is for your body to keep experiencing a lack. There is a fine line to be trod between keeping on reducing to make the body wake up and going too fast or overdoing activity. I struggled with mine and the only way to deal with it was a) introduce 0.5mg drops over anything from 6 weeks to 14 weeks depending on how I coped and b) try to avoid stressing my body mentally and physically as much as possible to avoid having to do extra rescue doses. If you have an understanding doctor you can do what feels best for you, but some docs do believe that adrenal glands switch back seamlessly. I had a combination of being left to it and standing up for myself saying that it was all very well giving me a schedule but I had to be able to function. My worst time was 7.5mg to 5mg and then the good days definitely became more numerous by 3mg. Do have a read of these links from the FAQ’s so you can advocate for yourself and make informed decisions.

healthunlocked.com/pmrgcauk...

[jinasc]

Can I ask apart from the dizziness are you having balance problems?

[Maggiechris in reply to jinasc]

Hi jinasc. No balance problems, just dizziness. Fortunately it doesn't bother me when driving, so that's a bonus.

[HeronNS]

It appears that low cortisol can lead to low sodium, which can cause some of the symptoms associated with adrenal insufficiency. From the description of your symptoms, and the fact that they worsen at your current dose level, it seems most likely that it is adrenal insufficiency causing at least some of the problems, including dizziness and fatigue. Have you asked for a morning cortisol test? If you're able to get to 5 mg you really ought to be given a synacthen test, but I know they don't like to do that test while the adrenals are still effectively suppressed by pred at doses above 5. Take your time tapering there, even if it means doing one of the slow taper methods even more slowly. "It isn't slow if it works".

[Maggiechris in reply to HeronNS]

Thanks HeronNS. No, I haven't asked for a cortisol test. I think I'll stop the slow taper and stay on 6mg for a while and see how I go.

[piglette]

It sounds very like your adrenal glands don’t like being woken up!! Whatever you do don’t reduce until you feel better. Ideally stay where you are for possibly three months ir until things improve. I had dreadful fatigue it was tiring to open my eyes even. Also I had the dizziness and even fainted a few times, luckily when lots of people were around such as the check out at Waitrose!

[Maggiechris in reply to piglette]

Thanks piglette. I think you're right about my adrenal glands, they've been asleep for a good while! As said above, I'm going to stop the taper and stick to 6mg to see if I improve.

[piglette in reply to Maggiechris]

That is a good idea. I stayed at 6mg fir a couple of months and then 5mg for three months. I had turned into a zombie though!

[Bridge31]

How many times do we hear this story ? I couldn’t cope on 3.5mg. Maggiechris. I’ve been on 5mg for 10 weeks now and apart from jelly legs and the odd day of tearfulness and anxiety I’m doing well. I shall try 4.5 from early December. PMRpro has assured us many times that being on a low dose long term is not harmful. There is no rush.

[Maggiechris in reply to Bridge31]

Thanks Bridge31. I've learnt the hard way that there is no rush. I'll stay on 6mg and see how I go. It's so comforting that you lovely people are here to advise and commiserate! I don't feel so alone now on this debilitating journey.

[Feeder]

Hello, The idea with steroid reducing is to find the smallest dose that reduces inflammation enough to alleviate symptoms, but not too small as to cause symptoms.

[Maggiechris in reply to Feeder]

Thanks Feeder, I'm staying on 6mg and hoping for some improvement, might have to try a little higher though.