Hi Everone , special thanks to PMR Pro , Snazzy D and Dorset Lady for constantly advising as well as others on this marvellous forum .
I`m suffering badly with adrenal insuffiency symptoms(Extreme fatigue , Anxiety , feel like I`m not on my own legs , Gastro discomfort, etc. ) . On 8 mg of pred at the moment . Have tapered down from 22mg . I`m in a worse place with this ilness than ever in terms of the way I feel . The only good thing is that I`m on a lower dose than before of pred.
AND NOW , for the last 5 days , my pmr symptoms are making themselves more obvious as in a mini flare , resulting in discomfort , light pain , enough to to prevent good sleeping .
I know the answer from earlier posts is to increase by 5mg for approx a week and then drop back down , perhaps to 9 mg , but can this be a bit longer if needed eg 10 days? . But my overidding question is, does this not impact the the adrenal wake up procedure I have been going through in the past 6 weeks. as in the pred would take over and I then have to start again on the wake up .?
Thank you Marek
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Marek1
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It is really not an exact science and so who knows. I found some reductions easier than others adrenal-wise for no obvious reason. The fact of the matter is that you need what you need for your PMR and adrenal ‘training’ has to come second.
Regards tiredness, is your vitamin D level ok? Low levels can make a big difference.
Your first objective is to keep PMR inflammation under control. Trying to keep the Pred low to trigger the adrenal glands when you are in pain risks getting into a pickle and ending up going up anyway. Your fatigue may have been the first sign of a flare ramping up so once that is sorted, you may find the adrenal but might, just might be better next time round.
At what dose did you have problems with the adrenals? It is just 8mg seems quite high, but of course possible. With adrenal problems, ideally you should just stay on the same dose and fight through. Having said that at 5mg I became such a wet rag suffering from the deadly fatigue I did increase to 6mg. It did seem a bit better reducing the second time. I am not sure if psychologically I was set up for it or not the second time!! As you say with PMR problems you do increase the dose by 5mg up to a fortnight, which is different from adrenal problems.
Hi Piglette , its possible that its not adrenals as I remember having fatigue issues when I was on 15mg , to the point where it really really impacted my life . but now its a lot worse since 8.5mg
Pred can make one feel quite groggy. The trouble with this journey is that fatigue and grogginess can be cause by different things throughout and it can be a devil to work out what causes are in the mix at any one time.
Ah, that might explain things. You never know your adrenals may not complain and happily wake up. PMR is an illness and can be life changing. It likes respect. One cannot just carry on as if nothing has happened because you happen to be taking steroids.
You really shouldn't be you know. If you are taking enough pred to manage the inflammation AND making lifestyle adjustments to accommodate the PMR, then you shouldn't feel too bad, Back to normal no, but reasonable, yes.
yes its really bad . thats perhaps why Ive attributed it to adrenal problems as the symptoms ive described (Monster fatigue , gastro stuff , anxiety and wobbly legs all seem as if they might tie in) . anyway onwards and forwards hey ? !
If it is Pred directly, it should be worst on higher doses and reduce with dose. Adrenal issues occur once you get below 8mg but it varies, if it happens. Pred didn’t agree with me at all but by 10mg I could feel a positive difference. Has it always be there and if not when did it start? Has Covid featured at all?
Ah , the tapering god is trying to lure you down his dastardly rabbit hole. Aided and abetted by his medical sidekicks, armed with his book of charms and horrendous steroid side effects he plies hopeful sufferers with optimistic and wondrous promises of a glorious pain and problem free existence.
It really can be a balancing act at this stage - but while adrenal function will wait for you to get to a lower dose, PMR will kick back hard as soon as the dose is even marginally too low to manage all the inflammation and that leftover inflammation builds up slowly until you get symptoms again and if you ignore it, you can end up back where you started,
Under the flare protocol we usually recommend you can stay on increased dose for up to 14 days without impacting drop back down and your adrenals.
As others have said it’s very individual - but you do need to be in the correct dose at all times to control your PMR - if you aren’t, then it’s a waste of time… and miserable for you.
HI Dorset Lady , Thank you for your insight . I have gone up by 5mg from yesterday .When you say ypou need to be in control of your PMR through the correct dose , otherwise its a waste of time , do you mean you eventually go back to square one ?
No I meant you are taking Pred with all its side effects (if you are one of the unlucky ones) but without the benefit of managing your PMR. But worse case scenario might be having to go back to starting dose.. hopeful not, but a possibility.
Sometimes one has to go worse than square one but that doesn't mean that you don't get the dose down eventually. My own trajectory was 20-14 in 6 months-then Covid up to 20-25 for 6 weeks then to 12 in another 10 months. Touch wood I feel my PMR is more stable than it was in its first 6 months.
I’m in exactly the same place and have increased from 8mg to 13mg today. Fingers crossed I’ll feel the benefit of some pain relief and not feeling exhausted all the time. I plan to go down to 9mg in a week or 10 days.
personally, though I know it goes against the grain of what everyone here suggests, I have just gone with it even though feeling very bad. I have never given in to going back up again with pred. Sometimes I have had to stay at the tapered dose a good while longer than anticipated before trying again to taper but have never increased. I started with PMR April 23 and am now down to 2 mg. I was trying for 1.5 mg but couldn’t do it so am staying at 2 mg a while longer before retrying to taper. To me it seems a rocky road once you start to increase again as that coukd become the ‘norm’. However each to their own.
Then you have been lucky - once you get to too low a dose of pred for the disease activity, the inflammation just builds up until you may be back where you started. You need enough or you might as well not bother and in the case of GCA, that can be disastrous.
Yes, I totally understand what you are saying about GCA which I don’t currently have. I think often it is difficult to know, for PMR, if you should hang in there or not when tapering but that has been the method I decided to adopt and so far so good. I may yet come unstuck but will give it my best shot.
Usually when changing dose I have felt really quite bad for a couple of weeks but I have paced myself and just gone with it. I also have sever OA so it’s not been an easy journey but I hope that the end is in sight.
When changing dose at higher pred levels it was PMR bad and when I hit 5mg it was adrenals I suspect. I stayed at 5 mg longer than other tapers and getting below this level of 2 mg is proving hard so I am staying longer at 2 mg before retrying for 1.5 mg.
I could pretty much have written your post. What struck a note was "wobbly legs". I can't recall that being mentioned before but that's me ok. Best of luck.
I had not noticed I am afraid. I suppose I could be suffering from, unrecorded until now, lack of observational skills. Now is that caused by PMR, Pred or adrenal insufficiency. Take your pick 😜.
This is the first time I've read about wobbly legs. Good to know, as lately I have been puzzled by my new way of walking. I tried to put it out of my mind -- as worrying about something is of no help. I just try to be more careful.
Can be caused by many things [and probably described variously by different people, very often just as weakness in legs; I once referred to it as the penguin waddle in a post.
PMR itself, Pred, neuropathy , and as you get lower probably adrenals! Deep joy😳
There are 2 things to consider . One is treatment of PMR and finding the dose of Pred which balances the amount of inflammation produced every morning (IL6). The second comes much later, once PMR is in remission. Then, and only then can we reduce our Pred intake to zero but taking into account the fact that the HPA axis has been suppressed. The lucky ones among us can do both at once . I mean find a dose which keeps PMR in check and is low enough to stimulate HPR axis activity We talk about the adrenal glands waking up and producing cortisol. That is a simple explanation of a very complex process involving three important glands. Active PMR will cause fatique, nausea, anaemia. Because there are no "tests" to identify and confirm what we call PMR , the best we can do is treat our symptoms with the appropriate dose of Pred and be mindful of how we feel. As my peers continually say... Symptoms trump blood results. You are not continually tapering to zer..
I started getting sluggish adrenal symptoms when I tapered to 6mg pred. After that I had to drop .5mg every 14 weeks or the dreaded symptoms would return (fatigue, gastro issues, emotional dysregulation and low blood pressure). Made it down to 5mg but any stress set off the horrid symptoms again.
Once I started a new job at 62 after 6 years off due to PMR, I tried a pred burst up to 5.5mg for a week but still felt horrid. It took going up to 6mg to settle things down and stabilize. I’ve told my rheumy I have no plans of tapering while I’m working. No way I want to go back to those first 3 weeks of training when I felt worse than at high doses of pred.
Lower doses of pred can be tricky to navigate. When I’m at a high enough dose everything is manageable….even going back to work starting a new job. For you, that might be 9mg for now. I got stuck at 9mg for almost two years before trying methotrexate.
I found that even doing a pred burst or tapering at lower doses tricky because adrenal insufficiency and pred withdrawl symptoms overlap but respond to a “wait and see” approach, PMR symptoms are another story…they require a response because left unchecked can develop into a full blown flare.
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