I have been diagnosed for polymialgia 18 months ago. Started on 15 mgs prednisone been tapering got down to 3 mgs but was suddenly overwhelmed with fatigue, no pain. Went up to 15 mgs five days ago after two weeks on 9mgs. But Still feeling whacked.
My 18 months on pred has been great , back to normal really, apart from one relapse of fatigue six months ago My doctor put me on 9 mgs then and it immediately did the trick.After that I tapered slowly down to 3 mgs.
I don't seem to be making any headway at the moment I'm a bit isolated here in Spain my doctor doesn't know a great deal about the condition. Any suggestions?
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bBarnabus
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Hello, once you start getting below 10mg your adrenal system needs to think about starting to work. This point is different for different people, probably depending on how much they actually absorb. For me it was a about 7mg. When you get below 5mg, the adrenal system really needs to be making up the shortfall due to the low Pred levels but for many this isn’t a seamless process. Adrenal insufficiency can cause a number of symptoms including deep fatigue. If that is all it is, just whacking the Pred dose up turns off the adrenal glands again because the dose means your body doesn’t need to make cortisol again. For this reason I reduced very slowly such as 0.5mg every 6-8 weeks to 5mg and then anything from 10-14 weeks per 0.5mg from then on.once down to 4mg I had a Synacthen test ordered by an Endocrinologist that checks the adrenal glands’ ability to work after long term steroids. It is worth having done, but doesn’t tell you exactly if the whole process of cortisol production (starting in the pituitary gland) will kick in at all times, but it is a good start. At 4mg they were working but just so so, then at 0.5mg they were fine but it didn’t feel great on my journey down. I don’t have PMR, but GCA so I expect others will reply about the PMR side of it. Here is a link about adrenal insufficiency and it is worth knowing about how to recognise adrenal crisis.
I don’t know but somebody might. Can you get yourself referred to an Endocrinologist? Even if you get a Synacthen test done privately here (I’m assuming you want to get one done here) you still need the right specialist to interpret it and decide on the way forward, but from the sounds of things your current doc isn’t it.
Hi I have found a test at the private Spire Hospital in Cambridge and have sent a message -£70 plus includes GP comments - I will see what my GP thinks about it first - he has been excellent but I did not want to bother him with this at the moment. I am developing a headache at 10.30 p.m. every night which clears with two paracetamol so thought it might be adrenal thing as I am on 6/5.5 mg of pred
Is ADDENBROOKES your local? Your GP ought to refer you but you need to be below 5mg to get your money’s worth. Don’t be confused between cortisol test and Synacthen too, but when I had mine done they did both
From what I remember from having a couple a few years ago, the results of syacthen tests are quite complex and need an endocrinologist to interpret them, my GP said she had no idea what all the numbers meant. Also, you can't have an adrenal test until you're below 5 Pred. I had to come off pred and take hydrocortisone for a while.
Yes you can, but not sure they are the same as you would get on nhs as some are kits just for saliva. You need the proper test. But as snazzy says you would need someone to interpret and plan a treatment strategy. I can't remember what dose of pred you are at but I wouldn't bother until 3mg or lower. You may as well ask for a referral on even if it takes a while. Even when off pred it can take a year to feel better. If you can get a complete blood panel at gp for electrolytes etc then you can say Dr needs to refer if they are all OK. There isn't really a fast track... Just less slow tracks that you tolerate.
Thanks - I am on 6/5.5 mg of pred so may be too soon. There is a blood test at the private Spire Hospital in Cambridge for about £70. My GP is lovely but did not want to ask for this at the moment although I would check with him before I did the private thing.
I wouldn't even think of having it done, and nor would a rheumy or endo at 6mg or thereabouts. You need to assess what going on but bear in ind the test the dr will do at 5mg is only a test to see if your adrenals are capable of working again. If they are capable then you will continue to feel like you do until they wake up.... It very hard as the crossover of pmr and that level o pred can significantly overlap. If it's "knowledge your seek" then I would wait under under 5mg.
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Would agree with SnazzyD about adrenals - but might also be a bit of PMR as well.
18 months in is not very long - although you say you have had an easy ride so far, maybe you’re now gone below the level of Pred your illness actually needs.
As for reducing 6mg in 6 months - that may be okay for some, but at those doses, 0.5mg per month is much better. Helps you not go below dose you need, and also helps the adrenals spark.
If you’re still feeling rough at 9mg - couple of things, are you trying to live too normal a life? If so, slow down a bit and see if that helps. if not, then maybe up to 15mg again for a short while, back down to 10mg (not 9mg as that’s not enough) for few weeks, then 0.5mg per month (providing you feel okay!)
It is strange - some of the big PMR/GCA research groups are in Spain but their primary care doctors are woefully ignorant and some specialists are not much better.
I'd say you have a mixture of not having been on quite enough for the PMR and your adrenal function lagging behind the reduction. It is a shame you went all the way back to 15mg and I'd suggest dropping back to 9mg asap if the 15mg isn't helping at all - just to save having to reduce slowly.
I had to reduce my pred dose recently to have a scan done. Down to 10mg I felt no different but as I went below 10mg the fatigue started and having returned to 10mg it isn't improving quickly. However - I'm surprised your fatigue hasn't improved at 15mg.
Is there any chance there is something else going on? It isn't always PMR and pred to blame.
Thanks. It is a concern that it is something else causing the fatigue especially as I have been on 15mgs for a week now and it doesn't seem to be having any appreciable effect. Which should rule out adrenal fatigue as well. Just trying to be happy doing nothing at the moment
I have had exactly the same, I am certain it is my adrenal glands, I did up my dose a tiny bit to make it a bit better. The fatigue was awful. I even felt tired lifting a book. I mentioned it my GP and he just shrugged, I am not sure he was listening.
Whether this is of any direct help to you I doubt, but add it to your store of anecdotal accounts of different experiences with fatigue. Because I was sure it was pred withdrawal and sluggish adrenals causing my fatigue (the dreaded deathly fatigue) I never increased my pred dose solely to deal with it because I thought making the adrenals pick up their pace more important than hoping for a slightly less fatigued day. I only ever increased pred when dealing with increase of PMR pain symptoms. I am now down to .5 mg (note the decimal point) and occasionally pushing the zero button. I am much less inclined to fatigue than I was at earlier points, but still do experience it from time to time. I try to give myself recovery time after activities of every kind.
Barnabus, you've been very fortunate in being able to reduce as quickly as you have. Like others, it's surprising that increasing to 9 mg again, let alone 15 mg hasn't helped with the fatigue and I too have to wonder if the fatigue is caused by something other than PMR.
We're all so different. I've been suffering Deadly Fatigue (DF) for three weeks now after "successfully" making a .5 mg drop from 13 to 12.5. Successful only in terms on no return of PMR pain.
If, as suspected, my absorption rate is only 50%, that means my adrenals are struggling with 6.25 mg. In 6 years I've been able to reach 10 mg 3 times struggling with DF, only to have a flare send me back to 15 mg. This time it seems the adrenals are really taking their time and I'm beginning to wonder if they are capable of waking any longer.
There's no way a doc will test adrenals at this high a dose.
Persevering for now but not sure how much longer I can put up with it.
Nowadays fatigue is my main problem, more so than pain. It does clear up when I have depo medrone (steroid) injections. I do woner whether the PMR has almost gone and this is something else as ESR and CRP are still high. It's ongoing and my rheumy is on the case.
You may need to stay at 3 for a while. Just try to be patient with your body. The drs know that preds are bad for us but sometimes we just have to say it’s ok if we have to stay at this dose for a little longer.
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