First of all a big thank you to all who contribute to this forum. I don’t know anyone with PMR - and most of my GPs (with 1 exception) don’t seem to have much experience of dealing with it, so in the 18 months since my diagnosis the site has been my ‘bible’
When diagnosed I started on 15mg of Pred. Gradually reduced to 10mg - then on GP advice stayed on this dose for 6 months. His experience suggested there was less chance of flares etc with this approach. My current GP doesn’t seem particularly interested in my ‘condition’ so at the moment I’m self managing. I’ve gradually reduced to 8.5 mg and plan to continue reducing by 0.5mg every 4 weeks. All has gone well so far 🤞🤞but
1) I’m more susceptible to minor illnesses (stomach bugs, head colds, urinary infections) than in my pre PMR life
2) even when symptoms have disappeared I find it takes a long time to shake off residual lethargy / exhaustion.
Is this to be expected with PMR or is it a result of taking Pred - or a combination of both. At one time I would have pushed on even if I didn’t feel too good, now I just go with the flow, do what I can when I can.
Actually it’s sometimes a good excuse to put the housework on the low priority list and just spend time stroking the cat doing things I enjoy with husband, family and friends 🤣
Thank you
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Mandyq
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Sounds very familiar after 5 years since my diagnosis with PMR. Other health conditions have arisen since then, probably related to extended Pred use and possible broader autoimmune issues. What I've learned is this whole thing can be much more complex than at first thought and will not be resolved quickly or easily. So adjust your expectations and be kind to yourself. Do what you can, when you can and don't stress about the consequences. Enjoy whatever you can in life, especially stroking the cat.
Others with more knowledge will be along, but in the meantime I'd just say that steroids (in very simple terms) work by suppressing the immune system so as to reduce the inflammation in the body.
This therefore means your body is less capable of fighting bacterial or viral infections so its important to try and bear this in mind.
I've been on steroids 4½yrs now and I'm currently on 3½mgs of pred, but I'm still mindful of avoiding crowded spaces or friends with colds, throat infections, etc, etc. I've learnt that if I catch a cold, I can recover from the cold symptoms (all be it a bit slower than pre PMR), but the after effects... or consequences of that cold may be an issue.
For instance, the viral infection may trigger a flare (and has done) or it may cause long term side effects that take several months to diminish (a bit like the 'long covid' effect), or it may just leave you you with what feels like an almost insurmountable fatigue for a long time afterwards.
Of course PMR & steroids themselves can sometimes cause these symptoms too, but it's sensible to remember that your immune system will be weakened to some degree and you will be more susceptible to the things you mentioned.
You'll probably find you bruise more easily & the bruising takes longer to disappear, and that scratches, cuts, wounds etc also take longer to heal.
Unfortunately, 'pushing through' these periods is definitely not advised as it can aggravate the situation and may cause further complications.
It's important to rest as much as you need to with PMR, so if your body feels tired...listen to it and act accordingly.
"Going with the flow & doing what you can, when you can." sounds like a good plan to me.
I think you’ve done really well and that was a good GP who held you at 10mg for 6 months. Wise I think. I also think you may have to slow down even more going forward. This illness has no timetable and won’t let you dictate one. I now have to go very slow, repeating steps in reduction over 2 months. Often I have to pause and go back staying at a dose longer and then try again. I have to pace myself and have learnt to prioritise. Below about 7mg we’re into adrenal territory so its even slower for many. Don’t worry about a perfect tidy home. Life is for living - you sound like you’ve got that. I do hope your GP is looking after your bones too. Dexa scan, calcium if necessary. I am managing myself too - blood tests when I request them (once a year at least). Watch my diet. Like you I got a lot of information, advice and support from the experienced good people on this site. Good luck.
Yes you’re right about the GP. He diagnosed PMR quickly and was keen to ensure that I managed all aspects. I felt his knowledge was based on experience of other patients - this really boosted my confidence in his views. Sadly our surgery has changed and I’m not sure the current set of GPs have even heard of PMR. That’s why the members of this forum are so vital to me, and I suspect to many others. Thank you
Kendrew and gwyneth have already said about the infection and general malaise. On 8.5mg you could be entering the phase where your adrenal glands need to wake up. According to how much Pred you absorb in reality, your dose might be starting to be less than the normal level needed for every day life. This normally comes from your own cortisol (natural Pred if you like) but because Pred is a strong version of cortisol your adrenal glands have just shut up shop for now. This is to be expected but the process of waking up again often isn’t seamless. Do read the adrenal link from the FAQ’s as essential reading for all getting below 10mg.
Agree with SnazzyD regarding adrenals, and she has already given link I would have, so won’t add more..
..other than to say time spent with hubby, family, friends and cat [not necessary in that order😉] is much better than any form of housework… that will still be there tomorrow and the day after, and the day after that, they may not.
A bit of both 🤣I started the descent from 10mg in March, my aim was to reduce nice and slowly and go for about 0.5mg every 4 to 6 weeks. Based on the views here I knew this might not be as simple as I hoped. In reality I’ve taken a pragmatic approach and when I’ve felt the odd twinge in hips and shoulders I’ve not dropped as quickly as I’d scheduled.
If everything had gone as per my plan I’d be at 7.5mg - but you know what they say about the best laid plans - and I’m currently at 8.5mg. But that seems to be OK
I’m just grateful for all the advice found here- the combination of personal experience backed with links to medical studies/ papers is an excellent combination for anybody trying to get to grips with PMR.
If you use either PMRpro’s DSNS or my Simple Tapers (if not already) it takes about that time -but is easier on body than an “overnight” drop -and if you feel a bit wobbly part way through you can always repeat previous stage … more likely now adrenals need to come out to play -
Sounds as if you have it pretty well sussed out!!!
Some people tend to be more susceptible to infections when on pred - others don't. Are the UTIs infections - have they been confirmed with urine cultures done at the lab? The symptoms of UTIs can also be due to irritable bladder syndrome which is not uncommon in PMR or even to calcium supplements causing grit in the urine which causes irritation and pain on urinating,
The fatigue is a component of the underlying autoimmune condition that causes PMR and any additional infection will make it worse as it will poke at the autoimmune disorder. It is your body telling you to rest and let it heal.
though they kept patients at 10mg for a year - it reduced the rate of flares from 3 in 5 to 1 in 5 patients. I think that demonstrates that not forcing reductions to below 10mg too soon is an important feature of tapering the dose. If only more doctors knew ...
Thanks PMRpro. 1 of the UTIs was confirmed for the other I was given antibiotics as a precaution.
I’ve now learnt to listen much more to my body and rest as needed. It’s v difficult when you’ve been a busy bee.
I’ll read the study on the link. Listening to the experiences of others - where GP has insisted on a rapid reduction - I’m grateful that he recommended the 6 months on 10mg approach as the subsequent reduction to 8.5 has been relatively straightforward ( I hesitate to say painless!)
For UTI’s try D-Mannose, it’s brilliant for nipping things in the bud if you feel rumblings. There are lots of fans of it here. You can buy them from health food stores and if they work you have avoided a chance of the bugs becoming resistant to repeated use of antibiotics.
Keep in mind that Pred can irritate the urinary tract and this can mimic a UTI. I had to keep my urine dilute all the time to avoid this. Also, calcium supplements irritate it in some of us too.
Hi Mandyq! So pleased you are getting all the correct advice on this forum. Wonderful, aren’t they? As SnazzyD has suggested, DMannose works very well for me, I buy it online from the usual Mr. A.
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