I was diagnosed in Jan 2023 with PMR & put on 15mg Prednisolone. I am now tapering 1mg per month and am down to 8mg. I am exhausted most of the time, can’t walk in a straight line and stagger quite a bit if very tired. I also have a very annoying sensation under my scalp on the top of my head, which feels like something is crawling around up there. Are my symptoms quite common to PMR? I saw my Doctor three days ago & we decided I would stay on 8mg for another month to see if everything improved & go from there. I think I’ve read on here something about the Adrenals needing to wake up around about 8mg? Also my hair is still getting thinner which is very distressing, but a few days ago I read that it does come back the lower the dosage?
I do find all your advice so helpful as at times it feels like you’re the only one with this situation.
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Claremont2023
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You are right that the adrenals can start the need to pick up their game as early as at 8 mg for some people. Others experience this effect at lower doses and I suspect it's at least in part related to how effectively one metabolises the pred. Some will make use of most of their dose, others may only be benefiting from a percentage. Provided you have no PMR symptoms (others hopefully can help with the scalp sensations) your doctor is right to let you stay at 8 mg for several more weeks. In fact I would suggest that after the initial few weeks of guidance from the professionals it makes sense for the patient to have a great say in how fast, or slowly, a taper proceeds. Below 10 mg a taper of 1/2 mg is usually a good idea, and one of our slow taper plans, which you can find in the FAQ posts, is also very helpful.
It could be adrenals causing the problems, they normally start waking up around the 7mg dose but it can vary around that figure. You have got to 8mg very quickly. Do you take Methotrexate?
No I don’t, that has never been mentioned. I haven’t heard of that, will it help & do you take it alongside Pred? I won’t see my Doctor for 3 weeks now so will ask her about it then. I am also ignorant of the Adrenal side of things so need to read up on it all.
Also [when you feel up to,it] have a browse through the FAQs -,you don’t need to read all of them, but there are posts on hair and tapering plans as piglette mentioned.
There has been mentioned about scalp.head issues you mention, but nothing in the FAQs
Would just say that to be down to 8mg within as many months may be a tad on the rapid side, some can manage, but not all.
Not sure if you’ve read this - but maybe have a glance through even though you aren’t new, new…
To be at 8mg after only 8 months is pretty speedy and I would say your PMR isn't fully under control. They are in such a hurry. 15mg is the low end of the starting dose range and really you need 6 weeks at least at each of the doses on the way down. But they want it quicker.
Loads of adrenal info to be found in the FAQs (link at the top of every thread under the post)
and it bears repeating and reading again, including all the links. The pred deals with the inflammation - it does nothing to the underlying autoimmune cause of those symptoms and it continues to attack your body in the background causing fatigue and feeling flu-ey. The only way to deal with that is pacing, resting and delegating! Pred can do it too.
Oh - and methotrexate? That can make you feel even more fatigued! You have to be under a rheumy and personally I wouldn't want to start it at this point.
Just want to chip in here that tapering speed is very much an individual thing. It must drive doctors nuts, actually, because treatment for PMR is not one size fits all. If each one of us who replied here were to tell you exactly how our first year on pred went, every story would be markedly dfferent. This is why it's so important to allow that taper to be patient led, and it looks like your doctor may be open to that, which is a good beginning. I would say that having to slow your taper for whatever reason should not at this stage lead to introduction of any other medication with its own nice little suite of side effects, so if in a month your doctor wants to try something (like methotrexate - MTX) you should feel confident enough to say that you'd rather wait a bit longer and see if a super slow taper of pred is all that's needed. Having to slow a taper is not a failure. It just means your particular version of PMR needs to be handled with a very slow taper!
The other thing, and I'm not sure all doctors understand this and a lot of patients come to the realization a bit late in the journey, is that we aren't cured by pred. It controls our symptoms to give us a decent quality of life, but only time will make the PMR actually go into remission. We can do our part through pacing. Have you read The Spoon Theory? And acceptance. It is what it is and there's no doubt that any chronic illness changes a person and the way we approach life.
Thank you, I am definitely going to have a good discussion with my Doctor. She has been very supportive so far so I’m sure she will be up to listening to me.
I saw a Dr when I was living in Spain for the very same reason, we had just been through a tough time.He told me that it was due to stress.They have me a very large dose of intravenous valium, it certainly made me feel better! and the great thing is it never came back again ! Hope this helps .
Thank you for this, I obviously missed it! Almost 11 years in and I still learn something new from you all. I’ve driven my husband mad thinking it was invisible insects everywhere.😄
That is the point - the first English charity made a DVD to inform patients, family and friends, called "You are not alone". You can watch it on YouTube,
I can relate to all of those symptoms especially from 8mg down, and when asked how I was usually replied 'just concentrating on walking in a straight line right now'...
I was diagnosed on 01/11/2022. As with you was put on 15mg of Prednisolone. I’d been treated for ‘moderate’ osteoarthritis of both hips.
Nothing worked to reprice the pain and by chance spoke to another GP at my surgery, registrar in his last year, and over the telephone easily diagnosed me with PMR.
I was almost pain free after 24/48 hours. I’m now on 6mgs and my reduction has been very slow and laboured. Every eight weeks. The slower you reduce the better in my humble opinion. I’m not medically trained at all but with the advice of this particular GP I’m getting there.
Any issues in/on your head, get an optician appointment and tell them you’ve been diagnosed with PMR and they’ll give you a thorough eye examination.
Not sure if you’re aware, but one in five who have PMR can develop GCA (Giant Cell Arteritis). This must be treated asap as it has severe consequences of sight loss and possible stroke.
This is not meant to scare you but it’s important that we all know s as much as possible about this disease as not all medical professionals have come across it or even know how to treat it.
Wishing you best wishes and hopefully you find the right level of Prednisolone suitable for you. We are all very different.
Always discuss with your GP though and get your eyes tested anyway. Opticians can see so much through our eyes.
The exhaustion kicked in round about the 6mg mark for me. I could hardly walk a mile without needing to sit down. I'm on 3 now and, while still tired, I'm slowly improving in that regard.
my physician assistant recently said he read to stay on a dose for two months and only go down by .5 mg at a time. I’m once again trying to go down from 8.5 to 8 again. Hopefully I’m successful this time. I’m using the tapering method mentioned by so many on this wonderful site. Go slow so you don’t yo-yo as I have over the past four years. The fatigue is the hardest thing to live with. Make smart choices on how much you can do and you will do well.
Thank you for your advice. I am certainly going to mention the slow tapering to her instead of going down 1mg every month. I just find it so frustrating when you've been a very active person to have to slow down & pace yourself, but I now realise it has to be tgis way.
You will get there but it is hard to accept that life has to change. My family has been a great support and very protective. Hopefully you have those close to you who will understand and help you to know it’s not what you do but who you are that counts in life.
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