I was diagnosed with PMR in October 2020 and prescribed 15mg of Prednisolone. It has been a very up and down journey with various side effects which, when reading various comments on this wonderful forum, all seem par for course. I got down to 2.5 mg alternating every other day with 2mg.
I had a call from my GP last week giving me my blood test results and he said that my inflammatory levels were good and to reduce to 1.5mg.
For the past four days I have felt terrible. Low mood and very tearful. Fatigue like I have never known, excessive intermittent sweating but the worse is the strange muzzy feelings in my head. I’m feeling terribly anxious. Has anyone else experienced these strange feelings when reducing or could something else be going on?
Thank you all so much for the support and advice you constantly give.
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Ashington52
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At such low doses, 0.5mg can make a really big difference to your illness , plus I would say some of what you describe could be down to your adrenals glands stuttering -as you can see from the attached post they can be signs of adrenal insufficiency-
You probably need to discuss with GP about returning to 2mg or 2.5mg and also request cortisol test to check the levels of your adrenals. Initial one can be done at surgery but you may need a follow up one at hospital.
Thank you for your speedy reply. In my mind I thought that was why I was feeling awful and of course I’ve read all the posts saying similar but in my anxious state I had myself imagining all sorts!
That is absolutely typical signs of adrenal insufficiency. Your doctor forgot that side of reducing - it isn't just the inflammation, at this level the adrenal function has to wake up too.
You would have been far better going via 2mg - that was a relatively massive change in dose. And I'd go back up - even before you speak to the doc.
I could have written your post. I have been exactly the same in every detail. I even got anxious about driving to my surgery and when I got there I sat in the car and cried with relief. I NEVER used to feel like this. My. Rheumatologist wants me down to 1mg by the time I see her again onn23rd September. I got down to 1.5mg but I’ve just put myself back up to 2mg. My GP said I shouldn’t be reducing by 0.5mg but by whole mg but my rheumatologist said to do it by 0.5mg. I’m inclined to listen to her as it’s her field of expertise. I have also developed a huge tummy since starting this ‘Journey’ last July. I completely feel your ‘pain’.
I’ve never ever been like this and I have been fortunate since having PMR that I’ve been able to continue with my voluntary work and look after grandchildren but now ……. I really thought I was going crazy. It has been the most awful four days. I’m so sorry that you are also suffering but you have made me feel so relieved.
The GP is talking out of the top of his head (trying o be polite here ) - it doesn't matter how much or how little you reduce by - as long as it works for you!
You are definitely not alone. I can relate to all those feelings which is why I’m staying on 5mg until at least the New Year. I still have days like that even on 5mg. I’m sweating now although there is never any actual perspiration there. Just the hot skin crawling feeling and the fuzzy head. I’m going out to my bridge club tomorrow and I bet someone says… “ You look well “
I shall be requesting the air con whilst others will be shivering 😬
Hi you're not alone with your symptoms . Ive had poly for approx 7 years started off on 20mg and I am stuck on 5mg . I cant reduce or I get pain.I get terrible sweats , anxiety and ive out on two stone snd body shape has changed. My tummy is huge as is my top of legs arms and neck area. My next goal is to get a pill cutter and try coming down 0.5mg at a time see how I go
And you know about cutting carbs? It may have to be drastic, but it IS possible to lose weight on pred if you didn't know early enough to avoid weight gain.
I’ve quite clearly rushed ‘things’ on the advice of the GP and as I say my tummy looks as if I’m pregnant. I’m going to do as another member of the forum suggested and introduce it as my ‘steroid baby’. This forum is just wonderful. I’m already feeling better by not thinking ‘what on earth is wrong with me now!’ Thank You
Hello Ashington, When I reduced my pred I suffered from dreadful depression, something I don't usually have. I upped my pred by 1mg and it disappeared. I'm now back down to 6mg after nearly 2 months on 7mg and feel fine except for a muzzy, tight head and tiredness which could be due to problems with the adrenals. I plan to stay on 6mg for a time and hopefully things will settle down. Sorry to read that you have also had a muzzy head and the sweating and I hope that you will feel better soon.
I’m sorry your feeling this way. My husband started to feel this way when he hit 7.5. The anxiety and strange feeling has been a nitemare for him. Finally at 6.5 he feels much better. Not 100% better but that feeling has lifted . He was taking a half of xanex and it really helped him. He is off of it now. I hope you feel better soon
Thank you so much. I have already increased my steroid and already starting to feel better. GP’s sadly are not aware of the horrid side effects of steroid withdrawal.
So sorry you are experiencing all these problems with the reduction of pred. Last Nov through Mar I had a horrible time a 4mg. There was probably some adrenal influence going on but unfortunately due to the PMR, I had to go back to 15 mg before the pain and stiffness subsided. Needless to say, not what I wanted to do and my rheumy wasn't exactly happy with me. I found that with the "muzzy head and anxious" feelings, drinking plenty of water helped me. Also pacing and frequent naps helped with the fatigue. Some days you just need to stay in bed and not do much at all until you're over this slump. 2.5 mg may be where your PMR inflammation is best managed and you may need to stay there for a month or 2. I wouldn't try reducing again for a bit. I can totally relate to the "steroid baby". I was on a keto diet when I was diagnosed and now it doesn't seem to matter what I do, I'm still gaining! Nearly 30lbs! I know that taking my daily walk is essential. It also helps to clear my head. I do have days where I feel like my legs are 100 lb marshmallows. I don't get any swelling but they feel fat and mushy and bouncy, which makes walking fee a bit like running while in water waste deep! Also, from what I've learned on this wonderful forum, your blood markers are only guides. You really need to listen to your body. I hope this helps and you are able to get back to feeling better and successfully taper off the dreaded pred.
Your reply has really helped me thank you so much. What you have described is exactly how I have been feeling. I’ve gone back to 2.5mg and when I’m feeling relatively ok I will start to taper much slower. I can’t begin to thank you all for the support I have been given on this wonderful forum.
Hi Ashington52 I am going through exactly the same myself. I have just reduced to 1.5mg per day and feel awful myself just like you, tired, sweating and wake frequently in the night feeling 'strange' is only how I can describe it. I cry, shout, fearful, obsessive with feeling ill, thinking about death and horrible things. I have been told this can happen and the psychological effects can take up to 9 months to go away when you finally ditch the devils tic tacs for good. Like you I have suffered a kinds of side effects which became more apparent the longer I have been on them. Sad part about this is my pain in shoulders is returning
I can’t begin to tell you how reassured I was to read your post as I have been with all the replies I have received to my post. I wake in the night feeling so strange that I’m convinced I’m going to die. This is so not me and it’s frightening. Like you the pain in my shoulders has returned!
I too think I am going mad. I used to love my bed now I am fearful of it as I know I will wake with these strange feelings and obsessive thoughts. I feel like I have serpents slithering around inside of me that's how anxious I have become too. You are not alone my friend but we can do this, it will take time and we will get there.I was so convinced I was dying that I paid to see a gastroenterologist as I convinced myself I had cancer from some of the effects and I couldn't even believe him. Put myself through a CT colonoscopy which was awful only to be told I had nothing significant to report, a tiny kidney stone and s cyst which are incidental findings.
It's awful, the anger, irritability, crying, scared baby that I am....I ask myself where has the sociable, strong woman gone
After reading all the wonderfully supportive posts on this forum I feel so much better and now believe that I will get there …. I’ve got to accept that it’s going to take time. I read all the new posts on the forum every day and itwas only when I got to a point when I was terrified at the way I was feeling that I decided to write something myself. If only I had written something sooner I would have avoided days of immense worry.
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) - it doesn't matter how much or how little you reduce by - as long as it works for you! 
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