Shaking and anxiety on 8 mg pred

Hi lodger.   I was diagnosed beginning of last September.   because of my extreme sensivity to meds, I was started on 71/2, up to10 2 days later, then 15, then 20 for a few days, then came back down to 10 again by Christmas.  I was very agitated, restless etc. on the higher doses, that seemed to get a bit better, but it has got worse again in the the last couple of days.  My anxiety levels have been high all the time, the whirling in my head comes and goes, but I think seem to be worse because of the agitation.  It is very uncomfortable to live with.  It would make me feel a lot better if someone else has found a way to cope with this.

Anxiety is a known side effect of pred - obviously one way of dealing with the problem is to stop the pred but if that isn't an option then there are medications which will help and your GP should really have considered that some time ago since it is obviously a problem for you. Do go and discuss it with him.

If you were less agitated at the prvious dose maybe it is the change in dose that has triggered it being worse - that is why we suggest a very slow reduction, introducing the new dose just one day at a time which doesn't shock the body by the loss of the pred so much.

One is described in the replies section of this thread:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

 

As I also have numbness and pins and needles in my legs and feet, due to short nerve neuropathy, he gave me pregabalin which he said would also help with anxiety and insomnia, but it caused too many other side effects, so had to stop it.  One of its side effects being anxiety !!!  

I went to see a rheumatologist who suggested I try oral methyl pred, but I am loath to go from one to another and find it no better.  I looked it up and it has anxiety as a side effect too.  I had to try 5 different beta blockers before I found one which I could tolerate.

I havent really been a lot better on any dosage of pred, i do have days which are slightly better, but cannot work out the common denominator as to why !  Perhaps if the fatigue wasnt so bad i could do more exercise which would help.  I have only been on 8 this time for 3 weeks, but perhaps I should  try reducing slowly now to 7 or 71/2 to see if it improves.   

Are you saying you haven't had an about 70% improvement in your "PMR" symptoms even at 15 and 20mg? That would suggest it may not be PMR but one of the other things that present with very similar symptoms and which do not respond to pred but do to other things. Or do you mean the anxiety hasn't been any different?

Personally, I found the only effect that methylprednisolone caused were the unpleasant ones: weight gain, muscle wasting, my skin and hair went wild, I felt rubbish! And it did nothing for the PMR, allowing a massive flare at even 20mg. The rheumy here wouldn't listen when I told him right from the outset that I didn't like it, it felt strange. My new GP, however, did believe me and offered the only other option here, Lodotra. Medrol is the standard corticosteroid here in northern Italy - most people do fine, but not me!

I had a huge improvement in the pain and stiffness, it is the fatigue and anxiety and restlessness which cause the problems.  I find them very difficult to cope with.  

I dont like the sound of Medrol at all !   I had breast cancer last year and also could not tolerate tamoxifen.  I had just finished radiotherapy when the symptoms of  PMR first appeared, diagnosed a few months later in 

september.   Funnily enough, my oncologist also had breast cancer some years ago, followed by PMR !  She was very interested to hear about PMRGCAUK.

Oh right - that's OK then!

The fatigue is part of the underlying autoimmune disorder and the pred doesn't really do much about that. It is up to you to rest and pace yourself to manage the fatigue. Google the spoons theory by Christina Miseriando - you have to manage your resources as she illustrates there. 

The anxiety and restlessness is probably due to the pred and it will improve as you reduce the dose. If it is too bad then discuss medication with your GP - it is possible to help it a bit if you really cannot cope.

If you mean that you have good days and bad days of the PMR it is almost certainly because on a good day you do far too much - your body is intolerant of acute exercise. It won't tell you you are doing too much so you over do it, thinking you can manage more, and then your body takes far longer than normal to recover. In the meantime you try to force yourself to do things and just make it even worse. You MUST rest - that doesn't mean sit and watch TV all day but it does mean just going for a walk, maybe a gentle swim if you have a warm pool to keep your muscles mobile but not doing the heavy housework and exhausting yourself. Look for ways of adapting what needs to be done - after all these years and down to 5mg of pred I still cannot sweep/wash floors/vacuum for more than a few minutes at a time. So I do things in tiny bites - but I also have learnt to live with some dust. If OH doesn't like it he can either do it himself of find a cleaner. If I do it I am miserable for days! Life may be too short to stuff a mushroom - it is certainly too short to kill yourself with housework! But you can achieve far far more if you do it in 10min chunks with at least 10 min rests in between.

But be patient - your body will get more used to the pred and as the dose reduces things will improve. Hang in there.

Thanks Eileen.  I think some of my anxiety is related to the mild achy, but very persistent, sometimes little niggly pains sensation that I get in my head.  Sometimes in the temple area.  I am still worrying that I have GCA, although the GP, neurologist and rheumatologist all think it is stress related.  I tried Bowen therapy which worked with other parts of my body, but not my head.   It is there at the moment worrying me so much.  I know stress is not good for us with PMR, but I cant seem to shake it off.   My optician said my optic nerves looked very healthy.  

I had scalp pain for a short time and jaw claudication during the 5 years I had PMR that wasn't recognised, but it went away entirely once I was on pred. At one point after going onto pred, having reduced to 8mg/day I had some double vision - the rheumatologist here told me to go back to 15mg and said that, although it was fairly likely that I did have GCA, and had probably done so the entire time, unless I got far more serious symptoms that 15mg was enough. He felt it was quite common and the really high doses are only needed for GCA that is affecting your sight. You will almost certainly feel quite ill and have other symptoms so put it to the back of your mind for now. If there are any worse signs - then you may start to worry! Until then - relax a bit.

I had zig zags in my right eye for about 30 minutes a couple of weeks ago.   Havent had any since.  I had some about 30 years ago and was told it was silent migraine then.  Have you had any symptoms since the double vision?  I am on 8 mg now.  Do you think I should put my pred up to see if the head pains go away ?  

Have you told your doctor/eye specialist about that? Or was that why you went to see the optician? Keep them informed about visual symptoms but I wouldn't mess about with your pred dose without discussing it with your doctors. It isn't M&Ms and you do need to treat it with respect. 

Yes, I told my doctor who shrugged it off.  I saw the optician who said my optic nerves looked clear.   i am going to my eye surgeon tomorrow about an unrelated operation I had on my other eye 2years ago.  I will mention it to him as well.  Depending what he says I will go back to my doctor I think, although he has always been keen to get me off pred as fast as possible, but agrees that I should go the slow reduction route now.  I also have muscle pain in my neck and shoulder on the same side.

That is a perfect opportunity to discuss it with an eye expert. I had neck and shoulder pain a lot alongside the PMR - Bowen therapy helped it a lot for me but there was always a bit of muscle tension in the shoulder and neck that never went away - until I had a tooth removed that was obviously affecting my bite and causing the muscle problems! It is all so mixed up sometimes isn't it!

My bite is definitely affected as In the last few years I have had the top two back teeth out on the other side.  So I always have to chew on the side that is having the problems!  I did wonder if it could be TMJ which can cause head and neck and shoulder pain too !!  Perhaps I should see the dentist as well !  Heavens, its never ending isnt it !  Mine is a problem having had the teeth out !    When you had your scalp pain, did it move around a lot ?

No, not really - it just felt really uncomfortable to brush or comb my hair. Some people say it was uncomfortable to put their head on the pillow but I can't remember if I felt that. It's a while back now!

I think its a relief that we have the ability to forget painful times!  Hopefully in a few years this will all be forgotten too !