Hi I am new here. Balance problems. Does anyone have problems with their balance?

I have had PMR/Gca for a year now. Starting at 30mg and then 60mg due to the gca. I am currently having a flare up and after reducing to 12 /1/2 mg. I am now back to 40mg. I now have problems with my balance and have to walk with two stick's when outside. Has anyone else had this problem?

21 Replies

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  • Hi Sorop,

    Firstly I would say going from 60mg down to 12.5mg in a year was a trifle optimistic, no wonder you had a flare - much too quick. Take the reductions a bit slower this time, no mater what you doctor may want.

    As for your balance, if you're unbalanced because your legs are unsteady then that is fairly normal maybe because you've gone back up to 40mg, and will go in time as you reduce again. If you're unbalanced because of your head then that could be related to the GCA, and think it would be wise to get it checked.

    Please let us know how you get on.

  • Thank you so much for your reply. I will certainly be more careful with tapering. I followed my rheumy advice and was doing so well till 15mg when I had 2 consequtive uti infections at the same time as reducing.

    I was happy to be able to come down as I now have steroid induced diabetes, Cushing Syndrome to the point of friends not recognising me and severe genital shingles casing nerve damage. It is difficult seeing steroids as my friend which is keeping me going but must learn from this experience and be patient. No point in yo yo ing in the long term.

    I will certainly have the balance issue checked.

    Thank you again for your help.

  • Cutting carbs may well help that - I lost 35lbs of Cushingoid weight. I was in hospital 5 years ago and top of the diagnosis list when I was discharged was "Cushingoid". I did a few weeks of the Michael Mosely 5:2 diet and then cut carbs drastically. The weight went slowly but surely. Cutting carbs also reduces the steroid-induced diabetes aspect - fewer carbs, less raised blood sugar.

    There are a lot of people on the forum who will back me up on this.

  • Thank you for that advice particularly re diabetes. I have not put on pounds it has just redistributed itself to my neck , shoulders and tummy I have now spindles for arms and legs I look like Humpty Dumpty!

    As you are so helpful could you also tell me what nomal crp levels should be, mine are in the 20's at the moment?

  • Depends on the units used - either less than 10 or less than 1 is usually taken as normal. Sometimes they give different figures but either way a CRP in the 20s is high.

    Yes, I gained weight because of undiagnosed PMR and inactivity. When I started on pred I didn't gain more but it redistributed to the usual places. Then when I lost the weight I went back to more like normal - but I have never had the thin arms and legs. I wish...

  • Thank you PMR pro. I have been recording my results and comparing and interestingly the last time my cpr was below 10 was in January when I was on 40mg which is what I have just had to go back to after getting down to 12 1/2 and had a flare. I had bloods done today it will be interesting to see what they are now.

    Can't thank you enough for sharing your knowledge and shining a light on new aspects of this journey.

  • I have had this symptom on my higher doses of Prednisalone. Not as bad as you but I have never been on a GCA dose. It is a Pred side effect that recedes when we reduce our dose. I would still mention it to the doctor though. I would recommend a slow reduction, the body likes it much better.

  • Thank you it is reassuring to hear that it will probably improve as I reduce the steroids. I will reduce slower this time too. I'm 74 and want to make the most of every day so impatient to get back to"nomal "! I am always thinking about the impact on my husband as it has curbed his activities too as I have been unable to do very much.

    Hope you are doing well.

  • A lot of people have balance problems - and there is currently a study on-going about ears being involved in PMR and GCA for patients in the UK. It is for both PMR and GCA patients.

    healthunlocked.com/pmrgcauk....

    and please scroll down to the final reply at the very bottom of the page.

    Some years ago some ladies with GCA/PMR and balance problems participated in an AgeUK sponsored Nordic Walking course. All found their balance and walking improved as a result of using the two walking poles - even the one who needed a zimmer frame! So maybe using walking poles might help you more than walking sticks - which don't really encourage a natural walking style.

    How ever much we want to be off pred reducing too fast only leads in the long run to taking even more! And another useful point is: never reduce if you have an infection or any sign of returning symptoms. A week here or there is not much in the great scheme of things - and may save months.

  • Hello. Thank you for your post. I will certainly try some walking poles. My husband has mentioned before that he would like some so we could walk together.

    I realise now I should not have tried to reduce at the same time as I had infections and I had also just changed from Mtx oral to self injection as I was having diarrhea. That has definitely helped with that problem. This has been a costly learning curve!

    Thank you also for the link with regard hearing problems I will follow that up.

  • I felt six sheets to the wind on 40mg. However, I am also of a mind that this condition affects the ear because I had worsening motion sickness in the car over the last year which as miraculously been cured.

  • I wear a hearing aid and had my ears tested two weeks ago and there was wax in one ear so was advised to put oil drops in daily and if that does not clear it have it syringed. The trouble with pmr/gca is so much is going on and so many medication side effects we do not know what causes what. Glad your motion sickness has bee n cured.

  • No, and it's after the event with hindsight that it's clearer, but that's no good when one is in panic mode.

    Impacted wax won't help with balance either.

  • Snazzy: You have done the research bit haven't you? I wish I could - but I'm not in the UK.

  • Sorry to be dense but, what do you mean?

  • The second part of the "ears in GCA/PMR" study - the link is in my post above.

  • healthunlocked.com/pmrgcauk....

    right at the bottom for the new bit. This was easier to find than the new post.

  • No, I didn't have anything to do with this.

  • No - I'm asking if you have joined in!!!!!!! We need about 500 patients - without everyone joining in, it will be a waste of NHS money! We helped fund the pilot study - now the NHS is taking it further because it is obviously significant.

    Proof that ears, in terms of both hearing and balance issues, are involved in GCA (and possibly PMR if what is causing the PMR is a mild expression of GCA) will be used to change the diagnosis criteria. It has been mentioned in the past but there are many doctors who will tell you hearing problems are nothing to do with your GCA - OH YES THEY VERY POSSIBLY ARE!!!!!!

  • Oh! Duh. I've just signed up. I have to be honest I saw a date as a year ago and thought it was too late, so didn't read it properly.

  • Long story - a new post was put up and it lead to a fuss. I shall post it again perhaps...

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