Good morning, Please will you give me some time to vent my frustration. I know so many of you will have probably encountered a similar problem with your medication...
I've had PMR for 7 years and during this time have been taking Pred. daily. Initially I was on 25ml amd gradually over several years was able to reduce to 7.5ml which was the level my Rheumatologist wanted me to achieve. In January this year I was admitted to hospital with trochanteric bursitis and my Pred was increased to 25ml which I was given over 5 days. After I was discharged I was told to reduce the Pred to 15ml over 4 days then continue on 7.5ml until seen by my GP. Unfortunately in May I developed a nasty chest infection whilst on holiday. My son took me to his local clinic to see a doctor. Once again my Pred was increased to 25ml for 5 days reducing as before. A month ago I was seen by my Rheumatologist who advised me to keep on 7.5ml for 6weeks reducing to 6ml for 6 weeks and continue until I was able to 'come off' Pred, but the problem I've had since this initial reduction has been increased pain in my neck shoulders and hips, and also my balance when walking. My knee is still very swollen and painful as I can't straighten my leg due to a swelling at the back of the knee and at the end of the day I have odema in my foot and ankle.
I feel as though I'm going backwards, and not in control of my body, as every day has become a challenge to me when it comes to walking, especially balance...I'm beginning to feel like a yo-yo! Until 2008 when I was diagnosed with PMR I used to teach exercise and dance, I played tennis and golf and at the good age of 77 had enjoyed good health that is until now. I really don't sit about or feel sorry for myself, quite the opposite. I feel so lucky, but my frustration is not being able to see any progress with my condition. I'm a member of my local PMR group which is so supportive and I get involved and do all I can to help them as well as myself. I'm due to see my doctor this afternoon so hope he or she is able to offer some help and advice.....thank you for listening.
In the first instance, you might be wise to increase back to 7.5 if you were comfortable at that dose previously. If that works, stay there for a few weeks and then try a very small reduction of just half a mg to 7mg next time around. You are around the level where your adrenal glands will be trying to kick in with their own natural steroid (cortisol) production after having been suppressed by the long term artificial steroids. It is very common to experience problems around this dose - if you reduce too quickly and by too large an amount, you will have a shortfall of cortisol in your body leading to a possible return of symptoms.
I experienced problems with my balance and found Nordic walking with poles helped tremendously. I found details through Age UK, so perhaps you could contact them in the first instance.
I also joined a Tai Chi/Qi Gong class - another exercise form which can help to restore your balance as well as having a whole host of other benefits.
Totally agree with Celtic - good advice as always.
It's so dispiriting to be constantly yo-yoing up and down. Would also suggest, if you aren't already, trying the slow method of reducing, I find it much better than trying to do an "overnight" drop, even when just dropping 0.5mg at a time. I find a slow reduction doesn't give your body a jolt. It may seem long-winded to start with, but if it makes life easier, which I find it does, then why not try. Hope things improve for you.
Thank you for your good advice, I'm going to start reducing using the slow method as you suggest. You say it may seem long winded but if it works it would be wonderful to enjoy a day without so much discomfort. I'll certainly let you know how I get on
We are so lucky......
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