I have had PMR for 2 1/2 years along with GCA. started out on 60 mg of pred. tried to get off once and had terrible reaction. I was told I had a choice. go back on 60 mg or go totatally blind. I am finally down to 11 mg, and Not without side effects everyime I do a cut back, even at 1 mg at a time. Has anyone else experienceced pain in their heels, jaw and hips and sweats during a cut back? It last for about a week, then I seem to adjust. I have gained 50 pounds and
You seem to have been diagnosed w ith GCA about the same time as me (Feb 2007). Luckily I do not have pmr.
I was given a reduction programme which worked, until I had a 'flare up - twice I may add) but maybe it might help you.
I sitll have a monthly check up on the CRP rate and if it keeps dropping, I take the next drop down - if its steady - I take the next drop - if it has increased, I hold off - tillit gets back to where it was. I also arrange so that for the following four days of taking a drop - I do zilch - it seems to take that time for the body to adjust. Currently I am on 10mg, I have been as low as 7.5mg but the last 'flare' meant back to 40mg, with a faster but steadier drop.
One thing, the pred stand between you and partial or total loss of vision and there is no recovery - once its gone - its gone.
I found that as I reduced the weight began to come slowly off - but it has not all gone away. I have not tried weight watchers as every dietician I have come across - says 'steroids' and just advises eat fresh organically grown food as much as possible, eat pure dairy products. I guess they mean - pesticides are really not a good idea.
Try and 'go with the flow' and listen to your body - if you are angry about the pmr and gca - it really does not help you at all. How do I know, I was angry for quite a while. Once I came to terms with it - I improved and so did the quality of life. Yes, I cannot walk more than two car lengths. Yes, I get tired. But I am still here and reading my books and looking at the sky - life is pretty wonderful if also an up and downer - but then nobody said it would be an easy ride.
Don't even think about fighting a losing battle - you never know - you just might be on to a winner - but talk to weigh watchers and see if they have had any success with long term steroid users before you shell out.
Ms UK
I wonder if the drug your daughter is referring to is LDN, Low Dose Natrelexone. it has been licensed by the FDA for about 20 years - but they are discovering new things about it.
Google LDN.
I would love to give it a shot, but cannot find out if can be taken with pred - and as only pred or metho - keep GCA under control and the last thing I want is to lose part or all of my vision - I am following LDN closely.
Would love to hear what your daughter finds out. Maybe its a different new one.
The NMR Foundation located in USA is also interested and another Foundation dedicated to cause and cure for GCA, located in the Netherlands. So there is hope - however slight.
Spelt LDN wonronlgy should be Natrexalone. I think.
Hi ALL
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