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5mg and Going Down!

Posted , 8 users are following.

Mr._A
Mr._A

Well here I am back at 5mg again (for the second time) and just had the results of my blood test, ESR of 5, (although it doesn’t feel much like it on some days!) so my doctor says I can very cautiously start to reduce again.

Since I have been reducing from below 10mg I have been using the method of 2 days on the current dose and one day on the lower one for about 10 days, then current and low on alternate days for about 10 days, then one current and two lower for 10 days so it takes about a month to reduce fully to the next dose. This seems to work well for me so far, but it was below the 5mg that I ran into trouble last time.

I am keeping up the Nordic Walking and can still manage 3 miles on a good day, but can sometimes struggle with about 1 mile on a bad one but I always try to do some, I think that exercise is very important when on steroids.

I have been keeping a log of my progress (or lack of it!). At the end of each day I record the dose of Pred along with an estimate of the PMR pain on a scale of 1 to 10, with 10 being at the level just before started the steroids, and 1 being pain free. This is quite difficult to estimate as the pain moves around, so I take 4 readings, shoulders (always the worst), neck, arms and legs, and then take an average of all 4 readings. The data is all plotted on a graph using and XL spreadsheet. I did try to attach a copy to this posting in jpeg format but is was so small it was meaningless, but if any other members are interested they can send me a message and I will e-mail it to them. Also if anyone has kept any similar data themselves I would be most interested to compare notes.

Many thanks to all of you on this site, it is mine of information.

Mr. A

0 likes, 20 replies

20 Replies

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  • Mrs_G
    Mrs_G

    Posted

    Hello Mr A sorry to hear you are in such pain You dont mention your CRP ??? When I first had PMR in 2002 it was always just my CRP that was raised and my Doctor went on my CRP levels as quite often my ESR would be 2-3 This bout of PMR my ESR and CRP have both been raised Since I strarted this new bout in 2008 I have read more about PMR as it has not been such a smooth ride this time and I note that a lot more Doctors are now taking notice of CRP and I think from memory Canada has done some studies on it I record all my bloods and try and see at what level I feel OK but I need ( and my Doctor is happy with ) when I am below 5 on both though I know a lot of -people seem OK on a lot higher levels I hope you get something sorted with your Dr and dont have to increase your steroids as I unfotunately have had to
  • Mr._A
    Mr._A

    Posted

    Hello Mrs. G

    My Doctor has never asked for a CRP test. Perhaps I will mention it to her next time. My original ESR was 34 before I started on the Pred but has been between 2 and 7 since.

  • Linda_Williams
    Linda_Williams

    Posted

    Hello Mr A

    Sorry you are in such pain. I have had PMR for about two years and have only ever had raised ESR. For quite some time my levels have not been raised although I was still in pain my doctor said levels are not necessarily raised and it does not mean PMR has gone. I have been fairly pain free for last two months and I am now on 4 mg reducing in the last month from 5mg so keeping my fingers crossed. I think the answer is as Ragner said below 5mg go very very slowly. I will stay on 4mg for another month before I think of reducing further.

    Hope the pain goes it will be interesting to see what your consultant has to say.

    Linda

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello again Mr A and sorry to hear that your pain isn't improving in spite of good blood test results.

    As you will have read from the postings by Mrs G and Linda, we all react differently and it gets very confusing. However, it does seem in your case as though your flare-up has possibly arisen because of your very rapid reduction from 5 to 3.5, and perhaps when you see the Dr next week he/she will recommend that you go back up to 5 for a couple of weeks to let your adrenal glands catch up and if the pain subsides then reduce to 4.5 and 4 etc as outlined in our earlier posts. From my experience if you ignore the pain for too long then it will mean going up to an even higher dose. Do hope the pain eases for you in the meantime.

    MrsO

  • Mr._A
    Mr._A

    Posted

    Thank you all for your advice. I have decided to go back up to 5mg until my visit to the doctor on Feb 23rd. I had my first 5 this morning so we will see what happens.

    Many thanks again for all the advice.

    Mr.A

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