Trying to do the DSNS...
Posted , 7 users are following.
Hi I have been on 20mg of pred for 3 months. I was feeling pretty good, comparatively speaking! I was told to start to decrease. I started on the DSNS.
I am down to 17.5 and pain is returning to both upper arms and hips.
I hate to go back but I am afraid of the pain as well. Seems like others have had problems with reducing but at a much lower level. Any thoughts?
I also want to thank everyone on this site as I read it daily and it has been such a constant companion...really thank you again!
0 likes, 13 replies
EileenH ddelaquila
Posted
How long have you been at 17.5mg? You haven't been lifting/carrying things? - though that shouldn't affect your hips. Did they check your blood markers, ESR and CRP?
Have they checked you for anything else? You might find this interesting:
https://academic.oup.com/rheumatology/article/56/4/506/2631560
It isn't an easy read - but the images in Fig 1 are clear enough. Some people have a large vessel vasculitis in the arteries in their trunk and that may take more pred and a while to clear - and that will affect biceps and hips more.
After 3 months you should be ready to reduce - Maybe go back to 20mg, let it settle and just do 1mg at a time - it sounds slow I know, but it isn't when it works.
doni89057 EileenH
Posted
That's a very interesting article, Eileen, and could explain some of the PMR patients who just aren't responding well to the typical 15mg start dose and reduction. You are a wealth of information and I thank you for that.
EileenH doni89057
Posted
One of the author's is my rheumy now! Very useful contact!!!
Yes, I think you are right - although I responded like magic in 6 hours to 15mg and all the other evidence suggests I have something overlapping - some PMR symptoms and some GCA symptoms. There really doesn't seem to be rhyme nor reason to some of it.
ptolemy EileenH
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ddelaquila EileenH
Posted
EileenH ddelaquila
Posted
EileenH ptolemy
Posted
I don't know - we (the charity patient representatives) did fight to get it lower but had to be satisfied with 50, it was higher before.
I maintain that it isn't "seen" in younger patients because they aren't looking for it - refuse to do so all too often - and those patients are labelled with fibro, depression, somatism and so on. And because the usual concept about fibro is "nothing to be done" they never discover it isn't fibro. Younger patients seem more likely to have normal blood markers, it is possibly simply a different version of PMR - but given the chance, it responds to pred.
ptolemy EileenH
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Elijo ddelaquila
Posted
I suggest going back to the original dose when you felt good, and don't rush the tapering. We are all different and you no doubt require the 20mg. When you do taper, go real slow, like 1mg. or even 1/2 mg. Good luck!
ddelaquila Elijo
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Elijo ddelaquila
Posted
I myself would wait at least a month or two, even three, before I wold start reducing very SLOWLY! Don't forget, we are all different. I didn't start reducing too soon, and it worked out well I had PMR for 2 1/2 years,
ddelaquila
Posted
Went to 17.5 on 9/7 I believe. It is so hard with the 5mg tablets to cut and record.
So today I did do 20mg and already my arms are better. I did not do any heavy lifting to cause it.
How long would you stay at 20mg now? Half of me just wants to be off but I certainly do not want to go back
to being basically bedridden! Thank you for your quick response!
EileenH ddelaquila
Posted
As Elijo says - you need at least a month to really clear out the existing inflammation, otherwise as soon as you reduce the dose the baseline was so high the symptoms are back. You also need to persuade your doctor to give you 1mg tablets - they are available, others in the USA have had them.
Another way to slow the reduction down is using a slow reduction approach. This is a link to our resources post - lots of reliable links to info and websites - and in the replies you will fine th "Dead Slow and Nearly Stop" approach to reduction. It has worked for a lot of people to get to lower doses without as many problems and it reduces the risk of develop steroid withdrawal pain which is so like a flare you can't tell which is which:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If you have been so bad you were bedridden, bear in mind that your muscles will have weakened very quickly as a result of that. You will take some time to build them back up - and don't rush out to the gym, you need very light exercise at first and building up VERY slowly - if you walk for example, start with 5min out and 5min back, rest the next day and if you had no muscle soreness add a couple of minutes the next day - rinse and repeat.
When I say slow - I mean it! It sounds crackers but Michdonn will tell you it works. He was in a wheelchair at Easter 2017, spent winter 2017/18 teaching children to ski and summer 2018 riding his bike in New Mexico in the mountains where he lives. In the meantime he has reduced from 30mg which was what it required to manage the flare down to well under 10mg.