Hi Everyone, I was on here a couple of weeks ago and told quite firmly to increase my pred and think about the DSNS tapering method. I had rising CPR level at 4mg after tapering from 20mg since last December. Since then I increased the pred to 5 for a couple of days and then went to 4.5mgs for a few days, a 4mg day and back to 4.5mgs for several days. I have no pain, just slight stiffness in shoulder and thigh muscles, as you might have after exercise. Tomorrow I’m starting the DSNS method because this morning my stiffness was minimal. So 4mgs and back to 4.5mgs for 5 days, 4mgs and then 4 days at 4.5mgs etc. Once I get to the stage of a further reduction, i.e. 3.5mgs, if all is going well I will have the blood test to check my CPR level. Does all of that sound OK? I notice that Dorsetlady seems to be the main voice of expertise here, just wondering what your story is? Thanks everyone, I have learnt more here than from anywhere else, I’ve sacked my rheumatologist and working with my GP, to whom I have given the DSNS plan.
PMR: Trying DSNS: Hi Everyone, I was on here a... - PMRGCAuk
PMR: Trying DSNS
Hi LemonZest
If you go on to Dorset Lady’s Profile you’ll be able to read her story & how she worked out a good Tapering Schedule for herself & has since shared it with many, it is now on our Pinned Posts with a couple more.
Kind Regards
MrsN
Good Luck with your Tapering 🍀
Thank you. I think the DSNS is hers? I’m hopeful of a positive outcome, now that I have drawn on all my patience and given up the idea of a quick turnaround.
It takes a long while to accept that, l used to do Reducing Schedules on the iPad in Excel & ‘knew’ when l’d be off 😂 Prednisolone, Experience is a Bitter Teacher! I’m currently trying to get from 12.5mg to 12mg
Kind Regards
MesN
You sound like me!! Haha. Good luck. I am so fortunate to be a bit further down the track but really, I am frustrated at the slowness of the taper down from 5. I feel reassured by this group that my bones wont break and my teeth wont fall out, but there are definitely side-effects that I don’t like, such as brain fuzz!!! Anyway, lovely talking to you.
Don't forget PMR comes with its own brain fuzz. It's not always the pred.
I don’t know that ... I thought it came with the pred.
You can get some but before I was diagnosed I thought I was getting early onset dementia because I couldn't concentrate, I couldn't remember words and could barely finish a sentence without forgetting the end of it. This brain fog comes up a bit. It sort of runs into pred head at higher doses. I am hoping they both go completely one day .....if I get really tired physically or mentally I just get fogged again.
Oh and if course at 5mg you start to run into the adrenal haze if you overdo it. I am at 6. Can't get down to 5mg at all yet as pmr flares.
Oh you poor thing ... I think there comes a sense of “the end” once you get to 5, or at least for me there was. But then I hit the old wall. The brain haze thing has only come with pred. It is less now but it was really bad at around 12. We were travelling, no pain at all but I just didn’t know what day it was or were I was going. Couldn’t get my head around the cities. But it cleared up once I got down a bit. But I still get fazed and sometimes light headed. I hope this will completely disappear eventually because, like you, I thought it might have been dementia.
By the way, I’m watching the cricket at the moment, from Downunder!! Very exciting!
I could barely watch at the end. Very exciting!!! I am shattered after that. Time for a lay down.
Both can cause it!
Poops, let's not forget that brain fuzz can also come with 'auld age' 😂
I was 55 at DX so was worried.....always said my body is 20yrs older than my chronological age!!😁
I have had the opposite problem. Always looked and felt young for my age, so the last few years where I've caught up and probably gone past my chronological age has been supremely depressing. I am always being taken off guard by that stranger in the mirror or, worse, the old woman in the family snapshot!
Yes. There's always that moment.
aint that the truth!!!!
Actually she developed Dorset lady's simple taper which is slightly different from DSNS which originated some years ago with a Swedish gentleman who had trouble getting off pred, and subsequently refined by others, particularly PMRpro. The thing to remember about all these plans is you can adjust and tweak to suit yourself. We are all different! I personally am immensely grateful to DL and Pro and several others for their expertise and great compassion.
Not it’s not, it’s PMRpro’s. Mine is DorsetLady’s simple taper - See link -
healthunlocked.com/pmrgcauk...
Oh that looks good, a week earlier than the DS taper. A bit torn, not sure which one to attempt. Think I’ll go with yours because you sound like the expert on PMR!! Thanks.
There are quite a few other DSNS plans here - steroidtaper.azurewebsites....
DorsetLady's plan is there too
Need to keep remembering PMR leaves when it wants, not when we want. I had it for 6 years when GCA then reared it’s head, maybe because I wanted to taper quicker than my symptoms were telling me I should? Lesson learned!
Speed isn't everything - it is what works best for you.
DSNS is mine, developed by me with the help of a few others on a different forum some 9 or 10 years ago who tried it out and was on the basis of a system used by a Swedish gentleman who couldn't get below 5mg until he spread the change of dose over several days.
DL has a different version - some think it is simpler, the DSNS approach is better if you want to slow it down even further or go a bit faster if you can.
When it comes to GCA I would agree DL is the expert - however, I don't think she had PMR symptoms. I have had PMR only, work with a research group and a few rheumies on PMR.
No I’m not the main voice of expertise - just one of them. But I guess you could say I’m pretty knowledgeable about GCA.
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