Months ago, I had a flare and raised my pred to 12.5. I stayed at 12.5 for weeks because of some cataract surgery I was going through. Finally, based on the good advice I got here, I tapered from 12.5 to 10 using the DSNS 38-day taper. At the very end of my taper, I suddenly had the return of a bad case of sciatica. My rheumy said I should stay on 10 mp pred for two weeks before starting to taper again. So I'm FINALLY done with the two weeks and my PMR seems to be under control.
The rheumy wants me to drop down to 9 mg immediately, but now I know better than that! I've been thinking of dropping from 10 to 9 using the DSNS 38-day taper again since it worked so well before. Does this sound like a good idea? Of course I'd love to taper faster, but I haven't had much luck with sudden tapering before.
Sorry to bother you all with my never-ending tapering process. It seems like I'll never get down to a low amount of pred. But you have helped me so much and I think I'm avoiding some of the mistakes I made earlier.
Thanks again!
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judyb100
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Hi. I used the DSNS and have been Pred free for a year now. But is was a very slow process but I’m happy I did it that way as for me it really worked and I managed to get Into and stay in the zero club.
It is difficult to advise because we are all different.
Using the DSNS method, with slight variation to suit how I felt from 15mg downward I did 1mg drops From 7mg downwards I did 0.5mg drops.
I think the important thing is listen to your body, if you feel a drop has been a bit too much, just hold on that for a while until you feel ready to drop again. Slowly slowly is the key. Good luck x
Hi, How long did you have PMR? I’m 10 months into having it and have slowly tapered from 15mg to 8, but seem to be kind of stuck there. When I slowly drop to 7.5mg, pains start and my sleeping becomes disrupted, and I feel very out of sorts. I’m wondering if I’m going too low too soon? Thanks in advance. Sue
Hi. I don’t have PMR “just” GCA. I started at 60mg and it took me 2 years 8 months to come off Pred completely
In my experience when you get to 8mg it becomes tougher. The adrenal gland would normally make on average 7.5mg Cortisol but Pred makes the adrenal glands stop producing Cortisol. So in effect they have to kick start and wake up to start producing again. That’s why most people hit a hurdle at your stage
Talk to your Rheumy but if it was me I would stick at 8mg for a while, until I felt good everyday with no pain and then carry on very very slowly with 0.5mg drops.
It maybe that the pain and sleep disruption is just a hurdle you have to bear with for a while until your Adrenal start kicking in. It is difficult sometimes to tell the difference between PMR/GCA pain and Pred withdrawal pain. Just listen to your body.
If after a drop you have pain. If it lasts 3 or 4 days it’s probably withdrawal but if it lasts longer then you probably need to go back up to your last feel good dose
Thank you so much for your reply, it means a lot that you have told me about your experience, much appreciated. It’s a tough journey, but this forum is such a lifeline. Thanks again. Xx
Hi it took 2 years and 8 months ... had a few scary hiccups along the road... but I got there. And yes, the key is to arm yourself with good knowledge (there is a lot of rubbish on the internet) and listen to your body. You know what feels right for you, you have to be strong but don’t push it. Don’t rush. You will get there x. Good luck x
If you struggled with faster before - I wouldn't risk it. The 38-day taper is not much slower than your rheumy telling you to drop 1mg overnight - but far more likely to work without you feeling yuk at some point.
Totally off the subject--you had to stay at 12.5 pred for weeks because of your cataract surgery? I thought cataract surgery was a breeze--yet you couldn't reduce pred for weeks after? Did it cause the PMR symptoms to get worse? I'll be having it in a couple years, hadn't read before about PMR upswings. Thanks!
No need to - unless you are particularly stressed about it. But there’s no need to be / it’s a very quick simple procedure, just a little weird! Not painful at all.
The worst bit is the hanging about beforehand waiting for the eye drops to take effect.
Well I’ve suffered with it for so long, it was impacting on everyday life, so something had to be done! Hoping a bit more short term pain will give long term no pain!
My cataracts ready to come out but ophthalmologist won’t put me on waiting list till I’m at 4 max, ideally off them. Think I’ll be off driving for some time as currently on 8!!
Fortunately, or unfortunately, whichever way you look at it, mine deteriorated quite quickly.
Plus as you know only one eye anyway, recently widowed, lived on my own so really needed to be able to drive and get out for my own mental health, and it had got to stage where optician could do no more with new lenses.
Thanks, will try and stress the importance of driving when I see him again in October as we pick up our grandchild from nursery (usually hubby) but he doesn’t know that!
The ophthalmology dept here is part of the medical School and highly regarded. Suspect they are paranoid over infection risks as that is what he kept saying. Would have to travel a distance to go elsewhere but will see what he says next time.
In fact I do understand the surgeons’ worries over pred. The last thing they want is infection and a slow healing wound. Some people on pred will be better candidates than others.
I think they look at the type of person and how they will recover, so it is not just the pred, but smoking, obesity etc etc. Some people may find a surgeon easily while someone with exactly the same requirement may find it difficult. Operate on the positive people and think twice about the negative ones.
I live in the U.S., so our rules are probably different. My ophthalmologist wasn't concerned that I was on 12.5 mg of pred. My surgery went very well and my vision is incredibly improved.
The cataract surgery is a breeze. I've had so much trouble with flares that I was afraid of bringing one on with the surgery. Also I was still feeling twinges of PMR even at 12.5 mp, so I decided to wait. With hindsight I probably didn't have to stay at 12.5 so long.
But I can't say enough about my new vision! It is so wonderful!
Thanks. If only I'd taken your advice earlier, I probably wouldn't have had several flares. From now on, I'm going to try much harder to listen to my body.
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