Dead stop nearly slow--need help please
Posted , 14 users are following.
i was down to 5 mg. pred on the dead slow and nearly stop method, doing ok. But when I tried to go to 4 mg., my symptoms started to return so I went back up to 5 mg. for 10 days and recovered back to where I was doing ok again. This morning I took 4 1/2 mg. Here are my questions, I'm hoping someone can help please: 1) should I have stayed at 5 mg. for a full 30 days to continue to let my body adjust or was it ok to go down to 4 1/2 mg like I did because I was feeling ok? 2) if it's ok to go on the dsns method, do I go back on it now (meaning tomorrow I will go back up to 5 mg.) or should I stay at 4 1/2 mg. to see if I can tolerate it? Thanks!
0 likes, 31 replies
Mrs.Mac-Canada Twopies
Posted
Hi Twopies,
it seems to get tricky when you get to around 4mg!! I have had PMR for 4 1/2 years and managed to get to 4mg using the DSNS method (actually even slower than that at times). I was at 4mg for over 6 months and feeling good so decided to try 3.5. THAT DID NOT WORK!! I got to week 3 and it started. I let it go too long not knowing if it was withdrawal or aflare and by the time I decided to increase I ended up trying 5mg, 7mg, 10mg and finally hit it with 15mg where I stayed for about 3 days till the symptoms were basically back to where they were at 4mg. At first I was so upset because I had visions of the long road back but I managed over a couple of weeks to drop back to 5mg and after a failed attempt at 4mg I decided it was 5mg that worked for me. I am still there after 3 months and because I will be doing some travelling soon have decided to stay at 5mg till I settle down again.
My goal is not to get to zero, although that would be awesome, but to be at the lowest dose that will allow me to do the things I want to do (mostly).
I hope you get to your "best" dose soon. As frustrating as PMR is, patience is the key,
Hugs,
Diana🌸
Reeceregan Twopies
Posted
I'm up for general advice from anyone here on this topic, and Eileen you have been my pillar of strength on nearly every discussion I follow, bless you, and you partly know my history already. This is quite overwhelming but SO helpful. I've only been on pred (50mg) for 9 weeks now, for both PRM and GCA, and my rheumy has just started to decrease. He has dropped me to 37.5mg for two weeks, then 35, 30 each for two weeks, then 25 for a month. This will take approx 3 months, Then review. Eileen had said in a previous discussion that this was an odd reduction plan and quite large increments at a time....and from this discussion that is certainly the case. It's only been a week on 37.5, yes I'm handling it, (somewhat), as I have back disc issues I'm also babysitting.I had noticed in previous discussions reference to DSNS and wondered what that meant...now I know, but the reductions here are minor to what he has me doing, I just hope I can handle his plan. if I can't and I'm on say 30 or even the 25, and I find the pain returns to a level of intolerance, should I just increase up an increment, and if so for how long? For example, on 30, need to increase to 35...how long should I take 35 before I increase to 37.5 if the 35 is too low? Just a few days, or should one day at 35, the next at 37.5 and then back to 50 or stay a few days on each? The lowest dose tablet on my script is a 5 mg so I cut that in half to give me 2.5mg. I could increase more slowly between the 37.5 and 50 if I wanted to. On saying all this...I'm hoping I won't need to increase but just in case...knowledge is power I always say.
EileenH Reeceregan
Posted
It is especially the drop from 50 to 35 that is strange - very big, then 37.5 to 35 is good - but then why not do 32.5 on the way to 30 and 27.5 on the way to 25? The lower you get, the more likely you are to meet a problem by having got to the dose you are looking for.
Any time symptoms return at a new dose go straight back to the last one, you shouldn't need to go right back to 50mg. That is a very high dose unless you had visual symptoms, 40mg is much more usual starting dose for non-complicated GCA. Slow increases rarely work well - better is to simply add 5mg to where the flare starts. Once the original symptoms are under control a flare is far more likley to be due to reducing too far - that is why smaller steps are better and spending at least 2 weeks on each new dose is advisable to be sure it is still enough. This isn't a race - trying to go too fast often results in a flare and having to go up to a higher dose - so you lose the apparent advantage of going faster.
Reeceregan EileenH
Posted
Thanks Eileen. Yes, I did have visual symptoms which started pre diagnosis, that's why the big dosage. Dropping eye lid, silver streak in left eye, blurred vision in left eye (still have that even though I have new and stronger glasses now) and the permanent headache with the sore scalp. That's why the big initial dose, the concern was no one could pinpoint how long I may have had GCA. Only have blurred vision left eye now. GP did initially try 3 days at 50 then 2 days at 25, " rinse and reapeat" 😂 But on those 25mg days sypmptoms increased. 6 weeks after seeing GP I had the first rhuemy appointment and he kept me on 50 daily while I had the round of artery biopsy, eye specialist, vascular surgeon etc then 2 weeks later on next visit started the reduction. As much as I'd love to get off these preds, I am not in a hurry to experience the relapse and pain I had initially from the PMR so happy to do the snails pace. I asked the rheumatologist what should I do if the symptoms returned on a lower dose and he just said increase again but not by how much or for how long, so again your help is invaluable. Thank you.
EileenH Reeceregan
Posted
"GP did initially try 3 days at 50 then 2 days at 25, " rinse and reapeat""
What a bizarre approach - when all you have to do is google "GCA treatment" and get sensible guidelines for starting at least. Dr Quick and Prof Kirwan wrote a paper aimed at GPs to help them diagnose and manage both PMR and GCA which does have a realistic reduction scheme. Even the international recommendations are better than that - you would leave the patient at 50mg for a month, then a month at 40mg. It isn't surprising the symptoms increased on 25mg days. And if he suspected GCA it should be treated as a medical emergency - like a stroke or heart attack which, after all, it resembles in that the damage is caused by the stoppage of blood flow to an organ/nerve cells. Would they wait 6 weeks for a cardiology appointment for an acute heart attack?
Reeceregan EileenH
Posted
I hear what you're saying. GP wrote the referral for the rheumatologist but I had to make the appointment. When you ring, the secretary gives you first available( and doesn't see what's written on the referral either as it's done over the phone)....he was pretty booked out, so the GP doesnt actually know how long before you see your specialist. He probably thought I'd be in a lot sooner. First feedback he gets is after the first rhueumy appointment and he's been away. He has Parkinson's and a daughter in Sydney with Lupus and a son and grandies in America....he only works 3 days a week and travels extensively., and he's been away all of July and August...comes back 24th and I have an appointment then for the flu shots. I really prefer to see him whenever possible, he's been my GP for 38 years but when he's away I see another Dr at the same practice but when I saw this other dr after the biopsy he wasn't as knowledgeable on PMR/GCA as my normal GP seemed to be. And of course they won't do anything once you're under the care of the rheumatologist...he runs the ship. I will take the reduction slowly, slowly..certainly not in a hurry to relapse God forbide. 😩