Hi everyone, I have started my second attempt at getting down to zero Pred. I am doing the dead slow and stop method and went without any Pred on Friday. I had 1mg yesterday and 1mg today. The trouble is I feel totally exhausted, I have never felt exhaustion like it.
My question is, is it normal to feel like this after missing 1 tablet?
Thank you, Jenny x
Yes. 0.5mg taper using dsns method would be better. Some people have had to do 0.25mg. hopefully some help coming from a fellow 1mg person.
Hi Poopadoop. I would like to do the 0.5 mg ,but I can't cut the tablets as they are coated ones and there isn't a line in the middle.
Jenny x
You need to ask the Dr for a batch of 1mg uncoated. That way you can cut into 4 if needed. I have never liked alternate day dosing. 0.5mg can make a significant different at 10mg so imagine what removing 1mg for a full day does to your body. I would be at 2mg to get yourself stabilised, then using dsns drop to 1.5mg over the month. Then to 1mg the following month then try 0.5mg the following month. You may find then you need to do say .75mg. Hope you feel a bit better. Head off a flare now.
Uncoated ones seem to be easier for pharmacies to get so you shouldn’t have a problem getting them.
I have the opposite problem. One High Street chemist just used to give me uncoated even although I was prescribed coated and when I queried it they’d just say they couldn’t get it. I changed to another well known High Street pharmacy and they always seem to have problems getting the 1 mg tablets but at least they always tell me they can either give me uncoated there and then or they’ll 'have to try and order coated for me'. I always ask them to order and they always eventually get them although it takes quite a while sometimes. Last week I went in to pick up my next bag of meds to find them saying they had everything. Slightly suspicious, I asked if they had given me the coated 1 mg tabs? Oh yes, she said, last time we had someone ordering them (me I suspect) we ordered a massive amount! I now seem to be managing to train the pharmacy as well as my GP!
But they always have uncoated 1 mg tabs so you shouldn’t have a problem getting them, then you do what DL, Mrs N and Poopadoop have said. Good luck.
What dose did you drop from to 1mg?
Hi Mrs Nails, it was 2mg but had to have a few attempts.
Jenny x
I know you have coated tablets so couldn’t do smaller amount, but as Poopadoop suggests ask for plain uncoated ones.
Whilst you’re waiting go back to 2mg for a week or so, then followed by 0.5mg reductions to 1.5mg - 1mg - 0.5mg - zero using slow taper.
I know it sounds a backward step, but you obviously aren’t ok at the moment - so sorry, but it probably needs to be done!
From experience I would say adrenals are still struggling a bit, so a bit more Pred might be beneficial- and at such low doses there are virtually no side effects.
Very often it takes a couple of attempts to get to zero - and tbh there’s no point getting there if you feel absolute rubbish! (Polite phrase!)
Ah, Jenny, there’s the rub, you are effectively going down by 50% & it’s too big a drop.
You need to cut your 1mgs into half & then consider one of the slow, slow reducing methods, you will find them on the Pinned Posts.
It’s slowly, slowly, slowly now, much slower than you’ve ever reduced before......
Go back to 2mg until you feel more like yourself, then try 0.5mg using the Slow Method of your choice.
Idasmum is having the same issue trying to go from 8mg to 7mg & can’t manage on 7mg so she too is going to try from 8mg to 7.5mg.
Don’t worry about it, the last hurdle is the hardest but you’ll do it & we can support you as much as you need.
Kind Regards
MrsN 🌷
It is a big change on that day so it is possible.
Hi everyone, thank you for listening to me. I have a prescription in the Pharmacy at the moment, so will ask him if he could order me the uncoated ones.
It is no help
having an over zealous Doctor, who stated that he wants me off Pred by the end of August because my blood tests are normal.
To be honest, I don't think he knows the first thing about PMR.
Thank you, Jenny x
Your doc sounds like my rheumatologist. She wants me off the stuff pronto. I have not tried to reduce from 2mg yet, but I will have to soon. I was actually feeling not bad, then I had cortisone shots in both my shoulders. Ultrasound showed they were both seriously messed up. Then I felt like a million bucks for about 5 weeks when I really crashed.
I'm guessing that my adrenals were starting to kick in, then I got a heavy dose of steroid and have to start all over. Hoping 2mg will be a good place for me sometime soon.
As I have said before, you cannot let a doctor bully you. He or she is not feeling what you are feeling. You may want to point this out. Remember this doctor is getting paid on your behalf from taxes you and your fellow citizens are paying. There should be no rush; does this doctor think you are enjoying this illness and being on Prednisone?
Ask this doctor this very question. We have had this discussion on this forum before. You are at the very least a partner in your own treatment, and if this doctor cannot be your partner in treatment, try to find one that can. Just what is he afraid of? Ask that question, and don't be intimidated. Sometimes we have to put the gorilla suit on.
You are doing your best; and I mean absolutely no offense, but it seems to me that a good number of patients in your health care system are too timid. Many Americans are like this too, but less so. Tell him that he is inflicting unnecessary physical and emotional pain on you. And just what does he mean your blood tests are normal. Many people have no inflammatory markers with PMR. I had none until 3 years into this awful disease. You are probably right; doesn't know a thing about PMR.
And blood test results are not always accurate, something I have learned. I have had more than 1 doctor tell me not to use a certain lab, or that they trust this lab over another. And even if your results are indeed normal, that doesn't mean you are not suffering in the tapering of a drug he put you on in the first place.
Speak your mind assertively. It is your body , not his. Seeing that you posted a month ago, what happened?
Best wishes to you.
I have got down to 2mg 3x in 3 yrs. Didnt know about Dead slow method so tried to go from 2mg to 1mg. Instant flare each time. Wish GP or pharmacists knew more to advise of this. I'm stable at 4mg where I'm staying until recovered from hip op then I'll try again using dead slow method. I have a pill cutter at the ready!
I’ve been trying to taper from 2 mg and had one attempt at 1.5 ( ish as I find it very difficult to cut exactly in half and have tried 2 types of pill cutters. Sugggestions welcome!) and had to go back to 2 after 3 weeks though I’m not sure if I have PMR or arthritis now so am trying to figure that out. I’m remaining at 2mg till after my holiday and will try to taper again by .5 mg. I do find it strange that the general view is that there aren’t side effects when on such a low dose but if that was the case I wonder why it is so difficult to get off them?
Sounds like your adrenal system didn't like it
I am also on my third attempt to get to zero. I’ve had pmr for almost 5 yrs and on pred for 4+yrs ( pretty much pain free except for a couple of reduction flares). On my first try, I was off pred for 3 months. The second try, just for 2 weeks.
Last week I decided to go to .5mg after having been on 1 mg for probably 2 months. Yesterday I felt a recognizable ‘niggle’ in my neck and immediately took another .5mg. To my thinking, pmr is probably still there, so is there any sense in continuing? Would there be any accuracy in trying to chop my pills into .75mg?
You aren't heading relentlessly for zero pred - you are looking for the lowest dose that manages the inflammation day to day. That can be as little as 1mg - and your history makes it sound as if you really do have that low a disease activity and sticking at 1mg may be the better way to go.
Sorry, a bit late to this thread. Just to let you know it took me about two years to get to 1.5 from 2.5. I'm currently tapering to 1 mg by doing each stage of DSNS twice over. Seems okay so far. At this rate it will take six months to drop 1 mg!
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