Coming off pred
Posted , 11 users are following.
hi all I was told to reduce pred 1 mg a month, every thing seemed ok when I was on 2mg a month. At the beginning of this month down to 1 mg, since then have suffered all the pain back again feeling sick all the time, no appetite. It really feels like it was when I was supposedly misdiagnosed. Any help would be gratefully received. I will be contacting the Dr tomorrow to see if this is withdrawal symptoms and how long does it go on for.
0 likes, 32 replies
Michdonn kathleen21605
Posted
Hi Kathleen, I am at 5 just holding at this point. I will start my next DSNS taper from 5 to 4.5 mg probably next week. The taper cycle will take 54 days, then I will stay at 4.5 mg for awhile letting my body adjust before starting the next taper cycle to 4 mg. I am a very active positive thinking, PMR pain free, year old with a smile . Taking very slow and easy!
EileenH kathleen21605
Posted
You are never reducing relentlessly to zero - you are tapering the dose of pred to find the lowest dose that manages the inflammation that is produced every morning as long as the underlying autoimmune cause of the symptoms we call PMR lasts. It is what is called "self-limiting" which means that at some point this autoimmune part will burn out and go into remission so it no longer attacks the body but that only rarely happens in less than 2 years and the median time pred is required for is just under 6 years. If you are lucky that dose is in low single figures but everyone is different in the way they respond to pred and how much they need. But it does nothing about the illness itself, nothing is available that does, all they can do is manage the symptoms by mopping up the inflammation that causes them.
Obviously for you 2mg was enough - 1mg is not. As well as the PMR aspect, the expert advice is that no reduction during a taper should be more than 10% of the current dose to minimise the effect of steroid withdrawal. Unfortunately that can appear very similar to the disorder for which you are taking the pred in the first place and it is difficult to tell which is which. Steroid withdrawal is your body protesting at the removal of the amount of pred it was used to. It starts as soon as you change the dose and then, if you are lucky, it improves over the following 2-3 weeks as your body gets used to the new dose. It may not though and you continue to feel really unwell. Dropping from 2 to 1 is a change of 50% - it is difficult to do less than 25% of course but there are other ways of reducing but changing the dose on just one day and going back to the usual dose for a few days, continuing like that getting the days with the lower dose closer together until you are on the new lower dose every day.
Whichever it is for you - you need to go back to 2mg, get to a stage where you feel OK again and then start a new slower taper towards 1mg. And you also need to get your GP to order a synacthen test to check your adrenal glands are able to take up the production of cortisol again - because it has been found in a recent study that poor adrenal function is far more common amongst PMR patients than had been thought. It doesn't mean they won't recover - but it may be harder than is commonly accepted. The symptoms you describe could fit with that too.
richard07199 EileenH
Posted
"because it has been found in a recent study that poor adrenal function is far more common amongst PMR patients than had been thought. It doesn't mean they won't recover - but it may be harder than is commonly accepted."
Hi Eileen
I read that same tech abstract, but I didnt get the same message that you read in it. Their conclusion was that approx 50% of people using pred for a long period of time have adrenal damage as a result. I dont remember reading that the damage eventually repairs. I took it that the adrenal injury was permanent. Please tell me that I am misunderstanding what the researchers reported!
EileenH richard07199
Posted
They probably didn't follow up long enough to be able to say one way or the other at present - as is usual they do say more work is required,. I spoke to a rheumy colleague who provided a lot of the data and that was what I gathered from her. Maybe I haven't understood her correctly - but I would have thought over a much longer time results could be better. And the original diagnosis and referral was not ideal either - there may be a lot of patients who had more minor problems but still got function back without ever being referred to the endocrinologist.
Many doctors think you can just reduce slowly and the adrenal function will return in 90+% of patients without any trouble. This work suggests it is far fewer - but there must be a potential for improving the final figures by going about it the right way. One can always hope.
kathleen21605
Posted
you are all so kind answering me .I have just had a call from the Dr so will be going today. I will speak about a synacthen test . My last bloods in Feb came back ok so I was told. I can't say I felt ok on 2mg but it was better than now with the pain,loss of appetite and feeling sick. will let you know outcome of Drs visit. I have been on pred since August 2017 so quite a while. Rheumatologist said reduce 1mg a month til zero. no appointment through yet. Unfortunately they can't feel your pain. thanks again.
Silver49 kathleen21605
Posted
I am hovering around the 2/ 1.5 mgs stage and I am finding it is finely balanced for me at this stage. I seem to be ok at 2mgs but uncertain at 1.5. I would not drop 1mg and only drop .5mg . I would find it too much because that's a big drop when it's so low. It does sound as though you have passed your optimum dose.
wendy64238 kathleen21605
Posted
Hi Kathleen. I got down to 1mg by doing the DSNS method but I have had to go back up to 2mg. I have been on this dose for a few months now and I do not feel like I can go back down yet
Silver49 wendy64238
Posted
I seem to be a bit stuck at 2mgs having twice tried to get to 1.5. I am trying 1.5 again. Part of the problem may be that I don't do less but am often doing more!! I can't find a time that I'm doing little.
Anhaga Silver49
Posted
I can't get back to 1.5 where I was briefly nearly two years ago. I think 2 was probably where I should have stopped then, and where I need to stay right now, much as I'd like to be off pred and letting my adrenal glands recover. Oh well. At least it is a very low dose, an inexpensive medication and minimal other side effects, adrenal suppression probably now my worst.
Michdonn Anhaga
Posted
Anhaga, is that even try to taper using DSNS method?
Silver49 Anhaga
Posted
I think I'm probably the same, Anhaga, but I'm going to give it one more try and if it's not the right time I'll stick with 2 for a while. I was at 1.5, also briefly, two years ago but tried again so now tried it twice. I'll try to remember to let you know if I succeed this time but I'll not beat myself up if I don't!
Anhaga Michdonn
Posted
Yes, I have used that method ever since I was at 10 mg. It got me down to this low range, but here I've stuck.
Michdonn Anhaga
Posted
Hi Anhaga, i thought you had! Now what try a 1/4 pill? I have not tried that yet. i am stable on 5 , but need to go to 4.5. i start next week i think, skiing season is off. Good luck, think positive. 🙂 and smile.
Anhaga Michdonn
Posted
I believe I have to accept that for now I need what I need. I'm just barely on the cusp of feeling okay when at 2, Maybe when all the stress of moving and company coming are over, and warm weather is here....
Michdonn Anhaga
Posted
Hang in there Anhaga, you can live nicely on 2mg for some time, with no damage to your body, to speak of. I don't have that article anymore, changed cellphones. Get yourself stabilized with no PMR pain before thinking of reducing again. Good to talk to you again. The warm weather and peace and quiet will help. 🙂