PMR flair or adrenal problems?
Posted , 10 users are following.
Dear all. I am back for a quick question. I still have no diagnosis yet, but are trying to taper off pred., How do I know if symptoms, like fatigue and headache in the morning, light pain in arms and legs and weakness in joints are due to tapering pred. or flair of the underlying disease (could still be PMR) ? All symptoms feel exactly like before I started taking pred. but in a very light version. It seems to start
3-5 days after I start the lower does. I have need on 15 mg since august 2019, and with a few ups and down I am down to 11,25 mg in the evening.
0 likes, 10 replies
EileenH krillemy
Posted
It does depend on whether they improve after that few days - if they improve it was your body adjusting, if they get worse it may be whatever it is you have flaring up due to more inflammation. Adrenal problems shouldn't be a factor for most people until well under 10mg.
However, if you have to get off the pred for the doctor's information you are likely to have to suffer such episodes at some time. Reducing to get off pred doesn't come under the same heading as tapering to find the right dose.
krillemy EileenH
Posted
Yes, I see the difference - I do need to get off pred completely if possible - have you any advice on a schedule?
EileenH krillemy
Posted
You could try the DSNS approach with 2.5mg steps and over a few weeks - it will soften the blow of the change of dose. Say start at 1 day new dose, 3 or 4 days old dose. The doctors just want you off it, they won't care how you feel. they don't think it is PMR. If it weren't pred and adrenal function has to be considered they'd just have stopped it.
krillemy EileenH
Posted
It sounds like a good fast plan, but could you please explain the DSNS approach - I do not fully get it?
Day 1 10 mg
Day 2
Day 3
Day 4
Day 5
....
.....
EileenH krillemy
Posted
Day 1 10mg
Days 2-4 (i.e 3 days) 12,5mg
Day 5 10mg
Days 6 and 7 (i.e. 2 days) 12.5mg
Day 8 10mg
Day 9 12.5mg
Day 10 10mg
Day 11 12,5mg
Days 12-13 10mg
Day 14 12.5mg
At that stage you can probably go to every day 10mg. If at any time it feels too fast you can add days of the old dose between the days of new dose. Does that make sense?
TonChe krillemy
Posted
Did your GP tell you why he/she thinks it may not be PMR? Reason I'm asking is that 5 months seems a long time to be on Pred without a diagnosis. Usually in the absence of any other positive tests (i had plenty), the PMR diagnosis is made on the basis of symptoms plus a response to 15 or 20mg of Pred alone.
Presumably you did respond to the initial 15mg otherwise you would have been quickly tapered off it with a week or so before your adrenals went to sleep? If i was you i would press your Dr on this. Also even if your blood inflammation tests were within normal range, this does not mean you don't have PMR as around 30% of PMR cases have normal ESR & CRP levels - mine were and i was still diagnosed with PMR.
With the holiday season coming up, you may find you can't get travel insurance without a formal diagnosis too.
EileenH TonChe
Posted
Luckily here in mainland Europe they have different criteria for insurance - mine has never demanded a diagnosis, you are just not covered for things you have had hospital in-patient treatment in the past (usually) 6 months. But you DO pay rather more for it than in the UK.
krillemy TonChe
Posted
Yes, I was given pred by my GP in the absence of any other positive tests like MS, ALS (MND), AR, Polymyocitis, cancer og Lyme done by different doctors. It had a fantastic effect, but it did not work so well after a few months (maybe a flair). The diagnosis was overruled by a Rheumatologist (and a second), because I have muscle athropy in my thighs and upper arms. But only in the front. I also have twitches in arms and legs and trunk. I am back in neurology with a EMG next week, and I will fight for a Lyme disease treatment no matter what their tests say. I do get bitten every year be ticks. If there is no neurological issue, I will be referred to a specialised hospital unit for Rheumatology and inflammation. It´s been almost 2 years!
ptolemy krillemy
Posted
I thought Lyme's disease could be successfully diagnosed with the ELISA test. Also taking pred if you have Lyme's disease can be a problem as pred is an immuno suppressant allowing the Borrelia to grow.
krillemy ptolemy
Posted
Lyme disease is not so easy, but it does depend on who you ask. They only in DK test for one type of borrelia (antibodies), however there are at least 4 types. Along is also the vira from ticks, like TBE. But you are right if it is an infection like borrelia, pred is not good. That is why I am trying to come off as soon as possible, although still being able to function. The fact that I am no worse after 5 months on an immuno suppresant is a sign I guess that it is not an infection. Anyway EMG test next week will tell more - I vote for a serum negative autoimmune disease like PMR if not Lyme 😃