I often advise others on the forum that if they are in pain they should up their medication to compensate. I now find myself in a similar position where I am undecided as to what to do.
As per my discussion last week, I had seen my doctor three weeks ago regarding a rash and he advised that he could not do allergy tests whilst I was on such a high dose, so asked me if I was prepared to drop from 21mg to 10mg in two weeks, this I did by dropping 1 or 2mg per day.
During this time although the pain began to increase the rash and itching had reduced (once below 15mg) and I was advised that the rash was almost certainly hives but would be checked out at my next visit, but in the meantime I should up my dose to a suitable level to control the pain that I was now in.
I have been on 15mg since last Tuesday and feel so much better but my legs feel weak and I have very little energy. The worst part is that my shoulders and arms ache quite a bit until the preds kick in 4 to 5 hours later.
Could this be a reaction to dropping down so quickly and am I still suffering withdrawal or should I up my dosage still further. It seems to be getting worse by the day but could probably live with it for a while but would appreciate your opinions.
If it is getting worse by the day then I would suspect the flare is just really getting going.
I'm not surprised you feel weak and un-energetic - what your doc did was a pretty big insult to your body and I would imagine it will take a while for you to recover. If it really is getting worse and you have no other signs of infections (even a cold) then it may be best to go back to 20mg , at least to see if it improves the pain. If so, work from there.
What time are you taking the pred? The optimal time to take it is at 2am - I know, I know, who wants to set the alarm for then! However, I do know a few people who have gone to the effort and have benefitted a lot from doing so. By catching the inflammation before it even gets started in the morning it seems to allow a dose to achieve more. Certainly, the version of pred I take does that for me, you take it at 10pm, it releases at 2am and the peak in the blood is at 4am, just before the cytokines that cause the inflammation are released into the circulation. I went from 20mg medrol that tooks hours to work to 15mg Lodotra and was so much better right from getting up in the morning.
Were your ESR/CRP guides originally? Did your GP check them? If yes, then he should.
It does seem a very steep drop. My Dr was cutting me down 5mg. a month. He said it was the best way for the body to adapt.
Pred.can cause anxiety/aggression. I am told.
This is true but I would imagine not everyone has those side effects.
Hioe it helps in a small way. X
Hi Eileen, thanks for getting back to me. There are no signs of any other infection, in fact apart from the aches and pains of PMR I feel ok. I am having blood tests etc on Wednesday with the practice nurse and have asked for ESR and CRP as well as the normal liver, kidneys cholesterol and PSA tests that I have yearly, I also want a thyroid (as I have an under active thyroid) and blood/sugar test carried out as well. Whenever I have seen her she has always been very helpful. Hopefully I can hold off from upping my dosage until then so that it does not impact on the results too much.
I will then do as you suggest and go back up to 20mg and go from there.
I usually take my preds after breakfast at around 8am so will see how I go on 20mg and perhaps change my times if 20mg still isn’t enough.
I appreciate your help and advice so a big thank you. I have also been to Lidl again so am converted and am sorry I be-Lidi’d you last week in one of my comments.
Take care and thanks again, Dave (tavidu)
Thanks linda. Doc wanted me down quickly so that he could do some tests for allergies as I had come out in a very itchy rash, hence down so quickly. Thank you for your support.
It's Aldi you need for gin apparently. So the papers said today...
Some people take a sandwich or a yoghurt and a drink to bed with them and wake early and take their pred before settling down for another hour or so to allow it to get to work. The less there is in your stomach of course the quicker you will absorb ordinary white pred tablets (I'm assuming that is what you are on?). And using an electric blanket BEFORE you get up also can help a lot to get moving first thing.
It also occurs to me that dropping the pred so fast could well have upset the hypothalamus/pituitary/adrenal system - and that has an effect on your thyroid activity/hormones too. If you are also on medication for that it could be contributing to your problems - and not just this current one. There is a specialist centre in the NE for chronic fatigue syndrome and similar illnesses where at least one of the consultants, a top man in the field, found his patients did MUCH better when treated as if they were hypothyroid even when their tests didn't show anything untoward. My cousin also requires a higher dose of thyroxine than her bloods suggest to feel well. I wonder if that has anything to do with the highish dose you need. It might be worth discussing with your GP, now he believes you about the PMR!
tavidu has explained why he reduced so fast - but to be honest I would say that reducing by 5mg a month is also far too fast - or do you mean 0.5mg? In PMR under normal circumstances no reduction should be more than 10% of the current dose. You reduce by 5mg at a time in other uses of pred but PMR is very different and you aren't just reducing - you are looking for the lowest dose that will manage the symptoms for longer term use. Going in 5mg steps means you are very likely to miss that end point.
Have you got PMR or GCA? What dose of pred are you on?
The only people I know who reduce at 5mg/month are patients with GCA who are at doses above 30mg. No real PMR expert would tell patients to reduce in 5mg steps below 15mg. Once most patients have been on pred for a few months they would have awful withdrawal pain doing that.
I have Polymyalgia (cant spell it)
I also have emphysema so have to use pred at times xx
Dr and I are trying to keep it at a limit. I hope he is right.
I am on alot of meds for pain. Xx
Ah yes - for COPD and many other things where you need pred you would be put on a dose of pred and then reduce in 5mg steps to zero. That doesn't usually work with PMR, for PMR you almost always need a moderate dose of pred continuously for many months or often years. Many patients need a dose of perhaps 8 or 9mg for quite a long time - the Bristol group recommends keeping patients with PMR at 10mg for at least a year before then reducing 1mg/month to get lower and by doing so reduce the rate of flares to 1 in 5 rather than the 3 in 5 patients that is more usual with other reduction plans.
I do understand why he wants to limit your pred - but reducing like that may mean you end up needing more pred in the long run than a much smaller stepwise reduction.
I have an emergency meds
Antibiotics and 8 x 5mg a day. X
Taking Prednisolone Early Morning
You are quite right Eileen about taking Prednisolone early in the morning. I was diagnosed earlier this year and took your advice and started to get up at 6 am to take my Prednisolone with a yogurt and then go back to bed for another couple of hours and I felt much better earlier in the day. Then one night a couple of months ago I woke at 4 am needing to go to the toilet and so while I was awake I decided to take my Prednisolone then. I couldn't believe how much better I felt the following day but thought it might be a coincidence. Anyway I have carried on getting up at 4 and I now set my alarm clock. Also one morning I opened the fridge and found that my husband had eaten the last yogurt so I just took the Prednisolone with a glass of milk and I have been doing that ever since. I know that I am very lucky because I can manage to fall asleep again when I get back into bed and a lot of people probably are not able to do that but I would certainly recommend anyone to try it. It has made such a difference to me.