reducing pred

Hello! No-one on here will be sick of hearing from you Wendy. My understanding is that the blood tests are not a reliable guide to remission also that anything below 10mg is not doing a lot of harm. It's more to do with your body and how you feel. I think that 1mg every 2 weeks is too fast anyway! Good for you telling your Rheumy that you can't do that. How long have you been on 9mg? 

I expect Eileen or some of the more experienced PMRers will be on here with good advice for you.  They have more knowledge than me. Sheila

Hello Wendy, no one here gets sick of anyone else's ranting. The reason why we rant is because we feel insecure and worried about our condition and all its twists and turns and how the  powers that be still seem to think that recovery of PMR fits into nice little boxes, which we and all the leading experts know is simply not true. I am not medically trained so cannot help you out with anything clinical, but I do know that PMR is an autoimmune condition that causes inflammation of the joints and large muscles. This inflammation in turn causes much pain and stiffness. There are other side effects of the condition too one of them being fatigue. We are given prednisone to reduce the inflammation that will in turn reduce significantly the pain and stiffness. I must ask you do you still suffer from any pain and stiffness, especially when attempting a dose reduction. Because if you don't and the only symptoms that you are still suffering from are fatigue and giddiness, that could very well be the reason why your rheumatologist wants you to come off the prednisone. And maybe the giddiness could be down to another ailment that could be dealt with by taking a different medication.

blood tests, although they are a good indication of inflammation are not always correct and in some patients their blood samples have indicated no inflammation when there most definitely is, so she should no better than to rely on that as her reason to believe that you are in remission.

one thing I will say, is that even if she is right and you are in remission, and your giddiness and fatigue is down to another medical problem, I would defiantly not taper down to zero by 1 mg every  two weeks, is that not a bit drastic, and a far slower tapering of the medication would be more appropriate. Wait for one of the medically qualified contributiors to answer, they will definitely know more than he. In the meantime, all the best, christina 

Hang in there! I am no expert, but agree that reducing 1 mg every two weeks seems very fast. I wonder why she wants you to reduce at that rate?

I am now on 7 mg alternating with 8 every other day. My rheumy told me not to reduce over the holidays, due to increased stresss levels and also, I am at that 7.5-7 level, where the body has to kick start its own cortisol. My blood values are perfect and I feel good, except a little more tired than usual, but that could be due to everything I am doing.

I see her January and we will decide the next steps. (I'll also see an opthalmologist about cataract surgery in January to discuss the eye surgery vis a vis Prednisone). I need cataract surgery and the rheumy does not want me to have it until I am down to 5 mg, so I am eager to come down, but still won't do it any faster than 1/2 mg a month. In fact, as I come down, I may slow it down. Thus far, after 12.5 mgs I have been reducing by alternating new/old every other day. (8/7/8/7/8/7 etc.)

I agree with Sheila that Eileen will have knowledgable words for you.

P.S. I have done the reduction over a period of 4 weeks. This time, it will have been 5 weeks.

No Wendy - not fed up with you but with idiots like her! That is daft - if not possibly a bit risky if you tried it and anything went wrong.

If you are on pred your blood tests SHOULD be in normal range. If they are not then you are probably not on enough pred. There are 2 sorts of remission: clinical remission where you are sign and symptom-free because of medication and full remission where the autoimmune disorder has burnt itself out and, for the moment, is not active and so there is no PMR (in this case). Either way, the results of blood tests should be within normal range - but you can't tell which status you are. Obviously under her concepts I have never had PMR at all - I have never had an abnormal blood test, ever. And I know of a few people who have been fine at very low doses so they were told by their doctor they could stop pred - only for them to have a relapse within a few months. 

No real expert would tell a patient to reduce at that rate without close medical supervision - and I bet she didn't mention that. If you start to feel ill when going below this sort of level of pred then your GP needs to arrange for you to have an adrenal function test. After 4 years on pred at whatever level your adrenal glands will not be working - at present because you are supplying enough artificial corticosteroid for them not to need to produce any cortisol. It can take them up to a year to get back to normal even after getting off pred altogether and you need to tell healthcare professionals that you were on long term pred if you need any treatment for infections or accidents. You won't necessarily be ill but you might and they need to know to watch out for certain things. That is the primary reason for reducing very slowly - at first to more accurately identify the right longer term dose that controls the PMR and then to allow your body to catch up as it gets back to the level where your body has to produce its own cortisol. Some endocrinologists use a different form of corticosteroid to try and persuade the adrenal glands to wake up quicker - but a rheumy probably isn't aware of such niceties.

Is your GP a bit more sensible? If your rheumy is so insistent your PMR has gone then you need not see her again - your GP can supervise the reduction or refer you to an endocrinologist. The GP can do the adrenal function test themselves in terms of taking the blood samples and giving the drug they use except if you are still on pred it often needs an expert to look at the results - it makes a difference. Usually it means spending a morning in an out-patient clinic for it to be done - with a book to pass the time! Some doctors think that you have to get the patient off pred altogether to do it but you don't. It can be done at a dose as high as 10mg and may then need to be repeated when you are down to a lower dose. The expert on this on this forum is Nefret - who has had it done - and I'm sure she will tell you her experiences.

Hello Wardy,

I completely agree with EileenH. Every person is different and the tapering will also be it. I took 40 mg to 7.5 mg of Prednisone in 7 months following by Hydrocortisone 25 mg/day.  For me, this weaning was too fast, I am certain of it. My endo wanted that I decrease Prednisone 2.5 mg / month. Until 15 mg, everything was well. To 15 mg at 12.5 mg, I felt sick so physically as psychologically. I took back by myself  15 mg and everything is back to normal again I thus decided to speak to my endo and tell her  that I could not go down any more 2.5 mg / month. 1.5mg / month, it was the weaning which I could support without becoming sick.

Doctors want so much that their patients take no more Prednisone, that he forget that every patient is different and he will react differently without counting the medical condition of the patient. Recently, my endo spoke to me about PMR. I knew nothing of this condition. I learnt a lot here on this forum. I returned to see her because I had pains for 3 months and my condition degraded. She increased Hydrocortisone to 25 mg at 30 mg. What is not clearly self-important to handle the PMR. By means of my GP, I began to take 15 mg of Prednisone. In 3 days, I did not have pain anymore and I could finally have a quality of life.. All this to tell you that your doctor has to take into account what you tell him and you are the only one to know how you feel and if the weaning is okay.  Tapering of Prednisone is not easy and  it must be made with supervision because a too fast weaning can even bring other problems.  According to the document which I read right here on this forum, the fast weaning can lead directly to a second recurrence of the PMR.  Certain people will have to set of Prednisone longer and others will need a low dose for the rest of their life.

I will ask to see an another endo.  I do not feel confidence with the one I have and I wand a second opinion and find an endo will take what I am saying in consideration.  Do not hesitate to see another doctor or your GP if you do not feel comfortable. The first time  I had to ask to see another doctor it is before my brain surgery tumour. It asked me lot of courage, but I knew that I had chosen the good solution when the medical staff himself told me that I had done well.  Our health belongs to us !!  I hope for you to see your GP and discuss with him.  

Wendy, do please try to get an adrenal function test done.  Go to your GP and cry all over him/her if necessary.  Take someone with you.  Take a big mallet.

The test itself is nothing - tedious in my case as I had to hang round the hospital for a morning and because - in my case - we knew what the result would be anyway.  It was a question of ticking boxes for me so that I could be diagnosed as steroid-dependent.

It consists of a baseline blood test done, then an injection of whatever-it-is that gives the adrenals a jolt (Eileen, I know I know what it is, but I just have a blank on it for some reason).  Following that, hourly bloods will be taken and tested until they say you are free to go.  I had 3 lots done following the injection, some have just one, depends on circumstances and whether you are at the doctors surgery or at the hospital.

In the meantime, give yourself a break and take the amount of Pred that you NEED, not what someone thinks you should have, whoever they may be.  A couple of weeks on a slightly higher dose is nothing in the grand scheme of things and hopefully will help to clear your mind and let you get some semblance of normality back.  And they can't shoot you for it.

Like Eileen, if she had been my doctor I also 'wouldn't have' PMR as my inflammation markers have never ever been raised due to PMR since I began this whole malarkey, and that wasn't yesterday.  You don't have to see her again, you know.  You can ask for referral to a different consultant and that can be wherever you want - it's your choice. 

Take your courage and your will power by the scruff of the neck and beat them down.  Here's to you having a better 2015 in every way.  Merry Christmas!