I posted on here recently that I was seeing another rheumatologist for second opinion....(today) Eileen kindly gave me a name recommended to her by someone, when I asked for that.....
I saw him this morning....well, he is debating weather I have ever had PMR (5 years) and that the steroids are giving me all the symptoms I have at present....He has told me from the 1st of Jan to cut down from 10.5mg at a rate of 1mg EVERY WEEK....till I see him the first week of February, and MUST be down to 5mg....to which I will be tested (cortisol) I told him I want xmas over before I start, to which he had to agree!...I told him about how much pain I get when lowering, but he said slow method makes things worse!....he wants to see what I`m like by lowering quickly........
I said what will be the alternative treatment, he said it certainly won`t be DMARDS.....they are worse than steroids....(that one I will agree on)
He then gave me a paper to see if I would agree to research on Vasculitis....methinks this is what he thinks I have, but he said until you are off steroids I can`t diagnose you properly!!....
I told him I split the dose.....very wrong he said....affects the adrenals! 8am is the correct time to take steroids...all in one go!
I felt like I had been hit by a brick being told to lower so quickly, and according to him, have done nothing right!........but don`t think how I`m feeling I have a choice....
I`m sure there will opinions about this....I welcome your replies!
Well actually - the 8am timing for pred is for short-term use of pred but we'll let him off as I doubt he has read the paper recently (if at all!). And it has no real effect at all when you are still at 10mg. When the body is taking above about 8mg of pred the body does not need to make ANY of its own steroid and it doesn't. At about 8mg (slightly different for everyone) it has to make some and the lower the dose, the more it needs to make. The research that established the 8am time to take pred showed that taking 5mg at night suppresses the adrenals more than 15mg taken in the morning - but that was only over a short time, a few weeks at most. Once you have been on pred at above 10mg for a few months then the adrenals are suppressed anyway. But we won't argue with him!
He's right in that to see what is going on her needs to see you without pred - and reducing relatively fast won't be comfortable but it will be a short sharp nasty rather than a long drawn out one.
Is there anything on the paper about the research? Mind you - PMR is generally accepted as being a vasculitis...
Hi linda. All I can say is good luck. I for one would not trust any rheumy going by what I have read on this forum so I stay clear of them. To reduce so quickly even if you do not have PMR to me seems dangerous as you have been on steroids for so long and to suggest that a slow method actually makes things worse I feel is ridiculous. If this were the case why did he agree to let you wait until after Christmas. I wish you all the luck in the world but please approach this with care and I will be interested in seeing what others think of this. Good luck.
I think down to 5mg she'll be OK, albeit will feel fairly rubbish but she won't be at any real risk. He's testing her at 5mg - which is what he should do.
Thanks Eileen thats good to hear. I remember when my doctor got me to drop to below 10mg from 20mg in 2 weeks, I felt terrible. Hope you and hubby are both well.
The information sheet that the rheumie gave me is from Uni of Oxford....(DCVAS ) whatever that means....It says the prupose of the "study" is to develop new diagnostic and classification criteria for different types of primary vasculitis.....
It is several pages of what would happen if I agree...eg, blood tests/urine samples/DNA ....Research co-ordinator is Dr Ravi Suppiah, Nuffield Orthopaedic Centre.
If it did result in me having vasculitis, what would be the treatment I wonder
Forgot to mention in my posting that the rheumie did mention, Refractory (?) Polymyalgia?? but said it is extremely rare....expect you have heard of it....Thank You...
Not too bad thanks - we have wonderful weather with wall to wall sun which helps. I've had a load of the usual "checks" which are all fine. His are not so happy - raised liver enzymes so he's been told to go on the wagon for a while Not a lot of sympathy from this end I'm afraid, I did say... And he has a vit D level of 7 - yes, 7!!!! Despite never going out in the sun with sunscreen and spending the requisite time out there So I handed him my tub from H&B and suggested he started on them...
Yes - doesn't get much of a mention! I probably have it after over 12 years...
It will be VERY interesting to hear what they decide to do. I wonder if you might get offered tocilizumab - it is being suggested as a possible option for refractory PMR in the USA.
Other than all this - what do you feel about the rheumy? He does sound rather more interested than your previous one!
Glad things are ok. Give him my regards and enjoy your sunshine. Have a good Christmas and all the very best. Can't wait to get our Turkey from Lidl next week. Dave
My daughter was detailed to ask if we could get turkey here - if so, her husband would agree to coming here for xmas if she ever gets xmas off!!!! We have a Lidl - but I doubt they do turkey and xmas pud. Suppose I could go lok for turkey...
Hi Linda I too was diagnozed with PMR 2 years ago and was immediately put on steroids by my GP. Of course 2 weeks later when I saw the rheumy I was feeling much better and all bloods were normal. There was a huge push to get off steroids by both doctors I thiink partially because I still had pain and some of the pain was in my hands feet and wrists. I have tried every approved Fibro drug the latest being cymbalta and none of them worked for pain releif. In Feb 2016 I switched from rheumy who wanted me to take methotrexate to new rheumy who advised me I dont have PMR. She advised I have some kind of Arthritis????? That was in June. Between June and Sept I tried reducing the slow way and had all the usual withdrawl symptoms nausea urinary frequency fatigue more pain but managed to go from 5mg to zero. When i got to 1mg I just quit. So basically now Im pretty much have all the pain of pre Pred dry eyes and cataracts. In truth reducing fast was better in the sence that it was painful but quick. If I were you I would clear your life of all events and commitments and do the reduction to try and get a diagnosis. Best of luck to you. Joanne
"partially because I still had pain and some of the pain was in my hands feet and wrists"
It is VERY unusual for patients to become totally pain-free - not least because it is pretty unusual to have pure PMR without a few add-ons such as myofascial pain syndrome and so on!
And PMR can affect hands and feet - Leeds rheumatologists have done a study that shows it is quite common. I had horrendous foot pain, tendonitis and synovitis in fingers and hip bursitis. 15mg of pred achieved a miracle in mobility in 6 hours - but the foot and bursitis pain took months to fade, though fade they did eventually.
If I'm having a flare my fingers will hurt and I have developed hip bursitis a couple of times - now my rheumy-trained GP gives me a steroid shot and that's it, sorted. And the myofascial pain syndrome stuff resurfaces every so often, usually if there is a flare, but if that is sorted, the rest responds to far less oral pred.
The Leeds group are considering whether PMR is managed much better if you use targeted treatment for things that could be done separately.
Interesting you ask that, because he was VERY different from the last one inasmuch I could actually ask a question!!...I was rather nervous I think at first in case it was (we all stick together here) and wouldn`t like the fact I wanted another opinion.....but I didn`t feel that.
I appreciated that he wanted me down to 5mg to make a proper diagnosis....but felt quite choked at the thought of what`s to come.....
My family and friends have said to me in the last year that I seemed worse not better, and more or less, why aren`t the steroids doing it for you?
When I said are you going to offer me DMARDS, and the reply was, no, they are worse than steroids....that made me smile, because other rheumie wanted me on them, didn`t like it when I refused...
The drug Tocilizumab, I see is for RA (which my sister has, told him that) and other Arthritis conditions.....so maybe.....but yes, it will interesting to see what happens first week in Feb when I go back to see him....I will post on here......
In the meantime, think I will regard my fast lowering as akin to childbirth.....no pain with out gain!!
I think that is a fair summation! As long as it is as productive!
It does seem that there is a growing push amongst rheumies for PMR patients to see them at least once - but of course the trouble is it takes so long and most patients wouldn't accept months of pain while waiting. I didn't enjoy my 5 years and I wouldn't go back given the option but it wasn't actually unbearable.
Warmth and resting a lot will help - if it IS PMR. And make sure you have plenty of back-up for January.
I really am looking forward to hearing his verdict and approach. And don't be scared to ask questions - explain you have been left in the dark up to now and not listened to. The patients knows their own body best and what you can't do/take is important.
Thank you Eileen (and other replies on here) have a good Christmas yourselves, I will try to enjoy my next two weeks....I almost feel like I have been given a sentence to start after xmas, without doing a crime!....
Hi Linda, thanks for your reply. Yes this was the post I read, I can see the rheumies objective, to get you below 5 mg to check your bloods and confirm PMR, but like my GP they have no concept of the pain, the immobility and the sleepless nights we would have to through. Surely there must be a better way of checking diagnosis?
As I said I will continue my gradual reduction, hoping to get to a safer level of preds before my first 12 months on steroids.
Hi, I have had PMR for 19 months and am now down to 1/2 mg every other day. I feel fine as far as PMR pain but people need to realize that the withdrawal symptoms of Prednisone is terrible!! Just google it and you will see a list of symptoms. After this week I will be taking 1/2 mg every two days and see how it goes. They recommend taking ibuprofen for the withdrawal pain which can last for months!!! Good luck to you.
Thank you Sharon......yes, I know what I`m in for, and people are saying "be positive" well, can`t repeat what I would like to reply!
At the moment I`m battling a chest infection, which GP suspects is pneumonia.....so lots of anti-biotics.....think December/January are going to be months that I will remember!
I thought we shouldn`t take anti-inflammmatories with pred?.....
Keep well......and hopefully have a painfree xmas!!
This is exactly the reason we keep plugging the "Dead Slow and nearly stop" approach - which has allowed many people to reduce WITHOUT severe withdrawal symptoms. If you do it slowly enough it makes a massive difference.