PMR with large vessel variant? Remission/reducing Pred?
Posted , 7 users are following.
Hello. I pleased to have found this forum.
I am new to this. diagnosed in march, Pred 40mgs and started to get 'symptoms' back when down at 12.5/10 mgs. I am curious to know what you class as 'remission' and at what level people stop reducing and move back up to previous dose? ie I now have stiff hands/knee joints till mid day which I have not had previously! I wonder if it is better to go above ie 15mgs and follow the 'dead slow' method or do I ignor relatively 'annoying' smptoms and just carry on? Do you include ESR & CRP levels in your decission?
LVV? not really sure how symptoms differ from ordinary PMR? perhaps its just a bit more vigerous
Anyone out there with vigerous palpitations and arrythmias, don't depair, mine stopped after I got below 20mgs Pred'.
thanks in anticipation
0 likes, 23 replies
Nefret Guest
Posted
Remission to me means that you have no symptoms and are steroid-free. In short back to 'normal' albeit at a greater age than when you first started. I'm sure others will come in with their versions of 'remission'.
If you are having symptoms returning, that would indicate to me that your current dose is just not enough to contain the inflammation and you might be better off at a slightly higher dose to really stamp it out before thinking about reducing again.
Large vessel variant here is Giant Cell Arteritis but without temporal artery involvement.. If you were started at 40mg, that is the usual starting dose for GCA (that's me) and the difference is indicated in the labels - PMR is muscles, GCA is arteries.
Guest Nefret
Posted
Nefret Guest
Posted
For those patients whose inflammation markers mirror their symptoms yes, they can be used as additional guidance. For the 20% or so of patients who never have raised markers it's a case of relying on symptoms alone.
Like many other conditions PMR needs to be 'managed' as much by the patient as by the meds. A single day 'off colour' would send me into 'rest' mode whereas an obvious return of familiar symptoms would be an indication that the current steroid level is not enough to contain the inflammation.
jean39702 Guest
Posted
Marchbrown, you posted this on another thread. I thought it best to respond on this one....
" Hello Jean, It sounds like you have the same as me?
Have been told 'Large vessel Variant' and likewise I am fortunate not to have temporal involment. (but do have one sided tinitus!)
Your info re withdrawal/flares is v helpful. Am wondering whether you aslo use blood results in deciding the dose? .. in my case I started on 40mgs in Feb, am now on 12mgs and think I have a flare for last 2/52, waking with stiff hands/knees. My ESR has fallen back to normal (2) I gather this is a more 'long term' indicator compared to the CRP which had gone up! (8) would value your experience/opinion. thanks"
....My blood markers were very high on diagnoses, both ESR and CRP. Since then they have varied to greatly I honestly don't know what's "normal" for me. Although, after 2 1/2 years I may be figuring it out. However, I can't rely on blood markers as a major determining factor.
As others will say, it's all about the symptoms and managing them with the level of prednisone reguired to control the inflammation. It's taken me this long to come down from 40 mg to 11.5 with 2 flares along the way, and I may be in the process of having yet another one!!
It took me a while to find and absorb all the information on the forums, but the first important thing I learned was never to reduce more than 10% at any one time.
maid_mariane Guest
Posted
You are very fortunate to get down as low as you have without a flare till now. Ive been on prednisone since September 2015 and have only reduced 5mg. I use the drop dead slow or slower and can only reduce by 0.5mg at a time.
As much as I'm slow you maybe taking it to fast and your inflammation has caught up with you.
You may want to go back were you felt good and stabalize for a couple of weeks or more rhen try reducing using the drop dead slow method and no more than 10% or less.
I'm sure Eileen will say much the same.
Guest maid_mariane
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maid_mariane Guest
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This is a wonderful site with copious amounts of information and help.
The one thing that wasn't mentioned since i don't know your sex is that it seems that men can drop faster than women. My male friend with PMR has dropped rapidly in a short period of time but you still need to stabalize to allow the adrenal glands to kick in.
Guest maid_mariane
Posted
thanks, am begining to see the sense in that. my specialist nurse has said to cont' for a month (am waking with stiff hands and knees till mid day) on 12mgs. my symptoms arn't awful so I guess I should follow his advice but perhaps you all think to go back up even with slight symptoms?
I certainly intend to follow the 'dead slow' method from now on.
Thanks for all this helpful info
ps have revealed my self as Clare age 63 !
maid_mariane Guest
Posted
Sorry Clare
A major brain fog moment, off course your female.lol😕
I'm just Mariane
Anhaga maid_mariane
Posted
Don't fret - she changed her name! I didn't know one could do that, actually....
Anhaga Guest
Posted
If you are at 12 mg and haven't been there very long, try sticking it out for few days to see if the symptoms decrease. If they don't or if they get worse it's likely to be PMR pain. If they begin to improve it's steroid withdrawal, caused by too rapid a drop. Even tapering at a very slow pace I experience minor steroid withdrawal pain. This is why the dead slow method is so helpful. It gives you a chance to determine whether any discomfort is return of disease symptoms or simply steroid withdrawal. I have tapered successfully to 3 mg, and hoping shortly to reach 2.5. Every time there has been a point where I wondered whether I could continue, and every time by the time I'd finished the taper I felt as good as, or even better, than I had at the beginning. This, however, is my second attempt to taper to 2.5, so I now know when PMR may be stirring, and what to look for. In my case it was the return of some symptoms I hadn't had since the beginning of pred/PMR journey. But this second time so far things are going well. I just needed more time and some extra of my alternative treatment. No doubt it will get increasing ly difficult the smaller the dose, and the lower each step. Or maybe this is as low as I'll get for a while.
Guest Anhaga
Posted
so helpful...thanks. interestingly I was discussing inflamatory markers with a GP friend. The ESR is helpful at giving you an up to date 'picture' whereas the CRP lags a bit behind. although I have mod discomfort (hand grip weak etc) my ESR has fallen right back to normal levels (which might be a sign of improvement) while the CRP has gone up a bit ! It will be interesting to see what bloods show in about 2/52 (without going to 15mgs) and see whether or not I should have increased my dose.
Shall we have a sweep stake?
I am wondering if the rest of you get your bloods done when you are unsure about titrating dose? Obviously within reason and not too often.
I shall keep you posted.
PS I realised my name/ attempt at being annonymous not the best idea...Marchbrown being a very good dry fly for catching trout ! sorry for confusion !
Anhaga Guest
Posted
No need to apologise. I assume the little picture (from my computer log-in) which without my permission appeared with my ID when I signed up indicates I'm female as I don't suppose most men would choose a little Michelangelo angel!
EileenH Guest
Posted
Bloods don't always track the symptoms - for some people they never get raised at all but there are also people whose bloods were raised at diagnosis, fall with pred and then remain low as long as they are taking pred. The most important criterion is freedom from symptoms - the ESR and CRP are both affected by other things - a cold will send ESR up and a chest infection can have a dramatic effect on CRP for example. A return of symptoms should signal an increase in dose - a raised blood test not necessarily. It should be repeated to see if there is a trend.
To answer your original question (I never got a notification and have only just found your post) remission comes in two forms. You can achieve remission in the sense of freedom from symptoms because of the management with pred. True, full remission comes when the underlying cause of the symptoms we call PMR, an autoimmune disorder, has burnt out and is no longer causing symptoms.
Guest EileenH
Posted
thanks again. you are full of useful info. will do as I'm told first and raise this with my nurse specialist next week. I rather feel you are right though and will need to up my dose again soon. had a bike ride yesterday and symptoms a bit worse today, wondeing if this is connected. I do get one sided tinitus from about a year before I developed pmr, I wonder if you have any thoughts on that too? guessing co-incidence
EileenH Guest
Posted
Oh yes - overdo any exercise and PMR will come back to bite! Your muscles remain intolerant of acture exercise - the underlying autoimmune disorder is causing damage that means the effects of exercise don't heal as quickly as normal. It doesn't mean DON'T it means start small and build up very slowly.
I also had tinnitus with my PMR - the consensus seems to be that I probably have PMR+, a degree of LVV affecting other arteries. I also had jaw claudication for some time and scalp pain for a very short period but it disappeared on its own. The tinnitus and jaw pain also disappeared after I had been on 15mg pred for a few months. So no, I don't think it is coincidence.
Guest EileenH
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EileenH Guest
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Did he?
Anhaga EileenH
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Apparently he used the acronym, KBO as a sign-off. Which I didn't know until today. Thanks, Clare!
Guest EileenH
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EileenH Anhaga
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Guest Anhaga
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you got it...my mother's favourite saying!
Guest Anhaga
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I'm sure v appropriate !
On a good note, my blood tests have come back showing ESR trend is static at 2 and CRP now 6 from 7 so I guess I should stay at 12mgs for a month and then follow the dead slow plan. Glad I held back as nearly put myself back up to 15mgs.
Goodluck with the 2.5...fingers crossed all round