PMR Relapse

I am getting relief at 14mg pred whereas I had little relief at 10mg.....relapse came when I tried to reduce too quickly....

Hi Eileen ,

thankyou for replying.  I just checked myofascial pain syndrome, and i dont think it is that.  this flare symptoms are so alike all my previous flare ups.  I have always started on one leg first, and almost always on the Left leg, from heel to buttock , and across the pelvic area, and generally the shoulder blades feel achy and heavy.  I dont know what triggered this flare up , could it be the long holiday (it was very challenging!) ? and why did it suddenly flare up when I had been stable at 10mgs the last 3-4 months.?   The question is whether i should take a big jump to 15mgs or 12.5 mgs to curb this pain and then wean down again??  i am just so despondent with this pain from PMR !! it s like a yo yo , got better, got worse,   What do you all suggest.!

thank you.

Many people find their PMR is less noticeable while on a holiday for all sorts of reasons. The weather is different, the food is different, the beds are different, you have the excitement of the holiday itself so if you do overdo it you notice that less - until you are imprisoned in a plane seat for hours, cart your luggage through the airport and get home to the washig machine.

I am also fairly sure now that there is a big link between PMR and MPS - I'm not the only person have experienced that a PMR flare bites at our weak points and if you have MPS as a feature of PMR, that is what shows first. Problems in one leg from heel to buttock shouts sciatic nerve - due to low back problems which then spread all over the back. It may not be the case for you - but it would fit for me. That's all I was suggesting.

Hello Mrs Hobbs

 Is it not harmful to go such a big jump to 30 from 10mgs?   And if I do for say 5 days on high dose 30mgs,  do I wean down slowly or just go straight back to 10 mgs after the 5 days high dose?   is your recommendation  regime like: -  eg.

30mgs - 5 days,  25mgs - 5days - 20 mgs 5 days -  15 mgs - 5 days...   ... until i get down to 10mg and stay there ?? 

Let me know whether that is how you wean down your pred. 

thank you.

 

I'd say Mrs Hobbes method is a bit unorthodox, and a system which has worked well for her.  I would never have used it because I wouldn't want to be bouncing the dosage up and down like that.  See my other post for an alternative method.

You don't wean up or down, you take say 30mg each day for 5 days and then drop back down to 10mg. When it's a short duration you don't get any side effects like you would over a longer duration. Doctors often prescribe 5 days of steroids for someone with say a chest infection. It's just a suggestion, rather than wasting time trying 12 and then 15 etc, I just feel a short quick hit would work quickly. I don't know if it's recommended to do this repeatedly but I find it works for me!

It isn't recommended to do it on a regular basis as you are doing - apart from anything else, the few days you are at that very much higher dose you are taking far more than spending a month or two more at a 1mg higher dose so you aren't REALLY achieving much. It is the total accumulated dose the doctors are interested in - and you soon rack it up if you use such high doses regularly. It is still a risk for the unseen side effects if they apply to you (reduction in bone density etc). 

The other side is that quite often yoyo-ing the dose leads to more difficulty reducing later. Everyone is different of course.

Doctors do use high doses like that for chest infections yes - but generally for people with other pulmonary problems such as COPD or asthma where their inhaled steroids haven't been effective enough.

hi there Anhaga

thank you for the link.  do you suggest i could go up to 15mg (from 10mg that I am on now) for a week and then wean down using the dead slow method.  I had used the Dead slow method before, and it was succesful, but then this unexpected flare up!  after i ve been stable at 10 mgs for 3 months !   what a pain !

thank you anyway.

this is a great forum, i find solace here for my misery!

Many times over the past few months I've read here that an increase of 5 mg to deal with a flare is actually recommended.  I'm afraid I can't remember what they say about how long one should stay at that increased dose - assuming it has had the desired effect.  I'm sure someone will be along soon with more information.  I do think, however, that if it helps one has to wean fairly slowly in order to stop at the place which keeps the pain in check and not go too low.  It may be quite close to where you are now, but you don't want to go past it and get another flare.

It very much depends what caused the flare. If it was from overshooting the right dose a bit and the symptoms resurfacing then 2 or 3 days at +5 would plenty usually and you can drop straight back to the dose you were last good at. OTOH, if you either overshot by a lot due to reducing in far too big steps OR if you left it a long time before giving in and admitting it was a flare it might take longer and you might have to go back to a lower dose more carefuly.

And the final scenario is that the activity of the underlying disorder has increased without you changing the dose - and that is what it sounds has happened here - in which case you might have to be very careful with reducing as you were at first.

Hello Eileen

Thank you for the reply.  I always value your advice.   Just some querries - hwhat do you mean by overshooting the right dose ?  When i was stable at 10mgs last 2-3 months, i still get the occassional ache, but i can carry on with life without problems.  Now , could it be the case that one could get to a 'right ' dose and just dont get any pain or ache at all, or should we always be expecting some degress of ache /pain without affecting our daily lives?   what i am saying is , can we expect to be totally 'pain free' ?   My pain always starts on the LEFT leg, from heel to buttock and across, then sometimes it goes across the shoulder.  In the early  day, it had been bi-lateral , but all the subsequent pain always start and stay on he LEFT side .  I can only describe it as being , cramp like, spasm and throbbing, and it comes in waves, when the pain comes, it stops me from doing anything, all i wanted to do is to sit until it passes. !! it is vry debilitating. I am a fairly active person, this pain is quite relentless, and it does get me down, even though i am quite an optimistic person.

Shall i go to 15mgs for say 5-7 days, and wean down slowly, or just drop back down to 10mgs as I was before.  I seem to be Yo yo ing with this up and down dosage.   I've been signed off by the rheumatologist, and my GP is not that familiar with PMR.   Anyway, thanks for your help and all on this forum, it is comforting to know that i can get advice from. 

 

Whatever result you get with your starting dose is really what you then look for as you reduce - you want the lowest dose that gives the same result as that starting dose, in terms of the PMR at least.

The more you say, the more I think you probably do have a low back muscle problem that is causing a back muscle to spasm, trap the sciatic nerve and cause what you feel - that is exactly how mine will present. The most likely is the piriformis - it causes buttock pain and affects the sciatic nerve. Once it starts building up you change your posture - and that then spreads to other back muscles in an attempt to compensate.

You could try 15mg and see if it really does help - and dropping back to 12.5mg shouldn't be too difficult. Then slower to find what dose you need NOW, it may be  higher.

But I would look for a physio or sports massage therapist and ask their advice too.