Diagnosed with PMR in dec 2014, I have been struggling to get below 10 mg ever since making my rheumy very purse-lipped. She tried me on methotrexate which gave me tummy troubles, rashes and hair loss (and I had a flare whilst on it) so I refused to go on with it. I told her I would try the DSNS and explained how it works, she is appalled by the time it would take to get to lower doses.
I got down from 11 to 10 mg but last week had an almighty flare and have had to go to 14 to get any relief from it. Now I do not know what to do...do I stay there or go back to what I was on before, 10mg, or try to get down slowly??
By the way, thanks to all those who have recommended Double-base Gel, it is a great help for thinning skin problems
She may be appalled at the slowness - but even it won't let you go below the dose you need and you'd probably have a had a big flare earlier with her ideas!
Were you using the DSNS way? How long had you been on 10mg and were you fine on that? Are your symptoms gone now? If you are sure that 11mg was enough there is no reason why you shouldn't go back to 11 straight from 14 if you have only been at 14 for a few days. Then start slowly again.
You have only been on pred for just over a year - and she has messed you about. It took me a couple of years to get below 9mg after my rheumy put me on a 6 week taper of 15/10/5 each for 2 weeks and stop which of course caused a mega-flare until I could get more pred. I was fine at 5mg (as far as I could tell in that short time at least) but it took nearly 4 years to get that low again.
Have you any idea what may have cause the flare? Had you done something? Have you got a cold? Been under stress?
Yes I was using DSNS, I was on 11 in November after a flare in October and just in the last stages of reaching 10. Symptoms pretty well gone now, it is about 10 days since I was on 10, I am nervous of going back to 10 or 11 it seems a big jump, I was feeling so ill with the flare! No this time I couldn't think of anything that could cause it, that's what is so upsetting!! It pleases itself it seems.
Thank you so much PMRpro for your interest and advice
It does please itself - accepting that is a big step to managing it well!
Why not try 1mg every few days to get back to 11? Of course, there is no way of knowing how long the activity of the flare will go on so even that may not work. I had a major flare last January and it was a few months before I could reduce at all - I'd had to go back to 15mg from 5mg. I'd got to 7mg fairly happily a few weeks ago - and had a week's trip to the UK for a funeral, driving every day for 6 days. I have very sore muscles and the bases of my thumbs were killing me. It isn't really a flare because that was all - but 10mg has made a big difference. Is it the higher dose or the time? And it is bitterly cold too - barely above freezing during the day and -15C in the morning! I think perhaps warmth might help...
Yes warmth does make a big difference, I even wondered whether my flare was due to continual high humidity, 97%+ for day after day. I will try dropping 1 every few days as you suggest, if only we know what was going on, is the pred masking a can of worms, or has the wretched thing died down??
I find high humidity worse than what you might call "normal" cold - as long as it is dry heat or dry cold it is definitely better.
I suppose technically the pred IS masking the can of worms - all it does is manage the symptoms - but I do get what you mean. A definitive way of monitoring things would be awfully nice!
Hello manjan, sorry to hear you are having such a rough time. Have you thought about reducing in 0.5mg stages? I know things can get a little complicated when you're trying to follow a set pattern, but from my own experience I know that even when above 10mg per day a single mg drop can feel significant. You could try 0.5 as the next phase, or try it on alternating days. Might be worth a try, as this seems to be such an individual condition - we're all different in our tolerances and reactions.
thanks for that, Patience, I had not thought of doing that, I'll give it a try...it seems easy to go up and so muh harder to come down (for me at least)
Diprobase is the same but made by a different company.
If you are outside the UK - Doublebase features on the Amazon website and people in the USA have bought it there. It helps to have a friend with Prime to avoid paying the delivery charges though!
The best way to use it is to apply it as a moisturising cream within 15 mins of a shower/bath before the skin starts to dry out. Some of the products can be used instead of soap - which is very bad for dry skin.
A couple of us have never had skin problems - and we have NEVER used soap on our skin since we started pred. I forgot myself one morning before flying to the USA, used soap in the shower - and sat on the plane watching my skin flaking! Horrible - and of course I had no moisturiser in my hand baggage...
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