Down to 2 mg
Posted , 5 users are following.
I am down to 2 mg per day with NO pain. 5 days now. I was going along with one 2.5 mg pill for about 3 months and decided to drop, but every time I've done this before disaster struck and I was back on 5 or more, this time I think maybe, just maybe PMR is gone. I've had it since 2008 and have never gone below 2.5 per day for more than a couple of days. I am going with 2 mg for 2 weeks, then everyother day for a week, then 1mg, then I don't know. Can PMR just disappear or should I stay on 1 mg per day. I don't want to. I need to get off Pred. I know along with you all we both hate and love this drug.
I rode my bike 2 days in a row with no morning pain. It's turned cold in New England we had our first snow last night, and usually cold means hurt, I am sooo exited, I think my PMR is gone. Has anyone else had this happen, here today gone tomorrow?
0 likes, 6 replies
MrsO-UK_Surrey
Posted
Is 3 months the longest stretch you've been on 2.5mg? If so, that could be the secret. It is recommended that we stay on each dose below 5mgs for about 3 months. If you're doing it in .5 reductions then you possibly don't need as long.
After a big flare at 3mgs (it had started worsening below 5) I had to return to 10 followed by 7.5 and 5 for several weeks. Once back on 5 my rheumy kept me there for 5-6 months and that seemed to do the trick for me and I was able to continue reducing successfully but continued to take 3 months to slowly taper between each dose. The longer stretch obviously got the inflammation well and truly under control. It had obviously been the sticking point previously so needed longer to settle.
As you say you are now completely pain-free, it could well be that PMR has gone into remission but I wouldn't tempt fate if I were you, I would still take time to taper as the percentage drop is higher the lower you go, if you see what I mean! I have just reached .5mg alternating with zero every other day but I am still taking it very slowly. But perhaps I'm erring more on the side of caution than you as I do have to take into account that I have GCA as well as PMR.
It's great to hear your news - that will give so much hope to other sufferers especially those just starting out on this journey. My very best wishes as you reach the end of your journey and do keep in touch and let us know how you get on - we can share a glass or two in celebration, albeit virtually! :bubbly:
MrsO
mrs_k
Posted
As Mrs O say, woo hoo :P but also take note of the rest.
Take it as slowly as you can, my Rheumy reckons a 1mg drop every three months and then zilch. But like Mrs O I would not do zilch, would do .5mg for a while and then drop in the odd day or two with Omg. Slowly slowly catchee monkey seems to me the best way.
I do so hope it has gone, gone, gone forever. But remember it can take up to a year before your adrenal glands are back to normal. So carry your Blue steroid card please.
EileenH
Posted
I'm with the others - proceed as slowly as possible! Better 3 months at each dose than another blip - if you're really sneaky your body may never notice!
Eileen
gillybee
Posted
Congrats on your good news! This is great to hear, and I hope that you are right and the dreaded PMR has at last left you.
I too am down to 3mgs after 18 months of PMR. Keeping my fingers crossed for you.
Gilly.
odiecass
Posted
MrsO-UK_Surrey
Posted
Either the PMR is still 'lurking' and the 2mgs is fighting it or the body is resenting the withdrawal of the steroids. Either way, especially as you now have snowy conditions upon you, it may be a good idea to stick with that 2mgs for 2-3 months which will take you through the worst of the weather and then it should be easier to taper to 1.5 etc. Do hope you find the morning pain reducing soon.
MrsO