Here we go again
Posted , 7 users are following.
Long story short - had to up my dose to 20 mg for 2weeks from 15mg after being on 15 for several months. So, five days ago dropped to 18mg and was feeling good ( clearer head, more positive mood, more energy, etc ) until today.
Today, six days out, starting to have minor aches but very lightheaded, dizzy, palpitations, flu like feeling and very tired to the point of feeling like I'll faint if I don't lay down. The drop was 10% so was hopeful I could do it. Apparently not.
Will reluctantly go back up to 20mg tomorrow. Any thoughts as to whether this is withdrawal or flare up ?
0 likes, 7 replies
Diana112 rocketman42
Posted
Hiya, I am sure some one might have a definitive answer for you but from what you say I wonder if perhaps the 'more energy' tempted you into doing more than was wise ? Perhaps see how you feel after a good night's rest and don't overdo it tomorrow.! I am sure I recall Eileen saying you need to be careful for a few days when you start the next reduction.
maid_mariane rocketman42
Posted
I started on 20mg and my 1st drop was to 17.5mg and it just about killed me. My rumi then only had me drop by 0.5mg using the dead slow and i had problems with the next drop but managed. My last 2 drops i increased to 1mg and now dropping from 13 to 12mg.
I know I'll be going back to 0.5mg drops soon. What I'm saying is not all of us can drop 10% so maybe try to go at a lesser rate and are you using the sl9w method.
You need to control your inflammation.
jean39702 rocketman42
Posted
Like Maid Marian, I can only tolerate .5 mg drops on the DSNS. I started on 40 mg over three years ago and was able to handle the 10% drop until I reached about 16 or 17 mg (It's been a while so I can't remember exactly when). Even dropping at .5 I sometimes stay at a level for up to 2 months, depending on what I'm doing ( I travel a lot), the weather, and my general feeling of "PMR wellness". I'm now dropping fromn 10.5 to 10 after 3+ years and two flares, the last of which was over a year ago.
maid_mariane jean39702
Posted
Hi Jean
I to need to stabalize for about 1 month before i drop again. The ladt time was close to 6 weeks thays why i may go back to the 0.5mg drop. Unless i feel ok i don't drop.
Nice to hear that someone else out there is slow like me. I also have to split my dose, how about you.
jean39702 maid_mariane
Posted
No, I don't have to split the dose. I did for a while when I was at higher levels to alleviate the 'fuzzy' head.
EileenH rocketman42
Posted
I think you need to see your doctor. If you felt well immediately after the drop this isn't likely to be withdrawal - that is a response to the lower dose and happens quickly and then improves in a few days. It sounds more like a flare - but it could be coincidence and really due to something else.
Have you got PMR or GCA? Either way, there is no really good reason for being at 15mg for months unless something else is going on. Last year I had a flare that took the form you describe - a whole new thing for me. We eventaully decided it was almost certainly large vessel vasculitis making me so breathless and dizzy - since a few weeks after that started I got the telltale signs of PMR and other causes had been ruled out.
rocketman42 EileenH
Posted