Hey I just remembered my anniversary was yesterday

[jeffn]

You women are probably thinking "isn't that just like a guy"! BUT it was not my wedding anniversary (that is in May) it was my mino anniversary. I began six years ago yesterday or maybe on the 23rd. Anyway six years. Over the past 18 months I have reduced my dosage to 100mg once a day seven days a week from 100mg twice a day seven days a week. Can't decide if I should press my luck with a further reduction of not. So far so good though.

[isobelle44]

Wow you have been at 100 for 18 months. Thats really good. I dont know about further reduction but im pretty impressed with the first reduction. Glad your doing well.

[jeffn]

Actually I have not been down to 100mg for 18 months. I first reduced my evening dose from seven days a week to every other day. Then I eliminated my evening dose all together last spring at some point. I am thinking about a further reduction but don't want to tempt fate too much. With my recent shoulder injury I don't want to reduce now. My onset of SD came after a previous fall at work. I was contemplating going back to 100mg twice a day as a preventative but have not and so far no issues.

Thanks for the support Isobelle.

[christel]

Happy Anniversary, Jeff and Mrs. N....oops, not the wedding one at this time! Anyhow, quite an awesome milestone for you, Jeff! Keep up the good work. IMHO, I probably would also not tempt fate and try any further reductions right now. Let that shoulder continue to its full recovery.

C.

[kathsherman]

HAPPY "Scleroversary" to you dear friend!!!!!!!!!!Many many more..

[grammie]

How about that for a celebration! Actually the reduction and no side effects of SD is even a bigger reason to celebrate!! Glad for you that SD is going well. Hope the shoulder is too.

grammie

[Randy]

Hi Jeff,

Congrats on your 6 year mino anniversary. I'm about a year behind you, and thankfyully, I too am doing very well.

I wanted to comment on mino reduction.

With Dr. F.'s direction, on 9/26/12 I reduced mino to twice daily 4 days /wk and noticed no ill effects. On 12/11/12 I further reduced mino to twice daily 3 days /wk.

Although my 1/7/13 labs do not show any increase in mycoplasma or any other indication that my scleroderma is ramping up again, I believe I began feeling swelling and stiffening of my hands, and stiffening of my feet and face during the last month, starting around 27 Dec.

So I have recently re-up'd my mino to the standard twice daily every day, and I am already feeling a return to my more normal state. I expect Dr. F. will provide me some feedback shortly.

By the way, for the record book, I am on Clindy IV # 311....."but who's counting?"

Randy

[jeffn]

Hey Randy good to hear from you. Thanks for the feed back. When it comes to reduction of dosage good info is hard to find on any of the boards I frequent. I am also relieved to hear that after your reduction and then seeing your symptoms returning somewhat the mino is once again doing the trick. Do you think you might return to the four day dosage after this return of swelling subsides? Cubby also got to a point where further reduction brought a return of SD symptoms. I may just stick with the present dosage as I am pushing 63 and I'm thinking why rock the proverbial boat.

Good luck with all this stuff and please keep us posted as like I said real world dose reduction info is VERY scarce.

[Randy]

Hi Jeff,

Yes, I plan to return to 4 days / wk if for no other reason just to minimize brand minocin expense. The 2 main reasons I have wanted to reduce the mino are skin darkening of my face and continued extreme low IgM. My IgM went very low immediately after starting AP and has stayed there, although most all others have returned to normal values. I imagine all AP'rs have low IgM. Does this mean we are more suceptable to other bad illnesses? I do not know if this is something to be very concerned about. I personally have not come down with any infections or caught any other serious illnesses.

[nhnancy]

Congrats Jeff!....

[grammie]

I am still off mino since April 2012, I don't think my hands are stiffing up but I do get a cramp in them so that they lock! I see my original rhymie in a few weeks. Will be intresting to see what he says. As I said before, the team that saw me this summer commented on seeing the SD in the finger tips. I feel great!

I do think the mino did help my joints for they hurt more than before but I think that may have to do with my age!

Will let you know that he says. grammie