How long does it take to feel better?

[steph-sclero]

:)I'm on 200 mg. mino.(generic) MWF (used to be everyday but saw no results so we're trying staggered) and monthly Clindi IV's (900 mg. x2/day x 5 days) with vitamins and standard medical drug treatments for Systemic Scleroderma. No diet changes and after 8.5 mths. there is no signs of remission.  In fact I have more daily pain now and have regular flare-ups as well as herxing with Clindi IV's. Should I change my antibiotics being used? And what is MP? Thanks for any kind of feed back you guys can offer. Take Care All.

Cheers,

Steph-Sclero

[Eggs]

Steph-
I've been on ap for 11 months and from my understanding it varies. id love to have a definite timeline too but unfortunently, its different for everyone. i noticed skin changes within the first few months but am still waiting on the joint pain to subsidize. as far as herxing i experience that too and it doesnt help to get sick so stay away from sneezers and coughers. all i can say is hang in there and look for little gradual changes, those are huge victories and hold onto them as signs of hope.

[Dena]

Hi, it took 6 months for the lab tests to show improvement and 12 months for me to feel improvement.  I'm almost at 9 years now.  I'm a whole lot better than I was 9 years ago, but I'm far from remission.  In fact, my labs have been looking worse for the last year–I think (and hope) it is Fosamax or Boniva, so I have stopped the latter.  Now, if I could get my left ankle to keep returning to normal–it swells and really hurts to walk on it.  I keep a cane in my car just in case, but haven't had to use it.  Been wearing sneakers lately and I hate that–all those gorgeous shoes in my closet–oh to wear higher heels again.  I keep them, hoping. 

Each of us is different, but keep up the therapy and I think you will find improvement eventually. 

chronic reactive arthritis for 9 years

[Goodwife]

My hubby has been on AP for 15 months.  We didn't see any improvements until after month 6 or 7 – this was also the time the clindy IVs were started.  The first six months were worse instead of better.  I would say by the 10-11 month on AP he was well on his way to KNOWING everything was working.  I would not say at this point he is in remission yet.   We are just taking one day at a time.  But it seems from our experience and other posts that one year may be the mark to look for noticeable improvements.  Good Luck!

[steph-sclero]

Thanks so much everybody for all your feedback. Don't know what i'de do without the support of this board.

Take Care All!

Steph;)

[MaryP]

I'm late into the message….

I have no experience with MP.  Though I despise needles, I get a clindy IV every other week.  I also get the 10 IVs in 5 days, twice a year.  IV worked better for me than oral.  Also take minocin 100mg twice daily.  Joint pain lessened pretty quickly, but I got worse for around 7-8 months after starting AP.  That seems to be the way things go for many with SD.  Worse for me were skin tightening and thickening and really tight muscles and tendons.  At around 9 months or so began very slow improvements.  It's been baby steps forward with the occasional stall or backslide.  I notice that the IV can stir things up, but a few days later, a small improvement somewhere.  I'm really happy to be moving forward.  It does teach patience to you, that's for sure.

[Kim]

Mary sums it up…….this is an exercise in patience and not for the faint-of-heart.  Hang tough……Kim

[richie]

Hi

This takes lots and lots of time –I would say remission took me about 5 years –the very first improvement came at about 6 mos –that was fatigue lifting –joint and tendon issues really didnt  start improving for about two years or so –its a long hard pull –8. 5 months is a very short time to look for any type of substantial improvements –hang in there –you also mention standard systemic scleroderma meds –wonder what you mean by that ?? good luck

richie

[steph-sclero]

Hey Richie,

Standard med's being Immuran and before that Prednisone and then of course all the med's that treat symptoms caused by the monster.

Cheers,

Steph

[SusanSD]

Steph,

      I suspected some improvements between 3-4 months but also watched symptoms progress so it was weird – by 6 months I could see definite improvement, such as slight skin softening in the chest/neck. It was really clear by 12 months of AP – I could pick up the skin on the back of my hands, but my fingers were still very firm with slight contractures. Now at 17 months, I am starting to show improved finger flexion (less fibrosis) so I am hopeful that means I'll continue to see more progress.

      Personally I think many factors play in one's progress on AP, such as age, gender, duration of SD, profile of SD (antibodies, ANA, …), and whether there are other issues like food sensitivities, yeast or infections, …. it's all complex.

      I suspect you are herxing and hopefully will see improvements. This winter I can stand for 2 hours. Last winter I could stand only 45 min. before my feet would tingle and then painful. Really observe your functional activities and maybe you'll see a difference.

[Cubby]

I noticed improvement in 1 month.    But, I was doing Photopheresis at the time.  I didn't think the Photo was working after 2 months and I wanted to quit.  My doc had me add the Minocin and I noticed some very very minor skin flexability within about a month.

[Lynne G.SD]

Hey Cubby;
     Nice to see you posting here now.More and more people on the SD Foundation are learning of AP.Total remission here and likely going on MP just in case it might be a cure.  Lynne Christine

[Author]

Posts