Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Does increasing titres of SCL-70 mean anything? Any user experience with Plaquenil?

  • Please log in to reply
5 replies to this topic

#1 cantuse



  • Members
  • Pip
  • 9 posts

Posted 20 July 2012 - 10:38 AM

Still waiting on my official appointment with the rheumatologist, but recently I changed my Primary Care Provider because I moved last year. Anyways, turns out this new primary care physician has significant experience with connective tissue disease and re-ordered my bloodwork as a first step to see how my titres have changed. The results came back showing that my SCL-70 increased to 1.5 from 1.3 since six weeks ago. I know don't know how to make heads or tails of this kind of thing, so I'm wondering if people here can make sense of it.

Also, she is suggesting that after I see the Rheumatologist, I try out Plaquenil. I was curious for any feedback on this medication.

Thanks! I've been away because of my newborn. I'll try and put a picture of him up shortly.

#2 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,559 posts
  • Location:West Sussex

Posted 20 July 2012 - 12:21 PM

Hi Cantuse,

I've found you links about the Scl-70 antibody on our autoantibodies medical page and also a thread on Scl-70 which I hope you'll find interesting and informative.

I've never taken Plaquenil, but I know that many of our members have had a successful use of this drug; again I've found you a thread on Plaquenil usage by some of our members.

Many congratulations on your newborn son :emoticon-congratulations: and I'm looking forward to seeing the photos of him!

Kind regards,

Jo Frowde
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#3 red


    Senior Bronze Member

  • Members
  • PipPipPip
  • 96 posts
  • Location:Upstate New York State

Posted 21 July 2012 - 09:15 AM

Hi Cantuse, congratulations to you and your wife on the new baby! I'm sure he will fill your days (and nights!) with much joy!

I can't advise you on on the SCL-70 as I've always tested negative on my antibody screens, but I have been taking Plaquenil for over a year now. Mildly upset my stomach for the first month or so, but that went away quickly. I do get my eyes checked every six months, and so far, no adverse effects there. Effect-wise, it's definitely not a "wow I feel great now" difference, but after around 6 months there seemed to be a gradual lessening of my fatigue, and now overall I have less days of drop-dead, in-bed fatigue than I used to have. My lung function tests have stabilized over the past year too, at around 75-80% -- before Plaquenil, I'd dropped from 100% down to less than 80% over the previous year, so I'm sure it's helped with the systemic inflammation. I'm disappointed that my joints and muscles don't feel better though....

I'm seeing my rheumatologist next week for my 3 month check up; he spoke last time of possibly adding a new med, leflunomide (Arava). It seems like it's a hit or miss with meds, while some meds might work well for some of us, others respond better with different meds, and unfortunately, a lot of the meds take quite a while to see an effect, so it's a lengthy process to get a medication regime in place that's working well. Hope you are lucky and Plaquenil works well and quickly for you!

Keep in touch when your son is napping and you have a few minutes!


#4 Teatime


    Senior Bronze Member

  • Members
  • PipPipPip
  • 54 posts
  • Location:Texas, USA

Posted 21 July 2012 - 07:08 PM

I was tested 6 years ago for SCL-70 and tested positive. The test was repeated and it was positive again, same exact result. I haven't had the test done since then. I don't think my doctors felt it was worth repeating the test over and over.

I've been taking Plaquenil for about six years. It takes awhile for it to start working -- up to 3 months, if I'm remembering correctly. It's funny, because I don't think about it doing much but when I've had to go off it for surgery, my skin and nails turned awful. My skin swelled and was very fragile and my nails split and broke. I was glad to resume it.

Congrats on your baby! If you take Plaquenil, I hope it helps you.


#5 cantuse



  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 22 July 2012 - 01:16 AM

Thanks for the answers.

It's strange how scleroderma affects people so differently. Thank you red for your answer in particular since I'm especially concerned about myalgia right now.

Does Plaquenil help at all with GI related issues– or should I expect to supplement my diet with additional proton pump inhibitors?

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 22 July 2012 - 02:27 PM

Hello Cantuse

I have been on plaquenil (hydroxychloroquine) now for a couple of months I think? Can't site any improvement as yet but then it is early days. I am hoping for an improvement in fatigue mainly. I have never heard of it improving gastrointestinal issues only fatigue and for some people pain (sorry Red but I am encouraged your fatigue improved) but that's just me. It's an antimalarial drug.

Congrats on baby and I look forward to seeing some pictures. I love babies and am going to be a grandma again!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)