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!


Back to near normal?

  • Please log in to reply
4 replies to this topic

#1 mando621


    Silver Member

  • Members
  • PipPipPipPip
  • 210 posts
  • Location:Wisconsin

Posted 15 July 2012 - 08:07 PM

I started Plaquenil 4 months ago, and I only take it every other day. I still get terrible intestinal bloating when I take it so I take it at night.

Well, at first I wasn't sure it was doing anything. But now, I almost feel normal in my energy level. Of course with the summer, I'm not as loaded down as when I'm teaching full time.

I'm actually back to some of my normal activities, unicycling and baking. I'm even going to enter the state fair again. I hope I don't crash because of overdoing things. I'm not going crazy at home like I could be. I just feel better. I'm able to exercise once again. There are still cobwebs and other things that need addressing, but I'd rather do some fun things now that I feel slightly better.

Is this a phase? Will it continue to help or does it sometimes quit helping?


#2 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,545 posts
  • Location:West Sussex

Posted 16 July 2012 - 12:20 AM

Hi Mando,

What good news that you're feeling better; I'm so pleased for you. :emoticons-yes:

I've never taken Plaquenil, so can't advise you about the effects of it, but it sounds as if it's really helping you and I know we've got other members who've also taken it successfully. However, I do know that when I started taking my medication the difference in the way I felt was amazing and I do think that you don't realise how bad you're feeling until you feel better (if you get my meaning.) ;)

Long may you continue to improve!

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 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 18 July 2012 - 03:32 AM

Hello Mando

I have been on plaquinil for a few months, can't pinpoint any particular side effects and unfortunately any benefits either...yet! I am really hoping it will help with my killer fatigue.

Yep Jo you're right, you don't know how bad you feel/felt until you feel better. I remember when I had my bi-ventricular ICD put in and started to feel better, I marveled at how I did anything before having it in! I had not realised how ill I was and how ill I felt. I guess it's just because you have to get on with it, you don't have any other choice!

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)

#4 miocean


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 18 July 2012 - 05:53 AM

Hi Mando,

What good news that you are feeling better! Everyone is so correct about not knowing how bad you feel until you feel better. I'll echo Amanda's sentiments about her ICD in relation to my kidney transplant.

I do not know about the plaquinil but I do know that even with all of my complaints about the side effects of my anti-rejection medications I feel better and better as time goes on.

Have fun, the cobwebs can wait.

ISN Artist

#5 Buttons


    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 609 posts
  • Location:UK

Posted 18 July 2012 - 06:43 AM

I couldn't take Plaquenil but was put on methotrexate (MTX). It took some months but do feel so much better than I did before and like you Mando can do some of things I used to do. But I do know it if I overdo it but seem to recover a bit quicker now.