Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
5 replies to this topic

#1 Lauriejill


    Senior Bronze Member

  • Members
  • PipPipPip
  • 31 posts
  • Location:Encinitas, California

Posted 22 December 2006 - 04:45 PM

Hi everyone,

Can you share any experiences you may have had with this particular drug. (Penicillamine)?

My rheumatologist has prescribed it for me (along with the methotrexate that I already take) and it seemed to me that I had read that this was a drug that had been used in the past and discarded? Is there anyone taking it now or in the past who could give me some personal experience? Thanks so much.


#2 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 23 December 2006 - 05:47 AM

Hi LaurieJill,

I've never taken it, but I did find this lilnk for you to review. I hope it helps! Best of luck to you.


Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 GocartMoz


    Silver Member

  • Members
  • PipPipPipPip
  • 164 posts
  • Location:Florida

Posted 23 December 2006 - 07:34 AM

Hi LaurieJill

I was prescribed D-Peniccillamine and was on it for about 3 weeks. I noticed absolutely no benefits and in fact, I think things started to get a little worse. A different dr., but an expert in the field of Scleroderma, told me to stop taking it as he said it would probably not work. That does not mean it won't work for you, but you should know there are studies out there that conclude it has no effectiveness. It was alot more popular and was the drug of choice for scleroderma patients, as I understand it, a few years back. It has recently fallen out of favor, however. Good luck with what ever treatment you choose.


#4 sharon



  • Members
  • Pip
  • 3 posts

Posted 28 December 2006 - 05:25 AM

HI LaurieJill,
My mom has used Penicillamine for years and has had good results from it. So, each person responds differently.

#5 bookworm


    Silver Member

  • Members
  • PipPipPipPip
  • 292 posts
  • Location:Texas

Posted 29 December 2006 - 08:07 AM

Hi, Lauriejill!

My short answer is that if a doctor prescribed Penacillimine for me, I would start looking for another doctor.

I can't say that it's helped no one, but there are some really wonderful new drugs out there that have been found to do a much better job without some of the awful side effects.

Your doctor's apparent ignorance says to me that he or she can't be bothered to do a little simple research.

Mary in Texas

#6 Elehos


    Silver Member

  • Members
  • PipPipPipPip
  • 196 posts
  • Location:Upstate NY

Posted 29 December 2006 - 02:17 PM

Hi Laurijill,

This summer after my diagnosis of sclero and lupus, I was given a list of drugs that can either cause drug induced lupus, or worsen it if you already have it, so I would be very certain about your diagnosis before taking penicillamine. Since I already have a diagnosis of lupus, it would be out of the question for me. That's not to say you will end up with lupus, but some drugs can give you lupus like side effects, either short or long term, and you don't want to end up feeling worse. I'm sure there are more out there with experience, and will add to what everyone has already written. I hope you find the answer you need, if you haven't already!

Best wishes,