Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Always more questions


  • Please log in to reply
8 replies to this topic

#1 KayTee

KayTee

    Senior Bronze Member

  • Members
  • PipPipPip
  • 84 posts
  • Location:Northern California

Posted 17 April 2010 - 11:35 AM

Hi everyone:

I haven't posted in a while (been looking after mom/grandchildren) but as always, there are more questions. After my CREST diagnosis last November, I went to a scleroderma center and have been very happy with the doctors there. My next visit is August.

Meanwhile, I have seen several other doctors for things and they have said there are drugs which slow the progression of the disease. Does anyone know if this is standard practice? Based on individual progression?

As scary as everything can be sometimes, this site really helps.
Thanks. :bye:
KayTee
Kay Tee

#2 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 18 April 2010 - 03:38 AM

Hi Kay Tee ,

My son was put on Plaquenil after 9 months of esophageal dysmotility, weight loss, etc. Within a couple of months, his esophagus was better and he wasn't so sickly. I am surprised the doctors at the Sclero center haven't put you on anything.

Take care, Everyone.
Margaret

#3 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 18 April 2010 - 10:00 PM

Hello KayTee,
this is a good question. I was also wondering about these medications since my reumathologist did not prescribe me anything specific for scleroderma. Well, I suppose that since the examinations did not manage to proove sclero he should not prescribe anything. Or maybe the reason is that my symptoms are not visible enough to get a medicine. Or he wanted to see how the desease will progress without medicine. I will ask at my next visit in about 4 months. :unsure:

Regards

Erika

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 19 April 2010 - 05:47 AM

Hi Everyone,

I think a lot of specialists like to get an idea of progression (fast? slow? not at all?) before they start prescribing things like immune system suppressants and some of the other medications with possibly serious side effects. Even then, there isn't always agreement about how aggressively to treat nor what to use.

My rheumatologist is part of a study group who is looking at CellCept versus cyclophosphamide for treatment of interstitial lung disease (pulmonary fibrosis). I'm in the CellCept arm of the study and am pleased to be doing well on the far less toxic medication.

Whenever a symptom gets worse or I get a new one, we discuss the treatment options available, whether the symptom should be treated now or later, whether there is effective treatment, etc. You'd be surprised how often we jointly decide against treatment at the present time. happy.gif

In my completely subjective opinion, what is most important to me is that my specialists are alert to any sign of progression - I'd prefer that than to add another medication just because I think I should be getting treatment.

Warm hugs,


Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 19 April 2010 - 06:11 AM

Hi All

That's very interesting, Jeannie and I can relate to what you are saying about the Cellcept versus cyclophosphamide idea.

In my case my consultants felt that as my interstitial lung disease was still at the inflammation stage but it was progressing quite fast (they weren't sure how much of the ground glass on my lungs was fibrosis and how much was reversible inflammation) they went all out with a very aggressive programme of 6 months of IV cyclophosphamide and then straight on to an immune suppressant which they think I'll be taking for the next 5 years or so. In my case, because they caught it very early, it was very effective and the result, especially in my TLCO levels, was remarkable!! emoticons-yes.gif

I think, though, it does depend on how quickly the disease is progressing; like you I'm not very keen to take strong drugs if I don't have to!! wink.gif


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

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


#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 19 April 2010 - 09:39 AM

Hi Kaytee,

I think it really depends on who you see. However, according to my Rheumatologist, Plaquenil is the first line of treatment. It will help with pain and fatigue and has the ability to slow progression, and in some cases stop the disease in it's track. I've been on it for 10 years. It's REALLY helped. It takes about 3 months to start working, and you need eye exams every 6-12 months as it can have some toxicity that affects the eyes. I've not had one problem. I would suggest at least talking with your doctor about it.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 KayTee

KayTee

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 84 posts
  • Location:Northern California

Posted 04 May 2010 - 01:51 PM

Thanks so much for all replies. A part of me doesn't want to take anything (of course) and yet it's hard to listen to people, especially other health care professionals, who say you can do this or this and this...... I really appreciate all your input. And it helps me add to the inevitable list of questions for my next expert visit.
Kay Tee

#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 06 May 2010 - 06:59 AM

Hi KayTee,

You raised an excellent topic. Not everyone with systemic scleroderma is prescribed or elects to go on a medication for the overall disease. There are still no treatments for it that have survived large scale clinical trials, and many approaches are very expensive and potentially harmful or even fatal. Plus, many times the disease slows down or even halts on its own, even without any treatment at all! In fact, it is the spontaneous improvements that make studying treatments for scleroderma extremely challenging.

If your illness isn't progressing at a rapid pace, or if the symptoms are individually treatable, then often it is wise to take a wait-and-see approach. I like to think of opting out of treatment (at various points) as being a wise way to save the 'big guns' for when they are really needed. If we indulge too heavily in the more toxic approaches, too early in the game, we might wear out our liver or kidneys before their time, as liver and kidney damage are frequent side effects.

Since it is a complex and largely experimental matter, it is very wise to consider and discuss your treatment options with a scleroderma expert, just exactly as you will be doing. And keep in mind, if they recommend no treatment, it does not mean that you are being poorly treated! Rather it means they are giving the illness a chance to stabilize or improve on its own, which is the most 'natural' remedy of all.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 06 May 2010 - 09:34 AM

I too, appreciate this thread that you started!

Great feedback you've received from folks!

I'd just like to add a bit of my experience, if I may.

I was diagnosed in 1995, but had been seeing my rheumatologist since 1991, when she first went into practice. One half of the week, she saw patients; the other half, she was a researcher, so I felt very fortunate to be one of her patients.

She was expeditious with her treatment of my symptoms, for which I was grateful. However, as time went on, she spoke to me about adding 5 more to the medications I was already taking.

I asked her what each of the new medications was to accomplish and she answered my questions. Because of our doctor/patient rapport, I felt comfortable letting her know that the maintenance program she had established for me was working very well. Therefore, I did not want to add any new medications until it's necessary.

Since then, some of my medications have needed to be changed and a couple have had to be added, but each of us has been comfortable with the results.

I have been so thankful to have the specialists I have had!

I wish you the best with your doctor(s) and treatment plan, should that be determined, in the near future.!
It is wonderful to have others to discuss concerns with, as you have done.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)