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Diffuse Scleroderma


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#1 Jenny

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Posted 18 April 2007 - 08:26 AM

Hi guys,

 

This is my first time on this forum or any forum, it's great! I'm 26 and have diffuse scleroderma. I'm desperately trying to find answers and healing just like everyone else! This disease is so frustrating and makes me feel so sad and angry everyday, as I love my life. I was wondering if anyone has heard of the use of IVIG or tried this therapy?



#2 Heidi

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Posted 18 April 2007 - 08:42 AM

Hi Jenny,

Welcome to the Forums! I am so glad you found us, but sorry it is because you have diffuse Scleroderma. You have definitely come to the right place to share your frustrations with this disease with others in similar situations. I am sure you will find everyone here warm and supportive.....and very eager and willing to share information and advice when able.

I can not give you any personal experience information on IVIg treatments, but I know several here have tried that treatment and I am sure they will chime in shortly. Also, here is a page from our Sclero web page that lists different studies with IVIg treatment.

I hope you find that helpful.

Again, welcome!

Warm wishes,

Heidi



#3 Jenny

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Posted 18 April 2007 - 09:30 AM

Hi Heidi,

Thank you very much for your support and reply. I want to know what people have tried and what worked? So many questions....?

#4 janey

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Posted 18 April 2007 - 09:49 AM

Hey Jenny,

 

Welcome to the forum! I've read several of your posts today and am thrilled at your participation. I'm sorry you are here due to having scleroderma, but as you already know - if you have to be somewhere, this is a great place! So Welcome!

I have been getting an IVIg treatment every 6 - 8 weeks for the past 2 years. I have Mixed Connective Tissue Disease (MCTD-sclero and polymyositis) and the IVIg was originally prescribed for the poly but since it's also proven to help sclero it has been worth the time (and expense for the insurance company). The infusions have helped keep my poly in remission and has really done wonders for my fatigue and energy level.

It's hard to say what it's done for the sclero since there is no definitive test like there is for poly. However, I do not have skin involvement even though I did during year one (I'm in year 5), my GI problems have remained in the "annoying" stage (heartburn and reflux when I don't maintain my prevention habits), Raynaud's has actually improved and no joint or muscle pain. I do have heart and lung problems. My heart problems started before the IVIg and my heart is showing signs of improvement. I was taken off my anti-arrhythmia drugs a month ago and feel so much better. Still working on the lungs and trying to stabilize them. They have actually worsened since I started the IVIg treatments, however, I certainly don't connect the IVIg treatments to my lung problems - it's all MCTD.

The treatments themselves are long and boring, but I love the after effects. They are very expensive. My insurance company pays $18,000 for each treatment. I pay $20/day and a treatment could be 3 to 5 days.

Hope this information helps. BTW - I'm also on Cellcept (3 wks) and have always been on some type of immunosuppressant. Again - Welcome to the forum. It's so good to have you here.


Janey Willis
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International Scleroderma Network (ISN)

#5 Jenny

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Posted 18 April 2007 - 12:23 PM

Hi Janey,

Thanks for the reply! I live in BC, Canada so the treatments are free. The catch is the IVIG is not just handed out.... Thats awesome to hear its working for you!! I will be seeing my specialist soon as I live 14 hours away from my specialist. So I will be asking about this in May. It gets me so excited to hear positive things, I try not to get to excited though, try to advoid the disappointment. I believe there has to be a cure or something out there for this... I two have MCTD with Scleroderma, Lupus and Raynaud's. I was diagnosed when I was 21. I believe it was caused by hormones. I was on the birth contol pill, then was forgetting to take my pill. Went onto Depo-Prevera and wasn't working that well so switched back to the pill after I had recieved my 3month dose of Depo. Later about a month or so I woke up and couldn't move my hands. They put me on Prednisone and then about 3 hours later I moved them! Since then I haven't had any answers as to why my hands did this?? I feel great and work out at 3 times a day and Supervise a Preschool/Daycare with 43 children! This I'am very greatful for, I just wish I didn't have it all......!

I would love to hear your story if you will share? I 'am now 26 and trying to get pregnant. Do you have kids? Talk to you soon, Thanks so much! Jenny

#6 Sweet

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Posted 18 April 2007 - 12:36 PM

Hi Jenny!!

Welcome to the Sclero Forums. I'm sure sorry you have Sclero. :( Looks like you've been given some great info so far. I don't have any personal experience with IVIG so I have nothing to share there, but wanted you to know you've found a great place! We all certainly understand how you feel.

I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 nan

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Posted 18 April 2007 - 12:45 PM

Jenny,

 

Welcome to the forum! You have come to the right place for support. I have never had that treatment. You have a great attitude!

 

Take Care!

 

Nan



#8 Heidi

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Posted 18 April 2007 - 01:59 PM

Hi Jenny,

Here is a link to a previous thread that you might find helpful. It is called "Getting to know you" and has a lot of information from different members all about themsevles apart from and including info about their disease.

Warm wishes,
Heidi

#9 RememberingToSmile

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Posted 19 April 2007 - 02:25 AM

Welcome -

I've never had the IVIG treatment - So far, I've had great success/response with Cellcept [3 g per day].

Let us know how the May specialist visit goes for you.

-RTS

#10 Jenny

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Posted 19 April 2007 - 01:31 PM

Hi Janey,

I was just wondering how long is one treatment? My sisters was 18 months, but that's in Canada. Also, what do you take fpr arthritis pain due to the rain? It has been raining here for 5 days now and I'am so sore.

Thanks So much

#11 janey

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Posted 19 April 2007 - 03:17 PM

Jenny,

 

My rheumatologist calls a "treatment" the same as an infusion session. Each session can be 2 to 5 days depending on the prescribed dose and dose/day. My first 5 treatments were 5 days, then we went to 4 days and now at 3. At 3 days per treatment, each day's infusion last about 5 hours. I've been getting infusions for 2 years and there is no talk of stopping them. Six weeks after a treatment, I'm more than ready for the next one.

I guess in Canada a treatment is considering the length of time in which the infusions will be administered. Did the infusions stop after 18 monhts? How is she doing since?

So sorry about the arthritis pain your dealing with and the endless rain! I hope the rain stops soon and you get some wonderful sunshine.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#12 monika

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Posted 27 April 2007 - 08:23 PM

Hi Jenny

I was 32 when I was diagnosed (now am 34). I'm methotrexate and cellcept, in Australia they seem to be more inclined for this type of treatment. But I'm open to alternative treatments, and like you am on the search for answers and a cure (as everyone else is :) ). Have heard IVIg works with some patients with their symptoms, but personally I haven't tried it.

Welcome to the forum, hope you find it as useful and supportive as I do.

Keep strong.

Monika.

#13 HeatherT

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Posted 30 April 2007 - 03:24 PM

Hi Jenny,

I am trying to get my insurance company to approve IVIG treatments for me right now. I should hear something by the end of the week and will keep you updated. Right now I am on Cellcept and have been since October. My Sclero is still progressing and I am keeping my fingers crossed that IVIG will get approved. I have skin involvement pretty much everywhere and lots-o-pain in my joints, mostly hands, hips and ankles.

By the way, I was diagnosed 3/2006 and am 36 with a one and a half year old daughter. I had my baby right before I was diagnosed, but my doctor thinks that I had scleroderma before I got pregnant.

Good Luck with your appointment with the specialist.

Heather