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HeatherT

Big Treatment Decision

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Hi everyone,

I visit this site often and occasionally post a topic when I need some help or add to a discussion when I can help. Well, I need some help.

 

I've tried Methotrexate with no results and then tried Cellcept with no results. I am seeing a specialist at John's Hopkins and it has been recommended that I switch treatments. I have a choice between IVIG or Cytoxan. I have no organ involvment at this time other than GERD, and have Diffuse systemic scleroderma with active skin progression (diagnosed one year ago).

 

I am aware of and afraid of the side effects of taking Cytoxan and wondered if anyone has experience with this medicine. I am afraid of the long insurance battle for IVIG and was wondering if anyone had experience with this.

 

Any knowledge, advice etc. would be greatly appreciated.

 

Heather

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Heather,

It looks like you're going through the same thing I'm going through. I guess through the process of elimination, we'll finally find a immunosuppresant that works for us. One thing I need to point out is that our symptoms and diseases appear to be different. I have minimal to no skin involvement but heart / lung problems. I also have another connective tissue disease: polymyositis.

I've been through MTX which worked great for 3 years but plateaued and added IVIg. I've been getting treatments every 6 to 8 weeks for almost 2 years. It has done wonders for the polymyositis, but it's hard to say how much good it's done for the scleroderma. There have been positive results in clinical trials with IVIg for scleroderma. I track my CPK which is a measurement of the poly activity. I use this for justification with the insurance. So far so good.

I was on oral cytoxan for a month and if I can help it, I'll never go on it again. At this point it looks like we're going to try cellcept. There's not much left. I didn't do well on Imuran either, so the choices are limited. I hope whatever you end up on works for you.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Heather,

I went through IV Cytoxan last year. Now I am really sensitive to meds. I would go in on Friday morning, have my treatment, about 5 hours, go home and sleep for the night. On Saturday and Sunday I would be really tired and out of it, Monday I would start to feel better and by Tuesday I was back in motion. I did find that the anti nausea meds they gave me made me loopy so I switched to something else and then I felt much better. Since I am really sensitive, I lost a lot of hair. When it first started to come out I freaked, then I went straight to the salon and had them give me a short hair cut. Everytime I went back, I was loosing more hair so I would cut it shorter and shorter. Over the summer it was so hot, I asked for a boys regular and had a short spiky do. Very easy to maintain and cool. Now I am trying to let it grow out and it is a pain!! I guess I could throw on one of my wigs. :)

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Heather,

 

Just wanted to give you another data point. My husband was diagnosed with diffuse scleroderma 2+ years ago. He is seeing Dr. Wigley at Johns Hopkins. His early progression was fairly rapid but fortunately he got a diagnosis within the first 5 months. He has and is taking Cellcept and it may have slowed the progression of the disease, but he still had many symptoms.

 

At his visit last year at this time, Dr. Wigley gave him the same suggestions which you were given. He chose to pursue IVIG therapy because he was more comfortable with the risks and side effects. He submitted a request for pre-approval to our insurance company at that time and we were very happy that in a relatively short period of time (1+ months) they gave him approval to start the therapy.

 

He started monthly therapy in June with 5 half days of IVIG. He immediately saw some improvement with more ease of movement and some regression of his skin involvement. The only side effect was at the time of the IVIG when he found he was more tired than usual but nothing more. He continued with the monthly treatment and saw continued regression of skin involvement. After a few months of treatment they were able to increase the daily dose and reduce the days of treatment to 3 half days per month. After his visit with Dr. Wigley last fall he is now getting treatment every 2 months.

 

At this point his scleroderma seems pretty stable, the IVIG doesn't seem to be making big changes in his scleroderma but he is at a much more comfortable place than he was a year ago. He will be seeing Dr. Wigley soon and will be asking him what the next steps might be.

 

Good luck with your decision,

 

Jody

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My wife was on IV Cytoxan for 5 months and she had pretty much the same side effects. She was okay the day of and then the next two days she was out of it and feeling bad, but by the third day she was better. After the five months we really didn't see really too much improvement and her lung disease has gotten worse. We are now in the process of finding out whether she will get in the SCOT study at Duke and if so which arm she will be in, Cytoxan or Stem Cell transplant.

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Thanks everyone for your advice. My self imposed deadline to make a decision was today. Its been a week since my appointment and I really need to get moving. I think I am going to try to get approved for IVIg and see what happens.

Thank you!

Heather

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Hi Heather,

 

Good luck....please let us know how it goes with getting approval and then how the treatment is working for you! I am sending lots of positive thoughts your way for your insurance to approve your treatments.

 

Warm wishes,

Heidi

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Heather,

Good decision from MY perspective, having experienced both! I hope you get approval for the IVIg. Please let us know. It's a very boring procedure, hours hooked up to an IV, but a marvelous time for rest, reading, and total relaxation!

 

Look forward to hearing some good news from you.

 

Big Hugs, Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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So, we got the big fat denial on the IVIG treatments. I have filed an appeal but they basically said, "we cannot stop you from appealing but the decision will be no". My father-in-law has suggested contacting the drug manufacturer directly and pleading my case. I guess they sometimes provide the drug at a discount or free. Has anyone had any luck doing this?

 

I might just have to post this question in a new, different thread.

 

Thank all for your help.

Heather

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Heather

I'm so sorry that you were denied for IVIg treatment. I think denial for IVIg is more the norm than the exception. The cost is trememdous compared to someting like oral cytoxan. My cytoxan was $40 /month. My IVIg treatments are $18,000 per treatment which right now is once a month. After July, we go back to 6 weeks.

 

IVIg is not a drug but rather a concentration of immunogloblins G (IgG antibodies) that have been extracted from blood donors. Apparently it takes thousands of donors to get enough antibodies for one treatment. Herein lies the cost.

 

IVIg is sometimes referred to as a third-line treatment, meaning that you have to try at least two other treatments with no effect. So maybe - if you're not able to get the IVIg this time, then maybe - if you try cytoxan and it still doesn't work, then maybe you'll have better justification for approval. (Lots of "maybes". :unsure: )

 

Good luck! Please let me know what you hear from the manufacturer.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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