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Do You Take An Immunosuppresant Drug?


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#21 Lori-Scleroderma Spouse

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Posted 25 November 2006 - 06:50 AM

Wow
All this information is interesting. My hubby has diffuse sclero. He started on Plaqunil right after diagnosis in April of this year. He has done well on it. Just went to eye dr. this week. No signs of damage. He is also on Cellcept-2000mg twice daily. He does not seem to be slowing the progression of the disease. But as some stated--who knows. He will begin Cytoxan and IVIg treatments on Thursday. His rhummy was not pleased with the Cellcept progression. We hope this will work. He can hardly move without being in severe pain. He also either stays on the couch or in bed most of the day. We went on a family outing yesterday and took the kids to the movies. He had to come straight home and go to bed.

Everyone- you are in my thoughts. I am a spouse and I can only imagine all this from my hubby's experience. I hope all people with this disease will be granted the strength to get through this.

Lori
Lori
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#22 janey

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Posted 25 November 2006 - 10:15 AM

Lori,
I'm so sorry to hear about the problems that your husband is having with his dSSc and all the pain he is having to deal with. Sounds like his rheumatologist is trying all sorts of stuff. Is he seeing a sclero specialist? If not, I would highly recommend it and at least make sure that the rheumatologist he is seeing is "experienced with", not just "familiar with" dSSc.
A couple of questions:
When he starts a new treatment, does he come off the old one? (Will the rheumatologist take him off the plaquenil and cellcept by Thursday?)
Why is he getting started on Cytoxan AND IVIg on the same day? That seems extreme. Does he know that the first IVIg treatment usually takes 5 days? My first 3 treatments were 5 days, then we decreased to 4, and now I'm at 3.

I've given you a couple of links that will take you to some studies on Cytoxan and IVIG for scleroderma. Cytoxan has proven to be very helpful especially with lung involvement. The IVIg is good for the overall inflammation. It's help a lot with my muscle inflammation and joint pain. Hopefully it will help the hubby as well.

Please let us know how he is doing and how the treatments go on Thursday.

BTW - Welcome to our forum!

Big Hugs,


Janey Willis
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International Scleroderma Network (ISN)

#23 peanut

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Posted 25 November 2006 - 10:34 AM

Lori,
I'm in the middle of Cytoxan and my breathing is clearer and my skin feels so much better. It is hard but I'm feeling better. I tell my husband, it's weird to feel so bad to feel so good. Hopefully your husband will respond well.

Best of luck,

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#24 Laura

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Posted 25 November 2006 - 04:17 PM

Hi, my name is Laura. I'm 40 and I work full-time as a RN in a MICU. It took me almost 2 years to find out what was wrong with me. In 4-06 I was diagnosed with MCTD and started on prednisone and plaquenil. In 9-06 my rheumatologist added methotrexate for increased skin problems and shortness of breath. I have the start of ILD and now he thinks I'm progressing to full scleroderma. On Monday I have an appointment at the Cleveland Clinic Scleroderma center for a second opinion on further treatment. My rheumatologist is not sure what to do with me. The only thing I have noticed that's better since being on the meds is less overall joint pain. The fatigue and breathing problems are still there. My job is very physical and it's getting harder to do.

I really don't notice any side effects. So many things come up or change so frequently that it is hard to tell what is the disease and what are side effects of the meds. I did stop taking the prednisone in late October, too bad that hasn't helped me lose any weight. I have gained 30 pounds since getting "sick" in 11-2004.

I don't think things are contolled. My DLCO has dropped from 92% to 83% in 1 year till diagnosis. Once treatment started I went from 83% to 81% in 4 months. I am curious to know if that is a significant drop. My rheumatologist and general practitioner felt that it was very serious, but a lung doctor I saw didn't seen phased by the 9% loss in 1 year. I know that my DLCO may seem high to lots of you, but it scares me because I feel every bit of the drop.

Sorry this is so long. I appreciate everyones post. I have learned so much from everyone.

Laura

#25 janey

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Posted 26 November 2006 - 06:37 AM

Laura,
Welcome! I'm so sorry that you are here due to you diagnosis of MCTD and problems associated with it. I think it's great that you are going to the Scleroderma Center, especially since your rheumatologist doesn't know what to do. We all need someone that knows what they are doing and confident in doing the right thing for us. We are all different and what works for one, may not work for another.

I too have MCTD (dSSc and polymyositis). I was never put on high dose prednisone but started right away on MTX. Within 2 months I started seeing significant improvements in all my symptoms including the fatigue and breathing problems. Unfortunately, after 3 years I have started developing some lung involvements and the SOB is back but in a different way than 3 years ago.

I'm running into the same problem that you are in that different doctors see our test results in different ways. My DLCO has been steadily dropping over the past 3 years with a 4 - 8% drop every 6 months. In september I started with a new pulmonologist and, after reviewing the PFT's and Eco's, she said it was past time to start treating my lung problems. I told her that the pulmonologist I saw in January said I didn't have any lung problems. Her comment was "Well, I'm going to have to disagree with that diagnosis." My dlco is at 64 and my PA pressure (based on the Eco) is at 40. That's been steadily increasing from a baseline of 23 over the past 3 years. So I finally have a doctor that recognizes a problem and wants to stop it before it worsens. So I guess my point is that one doctor may see your 9% drop as insignificant and another may not. It will be interesting to hear what the specialist has to say.

Please let us know how your appointment goes. If you have any questions prior to the appointment or just need some support, please let us know. Lots of great people here!

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)

#26 Lori-Scleroderma Spouse

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Posted 26 November 2006 - 01:00 PM

Thanks janey and peanut. Yes he sees a sclero specialist at Duke. He is in on all the research. He actually has a SCOT's trial. My hubby does not qualify. His treatments according to the specialist is on day on cytoxan and IVIG and on day 2 IVIg. I did find a website that said 5 days. We have to see the oncologist at the site we are going to before he starts the treatment on Thursday. I am not sure if the number of days will change after seeing her. Janey I have not looked at the links you sent but I will when I finish this message. Thanks again for the support,

Lori
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Scleroderma Spouse