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Cyclophosphomide


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#1 oddone

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Posted 19 January 2007 - 03:34 AM

My husband has an appt with his rheumatologist. next week, and this is only his 2nd appt.(first for initial diagnosis) At the last appt. we were asked to consider the drug cyclophosphomide and discuss at next appt. Just wondering others thoughts about it. My husband does not have any organ involvement (re" Normal" PFT & ECG) but extensive systemic (head to toe) skin thickening. THe PFT & ECG are the only tests that have been performed and no blood test since July 06 (which showed ANA positive speckled pattern). What further tests should I be inquiring about? My husband is more, well just do what they say, but I think that if you dont try to help yourself as well, things may slip through the cracks, especially with such a disease that affects people sooooo differently. Any posts would be greatly appreciated, for the newbie. I have been doing alot of research, and looking at posts here, and it seems that some are put on meds immediately, and some aren't. Some have lots of meds and some do not require. If not alot of tests are done, how do they know? ie - PFT looks like a good test, but doesn;t always detect things, and there are about 4 other tests to determine PH, PAP. Its a little confusing...
Im hoping that there will be a battery of tests scheduled at this next appt. Just to get more info. But as I am finding out......theres never enough info about this disease. Thanks for your help everyone, I enjoy this forum emmensly!
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#2 Vee

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Posted 19 January 2007 - 09:25 AM

Hello Oddone,

I've had systemic diffuse sclero for 8 years. I'm no doctor but I do know that this disease can change anytime, and we should get certain tests on a regular basis, pft's being one of them. And whether or not he his showing symptoms of lung issues, it is a good idea just to get a baseline to have something to compare it to should the need for it arise in the future. I'm sure one of the smarter members will chime in on this one, I just wanted to through my two cents in!

And also remember, that no symptom is too small to mention when it comes to this disease. The key is to stay ontop of it, and keep as positive as possible!

Warm and Happy wishes to you and yours! :D Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#3 Heidi

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Posted 19 January 2007 - 10:37 AM

Hi,

I think you are correct in that you should educate yourself as much as possible and even suggest certain tests be done rather then sit back and wait for the doctor to suggest certain things. I know my rheumatologist wouldn't think of ordering a PFT for me unless I suggest it and prompt him in that direction.

Here is a link to our Sclero A to Z website that talks about common medical tests
You might want to take a look there to see what other tests you might want to ask the rheumatologist about.

Please do keep us posted on how the appointment goes.

Warm wishes,
Heidi



#4 peanut

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Posted 19 January 2007 - 11:08 AM

oddone,
Hi. I know my rheumatologist reacted quickly to my condition because he felt it was progressing too fast. He put me on Cyclophosphomide or cytoxan via IV immediately. Cytoxan helps with lung issues which I have. For the most part I think doctors react depending on how the disease is progressing and because this is different for each person some may not be treated immediately.

My IV treatments are very tiring, but it also comes in pill form.

Best of luck,

peanut

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

#5 Michelle

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Posted 19 January 2007 - 02:04 PM

Hello,

I don't have much to add but noticed that your husband is pretty much the same age my husband. He was diagnosed last year (Dec. 05) at age 37 with limited scleroderma. The meds he takes are basically to help the symptoms. He is on cardura/(cialis as needed) for raynauds, protnix for the heartburn. He also takes either ibruprofen or naprosen(sp?) for joint issues. Raynaud's is by far his biggest issue...sometimes he walks around for hours with his hands purplish blue.

I never found out was his intial ANA was. They did tons of bloodwork at the time along with a PFT and echo. He has had some shortness of breath at times and I think they plan on repeating the PFT every year or so. At the time of diagnosis, the doctor said based on bloodwork and current symtpoms he has limited but sometimes it is hard to tell.

What was your husband main complaint at the time of diagnosis? It sounds like he has a lot of skin involvement. I just wanted to say 'hi' and sorry to hear you have to go through all of this. Keep us up to date on his second appointment.

Michelle

#6 oddone

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Posted 19 January 2007 - 04:38 PM

Hi Michelle -
My husband first started thinking he was getting ccarpal tunnel, and through tests, within 6 mo he was diagnosed withsclero (dSsc). His main symptom was skin thickening, to the point that he was a 3 Rodan on his forearms within 4 months.
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#7 peanut

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Posted 19 January 2007 - 05:28 PM

oddone,
The cytoxan has really helped my skin loosen up. Before my skin was tightening all over. Now, its soft and supple. My hand still aches and my fingers are curling a bit, but my rheumatologist says the cytoxan will hopefully head off or slow that process down. I can't imagine what horrible shape my hands would be in if I didn't start the cytoxan.

Not everyone has had my same results. He has to find what works for him.

Best of Luck,
peanut

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

#8 bookworm

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Posted 19 January 2007 - 08:01 PM

Hi everyone,

I just had a word for Michelle -- actually a question. You said your husband is on Cialis "as needed" for Raynauds and you also said "sometimes he walks around for hours with his hands purplish blue."

I am just wondering how often he actually takes the Cialis, or, in other words, how often does he feel that it is needed?

I have CREST and I also am on Cialis. I take 1/2 of a 20 mg. Cialis every night. It keeps my fingers pink (good circulation) and I rarely have any pain with Raynauds any more.

It is my understanding that getting all cold and blue and painful is damaging to the hands. Just warming them back up makes them feel better, but it doesn't repair the damage that is done each time they get too cold like that. The cold and poor circulation is what leads to those awful finger ulcers, which can cost you your fingers! So, I would think that the idea would be to prevent this from happening -- by taking the Cialis. If you wait until you're blue and in pain and then go take Cialis (because it's "needed"), it seems to me you're too late! I guess that would be better than nothing.

I'd ask the doctor if your husband couldn't take the Cialis on a regular basis and see if he can't get that Raynauds under better control.

Is anyone else taking Cialis or Viagra "as needed?" I never heard of doing it that way. It's needed all the time, as far as I'm concerned. The good thing about Cialis is that it's long lasting. I used to take half a Viagra in the morning and another half at night. With Cialis, one half a day does the job.

Mary in Texas

#9 Lori-Scleroderma Spouse

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Posted 20 January 2007 - 03:22 AM

Hi oddone

You post caught my attention. My husband was diagnosed in April 2006 with diffuse Scleroderma. He was 39 at the time. He started with swollen hands in February which they diagnosed as carpal tunnel. After treatment for the ct for a month he was sent to a rhummy. The rhummy although he said he only saw about 3 cases a year he was pretty sure he knew what it was. He was exactly right. He then sent us to a specialist at Duke University. We have been very happy with this specialist, he is involved with research and is very up with latest information. My hubby's has progressed very quickly. By July he was unable to work, due to extreme fatigue and the joint pain from arthritis. He is getting the cytoxan and has one more treatment of IVIg. We have seen improvement in his skin score and energy level.

I hope your hubby does well. I am sending positive thoughts to you and your hubby. Do you have children? If you ever need to talk, you can feel free to send me a private message. Good luck.
Lori
Scleroderma Spouse

#10 Michelle

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Posted 20 January 2007 - 04:20 AM

oddone- My husband also thought he was getting carpal tunnel. He had already had a appointment with a hand doctor and was scheduled for an EMG when his hands started turning purple and they starting looking at other causes. At this point, only the skin on his hands are thickening.

Mary-I think the reason she may have only prescribed the cialis as needed is because my husband has had issues with low blood pressure. He is also on cardura (after trying procardia with major side effects). He blood pressure after a stressful date at work will be 90/60. He was a little nervous trying the cialis (because it tends to lower bp) but did break down last weekend and took and it really seemed to work. I wil forward the information you gave me to him.

Michelle