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birder
01-13-2010, 01:14 PM
Hi,

I guess I should give a little background first. I have scleroderma and lupus as well as a couple of other problems. The sleroderma or lupus gave me interstitial lung disease. I seen all the proper specialist and my rheumatologist decided to put me on cytoxin for six months. I did 1500mg IV once a month. It had alot of lousy side affects but I suppose it could have been worse.

Last week I went and seen my pulmonolgist who did a pulmonary function test and a cat scan. They both looked great. Being an x-ray tech I'm able to read a cat scan pretty good and the difference between last July's cat scan and last weeks was remarkable. I still have some permanent scarring on my lungs which I expected, but there was no sign of the active disease progressing as there was in July.

So the cytoxin worked but,(yes this is where the but comes in) they won't say I 'm in remission. In fact they're still afraid it might come back,even though they can't find any sign of that happening. So they decided the best thing for me to do was to go on methotrexate for a year or two. This is to make sure the lung disease does'nt come back. I started the methotrexate last week and it's not much fun. I'm not looking forward to this next year (or two?).

So it's been a god news bad news type of month. But I am looking forward to some hikes in the mountains this year and now that my lungs have cleared up some then maybe that's possible.

Thanks for reading,
Birder

karenboss
01-13-2010, 03:23 PM
I'm so happy for you! I know it is still an uphill climb, but there is so much doom and gloom about scoleoderma that your good report is worth a good deal of celebrating!

I am going in for lung testing on the 29th, my first. It's a PF test, EKG echocardogram and chest x-ray. Am a bit nervous so i celebrate with you your good news.

Take care - and good luck with the mtx - I hear it is no picnic either.

Saysusie
01-24-2010, 10:43 AM
Mixed news seems to be our normal! But, I am glad that your lungs have responded well to the Cytoxin and hopefully the maintenance dose of Methotrexate will keep your lungs in fairly good shape.
I know that Methotrexate is a difficult drug and can make you sick, but it is only once per week and hopefully, you are able to do well the other days of the week.
I hope that you continue to improve and that you are able to hike in the mountains very soon.

Peace and Blessings
Namaste
Saysusie

SugarSnit
01-27-2010, 02:02 AM
Thanks for posting your background. I've been pouring through here and in other places looking for iv /liquid cytoxan and how it went. I'm sorry you're still dealing with it -- but I'm glad you're able to move around. I guess this is how it works... but best wishes as you continue to plan and I so hope you do get those hikes and for continued lung and respiratory improvement.

love and light!
Melissa

mountaindreamer
01-27-2010, 08:33 PM
hi birder,

sorry about all of your problems, but i am so glad that the cytoxan worked for you.

I also take methotrexate (mtx). Do you take the pill of the injection. The pill has worse stomach side effects than the injection. I give myself a shot once a week, and i take the following day off - i call it my weekly vacation. The side effects do seem to lessen with time, so i hope yours will get easier on you.

ssingh
01-27-2010, 08:48 PM
My lupus only responded to cytoxan not even to predinisone up 120mg a day. After 5 treatments I have on cellcept ever since for 9 years now.

birder
01-28-2010, 12:55 PM
Thanks for all your responses.
Mountaindreamer-I take the pill form and glad of it. I don't know if I could give myself shots. I don't mind getting them, but the the thought of giving them to myself freaks me out a little.
This is my forth week on MTX and the side affects haven't been too bad but I stick close to home the next day (I take them at night) just in case.

Have great day everyone,
Birder