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vdub
07-29-2011, 02:03 AM
It seems this has already been discussed, but I searched and didn't find anything....

I'm now tapering off the mtx and I'm gaining weight -- 7 pounds so far. Anyone else experience that when coming off chemo?

JanW
07-29-2011, 05:23 AM
Nothing here...but as we discussed before I am tapering much, much more slowly than you are.

vdub
07-29-2011, 07:37 AM
I am tapering much, much more slowly than you are

Yes and it will be very interesting to compare notes a couple months from now. When do you theoretically go to zero?

JanW
07-29-2011, 07:48 AM
Thanksgiving time. The goal is to get my nose fixed over the Xmas holidays (Merry Xmas to me), and my rheumy wants me still on 2 tabs then (highest the surgeon will accept and still do the surgery). He is going super slow now because, obviously, each pill that is taken away is a larger percentage of the total. I'll be at 4 tabs for a couple of months (have been for six weeks already) and then 3 for a couple of months.

I would go to zero after I'm completely healed from surgery. For what it's worth, I've had no problems reducing at all, but I had no problems on it, really. My speculation is that I went into remission pretty quickly after getting on the drug (and my numbers and clinical presentation bears that out), and just stayed stability. I actually believe that I had long periods of stability prior to diagnosis because it took a long time (five years in total) to be dx and that whole time my windpipe was shrinking in size, but very, very slowly. I was probably flaring and then going quiet over and over. None of it ever bad enough to go to the doctor about (except for the shortness of breath, which was diagnosed as asthma. But yet, I have tissue damage from the disease, so it's not a mild case, either.

vdub
07-29-2011, 08:13 AM
each pill that is taken away is a larger percentage of the total
I never looked at it that way.... You are absolutely right, it's not straight line.....

jola57
07-29-2011, 05:38 PM
No weight gain but rather slow weight loss since I went down to 7.5 (3 tabs) a week because of liver, that was 3 months ago. However, now I have 120 creatinine and 41 eGFR. So I will be seeing my rheumy in 3 weeks, and hopefully a renal consult earlier than that. I am also getting lesions (one on my forearm, one on my c/section scar, one slightly lower and two on my butt} now two more appeared on my leg. I have had them for over 3 months and corticosteroid cremes don't work. Any ideas on how to get rid of them ?

Sangye
07-29-2011, 11:44 PM
Are they Wegs lesions, Jolanta?

vdub
07-30-2011, 12:26 AM
I'm getting another blood test in about an hour, but I won't pick up the results until late this aft. Could be interesting.....

Jolanta, when you say lesions, do you mean a small open sore that won't heal?

oaktreehill
07-30-2011, 07:35 AM
I stopped taking mtx in June and went from 20mg to nothing in one week. They were hoping to move me onto azathioprine but that has been put back 2 months now so I only take pred now.

When I stopped taking mtx I noticed I suddenly dropped weight without changing my diet at all, if anything I was eating all the wrong things at the time.

jola57
07-30-2011, 01:14 PM
yes vdub, small dark open sores, and I am sure they are Wegs related, never had them before. The one on my arm, b.u.tt, and scar are clearing up, but the one left of the c/section scar has been there for over 3 months without clearing up. Its about 1/4".

vdub
07-30-2011, 01:32 PM
Not good, but having some of them clear up has to be positive. I would guess scar tissue cuts/sores would take an awfully long time to heal due to lack of blood.

I got my blood tests back today. A couple are out of range (either high or low), but no worries. C-reactive is centerline perfect. I'm still gaining weight, but not sure why.

Sangye
07-30-2011, 11:34 PM
Jolanta, that sounds like the vasculitis ulcers I had on my legs. I suggest you get a biopsy. It sounds like the Wegs might be getting more active.

jola57
07-31-2011, 12:53 PM
I think the same, but its just that one little one that will not close up. I'll give it another month, that is unless my creatinine continues to be in the 120's. As it is I am seeing my rheumy on the 12th.

Sangye
07-31-2011, 11:18 PM
Yeah, that's what mine did. I had smaller ones that closed. One larger ulcer took about 9 months to close. The other exploded into a huge ulcer (size of my palm) within a couple days. I'm glad you've got an appt coming up. My docs discounted the ulcers until biopsy showed they were vasculitic.

jola57
08-01-2011, 05:30 PM
Was there any specific treatment that you received for the ulcers or just same ol' pred/cyclo/mtx etc.

Sangye
08-02-2011, 12:02 AM
When I had the first smaller ones I was on ctx and pred but it made no difference. I wasn't on any pred when I had the giant one--only cellcept. No one really knew what to do, not even Mayo AZ. I hadn't gotten to JHU next. It was months of dermatologists, plastic surgeons, wound clinic and the worst pain I've ever experienced. What finally got things to move in the right direction was eating a Fire (Pitta) pacifying Ayurvedic diet. That changed it pretty quickly.

jola57
08-02-2011, 03:41 PM
Ah, I will try the diet. Thanks