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Biomarker for Diffuse Scleroderma skin has been discovered!


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Went to the dermatologist on Friday...


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#1 beedee

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Posted 20 April 2008 - 08:46 AM

Hello everyone,
I went back to my dermatologist friday and the appointment went well. I was so nervous about this appointment, and part of that was due to the fact that I knew I had to get steroid injections for my morphea.
He pretty well said the same thing he has always been saying, so there were no surprises. I knew that steroid injections were the next step and then it was methotrexate, if needed. He talked about the dangers of methotrexate, just in case I have to go on it.
He had prescribed Kenalog-10 steroid injections for me to bring to the next appointment if there wasn't improvement. So I picked them up on my way to the appointment.
He said that he has seen a lot of success with the injections in some of his other patients with morphea, which was nice to hear. He said if the kenalog-10 doesn't seem to be effective, he will try the kenalog-40, a stronger dose.
The nurse did the injections and she had to do several seperate injections around the perimeter of each spot basically. I lost count, but I know it was more than 20 injections, I am thinking around 25. It was very very painful, as my flesh is so hard in those areas. I am pretty sore and stingy tonight and I have several bruises. I am just glad it is over and hopefully we'll be able to avoid the methotrexate.
I have to continue with the ointments, and the light therapy too. He said that even though I don't see improvement from the light therapy, it is likely preventing new spots. I never thought about it this way before.
I have to go back and see the nurse on June 13, likely for more injections. We just have to see how the improvement goes.
Just thought I would let you know how it went!
Danielle

#2 Snowbird

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Posted 20 April 2008 - 11:55 AM

Hi Danielle

Glad you made it though that, 20-25 or more injections, yeeeouch!! :o

Although you are sore now and will bruise as you said, thank goodness those shots are now behind you :) !

Hopefully, after a good nights rest, the soreness and stinging will settle down and you will feel much better by tomorrow. I really hope treatment this brings you the success you're hoping for!

It's good to get your update, let us know how you feel tomorrow if you can.
Sending good wishes your way!

#3 truman

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Posted 20 April 2008 - 11:56 AM

Danielle:

I never had a problem with the methotratxate. Had to give it up to recent surgery and beginning to feel the effects of such. I can't wait until I get back on it, and it will be at a higher dosage. Skin softened up and arm was movable.

What is your fear of methotarxate?
Tru

It is what it is...........

#4 beedee

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Posted 20 April 2008 - 12:28 PM

I'm actually feeling much better already. Unfortunately, I will probably have to get these injections a couple more times, it depends on the effectiveness. I just hope this is what gets rid of the spots.
As for methotrexate, I'm not really afraid of it, it just seems like it has nasty side effects, and this liver thing is a little scary. Truman, how do they monitor your liver while on it, is it just bloodwork, or do they have to do liver biopsies?
I do not have systemic scleroderma, just morphea. It has spread considerably, and I have about 10 spots of thickened skin, that look like bruising. Some of the spots are very very hard underneath. Is methotrexate commonly used for morphea?
Thanks!
Danielle

#5 janey

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Posted 20 April 2008 - 03:06 PM

Danielle,
So glad to read that you are feeling better from such an unpleasant experience. After reading your experience I won't be complaining anymore about a few pokes for an IV line. I hpe this treatment works for you.

Apparently methotrexate has been found to be effective for morphea. Here's our section on methotrexate for morphea. I was on MTX for 3 years for SSc and didn't have any problems. I did have to get my liver enzymes checked once a month, but never any need to a biopsy. I'm certainly no doctor but I would think a biopsy would be done only if your liver enzymes were high and stayed that way even after the MTX was stopped.

Glad to hear you're doing better.


Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 truman

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Posted 21 April 2008 - 01:10 AM

I never had monitoring of any kind, or even blood tests with being on Methotrexate. This concerns me and I don't know why he doesn't monitor it.
Tru

It is what it is...........

#7 Lucy

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Posted 21 April 2008 - 05:04 AM

Hi Ladies,

I was on Methotraxate - I went off it though because it was not helping me the SD was still rapidly progressing and I did not feel good for two days after I took the drug. When I was on it, my doctor had blood work done every month to monitor my Liver Enzymes.

Hope this helps.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#8 epasen

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Posted 21 April 2008 - 05:06 AM

Danielle, glad to hear you're feelin better :) I hope it won't be necessary for you to go on Methotrexate! :) Take care, Emmi

#9 Sweet

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Posted 21 April 2008 - 08:55 AM

Hey Danielle,

Thanks for the update. I'm so glad you are doing a bit better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Charmaine

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Posted 28 April 2008 - 11:12 AM

Methotrexate is a very toxic drug, and I, too, have resisted being put on it. THe blood thing (liver) is very trying, especially since I believe my morphea was caused by a year on the phen-fen drugs (which caused pulmonary fibrosis and heart problems in some patients before it was taken off the marker).

I took cell cept for six weeks, saw no improvement in anything and felt sick every day. Well, I also have lichen sclerosis in addition to morphea, and I didn't need anything that messed with going to the bathroom or made me nauseous. I am barely able to cope with the daily bathroom problems (have had LIS in 2005, but never back to normal, just somewhat less pain when I go!).

I discontinued light treatments as they too did not seem to help, and I hated taking the soralens drug before hand and wearing the eye protection. Was difficult to work with goggles on at work when I went for treatment during lunch. UGH!

charmaine