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Biomarker for Diffuse Scleroderma skin has been discovered!


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"Beat Down" on Methotrexate


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#1 smac0719

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Posted 21 June 2008 - 03:48 PM

Good evening all. I haven't been online in a little over a week beacuse I just haven't felt well. My Sclero specialist increased my methotrexate from 15mg to 20 mg. I take it weekly and sdtarted the new dose last week Saturday. I have felt like I have been in a fight with my body ever since. Yesterday I started feeling better, but it's time for another dose tonight :( .

I hate the feeling of no energy, fatigue and like I'm coming down with something. I am realizing now that when I have experienced this before it was around the time of an increase. I just hope it passes soon and I don't experience the hair loss side effect. I am just getting my hair back on track after a strange bout of severe dryness and shedding.
I may have Scleroderma, but Scleroderma doesn't have me!

#2 barefut

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Posted 21 June 2008 - 04:20 PM

Hi Smac~

I am sorry you aren't feeling well. Since I am not a doctor and I have never been on Methotrexate I can't tell you for sure if your fatigue and icky feeling will pass but I can venture a guess that it probably will if it is like most new med increases that I have experienced. It will just take awhile for your body to get used to it. In the mean time get plenty of rest and pace yourself on those necessary chores.

I have the bad hair blues too. Wishing you little or no hair loss and a shiny, fluffy hair day! :D

#3 RememberingToSmile

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Posted 22 June 2008 - 01:31 AM

I am sorry you are feeling this way. If it is the Methotrexate - I hope it passes soon.

I used to be on 25 mg/week and for several weeks, it would wipe out my energy for a day or two. It got better with time, though. And - after a few weeks, my muscles and joints were really happy with it. I am down to 15 mg/week and miss the higher dose.

I've met many people through RA and myositis groups who take high dose MTX, some for years. Many have switched to injection form to avoid some of the side effects.

Hang in there/Hope it works for you- And don't forget to drink lots of water.
RTS

#4 Snowbird

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Posted 22 June 2008 - 09:33 AM

Hi Smac0719

Sorry to hear you have not been doing to well lately, welcome back! I sure hope that picks up and you feel better soon...and of course, that the increase in med's help you! :)
Sending good wishes your way!

#5 smac0719

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Posted 22 June 2008 - 11:42 AM

Thanks all! I took it last night and did not feel as bad today as I did last week. Maybe since I've been on it for a while it just took that first week for my body to get used to the increase. I was even able to go to my niece's dance recital today :lol:. She been dancing since she was 5 (now 16) and this is the first recital I've attended.

RTS, I've been trying to lose weight through all of this so I have increased my water intake to a gallon (most days ;) ). I've lost 9 pounds since May with just changing my eating habits. I hope to be able to add excercise in soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#6 barefut

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Posted 23 June 2008 - 10:57 PM

Smac,

So glad you are feeling better. I have to chime in about the weight loss struggle if only to vent a little :rolleyes:

Changing eating habits is hard! My problem is consistency. I will do well for awhile and then 'life gets in the way'. As for exercising, well it's hard enough to move at all some days let alone get on the treadmill.

I can SO sympathize with anyone trying to drop a few pounds but I think it is ESPECIALLY hard for us sclerodermians, so CONGRATULATIONS on your weight loss and keep up the good eating habits. Hope you will feel like exercising soon.

Wishing you consistency and sucess!

#7 Karenlee

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Posted 24 June 2008 - 01:57 AM

Smac,

Glad to hear you are feeling better. And congrats on the 9 lbs. Thats awesome :)

Barefut,

Sclerodermian? that's a first for me Lol Sounds like we should have our own country. :D

Karen

#8 smac0719

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Posted 24 June 2008 - 12:55 PM

I like "Sclerodermians" :lol:. Losing weight has been hard. I have only been able to lose by changing my diet. Having to do so due to my gastro problems certainly helped. I'm also steering clear of foods like bread, rice, pasta, sugar. Bread is the hardest as I've never met a bread I didn't eat (except hush puppies-yuck!) I am trying to muster enough energy to exercise, but by time I get home from work and spend time with my sons, there isn't much energy left. :( Going to keep trying though.

Thanks ladies!
I may have Scleroderma, but Scleroderma doesn't have me!

#9 razz

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Posted 24 June 2008 - 02:25 PM

Smac,

One of the treatments I had involved a holistic diet. No white flour, sugar, diary or deep fried foods. I ate lots of fruit, vegetables, brown rice, nuts, millet, organic chicken, fish (if organic is expensive, use regular) and filtered water (no soda pop). I started dropping weight real fast, my daughter too. One of her teachers asked her if she was okay, that's how well it works. Unfortunately for me, one of my issues withsclero was low weight so this exacerbated my problem. I had to go back to regular eating. It works for anyone trying to lose weight. I love bread too. Yummy.

Hope your energy comes back! My daughters are grown now, but I remember 10 years ago when they were 10 and 12, when they ran circles around me. (That' how old they were when I developed scleroderma).

Barefut, I like "sclerodermians". That's funny! Does that make our town, Sclerodermia?


Razz

Take it slow, like the tortoise who outsmarted the rabbit
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