Methotrexate for linear scleroderma

[feverdreams]

Hi all, my first post here/anywhere about my illness. I’m feeling very anxious. I’ve read through the forums and know that I am very fortunate to be as healthy as I am, so I’m sorry for complaining.

I have recently (3 months ago) been diagnosed with linear scleroderma. I had it previously from age 9-15, and was treated with 20mg methotrexate a week.

I’m 26 now and noticed new patches of discolouration on my leg so visited a rheumatologist. As soon as I saw her she said I had to go back on the methotrexate, starting with 10mg a week but with a view to increasing this as soon as possible.

Since starting treatment I have suffered from many negative side effects. I take preventative medication for migraines (Propanalol) but this doesn’t seem to work anymore. I feel tired and lethargic, and feel that my depression and anxiety (treated with Fluoxitine) have worsened.

I have also been prone to infections and illnesses, and I’m currently suffering from severe flu. I haven’t felt this ill since I was a child and on methotrexate the first time.

I don’t feel very supported in this. The Dr seemed to jump to methotrexate immediately without discussing options. I have tried to contact them with my concerns but am always told to leave a message, and never get a call back.

Sorry for this long post, I’m not even sure what I’m trying to say. Currently I feel that since my scleroderma doesn’t affect me at all (it’s only cosmetic, I’ve never suffered any joint pain or mobility issues) I’d rather not be on any treatment at all.

[Roselda]

Hello, I too have linear morphoea and plaque morphoea with scleroderma all in my lower legs. I take methotrexate 25gms a week and fluoxetine every day but not for depression, it also opens the blood vessels to aid circulation. My legs sometimes feel as if they are on fire or feel like they are blocks of ice when they are neither and feel normal. Standing still is very painful, walking makes the pain go away. The skin on both legs is tight and shiny and my ankles feel as if they are being gripped in a vice. Originally I had the symptoms in my hands which I could bearly move and after taking methotrexate are now completely better. The fluoxetine for the blood vessels have had the advantage of lifting my spirits to help cope with this awful condition. I wish you the best, keep pushing for proper treatment and don't give up.

[feverdreams in reply to Roselda]

Hi Roselda, thank you for your reply. I’m really glad that that the methotrexate took care of the pain in your hands, I hope you find some relief for your legs too. I didn’t know fluoxitine was used for other things too, that’s interesting!

[Intimeslikethese]

Hi, I wanted to wish you the best in feeling better soon. When it comes to the migraine meds no longer working, I wanted to suggest cutting out caffeine, alcohol, and lowering salt and sugar intake. If you are on the computer a lot, I think they suggest blue light eyewear lens. I hope your doctors adjust your meds soon. I take ergocal 1.25 mg one/weekly which reduces my fatigue. It is VitD2.