Went to Rheumy again. I've felt better since he boosted MTX to 20 mg. a week, however my hair is going south; and quickly. I had thin hair (probably from the Lupus) for a long time, but now it's hard to do "the sweep" and look okay. Anyway, he was going to move the MTX up higher, but has decided to add in another form of Folic Acid. He still wants me on the one mg of folic acid daiy, but now wants 2 tablets of Leucovorin calcium (10 mg) once a week, 3-10 hours after I take my MTX. He said this may help with to stabalize the hair. If it works, next check up he'll boost the MTX.
My concern with the 10 mg. of Prednisone...I'm starving all the time, gaining weight and getting puffy. I'd like to get off of it. He feels I'll be on it probably forever, but the goal is to lower the dose. We decided to do 10 mg. one day and 5 mg. the next day and see if that helps.
So my question: Has anyone had the Leucovorin and has it helped with hair loss? And, does anyone cut their Prednisone like that? Does it help with the hunger/puffyness? I'm wondering how much pain will come back with it like this?
I guess nothing is simple.................So are you taking 10mg one day, then 5mg the next, then 10mg, then 5mg? I'm confused????
Thanks Katie.
Yes, going to try 10 mg one day, next day 5 mg, next day 10 mg., etc. instead of 10 mg every day.
It's not so much being starving, but craving stuff. I've never been like this and it is driving me nuts. An example, I have been queen of skipping meals (not good, I know) then started 3 meals a day having a yogurt of half a sandwich for lunch. Now I can hoover a whole sandwich at lunch and although I don't, I could keep eating until the next meal. After having dinner, I'm wanting salt or sugar, etc., etc....It just is the pits.
I'm going to look up that new medicine now. He said it may help with the hair, but must be taken 8-10 after MTX so it doesn't block the effects of that.
I knew this was a long process....oh well.........but a chubby bald gal isn't cute, lol. I have had this same experience. Yes, the Leucovorin will help. It takes time for the new hair to grow back in but it does. I don't think my hair is as thick as it used to be but much better than when it started to fall out. I don't understand why they just don't prescribe the Leucovorin when they up the Mthx. Why put everyone through the hair loss--I think that is so unkind and uncaring to people. There are things you can do in the meantime to help hid the hairloss. I found getting my hair cut in layers helped and I use hair thickeners. Patene products seemed to work well for me without breaking my budget further after all the drug co-pays. My hair was oily before the Mthx but now I find it is dry--so a good conditioner is something you will probably need. I used to wash my hair everyday--now it is every3-4 days. they don't automatically prescribe high dose folic acid bwith MTX because folic acid inhibits the action of the MTX So even though you a prescribed a higher dose of MTX with leucovorin you may get the effect of a lower dose. Many placed do not automatically prescribed folic acid with MTX for this reason. They will only prescribe it if side effects occur
Thanks guys!
I have been using Nioxin products for years. I hope this new drug will at least stop me from losing more. We'll see.
Anyway, I appreciate being able to whine and ask questions and have you all there for support. Thank you.
When I dropped to 5mg of pred my cravings went away. So did the "seefood" diet.