Hi!
Hello. I have been lurking this board for a while and decided to post. I have intermediate Uveitis and had steroid injections once in my right eye and twice in my left eye. Developed cataracts and glaucoma and had surgeries for that. I am starting MTX today. All blood work and chest x-ray was normal. I am scared to death to start this pill. Oh I also have to take folic acid once a day and the MTX, 3 pills once a week. My Rheumatologist told me about the side effects and I read the glossary on this site but am still so afraid my hair might fall out! Petty I know considering it can probably save my sight. My Rheumy suggested I take the MTX before bed in case I feel sick but the hair thing is really wigging me out, pun intended! Is anyone else on this and did you lose your hair?
I was on a very large dose of MTX and, NO, I did not lose my hair. Hair loss can be associated with the doses use to treat cancer. You are on an immunologic dose, nothing like the doses used to treat cancer.
The only side effect that I had was that the MTX cured my uveitis.
Welcome to our group. Hang in there; deep breaths.
Friday night was my dosing night.
I just started MTX in October last year. You can read my questions on the Support and Coping section. I was not so much concerned about the hair loss (since I knew my dose was very low 7,5 mg/week), but about the possibility of nausea after taking the pills.
After having read the responses, I decided to take my pills on Thursday night. I have had no problems other than another bout of iritis, so my dose was upped to 10 mg/week three weeks ago. Still no nausea and no hair loss.
Re: Hi!
Hello Liz.
Thank you for your reply! I was so anxious yesterday before I took the MTX. I read the web (sometimes a bad thing to do) and it said "Of course your hair falls out." Then I made the decision that my sight is more important than my hair but I still didn't want it to fall out.
I took my dose last night and my stomach feels "icky" this morning. I also feel like I have heartburn. This is definitely not bad enough to stop me from doing normal activities today though.
You are cured? That is wonderful!! I cannot even imagine what it is like to have "normal" eyes again!
Kristy
Re: Hi!
Hi Roo and thank you for the reply!
My Rheumy did talk about finding the right dose so I may have to have mine upped as time goes by, am praying I don't, and I have to go back to him in 4 weeks for a blood test.
I am going to check out the Support and Coping section. I want to know as much as possible about this.
I wish you the best of luck!!
Kristy
Re: Hi!
Way to go, Kristy. Good for you. Your journey with IMT has started. Good luck.
MTX can cause some nausea. Take it with food. Take it in the evening with your dinner, not just before you go to bed. Most of us notice some minor things, but they diminish as we adjust to the medicine.
If you find that you do develop a sensitive stomach, then inject the medicine instead. That is what I did.
Look forward to your participation.
And, where are you and who is your rhumy. We are always looking to add to our resource list, and any rheumatologist who is collaborating with an ophthalmologist is on my good list.
Re: Hi!
Hi Liz!
Thank you for letting me know to not take it on an empty stomach! I did and yesterday had some on and off nausea. I lived on saltines all day. I was a little tired all day and felt like I couldn't remember some things. Very strange!
This morning I woke up starving and feeling 100% again!
I live in Chesapeake, Va. My Rheumy is Dr. Albert Lee in Norfolk, Va. and my retina specialist is Dr. Barry Mandell. I see him on Feb. 11th. Is that too soon to show any improvement in my eyes since I just started taking MTX? I will only have had 2 doses when I see him.
Dr. Lee told me if I cannot handle the upset stomach part of this, that I can get injections to bypass the digestive tract. I don't know if I could give them to myself though!!
By the way, I am 42 and getting married in the fall. My fiance and I were talking yesterday about wigs "If" I need one (praying I don't!!) and he wants me to get a red one and a brunette one - I am blonde. I told him he is twisted. Ha Ha. It did make me feel better though.
Glad to hear that you're feeling 100% again so soon after your first dose! I've been on MTX for over a year now, and I felt a bit off-colour for a few days after the dose originally (I did start at a higher dose though) I got used to it in time though, and find I hardly notice it now. I also had mild nausea in the beginnning, but that went away relatively quickly.
Re the hair, I have noticed some thinning, especially since the dose was upped to 25mg/week. I doubt whether anyone else has noticed though, it's definitely a very long way away from needing a wig! Like Liz has mentioned, the more noticeable hair loss would be on much higher doses than what is typically used for uveitis. For me, it's a drug I tolerate well, as long as the folic acid is also there!
Good luck with the MTX - hope you have good results with it!
Re: Hi!
Hi Anke!!
Thanks fofr replying!
Has the MTX been effective for you?
My Dr. told me I might have a loss of appetite but I found today that I ate more than I usually do!
I cannot believe I feel so wonderful today. It's almost as if yesterday did not exist!
So your hair thinned? I can deal with that! When I was told I needed MTX I kept thinking "I have had to deal with Iritis, Uveitis and now I might lose my hair too? Haven't I been through enough?"
My retina specialist believes I started with Iritis in 4/05 when my Optomoterist kept telling me I had pink eye over and over again. I developed scar tissue in my left eye and my vision is fairly poor in that eye now due to the scar tissue. I see only 20/80 in that eye and 20/30 with my right eye.
I wish you so much luck!! I am so glad I finally decided to post!
Kristy
Re: Hi!
It takes about 18-24 hours for the dose to reach its peak effect on your immune system. The effect wears off as the dosing week progresses. My understanding is that it takes about 6 weeks to decide if the drug is useful or not. By then you should know if it is having any effect and, based on what is observed (cell count), decision are made about increasing the dose.
IM dosing is much more predictable with regard to how much gets absorbed.
While taking MTX one us urged to drink 2-3 L. a day of fluids; some say a mixture of juice and water may be best. Don't get dried out. Also, skin sensitivity to sun is a real issue, as it is with many drugs. DOn't go sun bathing.
The last time I saw my specialist, his words were that we were 'tantalisingly close to remission' - almost there, just not quite yet. Which is definitely better than before - sometimes, it's just a matter of finding the right dose for you. There seems to be other stuff going on with me lately though, so I'm not sure what he'll say when I see him next.. But, I'm confident that he's the right Dr to be looking after my eyes which is very reassuring.
Hope you're not eating way more than usual with a wedding coming up...!
I am so happy to hear your are so close to remission!! That is so awesome! I am very happy for you!
I take my 2nd dose tonight and as Liz advised, I will not do it on an empty stomach this time! I have felt great (knock wood) all week, just a little tired but the past 3 days my energy level has been non stop! Oh and the eating, my Lord, I gained 1 pound in a week!! My appetite is far better than it has ever been. (I need to gain, I am 5'2" and now weigh 104) I know this can't be related to the MTX but I get food cravings for things I don't usually eat, like ice cream. I never was a big ice cream eater, maybe a bowl every 3 months but lately I want it every night and no I am not pregnant.
I now have the attitude that I am going to kick some Uveitis butt!!
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies