I am stressing out on this methotrexate!! I have been on it since the end of June and I was wondering how long the docs usually keep you on it?? I have been loosing large amounts of hair and my eyebrows and I will be bald before the months end. I know its a bit superficial, but damn lupus is taking everything away from me right in front of my eyes and I can't do a thing about it.I hate this so much. Also, does anyone know of a good place to get wigs? I have never been in the market for one before.
Thanks for letting me cry about this. Every time i get in the shower, I am crying. Every time I look at my kids worried faces, it kills me. I am quickly loosing myself and I can't stop this no matter how hard I try. I go to all of my appt. and take all of the meds prescribed and it still gets worse. I read about some of you going into remission and it seems to me impossible to me. I have been in a constant down hill spiral for three and a half years now and it isn't getting better. I think I need some anxiety meds now, to keep me calm as I watch all of my hair fall out. My eight year old daughter told me while we were saying prayers tonight, that it's going to be ok mom, that I can just dress like a boy when all of my hair falls out because some boys are bald...
When my hair started falling out, I contacted local cancer center on where to get a wig. Locks for love, so forth always willing to help point you in the right direction. Even if it seems impossible to fit into your schedule, find a local support group. They will know local resources and they are in the same boat as us.
I’ve taken methotrexate for two months now. My doctor told me hair falling out on this dose was rare. Well it is. I pull off clumps everyday. I was wondering how long I’ll be on it too. It makes me sick for about two days a week and I can’t sleep. I’m grateful to not have flares but at what price?
I've been on methotrexate for 3 months and my doctor also prescribed folic acid. I was told taking the folic acid would help to minimize the side effects like hair loss from taking methotrexate. I was also told to make sure I have adequate protein into my diet. No significant loss so far. You may want to ask you doctor to prescribe.
I am taking it. I guess I should talk to her about it further though. Do you get nauseated and ill from taking it? I usually take it Saturday night but find myself ill on Mondays and Tuesdays because of it.
i also am going bald,but im not on any lupus meds right now and havent been for a yr because my body cant tolerate tthem,im on predisone,low dose their weaning me off.so im not so sure its not just the lupus thats causing us to go bald.but thats just a small thing compared to all the other lovely things it does do us.i have been battleing something sence dec of 2012,my face is numb and my tounge feels like its been scalded,everthing taste like im chewing on cottonballs,i get these electic shocks through my hole head,ive had every test and seen every kind of dr,no one knows what to do,its very painful,my systom doesnt handle drugs very well so im limited on what they can do,just seen a new neo dr and shes tring me on very low dose of lyrica to see if my body will except it,then we will go up from there,so far so good,its also afecting my brain,cause im in a fog alot and i cant think sometimes ,so if my spelling is bad please over look it,this is one of the worst conditions ive ever dealt with and i have had alot,including brain anuyisums and surgery fto fix them.hang in there,hope things gets better for all of us.
Kimkitkitten said:
I am taking it. I guess I should talk to her about it further though. Do you get nauseated and ill from taking it? I usually take it Saturday night but find myself ill on Mondays and Tuesdays because of it.
Yes, I do get nauseated and was prescribed Zofran. I take the disintegrating tablets which help a lot. I also take my methotrexate on Saturday afraid of some of the side effects. I have terrible muscle pains and numbness in my upper and lower arm which started after my 2nd dose. I spoke to the doctor who did not think it was the methotrexate and prescribed Cymbalta. Nothing has reduced the pain except not using my arm. I was told I may need to take for a few months before seeing improvement.
Kimkitkitten said:
I am taking it. I guess I should talk to her about it further though. Do you get nauseated and ill from taking it? I usually take it Saturday night but find myself ill on Mondays and Tuesdays because of it.
My doctor just increased my methotrexate dose and I am nauseous, tired and my hair is falling out. I think it is giving me mood swings and depression. My husband says I am going crazy. I discussed this with my doc and they said stay on it 8 more weeks (this is week 4) and if it does not work and side effects are still bad we can try something else.
Shan- I know how you feel- I have never had a remission and the only "relief" I get is high doses of prednisone and then I get bad side effects. My daughter is 3 and I hate how this disease has/ will affect her. She will ask if I have taken my meds, if I am sick today. The other day I could not unbuckle her car seat and I just started crying in the parking lot and she said "its ok mom my hands work see I can do it myself". I don't think I have ever been this low. I think I need to get off of the methotrexate.
Methotrexate is hard, it chemo therapy after all… I started injections of it last October but stopped by December because it was affecting my blood clotting disorder and causing more superficial thrombosis. . I took zofran ( still do) for nausea and lost large areas of hair that have grown back but not exactly the same. .lupus is a rough disease and unfortunately we have to take even rougher medicines to battle it. My daughter is almost fifteen , she’s my world. It’s so hard for our little babies to watch their mothers suffer and because we’re mothers we try so hard to shield them from our pain and problems in order to protect their well being. . I’ve never had remission either just continues decline in my condition … I would get upset too reading about success stories of remissions and having a normal life again, well I was happy for them though:) I know it’s hard but you just have to take life one day at a time, if you need a little anti anxiety meds it’s ok too! Best wishes xoxo
Lupus can cause your hair to fall out. My hair has also been falling out & is a lot thinner than before Lupus. There are shampos & hair treatments like nioxin that help keep hair loss under control. My eyelashes are also shorter than they were. I gained 100+ Lbs on steroids from 120 lbs to 220 lbs, developed Type II Diabetes, so I can understand your fears. I would talk to your Dr & see what he thinks you should do about the anxiety. I tried Methotrexate but it didn't work. Ask your Dr how long he feels you need to be on it. Your lab work & symptoms will determine your treatment. Hope things get better soon
I’m so sorry for you. I feel the same way. One thing to remember is that it may not be the methotrexate but the lupus itself. Remember, our lovely evil L also causes hair loss. I lost so much before I even started methotrexate. Now, I’m on meth 8mg every sat and my hair’s ok. My doc said if its the meth causing your hair loss it will fall out all over. If it’s because of the lupus, it will fall out in a “v” pattern from the front to the back. Just something to consider before counting out a med that might work. Good luck and hang in there!
I have been on methotrexate for over a year. I am currently taking 6 pills each week. I take folic acid to help with ulcers in mouth and has been successful. The only side effect I see is about 2 days later I have brain fog. Good luck
Wow Michele McNeill! Sorry about your son having drug problems but do you really feel this is an appropriate answer to a woman struggling with the woes of Methotrexate?? to say “if mom takes pain meds I can too” really?..yes this a public forum and we’re all here to share our thoughts and feelings but as a mother myself I’m a bit shocked and a little a fended… you’re right in a way, to have narcotics in a home with children, especially teenagers means having to be more responsible, putting those meds in a locked cabinet and of course talking to them about the dangers of prescription drugs. I’m only speaking for myself but I’m sure Im not the only one that feels put off .good luck with your son xo
Crying and venting won't hurt you mate release the lot out your system because that will help for a start off and bless your daughter she loves you so much.
I've been on methotrexate two weeks now...just add fatigue and diarrhea mainly and the sister who started it said very rare for hair to fall out even though it is a side affect but it would'nt touch me much...as i have my head shaved in the skin head...got no choice my hair was falling out in chunks and i'm not a doctor to diagnose but how you say things are getting more i'd say Lupus is doing it, as it can make your hair come out at different rates.
The sister told me that if my blood came back fine and it kept going ok, that i'd be on the drug for life...as this med slows down the precessing of cells which make Lupus, RA etc progress more, where we suffer more and are you taking folic acid daily which helps minimize side affects more.
There are 3 main issues to how long you take methotrexate for ...love & hugs Terri :)
1. or as long as it works really well in controlling the disease
2. it doesn’t cause you to have any side effects that worry you (or me)
3. there are no abnormalities in any of the monitoring tests we will do.
Your welcome from us all and that should have been given to you straight away with the methotrexate...are you having the methotrexate in tablet form and how much folic are you to take daily?....when i take my tablets every friday on that day i don't take the folic acid which the sister told me to do but on the saturday i do take it, as she said your system benefits from the folic acid better the next day regarding any side affects...so just giving abit of advice.
shan said:
Thank you so much for all the tips. I called my dr and she perscribed he folic acid. Hopefully it will slow this down a bit . Hoping for the bet.
The sister told me that if my body excepts the methotrexate and the blood work comes back ok...then i'll be on it for life and most likely my rheumo will up it...it's all down to blood work, side affects and what your rheumo thinks :)
