Not fair

Sooo im getting put on methotrexate since nothings really helping. Its so hard cause I can go so many days with no symptoms then days where I want to curl up and die. But hopefully the new medication helps.. im also have d12 deficiency so have to get injections for the next two weeks every second day!! And with the methotrexate I have to have constant blood tests to monitor everything. .. considering I HATE needles/jags im doing pretty well!!!

All I want for Christmas is a new immune system!!!!!

PLEASE PLEASE PLEASE let me know if anyone on here takes methotrexate and please let me know how it is for you, and side effects etc!? Be honest ;)

Thank you, love to all xxx

I was on methotrexate. It help a little. I have spent most of the past five years in bed so i have begged and prayed for relief. I am on steriods an they realky help
hangin jj

I started methtrexate last friday and I feel great. I take 12.5mg per week. I have no pain but I am tired. I wear a mask when I go out since I am still on prednisone. So far so good. I wish you good luck.

I’m currently on methotrexate. I cannot take steroid pills so I usually get a shot directly into my trouble spot (hip). Dr. Just informed me that no more shots while on methotrexate because it lowers immune system dangerously during flu season. Had no idea about that kind of compromise. I take 1 2.5mg once a week now. Was at 5 pills once a week. They made me pukey at first. Taking just before bed and having no priorities the next day helped a lot. Lots of peeps have no problem with it. It has really helped decrease severity of some symptoms. Keep us posted how you’re doing on it! Good luck!

I took it along time ago for a week. I really didn’t give it a chance, because it made me feel nauseous and I had a migraine all week. I wish I had tried harder. Now I get Botox for my migraines, which works really well. If it makes you feel sick, the doctor can give you an anti-nausea prescription.

I think you will find that many of us on here take Methotrexate and even more of us feel it is all unfair and that a new immune system would be 1st choice for Xmas for many!!

That being said, I too am on Methotrexate, have been for 3 weeks now. Still in pain, still tired, still have trouble getting out of bed, BUT I am told that if I can hang in there (and some days that is really hard) I should start to feel relief by Xmas. That the Methotrexate will take some 8 weeks or so to "kick" in.

Being in Australia, we are going into summer, so flu season isn't a consideration here, however, I avoid cortisone like the plague as it keeps me awake. However, I have had to take pred on a few occasions since starting the Methotrexate due to the intense joint pain it has brought with it.

In summery, keep it together, take the drugs necessary (under supervision) and hang in there. You are far from alone. I hope there is a light at the end of the Methotrexate tunnel for all of us. That would make for one fantastic Xmas.

I took methotrexate for a while in pill form, a total of 10mg once a week. I would feel like crap for two days after taking it, then noticed I felt better by the third day. Overall, it didn’t help me enough to keep me on it. But I know it has helped a lot of people. It takes time, sometimes a few months, to see results. At least that was my case. I know saying, hang in there, doesn’t do much to make you feel better. Just do the best you can and keep posting. There are a lot of knowledgeable people on this site who can offer helpful information and support. Praying for you.

I take Methotrexate 15mg per week. I have been on it for about four months. It is helping with my joint pain and labs but does not help much for the fatigue yet. I feel sick for two days after taking it then I am okay by day three. It gives me a stomach ache, headache, and dizziness. I am staying on it for now because the side effects are lessening and I am hoping it will help me get off of prednisone.

I take methotrexate. I’ve had two noticeable side effects: 1) weight gain despite regular exercise and modified diet all aimed at weight loss and 2) according to my husband, I’ve not been myself since starting this med. It appears to make me cranky and “not nice”, short tempered and I say things that are hurtful where i have not behaved this way before. I understand the Methotrexate is working to suppress my immune system and thus help reduce the damage its doing over a long period of time however, I personally do not see any pain relief from this med. My relief and ability-to-get-up-and-function med is Motrin. In significant quantities. Bad as it is for me I could t get through a day on my feet without it. Or some other NSAID to take. I take the methotrexate because it is working silently in the background to keep things from getting worse and I live on Motrin to have a life period.

I have been on methotrexate for years and years. The worst side effect is the nauseau that follows, I am so used to getting the icky stomach that all I have to do is look at the little vial with yellow liquid and I start to feel queasy. Lol. But there are anti-nausea meds that help. The good side is that I think it helped my labs and thus I was able to wean off the prednisone which I was on for ten years and was destroying my bones. Now I only periodically have to go back on it when my lungs get inflamed etc.
The thing with the biologics is you must give them time to take over your systems- 8 to 12 weeks sometime to really get a sense of it working. I suggest keeping a symptom journal with a baseline of when your start and you can track what and how severe your symptoms are daily. I pray they will be better and ease up for you. Please keep us posted. Get your regular bloodwork- very important.
Peace and healing hugs, Mare

OMGoodness, I just read this answer I posted and I do sound cranky and shirt-tempered. I apologize.



Susan Roberts said:

I take methotrexate. I’ve had two noticeable side effects: 1) weight gain despite regular exercise and modified diet all aimed at weight loss and 2) according to my husband, I’ve not been myself since starting this med. It appears to make me cranky and “not nice”, short tempered and I say things that are hurtful where i have not behaved this way before. I understand the Methotrexate is working to suppress my immune system and thus help reduce the damage its doing over a long period of time however, I personally do not see any pain relief from this med. My relief and ability-to-get-up-and-function med is Motrin. In significant quantities. Bad as it is for me I could t get through a day on my feet without it. Or some other NSAID to take. I take the methotrexate because it is working silently in the background to keep things from getting worse and I live on Motrin to have a life period.

I’ve been on methotrexate for some months now, I take mine before bedtime to avoid/try to sleep through the side effects. Drink plenty of water too. I’ve gained 50 pounds in almost 2 years since I’ve been dx and basically bedridden. In the past couple of months I’m trying to get a lil mobility, I never thought just driving my children to school would be such a accomplishment to me… When 2 years ago, I took the smallest things for granted. Smh

I am periodically on and off methotrexate for lupus pericarditis. It does work for me big time. But my liver does have to take a break from it. It is quite toxic to the liver. Somewhat like a balancing act. Butler I am happy to have it in my lupus toolbox.

For several years I asked Santa for a new body...I've yet to receive one. Must be that I'm naughty.

Google methotrexate, go on the manufactures website and look at the possible side effects. Just like lupus we are each different, we each react to meds differently. We can't compare how one of us reacts to the other. I due sympathize with you. Some of the side effects for meds are brutal.

I have been on methotrexite for the past yr. They put me on that as soon as I was diagnosed without trying something less dangerous first, not sure why, but so far doing ok. I was also on prednisone, but recently stopped taking it. As of right now being just on the methotrexite 15 mg a week, I am doing ok so far. Still have some pain, fatigue, etc but not like I did a yr ago. My last bloodwork was in Sept and SED rate was at 34, down from 58 last Dec. No side effects so far from the meds, also taking 800 mcg folic acid every day for past yr. I also, on my own started taking vit D3, 2000iu and vit K2 and also B complex, based on some personal research I have done since my Dr is not very patient friendly :)

Hello I take the methotrexate injections weekly I have to take them because of stomach issues it took about 8weeks before I saw a difference it helps me a lot but at times have burning bad taste in mouth but that could be because of injection form but other than that it helps I think I might be in remission I see reumy in first week of dec I hope it helps you too good luck and god bless you