I have been sitting on the script for the past week and a half because Immuron was horrible for me I am afraid Methotextrate may have bad side effects too. Anybody else have this issue?
I recently received a second opinion from a rheumatologist who suggested I try methotrexate. I had adverse side effects with Benlysta and I’m also afraid to try methotrexate. I’m sure people have had a lot of experience with it. They just may not be awake yet. 
Hello Tammy Jean,
All medications for whatever purpose affects individuals in a different way and i should know after 28yrs of being a pharmacy junky.
I was put on Dapsone a drug used rarely but more or less the same side affects of methotrexate and with regular bloods being done and my body rejected it and it kicked my organs off and i went yellow...my rheumo as been straight with me with so many issues going on there's no help for me but i have'nt given up as i need release and persuaded him hard to put me on methotrexate besides taking plaquenil daily....i'll admit i was getting nervous before i started it and come friday it will be my 3rd week on it and you must take folic acid also daily as that minimizes any side affects.
The day you take methotrexate you leave taking the folic acid as your body gets no benefit but you take it daily afterwards till you take the methotrexate again...i asked the sister if i could take it at night,she said all the better as any side affects are being slept off through the night which helps a great deal.
So i take it at 7-30pm half hour after my evening meal and all i've had from it is fatigue and slight diarrhea the first week that happened on the sunday night and last week the saturday...my body is fatigued abit longer this time and im typing this tied and feeling weak.
Methotrexate if you can master it is an excellent drug for slowing down the active cells of Lupus and it can take up to 6mths to work....there's no harm in trialling it and if it affects you, you can always come off it.
Love Terri :)
Hey Tammy,
I was on methotrexate for a couple of months and I did not experience any side effects. In fact, it didn't seem to be doing anything for me. Sad but true. Best wishes!
Been taking methotrexate for over a yr now and no side affects, but I also take leucovor 8 hours after to minimize the side affects you could get taking methotrexate. Good luck.
Dear Tammy Jean: I hesitated on responding to you this morning, however, you must know I am one of the very few on this site (I believe) that had issues with MTX. I only took it for 6 weeks, however, did notice it helped my Lichen Sclerosus, Psoraisis, and possibly inflammation factors. After six weeks, I was one of the few (again, small percentage) that got infections (staph, strep in same area as staph - abdomen, which was strange) and ear infections. Since you must take it each week, all they did was stop the med and treat me with lots of different antibiotics which got rid of everything. So, I am now taking Plaquenil (which has very few side effects, however, does not work as fast). So, from the other side of the picture, I do want you to know that yes, I had issues, but they were quickly resolved; not enjoyable at the time, but resolved. Have been on Plaquenil two weeks to date and Rheumy says I likely will not experience any side effects with it. So hoping for positive results. He has also ordered a Biologic (which I have been putting off for same reason, but fear of the side effects of these meds used to stop these diseases should not prevent you from trying the meds as the diseases themselves can give you the same illnesses, if not worse. Hugs to you, Dee
Hi Tammy, I have been taking 15 mg or six tabs of methotrexate since June and with the pills I got severe burning nausea. I tried taking all kinds of anti nausea medication prior to taking the metho, but it didn't help. Soooo, I asked my doctor for the injections, which my husband gives me, and I didn't have the nausea. I mixed the injection with 2 ml of lidocaine to ease the pain of it and it worked great. After I take this medication, I will be pretty much out of it for two days, then I have energy for about 2 to 3 days after, and I finally now am experiencing some pain relief. By the fourth day I start feeling tired and yucky again. But I get a couple OK days a week and I'm hoping it will keep getting better the longer I take it. I take it on the weekend (Friday night), because I work during the week and wouldn't be able to function. I explain to people that it feels kind of like you are in a three D dimension after taking it. That's just my experience, but everyone is different. I also have been loosing my hair which could be from a flare, but I'm not sure because it started falling out when I started the methotrexate. Other fellow lupies have said that they didn't experience any hair loss while they were on it. So, it really is different with everyone, but when I started metho, I was desperate to try anything that would help because I hurt so badly. It's worth a try. It could be the right drug for you.
Hugs, Shannon
Hello Shannon,
Your symptoms are similar to mine since i've been on it more fatigue but i'll keep with the drug as long as my bloods keepcoming in ok and i go for my 1st lot this friday...did you get the folic acid like i mentioned?
Terri :)
Hi Terri, thank you for always giving the best advice. After I read what you had written, I texted my Dr and she sent it to my pharmacy. I truely Appreciate it. I hope the prescription strength works better cause I’ve been taking the OTC since I have been sick. I think it is 600 mg or mcg.
Shannon
Hi Shannon,
Your welcome and you can't beat having pharmacy meds than those over the counter ones and if you don't mind how much folic acid have you got to take daily...i take 5mg because of being an anemic and having B12 Jabs the sister said it was enough but remember not to take it on the day you take the methotrexate.
Hugs Terri :)
Dr only ordered 2mg to start, buy I’m not anemic yet so that might be why it is so low. I won’t take it on my days that I take metho. Thanks so much.
Shannon
Shannon thanks for getting back to me and as long as your on a dosage that's fine, mines 5mg to match with my jab but if you ever do need meds from over the counter in a pharmacy...always let them know first your on methotrexate.
Takecare Terri :)
shan said:
Dr only ordered 2mg to start, buy I'm not anemic yet so that might be why it is so low. I won't take it on my days that I take metho. Thanks so much.
Shannon
thank you all for your support, I did get a scrip for folic acid with it so I will be sure to take that too. :)
I tried the pill form of metho several times and it made me sick each time. I've had the folic acid along with it, too. Now, we just started the injectible form of metho and I give myself a shot once per week. I don't seem to have the nausea right away, but I'm basically nauseated all of the time from one thing or another. I have GERD and tummy troubles all of the time.
Good luck!
Lori
Arava and Imuran didn't work for me. We tried Plaquenil and it didn't do anything for me, either. The main thing with Plaq is having your eyes checked every six months. Benlysta killed me...literally. Some meds do well for Lupus patients while many of us can't tolerate them. Prednisone is doing me in and we're trying the metho to try and wean me off of it...nothing has worked so far.
Bless your hearts! We will find a cure one day!
Lori
Hi Tammy,
I take methotrexate and have no problems. I also had a problem with immuron. Not sure your dosage or how often you take it but i take 5.0 mg 1 time a week and take cellcept 2000mg daily.
Hope this helps
Anissa
Tammy Jean: All you can do is try ... it works for many! And with this drug, if anything should happen other than the normal side effects (nausea, tummy ache for first couple of days), you can stop it. They likely started you on 4 or 5 pills, to take once a week, yes? Well, they had just increased me by one pill (like week 6) when I started getting sick so you will know fairly quickly, I do believe. Keep us updated, please. Especially Terri (Tez), as she has just started with MTX, as well and we are following her progress, too. Hugs, Dee
Hi Tammy,
I have been on methotrexate for about a year and take 1mg folic acid too. My Dr. started me out on hydroxychloroquine (its like a synthetic plaquenil) I got hives & rashes head to toe!. After I recovered, he moved me up to the metho. The first week was 3 pills (7.5mg 1xweek) then gradually eased up to 8 (20mg). He has me spread out my dose with my meals and this does help a bit with heartburn and nausea. Also I take antacids. My side effects aren’t too bad- mostly heartburn, tired, & mild hair loss. Methotrexate is a miracle for me. Last month’s labs were finally super. Yea! Also my psorasis has never been under better control. Give it a go & remember to take the folic acid all days exept your dose day.
Wishing you a positive and successful treatment plan.
Lisa
I used Methotextrate for about 9 months without any side effects, at first I did not get any relief until after 6 weeks. My Rhuemy also has me on Plaquenil, folic acid, DHEA, Vitamin D3, Omega 3 & 6, and I take Magnesium for my muscles. I sometimes have periods of feeling sleepy and tired especially around 7pm and no matter what I am doing I must stop and go lay down and rest. I have been trying to work but I am only able to handle a part time job right now and it must be during the day hours because I get so tired in the evening. I was recently taking off the Methotrexate and put on Imuran because the Metho had stop working for me and my numbers were still the same and not looking anybetter. I have been on the Imuran 50mg 1 daily for about 2 weeks and so far I don't feel like I am having any serious side effects. I do sometimes feel like my muscles are trembling and I will have jerking motions at night sometimes. May be that will stop after a while.
Hi Tammy jean,
I'm pleased you got the folic acid but remember don't take it on the day of taking the methotrexate, start the next day as you won't feel the benefit :)
Tammy Jean 51 said:
thank you all for your support, I did get a scrip for folic acid with it so I will be sure to take that too. :)