Posted , 10 users are following.
Hi Everyone,
I was started on Methotrexate on the 25th March and two weeks in I am not feeling very well has anyone else experienced this when theyfirst started on it. I keep feeling sick and just feel generally unwell.
Linda x
0 likes, 13 replies
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leigh13428 linda51222
Posted
Hi Linda
I have to take Folic Acid to combat the feeling of sickness . But not on the same day you take Methotrexate.
Leigh
mrsmop linda51222
Posted
Hi Linda, I took MTX [Methotrexate] for 2 years around 2014.I gradually felt worse & worse. I am assuming you take the folic acid too.
I spoke to my Dermatology Consultant, who asked me to try taking the MTX at the same time as the folic acid, which is not what we are told to do. I tried that & it worked.
One of the Dermatology nurses actually screamed at me, telling me that my Consultant was wrong but on the basis that he was/is more highly qualified than she is, I did as he suggested & I was able to taper my steroids, which was the aim of taking it.
What dose are you on, could it be reduced for a while?
I have various autoimmune diseases but I now also have RA
Talk to your Consultant Linda, good luck
leegleze mrsmop
Posted
Hi Mrsmop! I've been on MTX for 27 years, taking my MTX dose Friday before bed and taking 5mg daily of Folic Acid every day but Saturday. Are you saying that you take the MTX weekly and the Folic Acid every day of the week? Could you please detail your schedule for me because I'd like to try it. Linda, I found taking my MTX once a week intramuscularly (self-administered needle) avoided most of the sickness I was feeling while on the tablets themselves. MTX has helped a lot, but you must do the trial and error thing until you get it right. Hope this helps. ~~~ Roxana
mrsmop leegleze
Posted
Hi Roxana, I was initially told to take my MTX on one day & the 5mg Folic acid on 5 days excluding the MTX day, then another doctor told me to take MTX, then one dose of Folic acid 5mg. I kept having adverse reactions to the MTX, so my Consultant, whom I trust, told me to try taking the MTX & Folic acid at the same time. I managed to take it like this for about 20 months before I had to stop.
When one of the nurses learned that I had been told to take the MTX + Folic acid together, she screamed at me! But, I have known this same Consultant for nearly 8 years now & trust him with my life. I didn't listen to the screaming banshee!
Don't try this method unless your clinician tells you to do so Roxana & don't do it without supervision.
leegleze mrsmop
Posted
Thanks so much for your quick answer! I live in the outback of Mexico, so I have to self-medicate sometimes because the doctors they send out here (on a tri-monthly basis) know little about anything other than scrapes and bruises and dengue fever. Always a different MD, and some have actually harmed the patient with cockamamey ideas. Soooo, I go back to Canada once a year and see a Rheumy then. Fortunately, I have an appointment with her when I go back this month!!!!!! She knows my situation, after 27 years, so she will be cautious, I'm sure. The MTX is not doing its job any more, so anything more I can suggest to her would be gold. Thanks again!
mrsmop leegleze
Posted
https://www.nras.org.uk
https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/
I expect you have seen these websites but in case you haven't there may be some useful information on them for you to look at & good luck! We are so lucky to have quick access to our various doctors.
leegleze mrsmop
Posted
Muchas gracias, Amiga!!!
Guest linda51222
Posted
Hi Linda, MTX is not for everyone. I couldn't take it. The day after was a nightmare. I thought I knew what it was like to be dying. Some people I talked to absolutely loved it and took it for many years. I'm just taking a wild guess but I think if it is starting off bad, it will not get any better. Be sure and tell your doctor how it makes you feel. Keep a diary of what symptoms you experience and also if it stops the flares and pain. You are an equal partner with what you put in your body so don't be afraid to speak up
gaz1234 linda51222
Posted
Hello
I have been on MTX for a lot of yrs and never really had any probs.
I do take one folic acid pill each week
Ive had R.A. for about 19 yrs now.
Ive just started MTX in injection form, self administered
So if your consultant says you have to be on it maybe a different way if taking it might help.
Otherwise you do have the right to ask for something else as the illness is enough to cope with without the meds making you feel awful to.
All the best to you
Gaz
blair97497 linda51222
Posted
Hi Linda.
First - yes. 2 doses in, I think I felt a little unwell. Also at 2 months in. But by then my RA symptoms were reducing too, so I had some benefit to weigh against feeling sick from the drug.
By then I had been on hydroxychloroquine for a few months and then also tried sulfasalazine for a couple of months. I was consistently unwell from sulfasalazine, with nausea, indigestion and diarrhea . I was so pleased to be advised to stop it!
Back to methotrexate - at around 4-5 months I complained that it was still upsetting my stomach and making me feel unwell. My RA symptoms were also still not resolved, but rather than give up on methotrexate, as a next exploration I was started on subcutaneous injections. The good thing was that as it is more efficient delivery, I didn't have to increase the size of dose. My symptoms reduced far and side effects were greatly minimised.
I now think I have around one day of feeling a bit "off" and wiped out after my weekly injection.
I am around 2 and a half years along from onset now. The memory of the widespread pain, exhaustion and absolute misery I reached before being diagnosed still makes me massively appreciative of the benefit of treatment.
However the disease varies for all of us and so does our reaction to treatments.
I still suffer mainly from occasional pain but most of all fatigue that is clearly related to the RA. I would now say fatigue is my most persistent and impacting symptom.
As others have said, be open with your rheumatologist, ask them what they think is reasonable to expect. If you really can't tolerate this drug, your doctor will work with you to explore other treatment options. They all have risks and benefits, which have to be weighed against your response and the potential for ongoing damage from your disease activity, and again these things are different for each of us.
All the best, Blair.
loulou282 linda51222
Posted
hello Linda
Unfortunatly for me i suffer with terrible side effects from mtx 25ml injection, some weeks i can feel quite unwell, awful body shakes, fatigue, nausea, headaches, body feeling like lead, i cant plan anything as i never know how im going to feel, i am also on the biological Embrel. There is a plus side however to suffering these side effects and that when it starts to work ( it took a good 6 months)it is amazing, i have tried most other things to no avail so was pleased when this worked but wasnt enough on its own. I generally feel unwell as well but not so traumatised as when suffering with so much pain, i have been on mtx for 5 years but i am going to ask rheumy to lower the dose as im fed up with the loosing of days due to feeling so unwell. To be very honest i have never felt well on this but compared to the flares i was getting its the better option. I couldnt hold a job down if i tried. Stay with it im sure once your body ajusts to the stuff you will feel less pain. I take folic acid 6 dayys a week and drink plenty of water on mtx day, i take mine on a sunday evening . good luck x
blair97497 loulou282
Posted
Loulou, that's terrible. I feel so sorry for what you are going through. It helps me to shove any self-pity I have back into proper perspective when I hear how badly some people are suffering. Thanks for sharing.
SteffieB linda51222
Posted
Hello,
I was on Methotrexate and I got severe abdominal pain, diarrhea and I also felt like I was in a daze all the time. I have Crohn's Disease, as well as RA, so I don't know if the medication made my GI symptoms worse, because of this drug, or because I have a sensitive GI system. Either way, I stopped that drug. Now I'm on Inflectra(generic version of Remicade). It has worked much better for me and I don't have a lot of side effects. If you live in Canada, there are programs in place to help pay for this medication. If you live elsewhere, you will have to research whether you can get help to pay for the medication. Very expensive, but worth it.