Hello my friends. I started on meds for Psa in Sept of 2019. I’m on weekly injections of MTX and 4 pills daily of Sulphasalazine. I hate the way I feel the day after my MTX injections, no life, no energy, headaches, can’t sleep but want to sleep, basically its a wasted day or day and a half. How about the rest of you, similar, different reactions? I see my rheumy at the end of June and want to bring it up. Maybe change the meds? Has my combination of meds worked differently for any of you? thanks
I could never hack the effects of mxt either by tablets or injections. It made me resident in my bathroom. Told them if they wanted me to continue to take it, I would need to be an inpatient in hospital. They then started me on sulfasalazine. Once I got to 6 tablets a day (not the 4 you’re on) it seriously worked like a charm on its own for several months until sadly my disease progression overtook its effectiveness. So prehaps that’s a possible option for you to discuss with your rheumy?
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Hi wisc72.
Some here have a similar experience to you, some get on fine with Mtx. You do need to discuss this with your rheumy and consider changing meds if necessary. I would think your rheumy will be familiar with this issue.
Have you been prescribed Folic Acid to offset any knock-back from Mtx? And also are you drinking plenty of water? That is plenty, not just some - can be hard to adjust to if you’re not a fan of plain ol’ water. It can help considerably with tolerating Mtx.
Yep, your description is so good I could have written it! But am on tablet MTX and so could add a bit of nausea and toilet time in too for good measure! It really wasn’t pleasant.
Always take it at night before you go to bed, drink loads of water, and take folic acid, as the others have mentioned. I tried to take it on days where the next day was relatively easy.
If it is useful to you (I mean helps your PsA), then it may be worth persistence, as I found these side effects to retreat slowly over time.
For me, I’d guess it took 2-3 years of taking it on and off (more to prevent antibodies to biologics than as a treatment itself) before the side effects were just a bit of a niggling headache on waking that cleared after an hour or so, and it no longer mattered which day of the week I took it. 8 years on I struggle to remember which day I took it, and the only side effect is I usually get a more solid nights sleep!
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I also felt this way on MTX. My joints felt great, but I barely had the energy to walk from the bedroom to the bathroom. It lasted three or four days. About the time I felt better, it was time for my next weekly dose. Reading up on the long-term side effects wasn’t inspiring either. After two weeks, I was like, “nope.” It doesn’t help that it doesn’t hurt to move, if I’m too exhausted to!
Thanks everyone. This forum is better than rheumy appointments, although I do like my rheumy. It helps to hear the real life stories. And yes I do take a folic acid the day after my injection and thanks for the tip about water and lots of it. I’ll be doing that! Fyi I had a rheumy appt yesterday, it was supposed to be in person but they called and said it would be over the phone. I said I’d rather it be in person, so they called back later that day with an in person appt. So we masked up etc and had a visit. She mentioned that -yes, my immune system is compromised but, before I started meds, it was way out of whack and these meds have stabilized it somewhat, so I’m better on my meds during Covid than off them. Of course if I get Covid, that’s a different story. Once again thanks for all the great responses!
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I like the way your rheumy describes our immune system situation - ‘way out of whack’ may not be very scientific but I suspect it’s more accurate than ‘over-active’. I think of mine as being regulated by the drugs. And the way I felt before starting them it was like a puff of wind might floor me, let alone a nasty virus.
If after effects continue with Mtx, you might want to ask your rheumy about the amount of Folic Acid you take. Don’t self-prescribe, it’s just that sometimes more can help.
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I have tried MTX 3 times over the past 30+years by injection, and after a few days each time, I would develop thrush. Twice in my mouth and throat and once, yup, way down there. My Rheumy told me very emphatically it was NOT a side effect. He wanted to try again but I flat out refused. Been on Otezla for 2 years and started Plaquenil 5 months ago as I developed Lupus from Remicade Infusions 3 years ago and it should have gone away months ago, yet here we are year 4. Only now did he start this Lupus treatment as I think he was sure it would have just faded away. None of those meds cause thrush either, as noted in the literature. So anyone else develop thrush after MTX? But I tell you the worse of the worse is the fatigue after I contracted Lupus. I led a normal life for the most part for over 30+ years with PsA but have been practically home bound the last 4. So after complaining to the Rheumy for 4 years he has diagnosed me with Chronic Fatigue Syndrome, in other words, who knows?
I never say this NEVER. But I’m saying it now. Your Rheumy is an idiot. RUN and RUN quickly. Oral complication are a very common effect of all forms of Arthritis. Angular cheilitis and both “north” and “south” thrush well known side effects of MTX. MTX is a folate inhibitor. Good Grief. (All that likley was necessary to get good effect from the medication was an adjustment of your folic acid. I have experienced it an I know others have. Now Days the only effect I have is a fare of P (or fungus) a couple days before my MTX is due and yu can almost set the clock to the same 3 days after…
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