Hello all. My daughter started Mtx injections 20mg, 8 wks ago.
Since she started, her menstrual pain is very extreme. Also her anxiety has escalated, especially for the 3 days after her injection. Does anyone else have these side effects as well? Thank you for reading and sharing!
I didn’t have these side effects, but i did find it took several months to adjust to the drug. She is also starting on a full dose which can make it more difficult. Hopefully thing will calm down in next few weeks, but if not she could ask her doctor about dropping down a couple of doses and then building back up to 20mg.
Thank you so much for your response. I sure hope so! Good idea, will definitely ask the doc if that is possible.
I did have mood issues when I started Methotrexate (for a few days after each dose) and when I told the nurse, she increased my Folic Acid to 6 days a week which definitely helped. I was menopausal when I started it so can't help with the periods - sorry.
Thank you for sharing. Her rheumy told her to take the folic acid every day...is this not correct? I am sorry to hear you had the mood issues - it is hard for sure. At least it helps to know we are not alone.
Different rheumys prescribe differently - the important thing is that she's taking Folic Acid more than once a week which is what some people start on. As she's still having issues, it's worth letting the team know (I have a nurse helpline as a first point of contact) as they might be able to help.
I’ll definitely let them know. With pandemic, they don’t answer the phone and you have to leave a message. Sometimes it takes days or weeks for them to return a call - depending on what they warrant necessary. When I call I will ask that they call me as soon as possible and see how it goes. Rheumy told her to take folic 7 days a week, it’s a 1 mg dose. I am so glad that you have a place of contact for support, a helpline is great! Thanks again
I’m not on MTX anymore but it did cause some disruption to my periods when I first started it - late periods and longer ones. I don’t remember more pain, but I’ve always had terrible cramps anyway.
The anxiety could be linked to generally feeling rubbish after the dose, which kind of heightens any negative feelings you already have. A bit like when you’re really tired and it’s harder to control your emotions.
If your daughter was given a rheumatology helpline number, it might be worth giving them a quick ring just to check in - and see if they are happy for her to carry on at the same dose.
Hope she starts to feel a little brighter soon ☀️
I was on MTX from about 16-18 (since been told I was one of the first to take it for RA) but it didn't affect periods, I never experienced period pain or anxiety and went on to have two completely normal pregnancies and births and a symptom free menopause. Hope she finds a solution.
I nearly always feel low and in a bad mood on the day after I take my Mtx. I told my rheumy about it, but she just said "Oh do you?" and that was it. Not much help there I am afraid.
I took Methotrexate for the better part of 20 years though I am off it now. I noticed the effect on my mood too. I am not one who generally suffers from mood problems, but the day or two after taking the methotrexate, I often woke up with what I would describe as a free-floating sense of dread. I would brush it away, knowing it was caused by the med, but it was still unpleasant.
Thank you for sharing! Yes that's exactly how she feels! But finding it difficult to brush away for her. Having some life traumas doesn't help her much either. So I think maybe it all adds up unfortunately I hope you are doing well now
I hope she can find some relief soon.
Thank you for sharing. Yes, it is hard for us too -to get some more concrete answers from her doctor. It can get a little frustrating. We'll see if she can start on a lower dose, maybe that will help.
Hiya Leynna & welcome. MTX can affect periods unfortunately. She is on a high initial subcut dose. Was she on tablets previously & is the subcut dose the same or higher than the oral? I only ask because when I started injecting I'd been on 15mg tablets & the 20mg I started injecting was too high for me, I had increased side effects so the dose was reduced to 15mg. You see injections have greater bioavailability, & are significantly more effective, unlike tablets they don't have to travel through the intestines. That means in effect that the actual dose is greater so it's a likely cause, why she's having these side effects. If she's in significant discomfort & the usual meds she takes to ease it aren't helping then she could ask her Rheumy if her MTX dose could be reduced & titrated up over time to reach the most effect yet manageable dose, see if that eases things.
The anxiety is something to work on. Has she said why or what is making her anxious, aside from injecting the MTX I mean? With it being for 3 days post injection it wouldn’t seem it's the act of injecting, is it something else do you think? I'm sorry, not knowing your daughter's age these might seem odd questions.
Thank you, I appreciate your reply and your welcome:). She is on a high initial dose yes, not on tablets. What you are saying, makes sense for sure. Definitely a good idea to ask and see if she can drop to a lower dose for a while. She does have anxiety and she is working on that thankfully She is used to injections - sadly she has suffered with Lyme most of her life and so the injections have become a part of her routine - so I know its not the act of injecting. She is 23 years old - I am her advocate. Being on online and on chat groups is tough for her, headaches and sore eyes. I can see her anxiety level change after the injection - it lasts for 2-3 days and slowly drops. When she is on her cycle, she has severe pain cramping - almost tempted to go to emergency. It is worse since on the MTX. Please don't be sorry, not odd questions at all. I am just so grateful for all the responses and support!
I understand better now, thank you. I'm sorry she has Lyme too, that & now this. Please do ask if her dose could be lowered & increased gradually if needed.
Can I ask what dose of folic acid she takes? It could make a difference to easing side effects. Here in the UK we're prescribed 5mg tablets, I take it every day except the day I inject. I have a feeling you're not in the UK though & your daughter's dose might only be 1mg. If so maybe discuss options with her Rheumy, see if there's anything he can suggest to help..
Take care.
Thank you so much...yes 1mg we are in Canada. She takes it everyday. Maybe lowering her mtx dose and increase her folic acid, would be good to ask the doc. I really appreciate it, thank you Keep well
You're welcome. That's what I would do. He may well say he's started high to try to bring her under control quickly which is understandable but that has good &, as you know, not so good results. Keep in touch, let us know how you get on?
absolutely, I will keep you posted
Sorry, I have a question for you! Why not folic acid on the day you inject?
The thought is at 5mg it could lower the effect a little of the MTX if taken on the same day. 1mg wouldn't be likely to make a difference.
Interesting, thank you for sharing that as well. Keep safe and well, I'll be in touch!
No probs. I hope her Rheumy is sympathetic. Speak soon & take good care.
I have gone through menopause but I had deep abdominal pain 3-5 days after my injection. It almost felt like I was in labor. My doctor took me off of the methotrexate after only three weeks. I found that I was grumpy on the methotrexate.
Good day:). Thank you for sharing. Yes, she is also very grumpy as well. Just seems to get worse every time she gets the injection. And the abdominal pain when on her cycle, she explained it the same!” If this is what labour feels like I don’t know it I can take it or have kids the pain is excruciating!” When she is not on her cycle the pain shoots sharply out of no where, lingers and settles-not at a constant, but it comes a few times during the first 3 days. Do you mind me asking what you are taking now?
I am on laflunimide now. I am only on 10mg right now as she started with a low dose but will be increasing to 20 mg soon. It seems better. I don’t have the terrible grumpiness or extreme cramping. It does not seem to be working yet though. You sound like a very caring Mom. It must be so hard to watch your daughter go through this.
Thank you, yes it is very hard. She was bit by a tick at 6 years old and been struggling with Lyme disease and JRA since - she is 23. Trauma - her father was a very abusive man and we lived a worrisome life. Finally I had the courage to leave the marriage when she was 16. Her and I live together and I am her caregiver I just want to ease her pain, so she can find a sense of normalcy and enjoy many of life's beauty. I wish you all the best on your new medication and hope you can find it starts to work soon. Sometimes they take time
I'm so sorry to read this Leynna, but am pleased you were able to gather the wherewithal to escape such a difficult situation.
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