I’m only on 5mg taken only on the day after my injection, stomach upset isn’t too bad but maybe I should be taking more?
Thanks for that Shiloh…I think all chronic pain sufferers need to hear that once in awhile.
2 Likes
@CanadianTrotter What is your MTX injection dose? I am doing a 1cc injection once per week and take 1-2mg of folic acid daily. Taking just 5mg for one day after an injection seems quite low.
That doesn’t seem like much. Sometimes it seems there are as many folic acid dosing schemes as there are rheumatologists. Both my long term rheumy in Colorado and the one I’ve been seeing for nearly a year in South Carolina are believers in taking it every day, including the day of injection. I find if I am not careful about adhering to the daily schedule, my mouth quickly becomes a mess.
My Colorado rheumy never suggested going above two mg/day, even though my mouth was miserable. My South Carolina rheumy kept increasing my dose until we found the right level to keep me comfortable, which is now 4 mg/day. I split it evenly between morning and evening.
Rebecca
It’s 20mg…how many cc’s is that?
I’m going for my next injection tomorrow and am going to ask my GP about changing the dose and frequency of the folic acid.
Have you experienced hair loss?
I’m not sure why my RA prescribed just the 5mg the day after, I’ll be talking to my GP tomorrow and see what he says.
I’m starting to get a few sores in my mouth but so far they aren’t too overly bad. I do feel nauseous and get an upset stomach after supper and my appetite has decreased. Have you experienced hair loss?
CT, I’ve been up and down with hair loss. I lost a lot when I first went on mtx, and the texture changed a lot as well. It still seems like I lose a lot, since I seem to leave a trail of stray hairs behind me everywhere I go, but it currently looks great. I recently grew out my Colorado layers because they got too huge in the humidity in South Carolina (although it did add several needed inches to my height). It’s mostly one length and pretty far below my shoulders, almost to my waist. It’s curly, but at this length the curl is getting somewhat flattened due to the weight. I have a lot of hair, so when I lose some, it doesn’t really show.
If I remember correctly, don’t you have amazingly long hair? I would definitely get a better folic acid regimen going, which will help you to hang onto it.
Rebecca
Hmmm… I’m not sure how 20mg (weight) would convert to cc (volume) as it would depend on the weight of the liquid. I definitely recommend asking about a daily folic acid regimen, though!
I’ve luckily not had any hair loss yet with the MTX. I’ve been doing weekly injections for about 8 weeks. I lost a lot of hair two years ago during a bad lupus flare and I only just started to notice that growing back in this year. My hair is long, fine, and thin to begin with, so hoping that I don’t start to see thinning again. In addition to the prescribed folic acid, I also take a biotin hair/skin/nails vitamin daily and I only wash my hair 1x per week, which seems to help it stay healthier.
I have lupus, not ra ( my mother does though). My presentation has a lot similiar to myositis where my muscles just feel dead. That combined with some joint pains and the overwhelming fatigue makes it miserable. I ignored it for a long time even though I have had symptoms for years. Just chalked it up to too much stress, not enough sleep. once the results stated coming back it was like ah ha. That’s what is wrong. I’m on cellcept. I’m highly allergic to plaquenil and my stomach reacts violently with sulfasalazine. I could easily become addicted to prednisone. It makes me feel amazing. And not as in steroid high. As in sleeping better, muscles and joints feel better. I don’t even eat more. It’s just like a feel good pil for me. Haven’t taken since January but was on 6 weeks high dose follows by taper.
I do get the sores in my mouth with flares. Also will run a low grade temp. In the 99 to 100 range. And really just feel like crap all over. For me the overwhelming tiredness is still the worse. Can deal with the pain. When the weakness hits it’s hard. But can manage usually
@sandsarita Same for me! People never understand when I tell them it just makes me feel NORMAL. No increased appetite, insomnia, or over-abundance of energy. I just don’t feel like death is knocking on the door anymore. I had to start a high dose regimen in early September due to a Myositis flare (lucky me, I have Mixed Connective Tissue with Lupus, Myositis, RA, and Raynauds presenting so far) and am still tapering now. Currently on 15mg/day plus the 1cc MTX per week. All of my numbers are coming down (ALT/AST, CK, etc.) but are still pretty high. Once I’ve weaned off the pred, my doctor may add AZA or IVIg.
Yes, it’s down past my butt and I’m 5’8", and very thick. I’ve been watching my brush to see if I’m losing more than usual and it’s hard to tell right now, I always lost a fair amount each time I brushed before I started the methotrexate. Fingers crossed I don’t lose too much.
I saw my GP for the injection and he changed my folic acid to 2.5mg daily excluding the day of the injection.
I had so many questions to ask my GP today that I forgot to ask about the conversion. I did a search that says 1cc of insulin is 1mg of insulin and if that’s the case with the methotrexate that would mean 20mg is 20cc’s…that seems very high so that can’t be right.
When my doctor asked me where I wanted the injection today I replied, “How about in your arse?”,thankfully he has a good sense of humour and we both got a chuckle out of it.
Does anyone have just one autoimmune disease?
Prednisone works well for me but I can’t take it for more than 5 days at a time and no more than 1-2 times a month because it will make my diabetes spiral out of control, plus the RA doc said no prednisone if I’m on methotrexate.
Dec1 I start the leflunomide pills 1x daily as long as I’m not getting any bad side effects from the methotrexate.
I take .8 cc of injected methotrexate, which my rheumy told me long ago when I went to that dose, is equivalent to 20 mg in pill form.
Rebecca
I envy you your hair. Mine is finally growing well again after years of not being able to get it past my shoulders. My hair really seemed to dislike Orencia for some reason.
Your new folic acid dose sounds much better to me. I’ve heard varying opinions from doctors on excluding it on the day of the injection. I’d say it’s about 50-50 in my unscientific experience of just hearing what people do.
Wow, I would love being able to have a doctor’s office do my injections every week. In the US, you’re pretty much on your own. It’s tough for someone like me who just can’t seem to get past a totally unreasonable fear of sticking a needle in myself. Luckily, my husband doesn’t mind doing it for me, and that means I can use my upper arms for injection sites.
Rebecca
That sounds right to me and now I have a faint memory of my GP saying the same thing when he gave me my first injection.
Hopefully I don’t lose much of it on this treatment, I’m not a vain person but I sure would miss it!
You take 4mg of folic acid a day spread over 2x daily, does that help more with the upset stomach and potential hair loss? My GP says it doesn’t affect the methotrexate so it doesn’t matter how much you take, which makes me wonder why my RA had me on just one tablet a week. I’m wondering if even the 2.5mg once a day should be upped as a preventative?
Giving myself needles doesn’t bother me, I already inject myself 2x daily with insulin for my diabetes. I’ve just been through so much lately that I feel better checking in with my GP once a week and my pharmacy is in his office so it’s really convenient for me. He does the same for his patients that get B12 shots and he keeps everyone’s injections in his cupboard for when they go in.
CT, I don’t get an upset stomach from injecting mtx, with or without folic acid. I had terrible stomach troubles with the pill form once my dose got up to 15 mg/week (and my stomach wasn’t very happy even when I was on 10 mg/week). I used to lose my weekends entirely. I took my pills on Friday nights because I knew the next two days were a total writeoff, and I just couldn’t afford to be down during the week. Even losing weekend was tough, because I never knew when I’d need to deal with a system problem. I was so grateful when I switched to injections a long, long time ago.
I think too much folic acid actually can affect the mtx. I was originally on 1 mg/day, and when I still was getting bad mouth sores and losing a lot of hair, my Colorado rheumy increased it to 2 mg/day, and it was there for a lot of years. It wasn’t until I moved to South Carolina and started seeing my new rheumy early this year that it was suggested that I increase my folic acid. She had me keep increasing it gradually until it took care of most of the mouth sores.
I suggest starting where your GP has you now, and see how it goes. But I sure don’t understand the dosing that your rheumy had you on. That just makes no sense to me.
Rebecca
I’m really happy that you did better when you switched to the injections. How long did it take for you to notice a difference in your pain on the methotrexate and how long have you been on it? Are you taking anything else with it? Are you familiar with leflunomide? I need to do more research on it before I start taking it.
My GP said folic acid doesn’t affect the methotrexate but he may be wrong or misinformed, I will clarify it with him next week and call my RA to see what she says. Hopefully taking the 2.5 daily will make things better. You’re right, the 5mg only once the day after doesn’t make sense, I hope my pharmacy didn’t make a mistake with the prescription.
I am beginning to get small mouth sores and after brushing my hair this mornring I think I’m starting to lose some but it’s hard to tell.
Sorry for all of the questions, research only goes so far and talking to someone going through the same thing is quite helpful.
CT, I’m happy to answer questions. I had a lot of support from an on line group when I first started on this adventure, and I’m still friends with a lot of those people. It was very helpful, and I think folks who are new at this deserve the same.
I’ve been on mtx a very long time, so long that I don’t remember when I started it. I’m guessing it was at least 16 years ago. I just don’t remember my exact progression with it, but I do know that I was put on my first biologic in 2002. What I don’t remember is if I was on mtx for any length of time before attempting the biologic.
While on mtx, I’ve been on Remicade (just for a couple of months; epic fail due to nasty allergy), Humira (which was wonderful and lasted for about 13 years), Orencia (for two years and never really worked), and now Kevzara. Kevzara has my inflammation numbers in the normal range, but I still feel like crap. My rheumy says all my pain is coming from fibromyalgia, but I am still not convinced.
Be aware that there are so many different theories on the best folic acid regime. I don’t think your rheumy is alone in her methodology. There may be studies that support it for some people, even though it doesn’t make sense to me. Obviously it wasn’t working for you, though.
I’ve never taken leflumonide, so I have no experience to offer you on it. I know a lot of folks on the big RA support Facebook page say it works well for them.
If you have any interest in the big support group, I can PM you the link, but I think you’ve said you’re not on Facebook. The biggest problem with that group is that you get as many opinions as people who post, and some of them are nuts. You have to research and judge their advice for yourself, but that’s true with what you hear from me or anyone else on COTH, too. There used to be a support group on the Arthritis Foundation’s site, but I don’t know if it’s still active.
Rebecca
