Does weight loss increase the side effects of methotr... - NRAS

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Does weight loss increase the side effects of methotrexate?

silentpool profile image
18 Replies

I have recently shed a couple of kilos during a period of family ill health and I notice that my methotrexate injection now makes me feel more tired and nauseous than before. I wonder if this is because of the stress I have been under, or whether I should ask for a review of the dosage. I am currently on 25mg weekly plus 200mg hydroxychloroquine twice daily. Has anyone else had a similar experience?

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silentpool
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18 Replies

It’s not something I’ve thought about. I’ve been on 20mg for 3.5 years and put weight on straight away(2stone) and gained another as time has gone on. Sometimes I get methotrexate hangover sometimes and sometimes no effect 🤷‍♀️🤷‍♀️🤷‍♀️

KittyJ profile image
KittyJ

I haven’t found this at all. I’ve recently lost a couple of stone and have no more side effects than before.

AgedCrone profile image
AgedCrone

Don’t think a couple of kilos would make any difference to your absorption of methotrexate. Are your drugs otherwise still controlling the RA ?

Are you drinking plenty of water and taking Folic acid... They are the two main things that helped with nausea when I was on methotrexate.

If it continues for much longer maybe you should have a word with your rheumatology nurse to get a review of your medication?

LippyLu profile image
LippyLu

The best thing I have found for MTX reactions is taking Vitamin A, 8,000 IU/day to prevent nausea and diarrhea and dextromethorphan (20-50mg) taken with the MTX dose and again 8-12 hours later for the neurotoxicity (fatigue, headache etc.). I use the tablets (Mucinex DM) but in a pinch you can use liquid Robitussin. Both are over the counter, of course. See rheumnow.com/content/dsb-ma... for explanation of why these work. Also note that this and other scientific articles discuss that there is no need to take 25 mg MTX because 15-20 mg works just as well. You may want to discuss tapering down the dosage with your rheumatologist.

mrdiggs profile image
mrdiggs in reply to LippyLu

Thanks Lippy for the info, I'm definitely going to try the Mucinex DM with my shot tonight and follow up 8 to 12 hrs. later with another pill. I'll do anything to get rid of this ugly nausea , it's like having a constant case of morning sickness and we all know how much fun that is-lol. Wish me luck !! Also will try the vitamin A, at this point I'm willing to try anything.

LippyLu profile image
LippyLu in reply to mrdiggs

Vitamin A is what helps with the nausea, and you have to take it daily. Mucinex eliminates the fatigue (for me). I take two Mucinex pills with my MTX dose and one more 12 hours later.

mrdiggs profile image
mrdiggs

I switched to injection of Methotrexate about 3 months ago from the pill form. I'm finding that I don't think I tolerate this form as well as the pill form.Have lost a couple of pounds but nothing significant and also take folic acid every day which doesn't seem to help at all. I have 24/7 upset stomach, sinuses are a total mess and have occasional headaches . Also finding that the effects of shot don't seem to last as long . I take my shot on a Sunday night and by the following Friday I'm starting to hurt, usually my hands but as we all know it can jump to other parts of the body.I'm on a very low dose of my own choosing, just 7.5 mg. a week but take 2 mgs of Prednisone with Folic acid every day. Have been on these drugs for 7 1/2 yrs. and don't think I've ever been in remission completely. Should mention that if I have a flare they increase the dosage of Prednisone up to 20 mgs. for a period of time and then work me back down. Right now the thing that is really getting to me is the constant nausea all the time and really bad sinuses, I've really had it with constantly feeling terrible.I'm seriously considering going back to the pill form even though they say the injections are supposed to be easier on your stomach, I'm just not finding that in my case. I'd be interested to know how you make out in the future and what you decide to do. I wish you the best of luck and hope you find the answer to feeling better very soon.

KittyJ profile image
KittyJ in reply to mrdiggs

Hi mrdiggs I went back to pills from injections as the injections made feel so unwell for 5 days after taking it. I just had to find the dose of pills that didn’t give me side effects.

nomoreheels profile image
nomoreheels in reply to mrdiggs

Mrdiggs, are you prescribed less than 5mg of folic acid a day? I know that in the US you're generally prescribed 1 or 2 mg daily. If so this may be some of the cause of your problems, that your folate levels are dropping too low due to the MTX depleting your natural level. Headache is a common symptom as is an upset stomach, nausea & related tum issues. I know that some Rheumys in the US will prescribe leucovorin or folate rather than increase the folic acid dose for typical folate deficiency due to MTX. You say you're on a low dose of your own choosing. Which dose did your Rheumy recommend you have?

I wonder also as MTX stays in the body 2 to 3 weeks why you start to feel symptoms creeping back in 2 days prior to your next dose, you should have reserves for more than a week. Alternately the dose you're on isn't controlling you well enough.

Both these are questions to put to your Rheumy next time you have your review appointment of course, just trying to make some sense of your problems. Meantime keep your fluid intake up, drinking plenty of water helps flush your kidneys which helps reduce MTX toxicity.

mrdiggs profile image
mrdiggs in reply to nomoreheels

Many thanks for the reply. Just checked my Folic Acid dosage--am taking 400 mcg per day except on Methotrexate day. I have mentioned this to my Doctor but he just seems to write it down on my chart and on to the next. He is a very nice person but I'm starting to think I might need to make a change. He usually orders blood work about every 3 months but never tells me the results unless I ask and just found out they don't review my blood work results till I walk thru the door.It seems to be the practice over here in the U.S. as I do have an appointment with the Doctor I first treated with and they do the same thing. They all seem to be more consumed with writing down whatever info they gleam while I'm there but little to change things. To my knowledge he has never checked my Folic Acid levels and if I hadn't pushed he wouldn't have checked my vitamin D levels which came back almost non existent. Then he prescribed 58,000 once every 2 weeks.Since I seem to have a problem with high doses of anything I was worried about even trying this so just went on a daily dose of 2000 IU . It seems they don't concern themselves with a patient feeling really lousy, but as I said before I don't think I've ever gone into remission in 7 1/2 yrs. Have been on MTX and Prednisone that whole time, except twice when I tried to come off of the MTX -what a mistake-lol- can you say major flare up. !! So here I am in kiddie city and still trying to figure out what my next move should be.I think he has been satisfied with the dosage mainly because I have had really bad lose of hair and really can't afford to loose any more ( and I might add it keeps happening ) or it's wig time for sure.So I guess I'm going to try the pills again and see if things improve.Thanks again and don't hesitate to suggest anything--you might say I'm desperate and just want to have a few days of actually feeling human again.

nomoreheels profile image
nomoreheels in reply to mrdiggs

Your 400mcg folic acid, is this a prescribed dose or do you buy it over the counter? It's just that it's a really low dose, the amount that's recommended for early pregnancy. In the UK we're prescribed 5mg a day, that's 12.5 times your dose if my maths is right, a big hike. Your dose is 2,800mcg weekly, mine is 30,000mcg, that's with me taking it one day less than you! It's little surprise you're troubled with hair loss. It's a big thing, by losing our hair we seem to lose some of our identity & it goes a long way towards our self esteem. Even at US recommendations for supplementing folic acid with MTX of 1mg you’re under dosing. I think you need to have words with your Rheumy, firmly but respectfully of course. If he's intent on ignoring your questions, or if you're just not happy with him professionally you have the option of seeking a second opinion, or just changing to another Rheumy. It's ok him being nice but he's not helping you with being able to cope with your meds. One worth his salt takes into account how his patient feels, or rather should. It seems you're just not happy with him & think after 7.5 years I would, I don't think I could have put up with it so long.

Your test of halting MTX proves the point... it is working but you need to sort out the folic acid, you must be very deficient. Do you know that MTX depletes our levels, that folic acid is necessary. Have a read of this, it explains why we need to take it, at useful levels creakyjoints.org/treatment/..., it's a US site so everything will pertain to you.

If there's anything else you need help with just ask. 😊

GordonEdin profile image
GordonEdin in reply to nomoreheels

There does seem to be wide variation in the amount of folic acid being prescribed. I (UK) have been on 5mg - once per week but not on the same day as the methotrexate - for many years along with 15 - 20 mg Methotrexate. That seems to be the most common recommendation.

Seems to be OK. At some point, there could be an excessive dose of folic acid that might stop the methotrexate from working! Don't know where that limit would lie.

su-mo profile image
su-mo in reply to mrdiggs

my partner had hair loss but got it back by taking "probiotics" good health capsules with a magnesium chloride body lotion / oil if it helps. Lactobacillus & Bifidobacteria are friendly bacteria 10 - 20 billion count Might be worth a try !

Floralqueens profile image
Floralqueens

This so mirrors what I’m going though at the moment. I too am on the same dosage of MTX and hydroxychloroquine. I’m constantly feeling nauseous, the weight loss is a challenge when I can’t face food. You have my every sympathy and I wish there was an answer. I’ll be in touch with my Rheumy nurse this week to see what she suggests.

Pawz4me profile image
Pawz4me

I don't think weight is an issue in methotrexate dosing. I've never heard anyone mention it, or read anything about it.

nomoreheels profile image
nomoreheels

Hiya silentpool. Stress & RD aren't good bedfellows I’m afraid. MTX dose isn't usually weight dependent but it's something to ask your Rheumy about, it is on the high side of dosage & if your folic acid dose isn't frequent enough that may be related to your fatigue & nausea, both are common side effects of falte deficiency if your levels are too low. I don't know what you take but I take tag every day except the day I inject MTX.

LippyLu profile image
LippyLu

MTX toxicity is related to the dose levels. Taking it as a shot leads to more absorption and thus higher MTX levels than taking the pills, so it causes more toxicity. Studies show lower doses are generally as effective as higher doses.

Are you taking any NSAIDs as well? That will definitely increase GI toxicity. As noted above, Vitamin A, folate and leucovorin all help with the GI issues.

Hi I notice you take 200 mg hydroxychloroquine twice a day. I am also on that dose but I was just told take it everyday. No one told me to break it up into 2 doses .... I have been taking the full dose in one hit. Are you suppose to break it into 2 doses a day and does that make a difference in how it works? Thanks

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