Michelle, new, RA: I'm new here, diagnosed with RA... - NRAS

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Michelle, new, RA

ccme98 profile image
14 Replies

I'm new here, diagnosed with RA, taking methotrexate injections, and folic acid, also been prescribed Enbrel, haven't received it yet, I'm having trouble with side effects, nausea, diarrhea, headaches, some days worse than others...

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ccme98
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14 Replies
Eiram50 profile image
Eiram50

Hi Michelle; welcome.

Youve found a great forum with lots of very knowledgable and warm People, always willing to help .

I too take enbrel and have taken methotrexate for the past 3 months, with all the side effects mentioned - it's a horrible drug!

Do you take folic acid each day, apart from the day you take methotrexate ? That certainly helps. Drinking lots of water on the day you take it seems to help too. Others have suggested taking it at night and splitting the dose?

Hoping you start to feel better soon .

Marie

ccme98 profile image
ccme98 in reply toEiram50

Yes I take folic acid each day, I've never been told not to take it on injection days, hmmmm?? Do you take both methotrexate and enbrel? I suppose I could split my dose and take it at night, hopefully sleep thru the side effects, today thou has been rough

Thank you

Eiram50 profile image
Eiram50 in reply toccme98

Yeah. I don't think I know of anyone Who takes folic acid in the day they take their methotrexate as methotrexate deplete the body of folic acid. I'd maybe check that out with your rheumy?

I take both enbrel and methotrexate. 50mls enbrel injection weekly and 20 mg methotrexate weekly.

It can be rough and seem never ending but once you get meds that fit for you, hopefully things will calm down a bit. It all seems to be very much trial and error, getting the right treatment as it's so different for everybody .

Marie

helixhelix profile image
helixhelix in reply toEiram50

Apparently guidelines in America/Canada are different from U.K. and 7 days a week folic acid is used. So maybe UK docs are just super-cautious....

Tizzyliz67 profile image
Tizzyliz67

When I took methotrexate I was told by my doctor to not take folic acid on that day😊 Hope that will help you feel better

Downtime profile image
Downtime

I only take folic acid the day after the methotrexate. I had side effects at the start. Awful tiredness, nausea and stomach ache but now I don't have any effects at all, 18 months on. In fact the side effects improved quite quickly. I'm sure you'll feel better soon, and I hope the combination of MXT with Embrèl works well for you. X

bradfordjoanna profile image
bradfordjoanna

Definite top up on water. I used to find the best time to inject was tea time and as I felt worse in the evening to get an early night ( which is good for you !)

But I have been taking for about a year and now the side effects have greatly reduced.

Good luck

Suki1088 profile image
Suki1088

Hello and welcome. I hope you find this forum helps. It certainly takes some of the weight off for me. I too am on Methotrexate, I have been on Enbrel in the past but it didn't work for me. I hope you have better luck with it. I didn't get many side effects from the Enbrel but have had them with MTX over the years. I now take mine after breakfast and try to keep myself hydrated. Sometimes MTX can wipe you out so try to adjust your day so you can take it slow if you need to.

All the best

Leonwp profile image
Leonwp

Hi there Michelle, a big welcome to the forum, im trying hard to say nothin about the packers but as an ex semi pro linebacker from back in the day its hard. Sorry that you have had to find us especially as you are so young because this evil disease is nasty enough but terrible for one so young. Im afraid the side effects you describe go hand in hand with methotrexate, try and stay with it if you can but i have to tell you that some people and i am one of them never manage to tolerate MTX and eventually i had to be taken off it. Embrel can throw you another set of symptoms but with that if you get a bad reaction you have to speak up and tell your Rheumy team because those side effects need to be carefully monitored as that is very strong medication. There will be quite a few questions that i will be unable to answer for you as i am in the UK and not wose as regards your health plans but there are plenty of our american cousins (hi Peck) who will be of great help to you. Hope you find all the answers you need. Blessings.

Leon

Jeanslmn profile image
Jeanslmn

Hi Michelle I tried methotrexate in November for my RA but had same side effects as you so stopped taking it but have been persuaded to try it again now but only half dose for two weeks then three for two weeks then four from then on Tonight I take my second week of two tablets I've been ok upto now last time I got some meds from doctor to stop the diareah /sickness (loperamide) they stopped it immediatly I'm hoping methotrexate works this this way as nurse told me if it doesn't they've nothing else better they can try I'm already on four 500m sulfalsalazaline day have been for six years they worked well for all this time but huge stress brought on this last flare up I've been having since last May do here's hoping ,I hope this is of some help I know RA can be soul destroying bringing you down to a very low ebb ,so good luck

Jeanslmn profile image
Jeanslmn in reply toJeanslmn

I forgot I do take folic acid tablets days I'm not on methotrexate for first six weeks only it says on packet also someone on here said drink lots of water too

mickeysmom34472 profile image
mickeysmom34472

Hi Michelle, welcome to the forum. I am from the US and I was diagnosed with aggressive RA 6 months ago. I amnot young and I work in retail so I am on my feet all day. I started with MTX and folic acid everyday and I tolerated it well. I took it every Sunday after my bowl of cereal. I was very hesitant about taking it because I read all the horror stories about side effects. I was pretty good once it finally took hold, about 2 months. At the time I was up to 15 mgs a week it started to not hold me thru the week and I was getting flare ups. We tried the 20mg injectable MTS which would have been fine except I couldn't afford $400 a month (with insurance) so now I am on 20 mg MTX along with 5 mg prednisone and seem to be doing fine. Try to stick with the MTX if your body tolerates it. I also have osteoarthritis in my knees so I take Tylenol Arthritis pills for that, had 2 steroid injections in my knees so hopefully I will be set for a while. Don't get discouraged , there is a combination that works for everybody. Good luck

Spencey profile image
Spencey

Hi Michelle

Welcome methotrexate is not nice drug I have RA I still have side affects from it I have injected it for 3 years it helps to take it around 4pm and go to bed if you can to rest and sleep it off I also take tablets and I have a infusion every 4 weeks hope this helps you

Moomin8 profile image
Moomin8

Welcome 😆

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