Has anyone taken MTX with NO side effects: Everything I... - NRAS

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Has anyone taken MTX with NO side effects

LyndaKenny profile image
51 Replies

Everything I've read on here about meds is negative. Is there anyone out there who can say they took the above drug without side effects?

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LyndaKenny profile image
LyndaKenny
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51 Replies

Yes, me. I should say I had raised ALT for some time but a liver scan showed that my liver was fine and upping the amount of Folic Acid I took seemed to be what sorted it out, the levels returned to normal anyway. I've been taking Mtx for over 5 years.

Online is the worst source of information possible about drug side effects on the grounds that nobody is likely to post a big, blaring blog about how they have none whatsoever. On the other hand I think your post is a very sensible approach to getting a more balanced view.

LyndaKenny profile image
LyndaKenny in reply to

Thanks so much - I did want a balanced view

AgedCrone profile image
AgedCrone

Lyndak........Probably lots of people have taken many Dmards for years without side effects, but don't feel that is newsworthy enough to write about it. After all it would be a bit of a downer to those struggling to find the right treatment to read how well PollyAnna is doing on Drug A when you are feeling dreadful on it.

For what it's worth I took Methotrexate for 7 years very successfully, then my tolerance of it changed & I needed to stop taking it & move on to another Dmard....but that is how it goes.

But as you must have realised by now, there are hundreds of different types of RA & it is not easy to be diagnosed & put on the drug that is going to suit you at the first attempt........also if a person has other underlying conditions - that affects what treatment is possible.

All you can do is find a rheumatologist you trust & then consider if you are going to take the drugs prescribed.

I don't think people on here are negative......we can only tell of our our own personal experiences & how we have dealt with them.

Whether someone takes Mtx or any other prescribed Dmard is a personal choice & we all take our time deciding. Personally I eventually took it because anything had to be better than the excruciating pain that meant I was housebound & as I lived alone I was heading for a nursing home. I was not willing to go that route without putting up a fight. So here I am 18 years later leading a life still on RA drugs, but I don't seem to be that much worse off than my peers who don't have the condition.

I hope you do find a rheumatologist you feel you can trust who will talk you through what he/she thinks is the right treatment for you. But do try not to become too stressed over deciding ......I think most people on this site will agree stress is certainly something to avoid as it does seem to adversely affect the condition.

Hope you find your Golden Bullet very soon.

LyndaKenny profile image
LyndaKenny in reply to AgedCrone

Thank you - it wasn't this site so much as other negative stuff I've read . Thank you though- it's good to hear you did ok on it for 7 years

nomoreheels profile image
nomoreheels

Very possibly, but you need to bear in mind that forums are most often used by those who are looking for help, advice & reassurance. Those with nothing to report, like me here to give the above, are just getting on with things. It's been my best med, kept me pretty well controlled. Not everything here is negative, though I can understand it can seem that way. I've been on MTX 8 years & my side effects aren't noteworthy! 🙂

LyndaKenny profile image
LyndaKenny in reply to nomoreheels

Thank you

sylvi profile image
sylvi

Yes me i have had no side effects and i have been on it for years.xxxx

LyndaKenny profile image
LyndaKenny in reply to sylvi

Thanks that's good to hear

oldtimer profile image
oldtimer

I know several people who I see at the blood clinic or who come to the local NRAS group who do not have any significant side effects. One of the people who helps run the local group takes it and has a stressful job with a lot of travelling.

LyndaKenny profile image
LyndaKenny in reply to oldtimer

That's great to hear

hawker955 profile image
hawker955

Me thanks, but I wasn't on them for very long.

Eiram50 profile image
Eiram50

No significant side effects for me

gwynedd profile image
gwynedd

I'm on the injections and have very little side effects. Maybe feel a bit tired the day after. I had nausea with the tablets but it was the best decision I made to change from the tablets to the injections. Good luck x

Wyaatch profile image
Wyaatch in reply to gwynedd

Gwenedd--I've read that injections often work as well as biologics--did it relieve the fatigue if you had any before? Did Doc tell you how or why it worked?

gwynedd profile image
gwynedd in reply to Wyaatch

Hi Wyaatch,

Yes the injections did relive my fatigue, I was wiped out for the following 2 days when on the tablets, now I just feel a little groggy the next morning but it doesn't stop me from doing my normal day to day stuff. Much better all round really.

Wyaatch profile image
Wyaatch in reply to gwynedd

Thanks so much--did you ever hear why injections work better than pills?

gwynedd profile image
gwynedd in reply to Wyaatch

Yes, it's connected to the fact that the injections aren't entering the stomach, as the tablets do, which means no nausea issues. I'm guessing that that's also linked to less fatigue as well. As soon as I mentioned to the rhuemy nurse my symptoms she offered me the option of trying injections, I was a bit apprehensive at first but I can honestly say it was the right move for me.

Simba1992 profile image
Simba1992

We all need to hear that the meds we are forced to take do as little harm as possible. Starting with these hard drugs is not easy. You want to know everything, and yet you don't😳.How we react to mtx is very individual but statistics do show us some real facts about efficasy and side effects. The med does work for around 60% for variable time, 60% have reported side effects of varying degree. Personally I think you can minimize the adverse effects of mtx with dietary measures and supplements. I found it very useful to learn to understand how mtx is working in your body and what organs are affected, instead of concentrating on the symptoms. When you understand better you are able to support the most effected organs with nontoxic alternatives. Not easy, no.😕

nomoreheels profile image
nomoreheels in reply to Simba1992

I've noticed you've said that MTX works for around 60% before Simba but not that 60% have report side effects, that would be nearly everyone. Can I ask where you'd found these (both) stats?

Simba1992 profile image
Simba1992 in reply to nomoreheels

These stats I have checked in many places. Sorry don't have the links off hand. But they are from research papers that have been quite dependable.

LyndaKenny profile image
LyndaKenny in reply to Simba1992

That's worth noting- I never thought of it like that

helixhelix profile image
helixhelix

I've been taking it for 6 years and have no side effects now, apart from an extra hour in bed the morning after. It has been brilliant for me and given me a normal life back.

LyndaKenny profile image
LyndaKenny in reply to helixhelix

That's so good to hear

Runrig01 profile image
Runrig01

Yes no side effects, except maybe a reduced appetite, which is doing wonders for the waistline 😁

LyndaKenny profile image
LyndaKenny in reply to Runrig01

Ha ha awesome

Good idea to drink plenty of water while on Mtx to help prevent side effects, that's something that many of us find and some rheumys advise while others don't seem to mention it.

LyndaKenny profile image
LyndaKenny in reply to

Thank you x

I have had no side effects since I've been taking MTX.

LyndaKenny profile image
LyndaKenny in reply to

That's great, thank you

Gnarli profile image
Gnarli

I've never had a problem with MTX. From the first dose of 15mg in January rising to 25mg, apart from feeling slightly icky and a bit slower the following day its all good. I take it from a teaspoon (less time-consuming than individually) during my evening meal and wash them down with ginger beer, because I like it. You can hear a lot of horror stories from those unlucky people it didn't agree with because those it does suit are too busy getting on with their lives to post. We are all so different in our RA journey and our reactions to the various meds that it would be impossible to say how you would react. I can only say that giving it a try would be the only way to find out if it is your best friend of a drug or not. Hugs

Jan

LyndaKenny profile image
LyndaKenny

Thank so much for sharing this

cornishjan profile image
cornishjan

I felt awful while on the pills but since I changed to injections have had virtually no side effects - just feel a little tired afterwards.

LyndaKenny profile image
LyndaKenny in reply to cornishjan

I will remember that if tablets affect me, thank you

farm123 profile image
farm123

Bear in mind it is usually the negative aspects that are published as people have had issues with the med. People who take it with no side effects and it controls them have no need for forums such as this and can just carry on with their lives. It is surprising the number of people who take MTX and you would have no idea that they do. When I had a very bad spell I was surprised by the people who were on MTX as they were shocked by how bad I was because they 'just took MTX'. Farm

LyndaKenny profile image
LyndaKenny

That's so true, thank you

Wobblyone profile image
Wobblyone

I'm taking it with no side effects.

LyndaKenny profile image
LyndaKenny in reply to Wobblyone

Brilliant

-Mii profile image
-Mii

No side affects ..... Just hair felt bit thinner that's all. Good Luck!

Beviejon1 profile image
Beviejon1

I took MTX for 24 years.Apparently my body chem changed and I had to move on to a new DMARD.During those years I had occasional nausea .Drink plenty of water.

LyndaKenny profile image
LyndaKenny in reply to Beviejon1

Thank you , I've begun drinking much more lately

Juliachoo profile image
Juliachoo

Hi, fairly newly diagnosed, due my 3rd dose of Methotrexate, been a little queasy but nothing too bad so would say side effects so far minimal x

LyndaKenny profile image
LyndaKenny in reply to Juliachoo

I'm newly diagnosed too, hence all my questions lol . Thanks for replying xx

helenlw7 profile image
helenlw7

I haven't ever had side effects, and I've been on mtx for about ten years.

Lragan profile image
Lragan

Yes, the only med I've taken without side effects is Sulfasalazine. Many with methotrexate! They have been a lot better since I started self injections.

Lisa

LyndaKenny profile image
LyndaKenny in reply to Lragan

Thanks for replying

Neverending63 profile image
Neverending63

I had none until I reach 20mg then my liver results went up the creek. It was reduced back to 15mg and that's what I currently take along with hydroxychloroquine with no side effects. Which is good because I had major side effects from sulphalazine and leflunomide and can't take either of these now Hope this helps !

LyndaKenny profile image
LyndaKenny in reply to Neverending63

It does thank you

Have been on methotrexate for at least 20 years and absolutely no side effects. Am now on methotrexate and Enbrel. Feeling good. Hope this helps

LyndaKenny profile image
LyndaKenny in reply to

That's great to hear

Sueh121268 profile image
Sueh121268

I had terrible mouth ulcers on the tabs but since I've been on the injection and upping my folic acid I haven't suffered with any side effects, I'm on hydro chloroquine as well, good luck x

Luvmydaughter profile image
Luvmydaughter

So glad you asked this question. I have been asking the same for the past 4 weeks of which my daughter has been diagnosed with RA and is having a major flare up. Now they added in Humira. I was hoping the Methotrexate would work find on its own. Additionally, she is on Ramos. So now it is 3 medications and she does not take ANY PILLs except vitamins. She is my life and my only child and family. It is very difficult to see her pain. We are trying our best to be hopeful that she will be able to live a somewhat normal life again. She is off work for 4 weeks now as she has no strength in her right arm/hard. Its only the two of us...literally so we are doing our best to research and find what is best and the most safe.

Anyone taking methotrexate with Humira? I am concerned about the Humira and the doctor said she should stay on it for 2 years. Ugh.

Thank you

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