METHOTREXATE - Shall I, Shant I ?

sanmar63

Hi everyone,

Just had a letter from the Rheummy to say that my heart and lung xrays are fine, and I will be able to start on Methotrexate when I see him in 2 weeks time. The problem is, I'm still not completely sure about taking it. :?:

I dont care if my hair falls out, but I have a real phobia about vomiting, and that is my real worry.

On the other hand, I've had RA since the age of 1 yr - but never felt as ill as I have done over the past few months. Things have changed, and i'm so confused by everything (probably because i'm so tired!) :?

I would really appreciate anyones opinion, Pleeeeease!!

Sandra xxxxxxx

elnafinn

Hi Sandra

In the meanwhile until people answer your thread, take a look at the thread on this page from username Marooned with the title of Help Again Please. People who are on metho are helping her daughter.

Look after yourself,
Elna x

cthornley

sanmar63 wrote:

I dont care if my hair falls out, but I have a real phobia about vomiting, and that is my real worry.

Sandra its completely up to you...if you flick through the topics on here there are many people who have shared your fears and others....
the main thing you will see is that everybody reacts differently
I personally have never vomited due to MTX i'm on 20mg a week and the worst I have ever felt is mild nausea for a few hours on the day after I take it, my hair hasn't fallen out either, i'm slightly more sensitive to the sun (but as i'm pale and interesting anyway i always take care) and catch bugs a bit more but I think thats mainly due to having a nursery going toddler

Remember if you don't get on with it you can always stop!!!

dorcas

Hi Sandra!

I've been on Mtx 15mg injection for two years now (in combo with anti tnfs) and like cthornley have never actually been physically sick with it.

I did have nausea, discomfort and hair loss when I took it in a higher dose in tablet form; but not had the same level of problems since switching to injection. Increasing the amount of Folic Acid also stopped the hair loss.

Starting any drug always needs careful consideration but balanced against not taking drugs which your rheummy believes would help dampen arther is the potential for continuing inflammation and as a result irreversible joint damage.

The choice is yours Sandra....but don't let fear of what may or may not happen stop you giving it serious consideration.....it is a very useful drug and side effects are dealt with very quickly by the rheummys.
Talk it over again with rheummy or your doc especially your phobia of being sick which I am not minimising. ...x

let us know what you decide.

iris x

dopeykit

Hi Sandra,

Just thought I'd share my thoughts (although Iris has pretty much covered it ).

I have just started on 10mg of MTX and so far havent had any side effects except a few mouth ulcers. I had far worse side effects with some of the painkillers I take. It's only been a month but I'm already feeling benefits - much less pain and morning stiffness. I;ve been able to start back at work and see my friends again. The best feeling is knowing that I'm helping stop further damage as well.

There are some good anti-nausea drugs if you do find yourself affected but hopefully they will build up the dose slowly enough that the side effects won't be noticeable.

Good luck and do let us know how you get on

Kit

joyful164

Hi there Sandra

I know everyone reacts differently to these MTX and similar.
For myself, I have not lost any hair, perhaps a little thinner, but that's getting older that does that. I have had a slight nausea, depending on what time of the day you take it or do the injection.
If you take it early evening or just before going to bed, then I have found that works best for me.
I inject 20 mg each week on a Tues afternoon.
I can take up to 3 months before you feel any benefit at all.

I went on to the web to read up on it as soon as it was mentioned to me and I think that can make you worry unnecessarily.
I hope you decide to give it a whirl. The benefits certainly outway the negatives.

Joy

lindalegs

Hi Sandra,

Have you a tendency to vomit?

I'm on 10mg Mtx tablets and I did vomit at first ....sorry. I will add that I am prone to vomitting, when I get headaches (not due to meds) I usually end up with my head in a bucket. :roll:

The GP gave me antimetics to stop the sickness and all side effects did disappear after the first month of taking Mtx and my Rheumy lowered my dose from 12.5mg to 10mg because I felt the benefits of taking it very quickly.

I think I am unusual in actually being sick most peeps just feel nauseous..... so please don't let my experience put you off.

Mtx has been a great drug for me all stiffness in the morning has gone and the pain has lessened to a very manageable degree, I still get the odd bad day but nothing compared to what I used to get.

Hope my post hasn't been a negative one for you but I thought you'd prefer to hear all experiences.

Luv Legs

sanmar63

lindalegs wrote:

Hi Sandra,

Have you a tendency to vomit?

I'm on 10mg Mtx tablets and I did vomit at first ....sorry. I will add that I am prone to vomitting, when I get headaches (not due to meds) I usually end up with my head in a bucket. :roll:

The GP gave me antimetics to stop the sickness and all side effects did disappear after the first month of taking Mtx and my Rheumy lowered my dose from 12.5mg to 10mg because I felt the benefits of taking it very quickly.

I think I am unusual in actually being sick most peeps just feel nauseous..... so please don't let my experience put you off.

Mtx has been a great drug for me all stiffness in the morning has gone and the pain has lessened to a very manageable degree, I still get the odd bad day but nothing compared to what I used to get.

Hope my post hasn't been a negative one for you but I thought you'd prefer to hear all experiences.

Luv Legs

Hi Legs - No, I'm not prone to vomiting (Thank God!) I think the last time I was sick was probably about 15 years ago when the kids brought a bug home from school!!
I'm glad you told me of your experience - and I have to say that at the moment I am leaning towards trying MTX, as the main opinion seems to be positive rather than negative - (even yours!)
Thanks for taking the time to let me know about your experiences, you really have helped!

poppy30

Hi Sandra....

I've been taking MTX for 5 years (15mg) and have never vomitted. I did used to feel sick after taking the tablets but a wise forum member advised me to take them before I went to bed so I sleep through the nausea.... and this works for me .
I also take my MTX on a friday evening so if I do end up feeling a bit rubbish the following day :shock: I don't have to worry about going into work or doing anything too strenuous!

Good luck with whatever you decide..... I'm sure there are numerous MTX threads on the forum that can help!!

Poppy x

fourferrets

I used to take mine in the morning, and would feel nauseous from midday onwards, so I started to take them at night thinking I would sleep through that 'icky' feeling, HMMM nope lol, Now I wake up feeling bleh instead

But I have recently been trying anti-sickness tabs and they seem to be helping

I am prescribed folic acid but haven't taken any, My hair is as thick as it ever was.

As for MTX and sunlight, 'til I read it on here I didn't even know there was supposed to be an issue!

skezier

Hi Sandra,

I'm sort of with Legs here and throw up ever so easy...... However I have recently started mtx and was lucky cus I wanted it as it might help 3 conditions I got and well nothing else seemed to be I find it makes me feel sick but as with the others I take em at night. The only real down side is I still feel very wished for 48 hrs after I taken it but I think that will pass.

I am also on the folic acid..... now that makes me feel extremely sick but again hopefully it will pass the longer I take it.

I wonder if your able to get an antiemetic up front as a precaution? Sometimes they will give them you (or at least they have me from time to time) and its a bit like a safety net then maybe? Good luck and well not everyone gets the vomiting so you might not. Keep us posted please? Cris x

psyart

Hi - i have been on injec of methx for quite a while now (may 09) and do get a yukky feeling but am on anti sickness tables 2 days before and 2 days after, which help a lot!! but i am with the others in that i am so much better than this time last year, so this has to be a positive thing? think it has to be your decision but you must weight up all the things - for and against?? nearly everyone who is on methx seems to feel it is a positive meds, but do talk to the hospital staff. good luck and let us know what you decide.

Louise xx

sanmar63

skezier wrote:

Hi Sandra,

I'm sort of with Legs here and throw up ever so easy...... However I have recently started mtx and was lucky cus I wanted it as it might help 3 conditions I got and well nothing else seemed to be I find it makes me feel sick but as with the others I take em at night. The only real down side is I still feel very wished for 48 hrs after I taken it but I think that will pass.

I am also on the folic acid..... now that makes me feel extremely sick but again hopefully it will pass the longer I take it.

I wonder if your able to get an antiemetic up front as a precaution? Sometimes they will give them you (or at least they have me from time to time) and its a bit like a safety net then maybe? Good luck and well not everyone gets the vomiting so you might not. Keep us posted please? Cris x[/quote

Hi, Just to say thanks to everyone for their help with this - (stupid that the only thing putting me off is the thought of vomiting!) but because my neck is completely fused and my mouth only opens 2cm, vomiting is an horrendous and painful experience for me and unfortunately, even the thought of it brings me out in a cold sweat!
Anyway, thanks to you all again, and I will keep you all posted.
Love Sandra xxxxxxx

cthornley

fourferrets wrote:

I am prescribed folic acid but haven't taken any, My hair is as thick as it ever was.

hmmm you really should be taking the Folic acid...the reason you are prescribed it is because MTX depletes your natural reserves which you get from food - its one of the side effects of MTX
you might not notice it directly as it can take a while and the effects are similar to other side effects fatigue/ upset tummy etc but it affects your body's cells ability to renew themselves and can have some serious long term side effects such as anaemia and problems with your bone marrow

sorry i'm not trying to tell anybody off just highlight how important it is

lindalegs

cthornley wrote:

fourferrets wrote:

I am prescribed folic acid but haven't taken any, My hair is as thick as it ever was.

hmmm you really should be taking the Folic acid...the reason you are prescribed it is because MTX depletes your natural reserves which you get from food - its one of the side effects of MTX
you might not notice it directly as it can take a while and the effects are similar to other side effects fatigue/ upset tummy etc but it affects your body's cells ability to renew themselves and can have some serious long term side effects such as anaemia and problems with your bone marrow

sorry i'm not trying to tell anybody off just highlight how important it is

Hi fourferrets,

I agree with CTH in this and think that you should be taking the folic acid ....it's not just to stop your hair thinning, it's to help all the side effects of Mtx including the nausea.

.....unless you have some particular reason for not taking it, of course.

Luv Legs