Methotrexate, have you tried it

ritwren

I've recently started Methotrexate after an awful flare which landed me in hospital. I'm gradually increasing the dose and having 2 weekly blood tests. I know about the side effects but wonder how folk have fared on this tablet? Have you had many side effects and how did you manage them. Have you had to stop the meds? Would really value any input from you guys. I'm regularly here even if I don't post and find you all such a reasurring helpful supportive bunch of people.
bye for now rita

jennywren

ritwren wrote:

I've recently started Methotrexate after an awful flare which landed me in hospital. I'm gradually increasing the dose and having 2 weekly blood tests. I know about the side effects but wonder how folk have fared on this tablet? Have you had many side effects and how did you manage them. Have you had to stop the meds? Would really value any input from you guys. I'm regularly here even if I don't post and find you all such a reasurring helpful supportive bunch of people.
bye for now rita

debsmartin

Hi Rita

I have been on methotrexate (18 tablets) for 16 months and I have had very good results, my doctor has recently added one tablet a day of leflunomide and I have been relative pain free apart from the odd flare up. I do have a few side effects but its nothing compared to the pain relief that I now have. I take my tablets on a Wednesday teatime and other than feeling abit yukky on a thursday I feel fine most of the time.

I know that for everyone with goods results there is always somebody with a horror story, my horror story would be on sulphasalazine that I was put on first - I suppose thats why there's so many different tablets they can try us on.

Hope it works well for you.

debs

roczko

Hi Rita

My experience of methotrexate is not a happy one.

I had a cough but it was quite a severe whooping type cough where I couldn't get my breath. Very scary and ended up with broken ribs because it was so severe.

As has been said, there are other drugs though should it not suit you though I do hope you find it beneficial.

Patrick

jackie1955

Hi Rita,

Started MTX straight after diagnosis of RA. 10mg for first 4 weeks, then 15mg. Last week my rheumy said he was "90% happy" with things and my med "just needed tweeking" so I am going on 20mg per week.

Side effects: The only thing I noticed was, just recently, I developed a slight tickly cough. Rheumy says MTX can cause a dryness in the throat, mouth and eyes. The cough is very mild, worse when I'm anywhere air-conditioned. Thats probably whats made it more noticeable, as I've been having the air-con on a lot in the car!

I take mine on Sunday teatime, no ill effects but strangely I always sleep like a log on Tuesday nights!

As for how the treatment is affecting me...... well, I don't feel any worse I still get some stiffness and pain and swelling, apparently that will happen throughout my life now. Thank goodness for painkillers! I went away over the weekend and forgot to take them with me :shock: by Monday I was in agony and felt about 100.
I don't bother about my blood test results - I figure if I'm getting better/worse my body will tell me. And should there be any need, the nurses will contact me anyway However, some folks do like to keep track of their results, so its a personal choice really.

Hope this helps Rita.

Jackie x

ritwren

Thank you all so very much for taking the time to post replies to me. I'm hopeful that the methotrexate will at least hold things at bay for a while. Despite having steroid injections and steroids injected into my joints, I'm so tired and have very little appetitie. I thought they were supposed to enhance things. :roll: Has anyone else found this ? I'm guessing things will sort themselves out in time.

tkachev

I have been on methotrexate for a few years now.They have helped a lot with the pain but can make you feel sick,sometimes upto 48 hours.You have to weigh up the pros and the cons.I dont want to go back to that awful all consuming pain(like being eaten alive) so I persevere.
Thankfully I am back down to 15mg from a high of 22.5mg but now also take Humira because the meth was not as effective as it once was

Lots of love
Tkachev

tkachev

I also experience a very dry throat Jackie.
I have to take a drink everywhere.If I forget I panic and my throat locks up and I cant breathe.My OH has a supply in the car for me.Its just difficult to carry a drink as well as walking with crutches.I think i will have to get a nose bag like a horse.

Regards Tkachev.

sarahbenn

hello i take methotrexate and had a bit of a roller coaster ride with it to be honest started off on the tablets and gradually went on to the injections of 15mg a week both made me very very sick and extremely tired , I'm now back on the tablets but back down to 10mg a week I've been told i need some sulphasalazine as well now but a bit scared about taking loads of drugs :roll: its like whats already been said weigh up the pro's and cons the metho works for my arthritis but makes me queasy id rather feel a bit queasy than be in agony its whatever's best for you really, hope it works out for you

psyart

Hi - i was put on MXT tables in Feb 09, starting with 10mg then gradually increased to 20mg with lots of blood tests and brilliant support from the hospital!! i suffered badly from nausa, fatigue, and feeling like crap, but the pain was decreasing and i was able to do things easier!! but i was also having a bad time at work, work load was increased and lots of stress!!!! in april i was put onto injections - since then i have self injected 1ce a week. i started at 15mg then up to 20mg. i still had fatigue, and nausa so they took me off MXT for 2 weeks, to see if it was me or the medication!!!! 'arthur' came back with venguence!!!! so went back on injections and try to be positive with the whole thing!!!! i agree with other comments - you have to weigh up your options! i dont like the meds, i have folic acid everyday other than day of injection, anti sickness tables for about 2 days after injec, feel like crap 2 days after inject, but this is getting better!! my hair has gone dry and nails brittle but pamper myself to make sure i am not falling apart!!!!!!! at the end of the day, what is right for you? it does take time though - months and trial and error!!!!! hope this helps??!!! :?:


L x

psyart

sarahbenn wrote:

hello i take methotrexate and had a bit of a roller coaster ride with it to be honest started off on the tablets and gradually went on to the injections of 15mg a week both made me very very sick and extremely tired , I'm now back on the tablets but back down to 10mg a week I've been told i need some sulphasalazine as well now but a bit scared about taking loads of drugs :roll: its like whats already been said weigh up the pro's and cons the metho works for my arthritis but makes me queasy id rather feel a bit queasy than be in agony its whatever's best for you really, hope it works out for you

Hi sarah - can you have anti sickness tables? i do and they work really well, but only take them when i feel really nausa!! do eat small bits of choc or ice cream when bit queasy or drink coke cola!!! these seems to settle stomach and also stay off heavy and spicy foods!! :roll: :roll:

madwestie

Rita, I hope you get on ok with the MTX. I started on the tablets about 18months ago gradually increasing to 20mg i did have some hair loss (not too bad) so i take folic acid 3x a week the tablets were not quite keeping things under control and as they did want to increase the dose because of the hair loss in changed over to the injections (20mg which is like taking 25mg of tablets) which are so far working really well. The tiredness has almost gone most days and i have felt better thani have for ages. I still get a bit of hair loss but nothing that causes me to worry but no other side effects.
I also take plaquenil and my friendly pain killers (what would we do without them).

mrsdalloway

I have read through some of the posts and it is really interesting how everyone has different experiences of different meds. I didn't tolerate mtx at all either in tablet or injection I felt really ill for 2 days every week when taking it. Yet I have take sulphasalazine for 14 years now and not had any side affects at all and I take full dose of 6 along with fortnightly injects of humira. I think its a case of try everything to see what works.

jaspercat

Hi, I have been taking MXT for a number of years, I started on tablets slowly increasing to 20mg, I felt sick and very tried after taking them, my Rheumy tried to increase it to 25mg, but my body wouldn't tolerate it at all. Just over a year ago I changed to injections at her suggestion, again I was doing ok on them, not feeling sick or tired.

Gradually though I have started feeling really sick on the injections, I hope that you get on ok love Jaspercatxx

mistywillow

jaspercat wrote:

Hi, I have been taking MXT for a number of years, I started on tablets slowly increasing to 20mg, I felt sick and very tried after taking them, my Rheumy tried to increase it to 25mg, but my body wouldn't tolerate it at all. Just over a year ago I changed to injections at her suggestion, again I was doing ok on them, not feeling sick or tired.

Gradually though I have started feeling really sick on the injections, I hope that you get on ok love Jaspercatxx

Hi I have been on mxt for about 4 years now 10mgs and prednisilone 5mgs. Occasionally things get out of control but generally at this dose things have been tolerable. I feel sick the day after I take it and have a bit of a headache but I wouldnt be without it. When I tried to reduce the dose last year things flared up big time so I guess its 'keep popping the pills' Hope you get on ok with them
Gillx

ritwren

Thank you all so very much for taking time out to reply and be so supportive. It's such a great help to get opinions from those of you who have been through this yourselves. It is interesting to note similar side effects like tiredness, sickness/nausea are common. I realise it's very early days for me and I have a long road ahead of me but you guys are as always a big help.

lindalegs

Hi Rita,

I've been on Mtx since April 2008. 10mg per week tablets. I can only report good things, my arthritis is quiet, sickness settled down and I'd forgotten I could feel this well.

It works for me.

Luv Legs

ritwren

That's so reassuring Linda Legs, thanks for letting me know. Hopefully within a couple of weeks my body will get used to it too.

englishrose

I have been on MTX for 8yrs. Started on tablets and then onto injections. For the first few weeks I felt unwell the following day but now it fine - no side effects at all. Hope you flourish on this med.
Jane

sarahbenn

psyart wrote:

sarahbenn wrote:

hello i take methotrexate and had a bit of a roller coaster ride with it to be honest started off on the tablets and gradually went on to the injections of 15mg a week both made me very very sick and extremely tired , I'm now back on the tablets but back down to 10mg a week I've been told i need some sulphasalazine as well now but a bit scared about taking loads of drugs :roll: its like whats already been said weigh up the pro's and cons the metho works for my arthritis but makes me queasy id rather feel a bit queasy than be in agony its whatever's best for you really, hope it works out for you

Hi sarah - can you have anti sickness tables? i do and they work really well, but only take them when i feel really nausa!! do eat small bits of choc or ice cream when bit queasy or drink coke cola!!! these seems to settle stomach and also stay off heavy and spicy foods!! :roll: :roll:

hi there yes i do have some anti sickness tablets which do help a little i will give the eating advice a try thanks a lot

katat1

Hi,
I have been on methotrexate since the end of April 09 plus plaquenil and 1 x 5mg folic acid per week. It took a while but seems to be working. I was given a general steroid jab at the start to control the pain while the mtx got into my system as it takes a few months and that really helped. By the time the steroid jab wore off (after about 2 months) the RA pain was noticeably better so I declined the offer of a second steroid jab as I felt the RA pain was manageable by then with the help of pain killers when needed. I have had no side effects from the meds so far - no nausea or hair loss and I am not as tired as I was before either. I take the mtx at about 10pm on a Friday night so sleep through the first hours after taking it anyway. My rheumy suggested doing it at that time as if I had any side effects I would be asleep and then have the weekend to recover so it wouldn't affect work and this has worked well for me. I started on 7.5 mg and have gradually gone up to 15mg (6 tabs) and I take the folic acid 24 hours later. It takes time to work and though I am impatient it is not more fast acting I do feel positive about the future on these meds.
Best of luck!

ritwren

You guys are all great for replying. It's wonderful to get honest opinions and to have so many of you being positive. Thank you all again.

livinglegend

ritwren wrote:

I've recently started Methotrexate after an awful flare which landed me in hospital. I'm gradually increasing the dose and having 2 weekly blood tests. I know about the side effects but wonder how folk have fared on this tablet? Have you had many side effects and how did you manage them. Have you had to stop the meds? Would really value any input from you guys. I'm regularly here even if I don't post and find you all such a reasurring helpful supportive bunch of people.
bye for now rita

Been on MTX for about 8 years, with just a bit of nausea for a couple of days after taking. All medicine could have side effects, but we are all individuals and all react differently to medicine. You could get no side effects at all like most of the people who take it.

Joseph 8)

joyful164

Hi

I started on tablets, but due to a duo denal ulcar problem, the MTX was not being passed into my system properly, so started injections, which were 10 mg. then 15mg and now I am about to go on to 20 mg because my symptoms are all coming back with more areas affected. At first it was just hands, feet, but now it is in my knees badly. shoulders, well just everywhere. I have also had Tramadol, Pregabalin 2 x150 mg twice now instead of 1 twice a day.
Instead of Co-codomols I hve been told to just take Paracetamols.

Hope you get on alright with the MTX. Always remember to take your Folic Acid every day instead of the day you take your MTX and you should be ok. Normally, I feel very tired and a bit of a headache, but everyone is different, so just stay positive with it and give it a chance.

joyful

karinak

Hello again,
I start taking this on Monday 15 mg, so will let you know how it goes............i dont want the sicky thing though so fingers and toes crossed.......Karina x

ritwren

Thanks you again for your replies. Karina good luck do let us know how you get on.