Advice on MXT please..: Hi can anyone who's had success... - NRAS

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Advice on MXT please..

Dobcross1 profile image
45 Replies

Hi can anyone who's had success with MXT please give me their opinion.

Have had 7 doses 10 ml and 11 of 15ml up to now. Fingers swollen, both ankles badly swollen all around (constantly) and throbbing - plus occasional other problems. Managed to get my review brought forward to end May... but what do I say? I really want MXT to work- have I given it long enough? Obvious answer to increase dose but am already losing hair and have other (not too bad) side effects so am scared to do so. Any opinions gratefully received. Thanks.

45 Replies
Mmrr profile image
Mmrr

Dobcross, I was on MTX varying doses, up and down, for 50 weeks. I never managed more than 15mgs due to side effects.

MRI scans at that point showed active synovitis and I was changed to biologics.

Looking back I wish I had pushed more for a medicine review sooner than the 50 weeks. I feel a lot of time was lost and damage done to joints.

18 weeks is a long time to still have swollen joints and other problems, particularly if you are having side effects and it seems likely you won't manage higher doses.

You could ask what your options are ?

Reinforce your joint issues and ask about the damage being done ?

Don't be brushed off with the side effects you are experiencing.

Let us know how you get on ?

Dobcross1 profile image
Dobcross1 in reply to Mmrr

Thanks Mmrr. I guess I know I have to do something but just clinging to better the devil you know.

mccaffs2014 profile image
mccaffs2014

It took a while to work for me but when it did it was really good. The hair loss and slight nausea stopped as well. Talk to your rheumatologist . Good luck and I hope you feel better soon.

Dobcross1 profile image
Dobcross1 in reply to mccaffs2014

Thank you.

helixhelix profile image
helixhelix

I think nearly 3 months on 15mg is enough time to show whether it is having any effect on you. Have your inflammation markers improved at all? Are there any other signs that it is working - even subtle ones? My great breakthrough was when I realised I could tuck the sheets in without my fingers hurting too much.

And I do understand the devil you know, as it’s such a decision to take a drug that you don’t want to start again. But like Mmmr I think you should be very clear with your docs that this isn’t good enough.

There are loads of options apart from increasing doses. Adding in different DMARDs, changing to different DMARDs, as well as increasing dose. I was on triple therapy (MTX, hydroxy and sulpha) for 8+ years that worked well for me.

Dobcross1 profile image
Dobcross1 in reply to helixhelix

Thanks Helix. Yes MXT is working to some degree and maybe an increase would do the trick. I wouldn't hesitate if it wasn't for the hair loss (vain I know!). My CRP has always been ok and its 1.6 at the mo - but it was never high. Not sure whether to increase MXT or try something else.

helixhelix profile image
helixhelix in reply to Dobcross1

Talk to your doc....Once I got to a certain dose of MTX I found adding in an extra drug made more difference than going up higher.

Floralqueens profile image
Floralqueens

Hi. I’m currently on Metoject 25mg weekly. The MTX is keeping my symptoms under control the majority of the time. I wouldn’t like to have to face life without this drug, it really does make a difference to RA sufferers. You must take the advice of your Rheumatologist.

Dobcross1 profile image
Dobcross1 in reply to Floralqueens

Thanks I will see what he advises. Good to know MXT is working for you at the higher dose.

precious123 profile image
precious123 in reply to Floralqueens

Thank you for telling us that. I’m only on 10mg a week injection. However it has already made a huge difference in my life. Praising God for that. I was in really bad shape and I have been on all the drugs. We were going back over the ones i had been on. Thankful that we decided together to try the methotrexate again. I will be going back on the 31st. We will see if he increases it. I hope maybe he will as I still have some issues but overall I am in excellent condition compared to where I was.

Peggy

Gnarli profile image
Gnarli

After 18 weeks I would have thought there should have been significant changes in your pain and inflammation. I suspect you are going to need either add-on meds or a different one. Maybe use this time until your appointment to keep a diary, take photos and prepare to insist, politely, that as the MTX is not enough that something be done asap. I understand your reluctance to change meds but the fear of joint damage is real. Hugs

Dobcross1 profile image
Dobcross1 in reply to Gnarli

Thanks. Yes I think that's the choice I'm going to have to make when I see the Rheumatologist. Thanks for the tip re diary, photos etc.

Julies49 profile image
Julies49

I’m on metoject 20mg weekly and have been for years with not many problems hope you get sorted

Dobcross1 profile image
Dobcross1 in reply to Julies49

Thanks I'm prepared to try the higher dose and/or an add in. Glad its working so well for you at the 20mg.

Deborah22 profile image
Deborah22

I took 6 months before I noticed a vast improvement, had my dose increased to 20 and changed to injections, but have been stable for almost 2 years. Flare ups obviously, only to be expected with RA , but majority of the time a huge improvement when I compare life before Methotrexate.

Dobcross1 profile image
Dobcross1 in reply to Deborah22

Brilliant thank you. I think I need to try 20 and give it more time..

Joy_1 profile image
Joy_1

Dobcross. It was not till I hit 15mg that I began to see the positive effects of MTX.

My sweet spot has turned out to be 20mg. At this dose I have my life back!!! So I say a HUGE 3 cheers for MTX.

She comes with her side effects which I have been able to manage over time and the folks on this site have lots of simple hints and tips that really do work if do get the side effects.

Joy

Dobcross1 profile image
Dobcross1 in reply to Joy_1

20 seems to be the dose which has helped a lot of people so I'm really hopeful. Thanks so much for your reply.

Joy_1 profile image
Joy_1 in reply to Dobcross1

You are welcome.

To limit the side effects at 20mg I do the following:

1, moved across to jabs to get rid of gut issues

2, drink 7 to 8 glasses of water on MTX day to get rid of headache day after

3, take folic acid every day but not MTX to get rid of nausea

4, take MTX just before I go to bed

As I say just post a question if you have side effects, there are many seasoned MTX folk on this site that have very simple solutions.

Dobcross1 profile image
Dobcross1 in reply to Joy_1

Thank you so much for the tips. I will definitely use them. Feel much better about increasing the dose now.

AgedCrone profile image
AgedCrone

Most rheumatologist would like you to give it 24 weeks...to see if your inflammatory markers are coming down....it takes longer for some than others.

So unless you are feeling really unwell on it...not just no improvement in your joints but the really nasty side effects some people experience....I’d stick with it if your rheumy advises you to.

I can’t remember how long it took to kick in for me, but I had 7 pain free years on it.......it’s really worth hanging on in there because if it works for you it’s an easy drug go take, it doesn’t interfere with your every day living , & once you are settled on it....you just need a regular blood test.

Talk to your rheumatologist & see what he advises...maybe he will add another Dmard that will kick start everything.

Hope things look up soon,

Dobcross1 profile image
Dobcross1 in reply to AgedCrone

Thanks for your reply. An increase in dose and giving it more time seems the way forward. Grateful for your advice and experiences.

Amy_Lee profile image
Amy_Lee

Dear dobcross1,

I would like to share my own experience with mtx. I started with 15 mg, my appointments started with monthly then slowly 2 months once. A year later, mtx was increased to 20 mg. As my rheumy said that my improvement was very slow, hence she added 20 mg Arava for me.

I started to feel a bit of improvement, the pain level started to reduce, after about 6 months of treatment. I had most of side effects including hair lost. When I complaint to my rheumy, she said that mtx would give me very much more benefits than the side effects, she wanted me to bear with them and continue with mtx.

My liver markers went up and down after 1 1/2 years with mtx. That was what my rheumy worried about. Other side effects, she just ignored. When I felt the reduced in pain, I started to demand more mtx dosage. My rheumy said she could only increase it slowly to ensure my body could take it.

Since the liver markers went up and down, when it continued to went up to 3 times the normal, my rheumy started to reduce mtx dosage for me. At this time, my condition was already stable and I was having a very normal life then. My rheumy declared that I was in remission after about 1 1/2 of treatment. Most of the side effects subsided after about 1 1/2 years treatment except vomiting and stomach upset on the day of mtx. So much so that when I saw mtx, I started to vomit.

I told my rheumy again on the vomiting issue, she again told me to continue mtx and wait. when the dosage reduced to 7.5 mg, I was okay with mtx after that. No more vomiting though at time I still have a bit of stomach upset on the day of mtx.

I did keep a very good record of my development and the medicines that I take, so I can always refer to the record when I have doubt.

I have not experienced any flare since my remission in Dec 2015. I hope I continue the same way until the last day.

I hope my experience helps. My advice is to check with your rheumy if you are in doubt. To me, I think you need to give more time to mtx to work on you. Just for your information, my joints are in good condition though I do feel my joints are not as strong as before.

Amy

Dobcross1 profile image
Dobcross1 in reply to Amy_Lee

Wow thank you. You have given me hope! Wonderful to know MXT has put you in remission and I really hope it stays that way for you.

Amy_Lee profile image
Amy_Lee in reply to Dobcross1

Beside working very closely with my rheumy, I also worked very closely with my physiotherapists. They told me that I would be with the center for at least 3 years but I was discharged after about 3 to 4 months. My physiotherapists were very happy of my performance, they said that since I could continue the exercises myself, so they discharged me early and trusted that I would be okay to carry on.

Very slowly and painfully, I did the exercises twice daily with just anything I could get hold on to. The whole purpose was to exercise the joints to make them flexible. No one can help us but ourselves.

Also, knowing that I was in great pain, many direct sales people approached me for their "100% natural" ways of treatments. I ignored them all as I told them that they were not my rheumy, they would not know what happen to me. I did not want to risk my joints and I was okay with the side effects as my rheumy would take good care of that for me.

No harm trying to eliminate certain foods one at a time and put them back to your diet slowly to see how your condition respond. I am okay with all kinds of food, so I had put them all back into my diet.

My appointment with my rheumy is about 5 to 6 months interval now. That only tells me that my condition is getting very stable and good hence my rheumy needs not see me that often.

Amy

Dobcross1 profile image
Dobcross1 in reply to Amy_Lee

Thank you. It's great to know things are going so well for you.

CagneysMum profile image
CagneysMum

Hi. I’m on 20mg injectable mtx and it works well for me but only when coupled with hydroxychloroquine. On its own it wasn’t effective enough. Good luck

Dobcross1 profile image
Dobcross1 in reply to CagneysMum

Thank you. 20 dose seems to have helped most people so I think that's the way to go, to at least try it. Glad you are well now.

LesJames profile image
LesJames

Hi I have been on the maximum dose of MTX for some considerable time without any serious reactions. I was taken off them by a stand in DR after which I suffered assorts of muscular and skeletal problems. I was put back on them after a review. I am now steady and not suffering too much.

Dobcross1 profile image
Dobcross1 in reply to LesJames

Thank you, the higher doses do seem to give results so I will try that I think. Glad you are now steady.

I've had doses from 7mg (tablets) through various doses then went on injections from 20ml to 25ml. I never had any side effects. Are you taking Folic Acid, if so how often? Some rheumatologists say 1 or 2 days but others say every day except MTX day.

Dobcross1 profile image
Dobcross1 in reply to

Hi thanks for your reply. I'm taking 5mg folic acid every day except MXT day. Am on the injections and the only side effect really bothering me is the hair loss. Otherwise I wouldn't hesitate to ask for a higher dose now.

CagneysMum profile image
CagneysMum in reply to Dobcross1

Try a herbal supplement called Biotin - available on amazon. Stopped all my hair loss that was caused by methotrexate.

pd118 profile image
pd118

had to see foot doctor 3 x inject once a week love

Dobcross1 profile image
Dobcross1 in reply to pd118

Thanks and good luck.

pd118 profile image
pd118 in reply to Dobcross1

learnt to inject upper legs love

precious123 profile image
precious123

I have a question does anyone have any mouth ulcers from the methotrexate? My bottom lip on the inside is full of ulcers. I am on 10 mg injection a week right now. Praise God what a difference in my life this has made as I have failed all else available at the moment. Even the older drugs. My rheumatologist was starting me over on some that I had already been on. We decided to try the methotrexate again. The first time I tried it years and years ago it caused my liver enzymes to mess up. So I’m worried about these ulcers.

Thanks

Peggy.

Floralqueens profile image
Floralqueens in reply to precious123

Yes I too have problems with mouth ulcers, my ulcers are also in the area below my bottom lip, they are so very sore. I am on weekly 25mg Metoject, I will mention my mouth ulcers to the Rheumatologist at my next appointment. I hadn’t thought about the connection!

LesJames profile image
LesJames in reply to precious123

I have had and continue to have occasionally, Mouth ulcers and sores up my nose. they go after a while. I take one 5mg of Folic acid 2 days after the MTX. I am on 25mg Oral a week. Hope this helps

Georgiab123 profile image
Georgiab123 in reply to precious123

Hi I’m on methotrexate when I was getting mouth ulcers my consultant said take 6 folic acid a week until then I was only taking them once per week

precious123 profile image
precious123 in reply to Georgiab123

I will let my Rheumatologist know about the folic acid. I take a 1mg prescription strength folic acid a day. Is that prescription strength you are talking about or over the counter?

Georgiab123 profile image
Georgiab123 in reply to precious123

Mine 5mg a day I take them 6 days a week, my hospital consultant told me to up them

precious123 profile image
precious123 in reply to Georgiab123

Thank you I will surely tell my doctor when I go back.

precious123 profile image
precious123

Ohh and my rheumatologist told me that mid summer there is a promising new drug coming out for RA suffers. When I find out what it is I’ll post.

Dobcross1 profile image
Dobcross1 in reply to precious123

Oh please do. Let's hope its available to all and not just a lucky few depending on NHS funding etc. I cant help much with the mouth ulcers I only had one at the start of the treatment I used Iglu numbing gel on it from Boots.

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