Advice about increasing methotrexate

marion1952

Hi Folks

I saw the Rheumy Nurse yesterday for my 3 month routine appointment and she showed me my monthly CRP and ESR results in graph format on the computer and it was clear that since January the level of inflammation in my body has been slowly rising - ie the methotrexate (15 mg) is not controlling the RA as well as it was in 2009..

I am loathe to increase the methotrexate to 17.5 mgs because I'm worried about (1) my liver (2) having constant chest infections over the winter (3) nausea ..... but on the other hand I'm also worried about what the inflammation is doing to my heart and other internal organs!

The Rheumy Nurse is going to speak to my consultant and get her advice, but I would welcome some advice from other methotrexate peeps.. eg did you find you were constantly getting infections on 17.5 mgs?

(I did try adding hydroxy earlier this year, but it made me feel very sick, so I stopped it).

Many thanks

Marion

skezier

Hi Marion,

I am sorry your are having to up the mtx as well. OI got the same problem and already have the constant running nose and a cough but 15, for me, just isn't doing the job so I think its worth upping in my case... mind could do without the hair loss....and nausea but got anti emetics for that one.

I really hope the upped does will work for you and sending a ((((( ))))) and a bucket of hopes as well Cris xx

dorcas

Hi Marion

sorry you've got this news.
it's a constant battle having arther isn't it, and all too often we seem to have to move up and down the meds scales to counter arther's attacks. :roll:

the good thing is that your rheummys are keeping such a close eye on you . if they increase your mtx you will be closely monitored (increase in blood tests) so that if there are any signs of your liver not 'liking' the increase they will be quick to respond.

I didn't find any increase in chest infections when on the higher dose but didn't tolerate it in other ways (nausea/ sickness) so they moved on to 15mg Mtx injections...just as effective but easier absorbed and less side effects (for me).

we are all so different Marion and what meds we need/ tolerate differs too, but I'm sure your rheummy will find the right...and safe...balance for you.

let us know how you get on.

love n (((hugs)))
iris x

dreamdaisy

Meth alone has never controlled my inflammation levels. On 7/3/09 my CRP was 104, my ESR 79. 24/6/09 they were 66 and 54 respectively, then after much pred (20mg per day for 10 days, 15 thereafter) they were both 19 (27/7/09) I had my first humira that week too, a fortnight later they were 1 and 5 respectively, adn they have stayed at, or around, those levels.

In my humble opinion methotrexate is pants. Like all drugs it can be very effective for some, have some effect for others and do sweet FA for the rest. I am firmly in that last camp but my consultant wants me to carry on with it. I cannot for the life of me see why. The things that 'work' for me are humira and prednisalone, but they only work in terms of reducing inflammation. I'm still on crutches, I'm still in pain. I'm still taking anti-inflammatories to help with the pain, but I don't think they do: I have no inflammation anyway!

I think you might be in need of a review marion. There are other drugs available and if your inflammation isn't being controllled that just makes life more (and un-necessarily) uncomfortable. I can't remember if you are going back soon - if you are, ask about other options. DD

carola

Hi Marion

I'm up to 20mg weekly now of Methotrexate and have been for some months now. Increased it by 2.5mg each time.

Every so often I feel sicky and have tummy trouble however persevering just in case it decides to work.

Everyone is different and remember you will have your regular blood tests to monitor any possible negative effect on organs.

Hopefully you will find a happy balance soon.

Good luck, Carol

salsal

i take 22.5mg of mxt no problems ( and i have at least 2 large glasses of wine a night :oops: ) in conjunction with my humira it works a treat and the raise of 1 tablet made all the difference to a big flare i was having.
everyone reacts differently to different drugs good or bad your rheumy team do not dish out these drugs lightly and will keep an eye on you
for me the mxt did not work effectively untill i was put on humira but if i miss a dose of it i know about it!!

cthornley

Hi Marion
It really depends on your personal tolerence.
I am on 25mg and it was only the last increase from 22.5mg that has given me mild nausea otherwise I have little problems with it (touch wood)
You could try it and see, you can always drop back if you find it unbearable...as for you liver...thats what monitoring is for, so they can worry about that aspect for you.
If you are really worried talk it over with your rhemy nurse or dr, reassurance and advice is part of their job too
Good luck
Chrissie

julie47

Hi marion

I am like you I hate taking more than I need to.

I too suffer from chest infections and are regularly goin for chest xrays.

Hope you get sorted soon and that your body can tolerate the increase.

(((((hugs))))) you must need them

Love julie pf xx

speedalong

Hi Marion, when will you know the consultant's advice?

DD - does that mean you have written to your consultant about wanting to give up the meth and he has said no? Not like you to do something you don't agree with? What are the repercussions if you do give up the meth? Is it something you have to decrease gradually? If you changed your mind could you go back on it?

Speedy

dreamdaisy

Hi speedy. Yes, I did write and ask if I could drop the meth, and the answer was a resounding NO. I have duly replied, detailing the dud results on meth alone and noting that a) the humira has had the desired effect re inflammation markers and b) she put me back on the Hattie Jacques therapy to get me over a bad spot which WOULD NOT BE HAPPENING IF THE ********** METH WAS DOING ANYTHING.

Ooooooh. Where did that come from? Not been a good day, and I don't know why. Please accept my apologies. One does get so exasperated at times. DD

marion1952

Hi Folks

Thanks for your responses..

I've started a flare up in my knees and neck/shoulders today, so I think I probably do need to either increase the meth or add something to it.. (when I saw the nurse on Tuesday my joints were OK even though my CRP and ESR were raised!)

I expect to hear from the Rheumy Nurse early next week Speedy.

Marion x

cthornley

speedalong wrote:

Hi Marion, when will you know the consultant's advice?

DD - does that mean you have written to your consultant about wanting to give up the meth and he has said no? Not like you to do something you don't agree with? What are the repercussions if you do give up the meth? Is it something you have to decrease gradually? If you changed your mind could you go back on it?

Speedy

Speedy
if you give it up you can come off cold turkey if you want its not like steroids which you need to decrease gradually or your body can go into shock. MTX is easier to stop, I gave it up for 2 years or so to have my son , but if you start it again you need to build your tolerance up again from a low dose....I noticed it missing very quickly when I did it, but it does work for me very well and i'm very luckily and seem to tolerate it well too
Chrissie

dreamdaisy

Speedy has OA and thus does not take meth. She was inquiring about my options. Bless. DD

speedalong

Hi Marion,
keep us updated.


DD- have you had a reply to your latest response?

Chrissie - thanks for your answers. Good that meth works for you, long may it be effective.

Speedy