Trouble with MTX

pixiepint

Hi all,

This is my first post here, although I've been lurking for a while. I have seronegative juvenile onset RA. I was diagnosed 11 years ago at the age of 14 and I've had a rough time of it, for a few years it was well controlled but now its back with a vengence. I'm having a huge flare up at the moment and as much as the pain and inflamation sucks, the thing I hate most is that I get a bright red and itchy rash all over my face and neck and the glands on my neck are so swollen that I have the general appearance of a hampster. Sorry i know i'm moaning, and we all know what its like, but I almost got used to being almost well all the time. I'm having a hard time working. I'm starting my PhD in september and I can't help but feel that I don't have time for this. I'm not sure if I just forgot what it was like, or if its worse.

And now, to top it all off, I'm having all kinds of problems with my medication. Methotrexate has never agreed with me. But now I'm suffering from really bad side effects. We're talking serious nausea, Diarrhoea, chest pain and fatigue that just floors me for about 2 days a week. I'm also on Planquenil, and steriod injections. and a combination of Brufin Retard and co-dydramol for the pain. I've been to my GP and my rheumy and talked about my side effects. Two weeks ago I was diagnosed with severe anemia, and told that it was probably due to prolonged use of mtx and other medications.

My GP seems indifferent to the whole thing, and said that this kind of thing is to be expected. My Rheumy is great usually, said that she'd liketo start taking me off of mtx, but that she doesn't know what else to try and she's talking to collegues for ideas. She seems defeated. I'm not depressed, I don't do that anymore, but I just feel angry. Just pure rage at myself and the whole thing, I mean it. if I could move I'd kick the crap out of something. But I can't so you're getting this ridiculously long post instead.

I need some advice because I don't know what to do. I can't carry on like this, but I'm worried that coming off of meds with no alternative will leave my RA completely out of control. And in the meantime does anyone have any suggestions on beating said side affects?

If you're still here, thank you for reading my rant. I needed it.

Pixiepint

mistywillow

pixiepint wrote:

Hi all,

This is my first post here, although I've been lurking for a while. I have seronegative juvenile onset RA. I was diagnosed 11 years ago at the age of 14 and I've had a rough time of it, for a few years it was well controlled but now its back with a vengence. I'm having a huge flare up at the moment and as much as the pain and inflamation sucks, the thing I hate most is that I get a bright red and itchy rash all over my face and neck and the glands on my neck are so swollen that I have the general appearance of a hampster. Sorry i know i'm moaning, and we all know what its like, but I almost got used to being almost well all the time. I'm having a hard time working. I'm starting my PhD in september and I can't help but feel that I don't have time for this. I'm not sure if I just forgot what it was like, or if its worse.

And now, to top it all off, I'm having all kinds of problems with my medication. Methotrexate has never agreed with me. But now I'm suffering from really bad side effects. We're talking serious nausea, Diarrhoea, chest pain and fatigue that just floors me for about 2 days a week. I'm also on Planquenil, and steriod injections. and a combination of Brufin Retard and co-dydramol for the pain. I've been to my GP and my rheumy and talked about my side effects. Two weeks ago I was diagnosed with severe anemia, and told that it was probably due to prolonged use of mtx and other medications.

My GP seems indifferent to the whole thing, and said that this kind of thing is to be expected. My Rheumy is great usually, said that she'd liketo start taking me off of mtx, but that she doesn't know what else to try and she's talking to collegues for ideas. She seems defeated. I'm not depressed, I don't do that anymore, but I just feel angry. Just pure rage at myself and the whole thing, I mean it. if I could move I'd kick the crap out of something. But I can't so you're getting this ridiculously long post instead.

I need some advice because I don't know what to do. I can't carry on like this, but I'm worried that coming off of meds with no alternative will leave my RA completely out of control. And in the meantime does anyone have any suggestions on beating said side affects?

If you're still here, thank you for reading my rant. I needed it.

Pixiepint

Hi Pixiepint
Glad you decided to post your feelings. It s helpful even if noone has the answer. I don't envy you doing your PHD when you are feeling so rough, it is hard enough doing one anyway! There are other drugs other than methotrexate which work in different ways and so may not cause you so many side effects. Hopefully your rheumy will explore them. It is trial and error as I am sure you have seen from other posts, getting the meds right.
Generally even the nicest of GP's dont seem able to sort the meds out, i think it is a very specialized area. Many of us go to pain clinics as these are often the best places to do this. I'm getting a bit sleepy now and know i'm not writing very comprehensively so i will sign off but just wanted to welcome you. What are you doing your PHD in. I did mine in immunology but that seems like a lifetime ago now
Take care Gillx

pixiepint

Thank you. It's really great to be able to talk here. I trust my rheumy to come up with something eventually! but i'm not good at waiting around and doing nothing. My PhD is in comparative literatures, i am very excited, Although i'm sure that will pass once i actually start it!! really want to get this under control before september

pixiepint

jeannie2

Sorry, pixiepint .... 'bottom' sould have been a better word. Don't like 'language'.

oopie07

hello welcome to the forum, i have also recently joined

can;t really give you any answers although i have the same experiences with gps. I think sometimes they fob you off cos they don't know the answers either. don't know about you but makes me feel alone and no-ones bothered really. chin up and hope things pick up for you

lou x by the way i really admire your grit in doing a Phd, good luck! :!:

pixiepint wrote:

Thank you. It's really great to be able to talk here. I trust my rheumy to come up with something eventually! but i'm not good at waiting around and doing nothing. My PhD is in comparative literatures, i am very excited, Although i'm sure that will pass once i actually start it!! really want to get this under control before september

pixiepint

lindalegs

Hi Pixiepint

Glad you've posted and had a rant.

So sorry you're feeling rubbish at the moment. Can't you get to see your Rheumy earlier than your scheduled appointment if you're having problems with Mtx?

Sometimes they can put you on different Dmards to help and also on combinations. You could also be assessed for anti-TNF treatment which is what they use if you can't tolerate conventional medication. I really wanted to reassure you that there are lots of different drugs to help you out and that Mtx is the only one.

GP's are often out of their depth with arthritis but that's because they're a jack-of-all trades you need a 'master' of one.

Hope you feel better soon.

Luv Legs

pixiepint

Thank you for all your kind posts. I think going for anti TNF might be the answer. I know we'll come up with something soon. Much better today, even went out shopping. I bought some really beautiful shoes. which cheered me up!

P.s I'm sorry if i offended anyone with the A word in the title of my post.

Pixiepint

Wonkylegs

HI

just a thoguht ...... are you taking MTX tablets? if so, then have you been offered or asked about MTX injections?

The reason is that I couldn't tollerate the tablets, but get on well with the MTX injections, and don't get the nausea & other horrid side effects that i did with the tablets.

oh, and they work better for me too ..... but not everyone has found that to be the case.

may be worth asking if this hasn't been discussed before.

pixiepint

Wonkylegs wrote:

HI

just a thoguht ...... are you taking MTX tablets? if so, then have you been offered or asked about MTX injections?

The reason is that I couldn't tollerate the tablets, but get on well with the MTX injections, and don't get the nausea & other horrid side effects that i did with the tablets.

oh, and they work better for me too ..... but not everyone has found that to be the case.

may be worth asking if this hasn't been discussed before.

yeah i'm aware of them, but they haven't been offered. i'm begining to think that i'm not being forceful enough in explaining just how badly this is affecting me. I am going to have to go back to my rheumy and say: "this isn't working for me. I want to try X.." Once i decide what x is. LOL.

I know i'm being flakey, but it shouldn't be this hard to get the treatment i need. *sigh*