bit of advice please

psyart

hi

will try not to ramble on for too long - but could do with bit of advice!!

was diagnosed 3 yrs ago with PA, due to job and lots of stress, etc, steadily got worst and was put on methodrexate in feb 09. due to horrid side effects, was put on injections but have still had side effects!! eg, on anti sickness tables, but still suffer on odd days, hair on head is thinning, get tired day after injection, not eating properly for couple days after. But it has helped reduce 'arthur'. I still get bit of pain, have to take pain killers nearly every day, but a lot less than before on meds. some days I think they got it wrong, but then ' arthur' plays up and I know its here for life!! the last 3 days have not been good, flare ups in lots of places, not sure why but then does there have to be a reason? anyway, I am due to see the specialist next week and really want to reduce my meds from 20ml to 15ml!! i am so fed up with side effects that i dread the day i have to inject!! and i dont want to be like this for life - dreading the meds that have helped but whose side effects depress me!!! i dont want to change meds, they are all toxic and to start again really dreads me!!!!
what am i asking advice about?? has anyone else felt like this and reduced thier meds? if so, did 'arthur' become unbearable again?? i know that life will never be the same, even if i do try to fight it and some times ignore it, but am i doing the right thing by dropping the meds??? or will the side effects get better the longer i'm on methotrexate??????

hoping for help

louise

dorcas

Hi Louise,

I also have PA and some OA for good measure. I'm on Humira and Mtx also by injection.

It's always a difficult choice...putting up with side effects for the sake of keeping symptoms effectively under control or changing to new meds that as you say can have toxic effects on the body.

You really need to chat this over with rheummy...what will reducing the dose do in terms of arther symptoms?...presumably you are on 20mgs as your rheummy thought this was your optimum dose?...so reducing it may result in more flare ups.

They may suggest a change to a different DMARD or perhaps a combo of biologics and reducing the dose of Mtx, I don't know as we are all different and rely on the 'experts' to guide us!.... but it sounds like you are finding the side effects too severe to tolerate. The hair loss while on Mtx is common and taking/ increasing folic acid is supposed to help with that (on advice).

I stopped taking Mtx tabs a few years ago due to the side effects (nausea, loss of appetite and then low WCC) but after being on various other meds for 3 years with poor control of the PA Mtx was reintroduced a year or so ago in combo with Humira which I have been on for almost five years now.. The Mtx is at a lower dose and by weekly injection; Humira fortnightly injection. .......I still get some nausea but it is not as bad as it used to be.

I know I resisted being put on other stronger meds too; but after talking it through with my consultant I could see the sense in changing and have not regretted it since. Toxicity is monitored through regular bloods and in my experience any adverse changes are quickly responded to so I personally have stopped worrying about that side of things.

I'm sure others will tell you of their experiences too....but remember what works for one doesn't necessarily work for the next person...so, my advice is to talk it over with your rheummys.

hope all goes well for you..let us know what happens at your next appointment. Iris x

Wonkylegs

HI

It is a difficult thing you ask about .... and I can only help with my experience of a part of that conundrum.

I have RA and take MTX by injection and have been up to 25mg, but that proved too difficult to manage with recurrent mouth ulcers and the hair problem got worse too. I did feel worse nausea wise on the higher dose though. However, my joints really appreciated the higher dose :? :?

in the end they decided to add Leflunomide into the mix. They have had to lower the MTX dose from 20mg to 15mg, and I did have a few tummy problems from the new tablets for a few weeks, but I can really feel the difference, and I get much fewer side effects than I did before.

Of course, the Leflunomide might not be rigth for you, and there is no guarantee that the combo would work for you in the same way, but I do know that the more our disease is out of control the more likelihood of joint damage there is ..... and they can't sort it once it has happened :shock: so that is something to be thinking about too.

good luck with your deliberations - it is such a difficult balancing act.

hugs (((((()))))))))
wonky

psyart

Hi

thanks for the replies - will let you know how I get on!! not bril again this morning, feeling sick and sorry for myself, which makes me more determined to change something!! I know everyone is different in how they are with medication, but its nice to know that you are not on your own when feeling down and like c@ap!!!!

thanks again

Louise