medication blues

sixtiesgirl

Hi
I have OS in my neck, hands, hips and feet. AS in my spine

I am thinking about stopping my medications, I take Celecoxib, Pregabalin daily, Co-Codamol sometimes at bedtime as they make me feel sickly and fuzzy. Six months ago started fortnightly self injections of one of the new biological medications Humira. But I still have the pain, stiffness and (in my finger joints ) swelling.
I wonder what damage all these things are doing to me. I have an apt in Feb with my Consultant and wonder if I should try a month free of medication before seeing her or wait and discuss it with her.
Has anyone eles given up medication, or what do others think I would appreciate a discussion.

thanks
Rose

cakegirl

hi, I too am totally fed up taking all the meds but there's no way i'd get through my days without :sad:

i've been taking methotrexate for 18 months now and to be honest although i felt as though it was helping in the first 6-12 months, i would say the last 6 months i've felt no relief at all. i'm thinking of having a break from it myself and coping as i did do for 10-11 years with diclofenac, co-codamols and steroid injections....

it gets you down doesn't it xxx

forgot to also add i'm currently keeping a pain diary x

dreamdaisy

I consider stopping the meds every now and again as I know I 'feel' a deal better in myself without them, but their role is to slow the progress of the disease and hopefully reduce potential joint damage. I have been on humira since July 09, injected meth too, and none of the promised things have come to pass but I think things would be worse if I was not taking them. You must not stop anything without consulting your rheumatologist, these are powerful meds but then arthritis is a powerful disease; you can't fight a fire with snowflakes. Stay with the meds for the time being, ask your GP about alternative pain relief in case there is something to suit you better, then chat to your consultant about matters, yes? I wish you well. DD

julie47

Hi Rose

Personally I would wait and discuss it at your next appointment. Afterall its not that far away.

Take care
Juliepf x

ritwren

It's interesting to see that others feel like stopping their meds from time to time as well. I go through phases sometimes when I think I'll stop my methotrexate but in the end I don't. I'm too afraid of having a bad flare up which can't be controlled or which will take too long to control.

The other thing I say to myself is, what if my consultant told me I could'nt have methotrexate for reasons of finance or the post code or for some other reason, how would I feel then. The answer is that I'm glad to be able to have the meds and would not be happy if they were taken away from me.

I do feel down and tired and sick some of the times, at least every couple of weeks or so I feel one or other of those symptoms but in the end, by lurking on here or just thinking about so many others who are worse off than me, I get through until the next time.
I hope you get strength to do what is right for you and get the support you need to cope with this disease.
Rita.

stickywicket

Look you guys, I see where you’re coming from. Believe me I understand the let’s-chuck-the-meds-and-see-where-it-leaves-us argument. Trouble is, I’ve had RA for 50 years and I know exactly where it’ll leave you – in the same place I was until the disease modifying meds arrived. It’ll leave you in more pain and with deformed joints.

I hate taking meds but, like you, I have a disease that aint going to up and off and leave me. We’re stuck with it. Sometimes it’ll be better and sometimes worse but I, and it, are in it together for life.

It may be that you both need more disease modifiers not fewer. That might enable you to take fewer paindullers. Steroids are not a permanent solution. They bring their own problems. You worry what the meds are doing to you? That’s why you have the regular blood tests – so that they know. If you stopped the meds you might rightly worry about what the, now unchecked, disease was doing to you.

I have always aimed for the least possible amount of meds and, for that reason, as soon as things start to look up a bit I make sure the meds decrease accordingly. But not without first sorting out how it should be done with my rheumatologist - maybe just the GP for paindullers or stomach protectors or any other stuff he prescribes. Definitely never just off my own bat.

I’m sorry to sound so dogmatic but it is so important for your health to work as a team player in all this and not take unilateral decisions.

ritwren

Stickywicket you're right of course.