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Date: 19.08.2010
From: Jessica

Subject: PAIN - on methotrexate - Normal???

I was diagnosed in April 2010 (I'm 31) with an inflammatory type of arthritis. That was after 18mths of pain with no one being able to tell me what it was. My Rhumy thinks is PA although I have no skin symptoms yet. My feet are in agony all the time and I can't really walk much at all anymore. I live in runners. I started Methotrexate about 14 weeks ago and on week 11 I noticed a big improvement in my symptoms and was thrilled. Especially as he told me that I would continue to get better and better with more time on the drug. However just yesterday, after 2 weeks of relief, the pain is back!! Is that normal? Is it what they call a flare up? I thought that once the drug was working you would stay improved? Also it coincided with my doc increasing my dose from 15mg to 20mg. Could that be the problem? I'm so depressed about it today.. I feel that there's no light at the end of the tunnel anymore.
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Date: 20.08.2010
From: Lynn B

Subject: Re: PAIN - on methotrexate - Normal???

Hi Jessica Im sorry you are feeling so depressed, There is light at the end of the tunnel, I havent got there yet but nearly... It can take a long time to get the meds right I still havent quite got there yet 9 months later. But it is getting better you have to have patients and find the right meds to suit you. And dont give up you can come on here and scream and moan as much as you like. We still all have flares. But you take care.
there is light somewere......
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Date: 20.08.2010
From: Marilyn

Subject: Re: PAIN - on methotrexate - Normal???

Hi Jessica, I have only been on MTX for 4 weeks. On Monday I start on 15mg instead of 10mg I have had no improvement at all yet but I suppose it is early days. I am at the moment having a 'flare up' it is about the worst one I have had. My hands, feet and back are hurting today. I would also like to see light at the end of the tunnel. I think this RA takes over your life. I wish I could turn back the clock. How on earth do you get this horrible disease. You would think by now that more could be done for all of us.Sorry to go on but today is not a good day, and the ironing and shopping still need doing.
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Date: 20.08.2010
From: Shirley

Subject: Re: PAIN - on methotrexate - Normal???

Hi Jessica, I've been on MTX for 5 weeks and my heart fluttered when you said you had a big improvement at week 11 as I felt a glimmer of hope so I really feel for you how disappointing it must be to have the pain back. I think this forum is a brilliant opportunity for us to share our experiences. Even if we don't have all the answers, it helps to know I'm not the only one going through this so thank you for sharing your feelings and I hope things soon improve again for you.
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Date: 21.08.2010
From: Jill

Subject: Re: PAIN - on methotrexate - Normal???

Hi Guys, Im so sorry that u feel Knocked back!, this happend to me too, when I first began my MTX 3 half years ago, I thought OMG this is a huge decision taking the med, after all it is toxic, anyway, I wnt for it, and like U guys felt so depressed that it didnt do what I thought it wld.....thing is guys these meds arnt 'cures' ive begun to realise this, it took me a while to understand that MTX alone wasnt the best route for me, they offered me the Ant TNF meds, ive been on Enbrel nearly two years now(BTW, MTX injections help stop the sickness, as the tabs go thru the stomach and the jabs dont) im now on the MTX Jabs, no side affects at all....no side affects on Enbrel....the Only side affects I get is becos of the disease, fatigue, flare ups......I think sometimes the rhummys and the Bio Nurses mislead us into thinking this is all going to stop! sadly it doesnt, we r all different, some better than others, some worse than others, also some ppl cant even take painkillers.........

Guys I can only talk about my personal expereinces and the ones that ive read on this forum(use to come in daily for nearly two years, so ive read about a lot of peoples experiences with the diseaaes and the meds), I dont come in as much, I know, but anyway, sadly I learnt the hard way, the Meds will help control our disease, but only to a point, the meds dampens down the progression of the disease, but we r never free from the odd flare up...since going on Enbrel, my flare ups r less, but can still be painful, but they dont last as long, I have totally readapted my life, i dont do much housework, have a fab fella, thank god, I cant iron, as it kicks off my painful shoulders and neck, so i dont do it, some have to i know,.....guess what im trying to say is.....Try and remain POSITIVE, IF POSS, but also be realsitic, this condtion is for life, but just becos we r on those rotten(but helpful to a point Meds) doesnt mean we r cured, there will be imporvement, there has to be, but then there is a stage that u realise that, this si as good as it gets......I have to speak how i feel, and what others have written, ive been on my meds 3half years MTX, and enbrel 2 years, yet I still have pain(flare up now, mini one mb) on Opiates for the pain, and still have degeneration in differnt parts of my body......doesnt mean that will happen to any of u, but its a possibility, becos its
happening to me and had others tht I once knew on here.....Not trying to make U gals feel worse, Im trying hard, and rambling too much, but basically trying to say DO NOT give up, and if U feel the MTX isnt working, there is always the Anti TNF meds(last resort) Enbrel and the like, they hepled so much much more than just MTX, speak to your rhummy about all this, ask them the truth, the meds help, but we have to learn to re adapot our lives, cut down on the socialising sadly, dont be too proud hving a spotless house, keep it clean of course, use lots of antibacterial, I do lol, but learn from others, get tips, and also Listen to your body, if ya strugggling, stop and rest........what im saying is, U cant just take the meds and expect it all to go away, it wont, but U can help yourselves by knowledge, re adapting ya lifestyle, go bed an hour earlier, eat well, listen to your body, and see ya rhummy regular, nd ask for Honest answers, my rhummy didnt tell me much....I had to live it, to know the truth.......life doenst end, we just have to learn to live with it, if I cant walk, I use my mobile scooter, what blidddy fun that is, no pain either, how fab is that?.....tkae a crutuch out with U, so when ya in pain,lean on the crutch, or stick, Ive got a funky walking stick, well cool.....most of this condition is about NOT alowing Depression to set in, I did, and now ive learnt so much more as time has gone on, anyway, this isnt suppose to depress u, its suppose to enlighten u a bit.....Please, Positivity is everything, never be too proud to ask for support, help from family, tell your hubbys fellas just how bad it is, take them with u to appointments, hopefully they will ralise how bad it all is for us/u......and claime your entitlement to DLA!!

ok said enufff.....remember, dont let the disease take over your life, work your life around 'It'......I have, and it helps to know that I will not let it take over ME! take care gang xxx
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Date: 21.08.2010
From: Shirley

Subject: Re: PAIN - on methotrexate - Normal???

Thanks for all this, I too as a newcomer thought that once the MTX kicked in I'd be back to normal but the more I read about it the more I am beginning to understand it's not a miracle cure. I guess the reality is all a bit much to take in at first so perhaps I need to re-think and adjust my goals.
If my expectations are too high it's gonna really hurt to come down to earth with such a bump!
I know I need to try and stay positive though, so thanks guys and please let us know how you're doing Jessica, good or bad doesn't matter. x
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