I feel so down :(

I was diagnosed with RA around 4 months ago now, i had just started getting settled on MTX when i recieved a call from the doctors saying my blood results had come back abnormal (liver count). My rheumy nurse advised i reduce the MTX slightly and add Sulfasalazine (to increase over 4 weeks). Since taking it I have the worst headache in the world and feel so down and tearful :( i feel worse in myself than i have done for a long long time, Im guessing the headaches are a side affect of the Sulfasalazine so ive decided im not going to take them anymore. When i was first dignosed i was so relieved that i could be put on the right medication and maybe feel more human again, that unfortunately hasnt happened yet. I still get flares, not quite as bad i have to admit but my god, what i would do to feel healthy again!! I know its going to take time to reach a good balance with medication but i admit, im really struggling emotionally. I work full time, im exhausted, im tired, i hurt and im getting so frustrated with it all :(

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  • aww lislou you are still early in the diagnosis and they say that the first year is the most difficult whilst they try to get our medication right. I am in a similar boat to yourself working full time and have been taken off metx but put on arava - its exhausting its like two steps forward and three back.

    I hope you feel a bit better soon - can you ring the rheummy nurse and say that you can't tolerate the sulfas.. so they will at least give you another dmard to try and get the ra settled. all the best Lislou.

  • Hi,

    Firstly so sorry you feel this way, I had the side effects of headaches with sulfuaz also and stopped it But I did phone my rheumatologist to tell him.

    I too haven't found the right drug yet but I'm not giving up hope, try not to yourself.

    Tell your doctor how you feel maybe they can help if only a little.

    As for work can you not do part time until you get your ra controlled, I have and I wouldn't be coping Ie I hadn't done this.

    Hope you feel better soon

    Julie x

  • Hi lislou

    I'm so sorry you're feeling so low. The first months are really the worst, and trying to adapt to the drugs can be pretty hard. It is exhausting, especially if you're working full time. Like Julie above I was able to take time off work and it did help hugely, so do see if you could manage to cut down a bit for a month or two at least. But it will get better, so keep talking to your doc/nurse and nagging them to find something that works well for you. It took me quite a while, and I also got frustrated by the slow progress, but just over a year later I do now feel human again. Good luck, Px

  • Hi Lislou, I totally know how you are feeling the same thing happened with me. I just didnt know what to do with myself I was SOOOOO tired working full time and doing everything else I felt ill with stress and exhaustion. Meds are taking time to kick in too...I had a chat with HR and I have reduced hours to part time, until I feel I can go full time again (not that I am planning that particularly) work does have a responsibility to help you out here, so go and see HR and talk to them to see if any help is forthcoming, even if it means reduction in responsibilty temporarily.

    Good luck, it will happen, meds will eventually be right, work and tiredness will get sorted, just keep on going, If you cant, get a sick note to take time out to recover ....

    Pet xxx

  • Hi

    I tried Sulfasalazine recently and developed depression and had to stop taking it. I too had headaches whicjh passed and I went off my food totally, which is not me!. Depression doesn't happen often, I in 1000 people and it is hard to see if it is the drug as the coping with the disease can make you feel low and isolated. If it continues or gets worse check with your consultant.

    I have had RA for a lot of years and have found ways to cope, it is very hard at the start, but you will get to manage it. I have stayed in work and been lucky to have good support. I have always been open about my issues and they have made reasonable adjustments.

    Try and focus on things you enjoy and keep seeing friends. The good ones will try to understand what you are going through.

    Chin up and keep positive! :-) (I know that's not always easy)

  • Hi try and keep your chin up, I remember crying and physically shaking with pain in the first few months of my illness.. now three drugs later things are a lot better, it has been a long journey, but Im so much better and you will get much better too x

  • I only realised how depressed I had become on the Sulphasalzine when I had to stop taking it because of a nasty rash and swollen neck. I felt loads better as soon as i came off it and begged my GP not to put me back on it for that reason so it may be rare but I'm convinced it happened to me too. I don't do depression either but had same with steroids which is why I'm avoiding them now even though my hands and wrists are currently excruciating.

    I haven't felt that way at all on the MTX (only taken one dose though so far). Or at least I feel very scared about what side effects I may get now - especially after the Sulpha experience - and still got conflicting emotions about the diagnosis of RA, but so far don't feel much change in me from MTX at all apart from even more tired the day after taking it.

    So I really think you should consider dropping the Sulphasalazine and ask for one of the other DMARDs instead. Tilda T x

  • Hi, I woke up with RA one morning this March. I now know that I had no idea how hard a time people suffering RA underwent. The things I found helpful was to try to keep believing it will maybe take a bit of time, but there will be a drug out there that will help, I talked to my boss and took some sick time,mainly as I couldn't move, they sent me for talking therapy which has definatley helped me break the cycle of low self steem/pain/stress to help me mange day to day living. I've heard from so many other people now though that although the drugs i've had so far haven't worked something will and it just in some people takes some time. Pace yourself and try to keep talking to your RA nurse. I wanted to hide away from my friends as I went from a festival loving outdoor person to someone not wanting to manage to get out of bed. They made sure I didn't drop them though thankfully.These have been the things that help me through, time helps, and give yourself a break so your not to tough on yourself going through this, it does get better, thinking of you and remember you are not on ur own even if it feels like it sometimes. xx

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