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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  • Hi Lislou - I've been low today too so here's a big hug wending its way to you from me. I took Sulfa for 3 weeks but had to come off it because if serious (rare) side effects. I can tell you I felt nauseous, low and a bit headachy on it and consequently had been dreading the MTX. But no problem so far although first dose on this week past. With Sulfa I felt nauseous straight away so I think it must have disagreed with me more than MTX. Please don't get to low there are plenty more drugs thesis combinations they can try you on still. Tilda x

  • Morning lislou,i've been on both for a long time and i still get down. I'm in one of those spells now. Not sleeping,lot of pain,i know i'm in a flare up at the moment. It will take time to get the balance right and as you've only got diagnosed recently it will get easier with time. You need to see doc about how your feeling with the headaches and depression. You say you are struggling with your emotions, its getting to the end of the year,weather crap,xmas is looming and your in a lot of pain,i think we will all try to do everything ourselves,i know i have tried to do that.

    You don't saywhether your married or not,i'm assuming you are,if so talk to your other half and see if he can help you in any way. I was crying at midnight when my daughter came. I was in pain and couldn't sleep,she made me a cocoa. I find if i have a good cry it release all the tension inside me.

    If the sulpha is making you feel like that, see your gp and see if he can help. Its a very hard road we people with ra have to tread and at the moment your only just started. Please try to stop worrying about it,easier said than done i know,but in time it will i promise you. You will have days when you think you can climp everest and then there will be times when all you want to do is get back in bed and hide.

    Hope you feel brighter this morning. Sylvi. xx

  • I hope this morning finds you a little better. It's so tough and only people with RA can really understand what you are going through, I am new to this site and have found it a great comfort. I have taken Methotrexate and sulphasalazine (not sure of spelling!) didn't have too much trouble on them but are neither were controlling my RA so start on leflunomide today. All I can say is it's hard but it does really get better. It doesn't help that it's so gloomy outside! As sylvi said go and see the docs see what they say and try and get as much support as you can from work, friends and relatives. Take care x

  • poor you, im diagnosed a year and unfortunatly they dont seem to tell you that it takes a long time to get the right combo of drugs :( its torture, hope you feel a bit better today-how are the people at your work? are they ok if you need some extra time off etc? or have you got any sick days?? i find bed rest seems to help the most. i have been on mtx injections since march and they seemed to be helping a bit-but not enough to make me feel semi normal! hope it all calms down for you soon, do you take any painkillers?? enjoy your day x

  • I can totally identify with you, I was diagnosed 3 months ago, I had a steroid injection and started on MTX, no probs felt loads better, then got 2 nodules and rheumy decided to give me a 2 month course of sulf and prednisalone. I got a bug and thought it was that making me feel crap but the crap continued. I felt awful, crying at the drop of a hat not able to concentrate, making silly mistakes, brain fog and what scared me was going to shop I can remember driving out of parking space and next I was half way home, total amnesia of the journey!! I felt on edge, panic attacks absolutely awful, thought I was headed for a breakdown. It was a reaction to the prednisalone, I was put on sick (which I didn't want) and a "quick" off the pred over 2 weeks (last one tomorrow), no driving. The sulf was left at 1 twice a day for now but I'm going to see about that as I am still getting terrific headaches. I think also the realization that this is a "for life" thing has hit home too, As an orthopaedic nurse I have looked after people with RA over the years, some from the older generations who didn't have the advantage of the drugs we have and who were totally crippled, when I was diagnosed I thought ok I know about this so I can cope and get on with it - wrong! what you don't see as a nurse is the shit day, the exhaustion and all the rest of it. But we have each other to "bounce" off and it has really helped me along the journey so far.

    Take care and hope you feel loads better soon xx

  • Hi,

    Really sorry to hear above tales, but we have all been thru a lot. The only glimmer of hope is that with persistance you will eventually get the correct combination of Dmards to slow the progression of this miserable disease.

    My RA Consultant, promised me in the early days that she would get my bloods to a normal level, and she did, but it took 18 months to 2 years, and was only achieved with a combination of MTX Plaquinil and anti tnf Humira, a lot of damage was done while this was happening, and I was on pred / steroids, so did'nt really appreciate what they meant by 'protecting your joints' I do now. The predneselone masks the pain, and is only a bridging treatment in order to get things under control, I hope I never go on it again, it is very effective, but hello fat girl!

    Good luck all, hope things improve soon,

    xx Gina.

  • Having read all the above comments in sympathy with Lislou,I too would like to offer my support. I'm going through a rough patch at the mo too,having had R.A. for 25 odd yrs and suffered through many different drug combinations. On Tues this wk vwas due in clinic 2 see rheumy nurse but was unable to even get out of bed,hands frozen into claws,legs so painful they were singing etc - I phoned 2 cancel,and the sec said that nurse wud phone me back - when she phoned me back I explained how sorry I was that I cudn't attend the appt - I had to refrain from laughing when she replied 'but it is at this timewe need to see you most Janet'. Absolute classic, the whole Rheum team know that I live alone in a 1st floor flat with no carer/helper,how on earth was I supposed to attend? I was put on Leflunomide earlier this yr,took it for 6wks,just starting to see some effects (not necessarily good ones) & then had frantic phone call from GP - not to take that nasty Leflunomide again as my LFT's had become elevated,then I had an extremely bad infection + hosp 4 a wk - that was Sept,and I'm still waiting to be re-prescribed Leflunomide.My consultant won't put me back on it til they're completely sure that the infection has finally given up in a huff and gone on it's way! Whilst I've been waiting,I've discovered that my LFT's are naturally high!! God,I've just looked back on what I've written,it's true that I'll use 12 words where 1 will do - I apologise 4 that.

    In retrospect,all I really want to say is,only you know how you are feeling,when u feel tired rest,(I tend to find 50-50 is best.)do not be afraid to ask questions about meds,treatments etc - I was told by a consultant in C'diff many yrs ago that if a drug doesn't have a side effect - then it isn't working,he also told me that having a baby could 'burn-out' my R.A. - I didn't take his advice,but that was my 1st inkling that most professionals are treaters not sufferers.NEVER be afraid to tell them how it is for you,if you don't think you're being heard ask for a 2nd opinion. I hope that this vile weather will get better cos these dark days just make my depression & R.A worse. What I want for Xmas Santa is a new R.A. free body & a new job - failing that could you just turn all the lights out please.

  • hi .... im on salazpyrin and thank god ive never experienced headaches but i do drink loads of water as this drug does hydrate you so maybe if your not drinking a lot of water maybe thats why you are getting them ... hope this helps xx

  • Hello, I had brief spell on sulphasalzine and the headaches were so bad that I got admitted for a week , during which time I had a lumbar puncture( they thought I either had viral menigitis or a brain bleed ( had ct and mri also).

    I had to stop taking the sulphasalazine , because of the headaches!

    It can suit people but not im afraid me.

  • Dont give up though they will I promise find the right medication for you!,

    Im on the 3rd lot, and the physical side effects are so much better than my first two( I have a little issue of minute quantities of blood in my urine,( which my Gp is going to investigate further as this has occurred regularly..but no bad headaches, or severe nausea which were caused by my first two.

    Also different meds suit different people, XX

  • Hi

    I am sure you will find the right combination again, so don't give up.

    On the work front - could you reduce your hrs, even if only for a temporary basis, just until you get some respite?

    I was diagnosed in August 2011, but I could not work full time, the disease does what you mentioned and its even worse when its not controlled.

    Keep up the good fight and here's hoping you feel better soon

    Take care

    Sci x

  • I just wanted to say that I feel exactly the same as you, I've had problems for about 4 years, and was diagnosed almost 12 months ago, and I'm still waiting for the right combo and dose of drugs....I'm also seeing a counsellor to help to come to terms with things, maybe thats something which might help? You should try to adjust your work pattern or hours if you can....employers have an obligation to structure your work pattern to suit you.....good luck, hope you have a few better days soon x x

  • Thank you everyone, you are all brill people who have given me some hope! In answer to a couple of the replies, yes i have a wonderful family with a massively supportive husband who gets me through most days in one way or another! I work in HR as a Recruitment & Engagement Co-ordinator so am aware that i could reduce my hours while i try to find an even keel on my meds etc, the problem is.......im too stubborn to give in!

    Maybe i just need to try to accept that i have RA, thats the hard bit though :(

    Best wishes to everyone and i hope you all have a reasonably pain free and restful christmas xx

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