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Date: 23.02.2011
From: davina

Subject: anyone feel worse on sulphersalazine

hope everyone is well

i am having a week of hell, i'm in so much pain and even worse i am feeling sick, dizzy, have headaches
and just feel ill.
i think its due to these new tablets sulphersalsazine, was on 1 tablet a day and increased to 2 then my illness started.

i know my inflammatory markers have gone up after speaking to my rheumy nurse and she has asked me to increase my prednisolone up to 7.5 again and decrease the sulphersalazine for another week to see if it is them.

any ideas what would increase my markers
i have been on methorexate since sep 2010, plaquinel since nov 2010 and prednisolone since june 2010 and no change in other meds

as the title says has anyone else been in this situation.

thanks in advance
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Date: 23.02.2011
From: cookie

Subject: Re: anyone feel worse on sulphersalazine

Hi hon your markers may have increased slightly as it can irritate your liver. I have been on and off sulph a few times over the 16 years ive been on it ( when preggie etc) always felt a bit shitty when going on it for a couple of weeks but soon settled but have also heard of people who were so ill on it.they were hospitalised. I think we all react differently. Sulph kept my ra well controlled for at least 15 years before things got worse try to stick with it for a while but dont be scared. To say enoughs enough xx
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Date: 24.02.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

i will thanks cookie, i'll give it another few weeks and see.
how are you feeling at the mo.
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Date: 24.02.2011
From: emma

Subject: Re: anyone feel worse on sulphersalazine

hi davina, its emma i have been on sulphersalazine for 3 weeks feeling crap and tired at the moment and a bit depressed not usually like it.how are your cysts did you get anything sorted,hope you feel better soon. em x
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Date: 24.02.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

hi emma no everything the same.

just hate being in pain and no one seams to help stupid doctors.
the rheumy nurse asked me to keep trying for another week so i will try but i hate feeling like this, its so hard to look after a 20 month old baby when i can hardly look after myself.
so lucky hubby is off work atm.
does anyone have facebook?
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Date: 24.02.2011
From: cookie

Subject: Re: anyone feel worse on sulphersalazine

Hi davina its so hard when they are little dont forget your body is still producing enzymes from when your buba was born these relax ligaments etc you stop producing these aprox 2 years after birth i was ill for about 2 years or worse at least howver things did start to improve when they were about 2 i assume these enzymes stopping being produced will probably had somthing to do with it. Try to stay positive its so hard i know xxx
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Date: 25.02.2011
From: x kerry x

Subject: Re: anyone feel worse on sulphersalazine

hi davina, i was on sulph for 2 weeks and was feeling awful, dizzy, being sick, headaches and unbelievably tired. I spoke to my nurse and she said to stop it for a week to see if i felt better and then to try it again. Felt better a few days after i stopped it then started it again after a week. Had one tablet and was ill...ended up in hospital and was put on a drip, they said id had a bad reaction to it and to stop taking it. I didnt realise until a few weeks ago that i was pregnant at the time too though, so it may have been my body rejecting it because of that. Dont let my experience put you off though, i know there are loads of people who take it and it really helps them with no side effects. Im on facebook if you wana add me....kerry-lianne davison. Hope you start to feel better soon x
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Date: 01.03.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

Hi thanks kerry. i did what the nurse said about reducing the salfa back to 1 but i feel the complete same. no better at all so i now want to come off it. i will call my nurse 2morrow. hope every1 is well. x
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Date: 01.03.2011
From: carole

Subject: Re: anyone feel worse on sulphersalazine

Hi Davina, I know how u feel i was on sulfa for 6 months , all different doses tried every thing they said stop, start etc etc ... but in the end i still felt like crap, with all ur symptoms as well , so i just woke one morning thinking no more!! and stopped taking which was a month away from seeing the rhummy,lived on pain meds till then but i felt better in my self,.. i,m now on methatrexate i,m not having so many side effects but we're still messing around with doses, some times the side effects r just to much to cope with along with RA ...go to c ur GP if u cant c ur rhummy for a while ..... hope things get better soon x
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Date: 01.03.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

hi carole thanks for that info. i just can't take the pain that the salfa is causing.
i give up with the sulfa its to much, i've been going through pain for the last year up and down but not stopped or controlled at all.
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Date: 04.03.2011
From: Natalie

Subject: Re: anyone feel worse on sulphersalazine

Hi just a word of warning I was px Sulphasalazine and after taking one tablet for 7 days I was admitted to hospital in ICU as I had no antibodies left in me. Took me 2 weeks to get out of hospital. I'm sure the stuff works for some, but it can also be really dangerous for some...
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Date: 05.03.2011
From: Stephen

Subject: Re: anyone feel worse on sulphersalazine

Davina,

I was on sulfasalazine for 4 years and they worked great, but when i first started them i was like you pretty ill and very depressed, but each week i stared to notice the difference and eventually i forgot i had RA, so give them i chance which i know cant be easy when you have family to look after aswell, as been said in earlier post its a case of finding a med that works for you and the only way is trying them, sulfasalazine did eventually damage my liver according to my blood tests so i had to stop them, i'm now on leflunomide and steroid injection but its early days as to whether they are working, anyway good luck and hope all go's well for you..
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Date: 05.03.2011
From: emma

Subject: Re: anyone feel worse on sulphersalazine

hi davina,on my 4th week of taking sulphersalazine i feel ill,tired,depressed and sick seeing my rheumy on friday going to ask to come off them.how are your knees did you get them sorted,hope you feel better soon. emma x
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Date: 05.03.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

hi natline and stephen thanks for the inforation i have now come off the sulfa completely as i have been so ill thanks to everyone for there advice
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Date: 12.03.2011
From: Francesca

Subject: Re: anyone feel worse on sulphersalazine

I'm taking sulfasalazine. I'm not sure whether to continue. I was Ok for a few weeks until I went up for 2 twice per day to 4 twice per day. After a couple of weeks it seemed to build up in my system. I feel so sick sometimes I wretch and can't eat. I have a horrible taste in my mouth, sometimes a horrible smell and a burning sensation in my gullet. I am trying some anti sickness pills for a week as a last ditch attempt. I am wondering about asking about biologicals but I am told that the meds to try next are even worse. I had no success with Plaquenil at all. I think we all react differently and hopefully i will find something that helps and that I can tolerate. Good luck everyone
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Date: 13.03.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

hi francesca have you tried methotrexate yet?
none of the drugs are very nice with the side effects but some you can tolerate and others you can't. i can tolerate plaquenil and methorexate but they are doing nothing for me, sulfa is a big no no for me just couldn't do it, 1 pill was bad then 2 was horrible.
there is a criteria you have to meet before they give you the biologicals i was told by my rheumy i have to have tried 3 different pills before any injectable meds are tried. good luck and t/c
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Date: 13.03.2011
From: Francesca

Subject: Re: anyone feel worse on sulphersalazine

Hi Davina
I haven't tried Methotrexate. I think they haven't prescribed it because I said I wanted to conceive. However, I can barely look after myself at the moment let alone a baby and I definately don't feel like having sex so I may have to reconsider!! ;) You've made a really good point about how we all respond differently and maybe I would be fine on something else. I haven't had any benefit from plaqenil or Sulfasalazine and so a year after diagnosis I am no further forward. Thanks for your response and take care
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Date: 15.03.2011
From: Michelle

Subject: Re: anyone feel worse on sulphersalazine

Good Morning. I've been taking sulfasalazine for 3 weeks, 500 mg 2x's daily. Joints and muscles feel worse than ever. If I sit to long during the day I have trouble getting up and hurts to walk. Was previously on Plaquinel. After a month started feeling great. By 3 month started getting a headache that just wouldn't go away. Had to get off. Don't expect to ever be 100% but if you are taking this stuff should your joints and muscles feel worse? I'm a massage therapist, can't afford to feel this bad especially in my hands.
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Date: 15.03.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

hi francesca
i am in the same boat as you wanting a baby but yet to have a med that works. i have been on methorexate and plaquenil ok then sulfa wasn't good at all now just got back from the rheumy nurse who is putting me forward for anti-tnf drugs.
i'm dreading the thought of injecting myself weekly but anything is worth a try at the moment and baby planing will just have to wait for 6 months to a year.
michelle i feel for you and completely understand how you feel, i had the same problem with the sulfa was in bed for 4 days cause i could't move from the pain, i did 1 a day for a week then 2 for a week back down to 1 for 5days then i stopped.
good luck and t/c
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Date: 15.03.2011
From: Pat B

Subject: Re: anyone feel worse on sulphersalazine

Hello, I have been on sulphersalazine for nearly 3 years now after switching from methatrexate. At first I felt sickly and just horrible but I persevered and have to say I am fine with them now. Try to stick it out and see how you are. If the nausea does not go away, then they may not be for you.
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Date: 15.03.2011
From: Francesca

Subject: Re: anyone feel worse on sulphersalazine

Hi Davina
Thanks for your helpful reply. Its good to connect with someone in the same boat. i am thinking the same as you that I will have to wait until i am well enough. The problem is I will be 39 this year so it feels like time is running out. Good luck with Anti TNF medicine. Do you know what the criteria are for being accepted for Anti TNF?

Pat, thanks for your comments too, really helpful. I am finding that my nausea is intermittent so i am on the fence about whether to ask to come off Sulphasalazine. Having read your reply perhaps I will persevere. I have a horrible taste in my mouth which is constant though and a strange sensation in my stomach/gullet which feels like inflammation.

best wishes everyone
Francesca
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Date: 15.03.2011
From: davina

Subject: Re: anyone feel worse on sulphersalazine

hi francesca the criteria is strict. you need to have been on and failed at lease methotrexate and one other, e.g plaquenil. and have a score from your pain at least 5.0
you know when they do the score regarding the painful joints and inflammatory.

take care.
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