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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi All
I said I would let you know how things was going and here we go had too calls from Hospital one from nurse and one from consultant to tell me not to take any more sulph as it had taken my white cells down too far so have got an appointment on the 1st April to see what is the next step, i feel so down as I put a lot of faith in the sulph as everyone kept saying it is great when it gets in to your system, but as you can see mine don't like it this is Methatexine as well so not sure what the next step is still on pain killers and amatriptaline at night.
Not sure what i am going to do or take next will let you all know what they say after the 1st
Take care everyone
Talk to you all soon.
Audrey.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Audrey,
I couldn't take Sulphasalazine either, it affected my liver and made me very ill.
Don't despair, there are lots more drugs to try , it just takes time to find the right one for you.
Let us know what happens on Thursday.
Love, Doreen xx
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Rank: Member
Groups: Registered
Joined: 12/7/2009
Posts: 21
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Hi Audrey,
I also had a severe reaction to sulphasalazine. I ended up in hospital as the platlets in my blood went crazy.
It's now on my records I am alergic to Sulp.
A friend of mine swears by it and it works with him.
Clive
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Rank: Advanced Member
Groups: Registered
Joined: 1/27/2010
Posts: 75
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Hi Audrey I was very poorly whilst on sulphasalasine. Officially allergic  love Clairexx
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Audrey,
I didn't get on with sulphasalazine either but don't lose heart ... there are a lot more options but it can take time to find the right combo!
x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Audrey - sorry it didn't work. It made me quite ill as well. I'm just glad that they are seeing you fairly quickly to look at what other options are available to you. I got hydroxychloroquine added and some anti inflammatories when the sulph failed. Hope you get a positive outcome on the 1st.
Take care.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh dear, I am sorry to hear this Audrey, there are many more meds to try.
I am on SLZ but have to say I don't like it at all! LOL It has always made me feel 'wrong'.
Love,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 1/14/2010
Posts: 118
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Hi Audrey I can sympathise as Sulpha made me very ill, I had to come of all meds and could not take anything fo about 6 months. I must say though I felt so much better when I stopped taking it even though the RA got worse. It had made me feel very ill. Do not give up hope there are a lot of other things to try and I am sure one of them will suit you Love Melanie
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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I had a bad reaction to Sulph as well. There are alternatives and at least you will be seen tomorrow.
Best of luck.
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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All the best for tomorrow, Audrey - will be thinking about you.
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Audrey,
I am also in the sulf "NO tolerance club" and had a lot of trouble whilst on it, but don't despair there are lots of other treatment options available. As far as the drugs are concerned, I think it's an exercise of trial and error, however, whilst trying out the different options, I can appreciate how frustrated and down this can leave one feeling .
Good luck with your appointment tomorrow and was pleased to hear that you managed to get one so quickly,
love,
Barbara
XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hello Audrey
hope you get some really good support at your appointment tomorrow, will be thinking of you,
please do let us know how you get on xx
I suppose I need to feel very grateful that my body accepts sulphasalazine, its a funny ol' drug - but i had to stop it for a week recently due to contact with suspected swine flu and i was very surprised to find that i could NOT wait to start taking again - it must be this that is holding me together,
- the swine flu worries turned out to be false alarm as person did not have it after all but i was advised to err on the side of caution and stop meds for 7 days,
Really hope u soon find the meds that are right for YOU,
Take care Audrey, love Liz xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi everyone
thanks for your messages here goes with the info from my vist to the Hospital.
Bloods going up ok and was with the consultant and Nurse for 2 hrs he did some ultra scans on my hands feet and wrists and ankles he has said that they are worse then he had thougt and because I am happy such a cheerful person (thats normaly me ) he said he did not relise how much movement and pain I was in.when he was moving me he made me Cry with pain but did say sorry for doing it. he has given me some steriods to get things steady then next month I have got to go back and he is going to try me on TNFs the ones he is loking at are adalimumab trade name (Humira) and Etanercepttrade name(Enbrel) he has given me some reading to do on these and he as said he wants me to use these as both methx and sulph has failed. is any one on them? if so can you let me know how you are going with them.
Hope everyone has a great easter and hope you all feel well
Love
Audrey XX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Audrey, Glad you had a good appointment, and they certainly seem to have been thorough and listened to you. Hope the steroids calm things down for you. I`ve been on humira (adalimumab) now for almost three years, and it`s been of considerable benefit to me. Luckily I haven`t really had any side effects. I take the injection every two weeks, it comes as an epi-pen : stings at first, but not for long, then it`s over for the next fortnight!! Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi Audrey,
Am in same position as you gotta make decision re humira or enbrel. Am erring on the side of humira as it is a fortnightly injection, but need to read more about it.
Hope whichever you decide to take works well for you and without side effect.
Take care,
Nina x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 327
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Hi Audrey
Good that you had such a thorough appointment with your consultant (I'm usually in and out in five minutes!). Sorry that you didn't get on with the Sulpha, but it does sound as though they're trying to do their best for you. Hope you get some relief once the decision is made.
Anthea x
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi audrey
I've tried both humira and enbrel, I've now been on enbrel for 3 years, and it's made a considerable difference to my life.
Lyn
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