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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Dear friends,
I would very much like to hear your experiences with sulphasalazine.
I was put on it 3 weeks ago, as I have been experiencing a very bad flare since May, and don`t seem to be able to get back to the reasonable health I had for the last 15 years.
My CRP and ESR remain very high, so sulph... has been added to 20 mg mtx and 6 mg predniselone. I was taken off Plaquenil, as it was doing nothing.
Since I have been on sulph....I feel very tired, have absolutely no energy and want all the time to lie down. All the pains are still there. The doctor told me, it takes up to 3 months for the tablets to kick in, so I suppose, I have to be patient. Every job is an effort. I try to pace myself, that`s the only way, I can get through my daily chores.
Merete
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Merete
I am sorry that you have been going through so much in recent months, I have never taken this dmard but there have been quite a lot of discussions on this one in recent months. I m sure you will get lots of sound advice on this one.
Really hope you start to feel a little better very soon and the tiredness subsides.
Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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HI Merete, I have taken sulphasalazine as part of my triple therapy. It can affect your taste, discolour your teeth, and urine but otherwise I was ok. The drugs do take around three months to kick in I was on it for about 2 years before it was stopped as I no longer need it. The tiredness is maybe the inflammation in your system, do a little, and rest a little you will get there. I hope you get some relief soon. Take care Lorna x 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Merete
I've been taking it since May 08 and have had no side effects at all. I felt a difference after about 8 weeks if I remember right. At first I was on 4 a day, then after about a year it was increased to 6 (the maximum for RA). About five months ago I started on MTX 15mg no side effects again. I must have a good tolerance to the drugs. However yesterday I saw my consultant and he wants me to increase the MTX to 20mg. Not very happy about it but I suppose I'll have to. I'm away next month for a week, going to see daughter in Gibraltar, so I'm going to start increasing it when I come back. Only hope I'll be lucky again and be OK.
I would imagine that if you've only been on it for three weeks then you are still building your dose up, so hang on abit longer and see what happens.
Paula x x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Merete, sorry to hear you are feeling poorly. Sulphazalazine is I think a marmite dmard, your body either loves it or hates it!! Mine hated it with a vengeance, I couldnt tolerate it at all, almost from the first dose. these drugs do take time to work apparently.
Really hope you feel better soon,
Heather xxx
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Merete, sorry to hear you are feeling poorly. Sulphazalazine is I think a marmite dmard, your body either loves it or hates it!! Mine hated it with a vengeance, I couldnt tolerate it at all, almost from the first dose. these drugs do take time to work apparently.
Really hope you feel better soon,
Heather xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi merete
sorry you are feeling so poorly
i recently took SLZ --to start with it was ok--apart from feeling sick--the drugs do take time to work especially when you have to increase the dose slowly
unfortunately i had to be taken off SLZ s it began to have an effect on my blood
when it was withdrawn even tho i failed to increase to full dose i did notice a difference in painlevels--now waiting to start MTX
i hope you do get on with SLZ in the short while i took it it did make a differene
good luck
love caz xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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I took it for four and a half years without probs and with great effectiveness, almost in remission. I did have to stop due to neutrophils dropped very low. I'm now on Mtx and Hydro but not doing so well. Glenys.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Merete, Sorry you are not feeling so good. SLZ was the very first drug they put me on, after diagnosis, almost five years ago now. I tolerated it quite well, stayed on it for six months, and it had no effect on my RA whatsoever, so my rheumy stopped it. Hope it helps you, it`s so frustrating waiting for all these different drugs to give you some benefit. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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hi Merete
I was started on sulf ( 4 tablets a day) when I first diagnosed- it took about 4 months until I saw any real difference. I had no problems taking it but after about 18 months, and increasing it to 6 tbs a day it didn't really work so well any more . after a bad flare I was put on 12.5 mtx as well and after being on that for 3 months things have really settled down. I went through a bad pahse of fatigue but since working part time things are better.
I hope it all improves for you soon. Meanwhie- try to rest- not always easy i know.
Maria
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Thank you friends for all your replies. As you say, I suppose I have to be patient. It is just, when you have had a flare since May, it just gets you down. Today I am on my 4th week, and will take 4 tablets a week, so maybe the incease wll start to kck in. I am still on 20 mg mtx and 6 mg predniselone. I take 4 co-codamol a day to help with pain, the fatigue I will have to put up with for the moment. am lucky, I am retired, the kids have flown the nest and just here with hubby. I used to do everything in the home, but now he helps much more. This morning we did a big shop in Sainsbury, hopefully we should have enough for the whole week. I find shopping quite exhausting, so was happy to get home and rest in the afternoon.
I hope, you will all have a relaxing week-end.
Merete
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