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Rank: Member
Groups: Registered
Joined: 1/19/2010
Posts: 13
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Hello all
been to see the new consultant he was very nice, he advised that there will be no quick fix for me, due to other health issues I can not be given any more anti TNFs,i can not take methotrexate, or Arava. he gave it some thought and decided to try Sulfasalazine he gave me a leaflet to read and said we would discuss it in 6 weeks. He also wanted to give me a new pain killer called Pregabalin but I am not sure if I can take that as I had a reaction to it after an operation in the summer, I need to check this out with the specialist who looked after me during the surgery.
So I left the consultation with mixed feelings as I know that he is not going to be able to do a lot for me, is any one else taking Sulfasalazine and if so has it helped, can you let me know
Many thanks
sharon
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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It's a tried and tested treatment. I started it but had to come off due side effects, but it certainly helped for the short time I was taking it Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Sharon,
Sulphasalazine is long and well established drug which has been well documented over a number of years.
Like any drug you can read into it what you want. Of course there are side effects and there are those who have been unable to take it
for whatever reason. Reading peoples accounts of this drug you will find the pro's and con's, but all of us have sensitivities to certain drugs
and what is not OK for one is fantastic for another.
I have been on Leflunomide for the past 8 weeks and have had no side effects whatsoever, however, if you read many accounts there are those
who had very bad experiences on it.
It is also worth considering giving Pregabalin a second chance as sometimes the second time it wont affect you. You could start on half the dose and move upwards slowly.
Hope that helps. I wish you the best.
Gogs
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sharon, Sulphasalazine was the first DMARD I was tried on, after diagnosis. It didn`t give me any side effects at all, but I was taken off it after 12 weeks as it didn`t do anything for my RA. I hope it works for you. Kathleen x
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Rank: Member
Groups: Registered
Joined: 1/19/2010
Posts: 13
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Hello All
Thank you for your replies I have emailed the Surgeons secretary today to ask her for confirmation as to whether or not they thought the Pregabalin was responsible for making me seriously ill after the surgery, she is going to check with the consultant tomorrow and let me know. If they feel it was not conclusive I will give it another go . I am going to try the sulfasalazine I will tell the consultant when I go back on the 13th Feb its worth a try. RA is such a horrible illness and there are so many people who do not understand it. because I always look well, I have that type of complexion and I always do my hair and make up but I do get fed up of people telling me "well you look alright" just feeling low at the moment I guess normally I can cope with it. Thanks again
love sharon
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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You take care Sharon. What you have planned to do is the best you can do for yourself in the circumstances - that's all any of us can do. Sometimes it' works, sometimes it doesn't I know about feeling low cos that's where I am at the present - I feel overwhelmed. Keep us posted and my very best wishes to you. Gogs 
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sharon, I`m pleased your new consultant was nice, and I agree completely that the SLX is worth a try - it may well be the one that works for you, and I hope it does. With regard to people telling you that you look well, I think we`ve all experienced this at times, even from our friends. It`s such a nuisance, and of course they don`t know the half of it, do they? There is a website , "But you don`t look sick" which may be worth looking at, and also if you google "The Spoon Theory," that may help your friends to understand how you are feeling. I remember printing a few copies off for the "friends" of mine who insisted I should still be up for lengthy shopping trips to Newcastle or the Metro Centre! Take care, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 8/19/2011
Posts: 31
Location: Manchester
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Hi Sharon
Sorry to hear that you are feeling down at the moment. I get a lot of 'but you look well' and it is really annoying but I am trying hard to learn to ignore them but it is difficult.
I have been on sulfasalazine since I was diagnosed back in 2005 and have never experienced any side effects and my arthritis is pretty well controlled, I take it along with Celebrex.
I do hope this does work for you and you can begin to feel more positive
Deb xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/15/2013 Posts: 125
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Hi Sharon
I' d say it's definitely worth a try even though I'm one of the one's who failed on it due to side effects. Anything is worth a go to get some relief from your symptoms and if it works for you it may help you feel more on top of things
Hi Kathleen
Thanks for the Spoon Theory info. It should be mandatory reading for every one we come into contact with!!
Julie x
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