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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi Folks Hope every one is ok I have not been on for a while has I have been Busy trying to sort my self out with no results at the min. I was on METATREXINE before Christmas and the rummy team took me off them as it was stoping my liver working properly so had 3 mths just on painkillers tramadole and paracetamols and amatriptaline at night. they have put me on sufasalazine and this was 3 wks ago since putting me on them my knuckles on my hands have doubled in size and my wrist joints hurt like made my feet I can only walk about 20yrds and have to stop because of the pain. I also have fybromalger. now I have told you my story now is my questions 1 has anyone had this sort of thing happen to them and if so how long does it last ? 2 does the fatigue get worse with sulp tablets as mine seams to do ? 3 how long does the sulp tablets take to work even a little.? sorry to moan but I am getting very snappy with people and tearful as well as I am in pain 24/7 Phoned the rummy nurse she says it could be a flair up she does not think it is anything to do with the sulp tablets Anyone got any ideas Please. love to all 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,
Sorry to hear you are feeling so poorly.
I had a very bad reaction to sulphasalazine but it was because it affected my liver, not the joints. I know some people have said sulphasalazine has made them feel depressed but I haven't heard of it making the joints worse. However, we all react differently to these drugs!
Have you had any recent blood tests? Your rheumy nurse could be right that it's a flare but it would be worth seeing your GP .
Perhaps a steroid injection could help to tide you over until the meds start to work.
Hope you feel better soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Audrey,
I take Sulphasalazine, it works for me but took some time to get used to at first - ive been on it since 1998 now,
it does take a little while to set to work i think at first, and you need to take time to work up to the right dose as body needs time to get used to the meds.
Does sound like a flare though, i would keep speaking with the rheumy team until things feel better and hope that is very soon for you xx
What dose are you on at the moment?
It can make u feel bit down, i thought it was just me until i read it on here related to sulph
...but saying that RA can do the same especially during a flare,
i seem to think now that the fatigue is more related to RA than sulphasalazine, but saying that sulph can cause sleep problems - oooh - its so annoying, we will never understand it!
At least we got each other!
Take care & hope things improve very soon
lots of love Liz xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Audrey,
The SLZ will most definitely take weeks to really kick in and then they may need to adjust the dosage. What dose are you taking?
Perhaps you need a good shot of steroid in your behind, sometimes this is administered to bring the inflammation down and allow the med to work more easily.
I am so sorry you're in so much pain....it is so distracting and distressing.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Audrey
It took about a month for the sulf to kick in for me and after about 3 months there was a big improvement. For a while I had to take an anti inflamatory (diclofenac) reguarly but gradually came off those and only take them and paracetamol if I get a flare.
I started on 2 a day- 1 morning and night and the doseage was increased gradually on a weekly basis until i was on 4 a day. I presume the same is happening to you?
I do get down at times and often have difficulty sleeping but i think that's more due to the fact that i have ra and i get a lot of work related stress.
Fatigue is part of RA too- can be caused by anemia related to ra. my gp put me on folic acid which has helped a lot.
I hope things settle down for you soon.
Take care
Maria x
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Rank: Advanced Member Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi Folks
Thank you for the replys I am on 3 aday till wednesday then go up to 4 a day. had a blood test last week and rummy nurse said it was ok I have an appoinment at Hospital next week so will see what they say.
I will see what they say about a steriod injection.
will keep you all up to date
Thanks for your help
Love
Audrey x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Audrey,
I took SLZ for 8 months last year and had to come off of it because of problems with my liver, and later with MTX and was left without meds for over 6 months and had to rely painkillers and steroids.
I agree that SLZ can make one feel low and have heard from others on the forum that it had a similar affect on them too. It might be worthwhile asking for a copy of your blood results so that you can personally keep an eye on them. I was very unlucky on these meds, but do know that they are considered to be very effective in the treatment of RA, and have helped many people to control their RA.
Hope you feel better soon,
love,
Barbara
XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello again,
Well i have finally been diagnosed last tuesday. I have been fortunate because I half expected this diagtnosis and also because my Rheumy always mentioned about inflammation during the appointment. Although, it is a sad news, at least i know now where i'm standing and I can now relate with others having this same conditions.
Like Audrey, i'm going to start Sulfasalazine soon, i only need my Rheumy to send a letter to my GP for me to start. I just hope that its the right med for me and that i can stay on it with very few side effects.
Fingers crossed. Hope things get sorted out for you Audrey. My Rheumy has advised me to stay on anti inflamatories (rofecoxib 90mg - COX II inhibitors) until the Sulfasalazine is established. I was told it could take up to 3 months.
I'll let you know how i get on when i eventually get stared.
take care
Linda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Linda,
I am sure you are feeling relieved you now have a clear DX, but I am sorry and sad it is RA.
The SLZ hopefully will work by 3mths, if your inflammation is quite suppressed already (say by a jab of steroid or the anti-inflams) it will allow it to work more easily.
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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hello Amanda,
Hope you are well. I will let you know how i get on with the Sulfasalazine once i get started.
Nice to speak to you again. I have had many ups and downs in the last few months. I had to have steroid injections in both my knees, although dreadfully painful at the beginning, those injections kept me going for a good 6 weeks. Now that's over, i'm on those anti-inflammatories and if i keep on them, i feel ok.
How are you?
Linda xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Linda,
I hope so much the injections in the knees hold up well.
Today is a not so good day for me but otherwise all is well...I had a large jab of steroid into the hip joint in October and so far so good which is marvellous!
Love,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi audrey
i,ve just read your post re sulpasalzine
i too experienced worse symptoms at the start i did and still do feel more fatigued and easily tired
fingers are still swollen altho not quite so bad
now been on them for 5 weeks and things have improved slightly
not sure if i was having a flare or the meds like you
how are things going with you?
will be interesting as we are both new to the drug
hopw you are ok and feeling a bit brighter
love
caz xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Audrey Thats good the rheumy added sulphazine,ive never taken it as yet heard it to be good for some not so good for others. yes see what rheumy nurse says, may be flare bloods should show that for you. id ask for steriod injection to bring things down a level or 2 for you till new medication had some time to start working as the dmards are slow acting. I did when went onto planequil at full dose and off mtx helped me tons. the rheumy nurse can do that for you. or arrange gp to do itdepending on dose want you to have. take care hugs melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi i was on slz maximum dose for the first 9 years and Naproxen , was very well with the Slz and was able to keep working although did get very tired , then eventualy got pregnant and had to stop it took steroids instead , after baby was born went back on slz for a few months but it didnt work , tried a lot of other drugs in the 5 years after all of them did not agree with me and am now on Rituximab which seems to be working  Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Hi there. Sorry to hear you've had the dreaded diagnosis. My first drug was Sulfasalazine and I unfortunatley had a very severe allergic reaction to it. I did find it made me quite sick, quite tired and quite depressed but I put the depression down to the sickness. The good news was I lost a lot of weight lol! Stick with it but make a note of any side effects. Nausea and sickness are common but should you develop a rash contact your rheumy immediately. I let mine get to a serious stage because all the information I'd read stated that a rash was normal. By the time I'd gotten to look like a dish of beans I figured it probably wasn't normal. I had a bad experience, many people find it helps them tremendously so good luck 
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