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Medical Forum / Diseases and Disorders / Arthritis / July 2007

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Advice re sulphasalazine

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Linda B - 18 Jul 2007 10:59 GMT
Hi everybody. I've been reading this group for a while and recognise a few
familiar faces.
Does anyone have any experience of sulphasalazine?

My story in brief... a year ago I fairly suddenly (over course of about two
weeks) had a lot of pain around my joints and also problems sleeping as it
woke me up, headaches, extremely tender points all over my body and my feet
and hands were tingly. My fingers weren't that swollen but extremely stiff,
so that holding a cup of tea or a pen was almost impossible.
I went to my GP and over the next three months was prescribed various
painkillers, anti-inflammatories, steroids, anti-depressants and sleeping
tablets! I was really worried about taking some of them but gave them a
try. Basically nothing much helped. He referred me to a rheumatologist, who
has been really great but unsure quite what is happening. I've had x-rays,
scans and a radionuclide scan. She diagnosed viral inflammatory arthritis
with secondary fibromyalgia which would hopefully run its course and clear
but now thinks it may be longer term, unfortunately.  

Anyway, trying to keep this short as possible, things are as bad if not
worse. I've had injections in my shoulders which help a little but only
last for about five weeks. Until yesterday, I was just about getting by
with three doses of Brufen Retard 800mg plus Cocodamol 8/500 twice a day.
(Have had various others which gave me stomach problems, these i seem to be
reasonably ok with but sometimes have to give them a few days break)

Yesterday she said we need to move on, so has prescribed Sulphasalazine,
after a blood test (as I've already had mild liver problems in earlier
years, bit of a worry) I've searched the internet and found various things
from avoid it like the plague, to its a wonderdrug type stuff!

So, does anyone here have any experience, good or bad of what to expect.
She did warn that many people suffer nausea/vomiting to begin with, so you
have to build up slowly, not something I'd look forward to but if it will
help get back to a 'normal' life or something like it, i'd give it my best
shot.

Thanks in advance, sorry this turned out to be rather long!
Linda
Cheb - 18 Jul 2007 13:39 GMT
>Hi everybody. I've been reading this group for a while and recognise a few
>familiar faces.
[quoted text clipped - 31 lines]
>help get back to a 'normal' life or something like it, i'd give it my best
>shot.

Hi Linda

I have Psoriatic Arthritis, so it's a bit different from your
condition, but I didn't have any problem with nausea etc. They seemed
to be pretty side-effect free but the main annoyance at the start was
the fact that the tablets are pretty big and you have to take lots of
them.

Later I did develop what the doctors thought was a stomach ulcer but
after a gastroscopy they found no stomach problems and the doctor said
that about a third of sufferers with Psoriatic Arthritis have these
funny stomach problems. As I sat there with a horrific sore throat I
wished she'd taken a guess at that at the start and hadn't needed to
do the gastroscopy!

Anyway, I'd say if you feel fine on them then go with it ... but watch
out for an unusual, uncomfortable feeling in the stomach after a few
months and if they diagnose a stomach ulcer then ask them to think
again. When I stopped taking the Sulfasalazine my stomach returned to
normal and all was fine. I am now on Methotrexate, which also has a
terrible list of *possible* side-effects but has worked OK for me! :o)

Best wishes,
Chris R.
Linda B - 19 Jul 2007 13:10 GMT
>>Hi everybody. I've been reading this group for a while and recognise a few
>>familiar faces.
[quoted text clipped - 39 lines]
> the fact that the tablets are pretty big and you have to take lots of
> them.

I think she told me it will be four a day, starting at one for first week,
then building up to help avoid the nausea problem and give your body time
to get used to it but I've not got the prescription filled yet.

> Later I did develop what the doctors thought was a stomach ulcer but
> after a gastroscopy they found no stomach problems and the doctor said
> that about a third of sufferers with Psoriatic Arthritis have these
> funny stomach problems. As I sat there with a horrific sore throat I
> wished she'd taken a guess at that at the start and hadn't needed to
> do the gastroscopy!

Sounds horrid and as it turned out unnecessary, what a pain.

> Anyway, I'd say if you feel fine on them then go with it ... but watch
> out for an unusual, uncomfortable feeling in the stomach after a few
> months and if they diagnose a stomach ulcer then ask them to think
> again. When I stopped taking the Sulfasalazine my stomach returned to
> normal and all was fine. I am now on Methotrexate, which also has a
> terrible list of *possible* side-effects but has worked OK for me! :o)

Ok, thanks for the advice. Good luck with your treatment, I hope it works
out ok long term.
Robin Fairbairns - 18 Jul 2007 19:59 GMT
>Hi everybody. I've been reading this group for a while and recognise a few
>familiar faces.
>Does anyone have any experience of sulphasalazine?

yes.  another psoriatic arthritic, though.

>My story in brief... a year ago I fairly suddenly (over course of about two
>weeks) had a lot of pain around my joints and also problems sleeping as it
[quoted text clipped - 27 lines]
>help get back to a 'normal' life or something like it, i'd give it my best
>shot.

i had no side effects from sulfasalazine, but i'm amazed that you can
keep going on those doses of other things.  my gp referred me to a
rheumatologist once it became clear that basic dosing with regular
ibuprofen wasn't going to help.

sulfasalazine is prescribed as a DMARD (disease modifying anti-
rheumatic drug, i think) -- the idea is it gets to the root of the
problem.  i'm afraid it didn't, for me.  you need regular blood tests,
though -- you've reminded me it was for liver function; i had to give
up sulfasalazine when the liver started reacting to it.  (it made my
pee a strange orange colour, iirc.)

sulfasalazine is a *very* old drug (it's in the textbooks i bought
when i was an undergraduate in the 60s -- istr it was first marketed
as an antibiotic).  there are a heck of a lot of these dmards, so
don't be down-heartened if sulfasalazine doesn't work for you.  every
single one of them has required regular blood tests, so the nurses at
my gp's practice know me ever so well (it's coming up to 15 years i've
been at it).
Signature

Robin Fairbairns, Cambridge

Cheb - 18 Jul 2007 21:23 GMT
>>Hi everybody. I've been reading this group for a while and recognise a few
>>familiar faces.
[quoted text clipped - 45 lines]
>up sulfasalazine when the liver started reacting to it.  (it made my
>pee a strange orange colour, iirc.)

I forgot about that :o)   Yes, it turned my pee orange too ... about
the same colour as the tablets themselves, IIRC.

>sulfasalazine is a *very* old drug (it's in the textbooks i bought
>when i was an undergraduate in the 60s -- istr it was first marketed
[quoted text clipped - 3 lines]
>my gp's practice know me ever so well (it's coming up to 15 years i've
>been at it).
Linda B - 19 Jul 2007 13:21 GMT
<snipped>

> i had no side effects from sulfasalazine, but i'm amazed that you can
> keep going on those doses of other things.  my gp referred me to a
> rheumatologist once it became clear that basic dosing with regular
> ibuprofen wasn't going to help.

I've been through quite a list of other things including different
anti-inflams (dichlofenac was one, and another beginning with A, I can't
remember right now) I've also had amitriptyline at night, plus zopiclone to
try and get some sleep, and at one point diazepam but I don't like how they
make me feel, not in control. Luthodomine <sp> and a couple of other
things, sorry I can't remember all the names.

> sulfasalazine is prescribed as a DMARD (disease modifying anti-
> rheumatic drug, i think) -- the idea is it gets to the root of the
> problem.  i'm afraid it didn't, for me.  you need regular blood tests,
> though -- you've reminded me it was for liver function; i had to give
> up sulfasalazine when the liver started reacting to it.  (it made my
> pee a strange orange colour, iirc.)

yes, i read that on the leaflet I was given! Forewarned is forearmed!

> sulfasalazine is a *very* old drug (it's in the textbooks i bought
> when i was an undergraduate in the 60s -- istr it was first marketed
[quoted text clipped - 3 lines]
> my gp's practice know me ever so well (it's coming up to 15 years i've
> been at it).

Yes, the blood nurse is quite familiar to me too.
Thanks for your comments and others I'm trying to read through and reply to
but have to go for a while now.
Good luck with your treatment too.
Jayne - 18 Jul 2007 20:34 GMT
Hi Linda!

Sulphasalazine was the first disease modifying drug I was given for my
inflammatory arthritis, and it worked quite well for a while, although not
quite well enough.  It works on the disease process as opposed to co-codamol
which works on pain, and anti-inflammatories which treat the inflammation.

From (hazy) memory, I think you need to have regular blood tests, to be sure
that it isn't affecting kidneys and liver adverseley, and they do monitor
you quite closely in that respect.  It didn't work fully for me, and I went
on to try Arava, Methotrexate, and nowadays Enbrel injections (which have
been brilliant for me).

All of them are similar in that the rheumatology department insist on
monthly blood tests, and if I forget I get a nagging phone call, but I have
been fine in that I've had no adverse effects (apart from Arava and tummy
troubles).  All of these drugs have potential nasty side effects, but then
so does inflammatory arthritis.  I've had one knee replaced and am about to
have the other done, due to damage caused before I had a good treatment,
which is not altogether a good thing, as they don't last indefinitely and I
am not 46 yet.

I really wish you luck and hope that it is as they say a viral side effect.
They did wonder that about me at first and thought it would "burn itself
out".

All the best

Jayne

> Hi everybody. I've been reading this group for a while and recognise a few
> familiar faces.
[quoted text clipped - 39 lines]
> Thanks in advance, sorry this turned out to be rather long!
> Linda
Linda B - 19 Jul 2007 19:26 GMT
> Hi Linda!

Hi Jayne - I know you from elsewhere, not sure if you 'recognise' me or not
(~~Linda~~ might jog your memory if not)

> Sulphasalazine was the first disease modifying drug I was given for my
> inflammatory arthritis, and it worked quite well for a while, although not
[quoted text clipped - 6 lines]
> on to try Arava, Methotrexate, and nowadays Enbrel injections (which have
> been brilliant for me).

yes I've been lurking in here for quite a while and following your
'injectables' threads with some interest. Hope you get back your 'old'
style needles and it continues helping.

> All of them are similar in that the rheumatology department insist on
> monthly blood tests, and if I forget I get a nagging phone call, but I have
> been fine in that I've had no adverse effects (apart from Arava and tummy
> troubles).

Tell me about tummy upsets <or not!>  The anti-inflammatories do horrible
things to me, in various ways. You get quite used to going back to the doc
and saying, nope that one isn't really an option, don't you? (And I do give
it my best shot, not just wimp out at the first twinge or heave)

> All of these drugs have potential nasty side effects, but then
> so does inflammatory arthritis.  I've had one knee replaced and am about to
> have the other done, due to damage caused before I had a good treatment,
> which is not altogether a good thing, as they don't last indefinitely and I
> am not 46 yet.

Snap... 45 last birthday :-)

> I really wish you luck and hope that it is as they say a viral side effect.
> They did wonder that about me at first and thought it would "burn itself
> out".

I wish it had, for us both and others. Still, reading this group is some
comfort. Friends and relatives can't *see* the pain or the sheer tiredness
some days and I often think *they* think I just need to buck myself up a
bit.

Thanks again Jayne. Hope you and your family are well (no skate-boarding
tricks lately?!!)
Pam the goose - 19 Jul 2007 19:34 GMT
> I wish it had, for us both and others. Still, reading this group is some
> comfort. Friends and relatives can't *see* the pain or the sheer tiredness
> some days and I often think *they* think I just need to buck myself up a
> bit.

Yes, reading this group is a *lot* of comfort to a *lot* of people, you're
right, Squiggly ;-))

Please, people, keep up with your posting, it makes me realise I'm not
alone!

I'll go back to lurking now I've said this.
Signature

Pam

Linda B - 19 Jul 2007 19:51 GMT
>> I wish it had, for us both and others. Still, reading this group is some
>> comfort. Friends and relatives can't *see* the pain or the sheer tiredness
[quoted text clipped - 3 lines]
> Yes, reading this group is a *lot* of comfort to a *lot* of people, you're
> right, Squiggly ;-))

Lol, hiya Pam... you recognised me then!

> Please, people, keep up with your posting, it makes me realise I'm not
> alone!

I'm glad I found this place (and Splodge encouraged me to start this
thread!)

> I'll go back to lurking now I've said this.

No! stay, share and learn... I will if you will :-)
Pam the goose - 19 Jul 2007 20:13 GMT
> Lol, hiya Pam... you recognised me then!

It was confirmed with the squiggles :-)

> I'm glad I found this place (and Splodge encouraged me to start this
> thread!)

Me too. I've been here a few months now and begun to feel the pain isn't
imagination - and that has helped me a great deal.

> No! stay, share and learn... I will if you will :-)

Oh, I'll stay and learn, can't give that up cos it really helps.
But the sharing, oh, no, nothing to share.
Been to a specialist who says it's classic arthritis.
So am stuck with the Cocodamol effervescent 500 that stop me screaming.
Plus a warning when I was put on them that I could only have them for a
year.
What they'll do for me then I just don't know.
That's as much as I can share!!
Signature

Pam

Jayne - 19 Jul 2007 20:22 GMT
>> I wish it had, for us both and others. Still, reading this group is some
>> comfort. Friends and relatives can't *see* the pain or the sheer
[quoted text clipped - 4 lines]
> Yes, reading this group is a *lot* of comfort to a *lot* of people, you're
> right, Squiggly ;-))

And another face recognised!

Jayne
Pam the goose - 19 Jul 2007 21:16 GMT
> And another face recognised!

rofl
It's finder's day ;-))
Signature

Pam the goose

Jayne - 19 Jul 2007 20:22 GMT
>> Hi Linda!
>
> Hi Jayne - I know you from elsewhere, not sure if you 'recognise' me or
> not
> (~~Linda~~ might jog your memory if not)

LOL, yes of course I did Linda!

Jayne
Jayne - 19 Jul 2007 20:24 GMT
> I wish it had, for us both and others. Still, reading this group is some
> comfort. Friends and relatives can't *see* the pain or the sheer tiredness
[quoted text clipped - 3 lines]
> Thanks again Jayne. Hope you and your family are well (no skate-boarding
> tricks lately?!!)

Linda, I think that the sheer tiredness and whole body fatigues are the very
worst part of arthritis.  Other people can't see "tired", so they just do
not realise how awful you can be feeling.  Pain I can deal with, sort of,
but the tiredness is horrible.

No skateboarding tricks, although John has just had minor surgery a couple
of weeks ago and is still being a huge baby.

Jayne
Linda B - 19 Jul 2007 21:07 GMT
>> I wish it had, for us both and others. Still, reading this group is some
>> comfort. Friends and relatives can't *see* the pain or the sheer tiredness
[quoted text clipped - 8 lines]
> not realise how awful you can be feeling.  Pain I can deal with, sort of,
> but the tiredness is horrible.

It *really* helps reading all this, to feel 'normal' (ish!) I find half the
time I just try and muddle through without saying anything and the other
half snapping at my poor hubby and family, when it all gets a bit much.
The exhaustion and the *frustration* are as bad as the pain.

> No skateboarding tricks, although John has just had minor surgery a couple
> of weeks ago and is still being a huge baby.

Oh aren't they just! Hope he gets better quickly... for your sake as much
as his! :-)
Pam the goose - 19 Jul 2007 21:22 GMT
> It *really* helps reading all this, to feel 'normal' (ish!) I find half
> the
> time I just try and muddle through without saying anything and the other
> half snapping at my poor hubby and family, when it all gets a bit much.
> The exhaustion and the *frustration* are as bad as the pain.

I wish I'd read this first before I put fingers to KB!

You're right. It really *does* help.
And the posters in here have no idea how many people they are helping
because there must be hundreds of people out there reading this NG but never
joining in.
I can only say thankyou to all of you simply because you make me able to put
up with "classic arthritis" - never had anything complicated in my life,
always just plain, common-or-garden, classic illnesses ;-))
Signature

Pam

Alan Fisher - 20 Jul 2007 19:53 GMT
> > No skateboarding tricks, although John has just had minor surgery a couple
> > of weeks ago and is still being a huge baby.
>
> Oh aren't they just! Hope he gets better quickly... for your sake as much
> as his! :-)

Oh hang on a sec!!!!!!  That is just out of order!!  It's well-known that
all men are far more stoic in the face of all pain and misfortune: the only
reason this myth about Men As Big Babies crops up is that it's the only damn
time you birds* ever pay us any byourlady attention!!!

Nope, I'm not having that.  Boooooo, basically.
Shaaaaaaaaaaaaaaaaaaaaaaame.

AF

PS yes, I *did* say "birds".
Pam the goose - 19 Jul 2007 21:18 GMT
> Linda, I think that the sheer tiredness and whole body fatigues are the
> very worst part of arthritis.  Other people can't see "tired", so they
> just do not realise how awful you can be feeling.  Pain I can deal with,
> sort of, but the tiredness is horrible.

I said I was going back to lurking but I've not!
Just hearing you say that about the tiredness has made my day.
I thought I was a baby ;-)
Signature

Pam the goose

Jayne - 19 Jul 2007 22:10 GMT
>> Linda, I think that the sheer tiredness and whole body fatigues are the
>> very worst part of arthritis.  Other people can't see "tired", so they
[quoted text clipped - 4 lines]
> Just hearing you say that about the tiredness has made my day.
> I thought I was a baby ;-)

Oh No Pam - and I reckon most people here know exactly what its like to try
and struggle on with that.

When my arthritis initially flared up, my youngest son was only 4 and a real
handful.  I can remember the days when I thought I would never get to the
end of the day, and when John used to get home I would often just completely
wilt.  Either that or the poor man got both barrells!

Jayne
Pam the goose - 19 Jul 2007 22:25 GMT
> Oh No Pam - and I reckon most people here know exactly what its like to
> try and struggle on with that.
[quoted text clipped - 3 lines]
> the end of the day, and when John used to get home I would often just
> completely wilt.  Either that or the poor man got both barrells!

I'm normal!!!!

Well, if that's how it's supposed to be, yes, I'm normal.
I was in my 60s but still thought it was too young to have it this bad.
I was early teens when Great-Aunt Em went down with it and she was in a
wheelchair within months.
I could see the pain in her eyes and she loved me for realising it was bad.
I didn't think I'd get to find out just how bad the pain and tiredness were
for myself.
In those days they didn't have anything to treat her with so she just had to
put up with it.
I felt sorry for her back then, but even more so now.
Signature

Pam

Robin Fairbairns - 19 Jul 2007 22:57 GMT
>Snap... 45 last birthday :-)

oh, you're all so young!
Signature

Robin Fairbairns, Cambridge

Splodge - 19 Jul 2007 23:15 GMT
>>Snap... 45 last birthday :-)
>
> oh, you're all so young!

Aren't they just!
Splodge
Alan Fisher - 20 Jul 2007 19:57 GMT
> >Snap... 45 last birthday :-)
>
> oh, you're all so young!

Happy birthday to meeeeeeein6daystime
Happy birthday to meeeeeeein6daystime
Happy birthday to meeee-heeeiiiiiiiiiiiin6daystime
Happy birthday to meeeeeee.
(in6daystime).

I'll be 46.  That's what the kids are doing, and now is when they're doing
it.  46, man, it's like where it's at.

Shoot me in the headddddddddddddd

AF
Linda B - 21 Jul 2007 06:29 GMT
>>Snap... 45 last birthday :-)
>
> oh, you're all so young!

Haha, on paper but sometimes I feel twice that!

I like this group... feels friendly but with plenty of people willing to
share their knowledge and experience.
Harvey R. Stone - 19 Jul 2007 02:16 GMT
> Hi everybody. I've been reading this group for a while and recognise a few
> familiar faces.
[quoted text clipped - 39 lines]
> Thanks in advance, sorry this turned out to be rather long!
> Linda

Hi Linda,,,  Please do not worry about posting long posts that contains
information and descriptions of what is taking place.   Sometimes it takes
every word and you will find that further questions are asked for more
information.
     I took Sulphasalazine for 5-6 along with Methx in an effort to control
my RA.   It turns a persons urine a shade of brown, so do not be alarmed by
that.
I am not sure how much control your condition needs to prevent on going
damage.   I hope your RD does.  It is a mild DMARD as Plaquinel (sp) is.  If
your condition does not improve,,, I would push my RD for a different DMARD
with stronger control.   With your history of liver problems, the use of
Arava or Methx  may not be smart to use.   One of the newer anti-tnf might
help without worry about the liver.   It is one of the things a person and
their RD have to work out.   Please do not endure for months on end living
with swollen joints and pain.   Expect help and changes from your RD about
your condition.
Harv
Linda B - 19 Jul 2007 19:30 GMT
>> Hi everybody. I've been reading this group for a while and recognise a few
>> familiar faces.
[quoted text clipped - 57 lines]
> your condition.
> Harv

Thanks Harvey
I guess as we're all in a similar boat here, its not so bad, I don't like
to drone on about my problems usually.
The trouble with all this is it takes time between appointments, to work
out if something is helping/causing problems/no good at all, then more time
to get another appointment and try something else... I'm sure you've all
been there, done it and got the t-shirts. I understand that they cant' just
leap in and start you on something stronger but it's a bit frustrating when
everyday life gets busy and you're living in the loo or curled up on the
sofa, too tired to just 'do' what used to be such simple things.

There, I said I wasn't going to whinge... forgive me. :-)
Alan Fisher - 19 Jul 2007 19:54 GMT
> There, I said I wasn't going to whinge... forgive me. :-)

Whinging good.  Bottling it up bad.  Carry on!

AF
Linda B - 19 Jul 2007 20:02 GMT
>> There, I said I wasn't going to whinge... forgive me. :-)
>
> Whinging good.  Bottling it up bad.  Carry on!
>
> AF

I'd prefer wine to whine and bottle opener to bottling ;-)
Splodge - 19 Jul 2007 21:26 GMT
>> There, I said I wasn't going to whinge... forgive me. :-)
>
> Whinging good.  Bottling it up bad.  Carry on!

I agree with that.

You didn't find our missing friend then Alan? Your search came to nothing?
He must have gone off with Connie, cos she missing too lol
Splodge
Alan Fisher - 20 Jul 2007 19:47 GMT
> You didn't find our missing friend then Alan? Your search came to nothing?
> He must have gone off with Connie, cos she missing too lol
> Splodge

Actually he showed up, Jan, but asked to be given some peace, which is fair
enough.  I'm just glad he's OK.

AF
Harvey R. Stone - 20 Jul 2007 01:05 GMT
> Thanks Harvey
> I guess as we're all in a similar boat here, its not so bad, I don't like
[quoted text clipped - 3 lines]
> time
> to get another appointment and try something else...

That is why a person should write down their thoughts or questions and just
hand them to the doctor when he walks in.

I'm sure you've all
> been there, done it and got the t-shirts. I understand that they cant'
> just
[quoted text clipped - 4 lines]
>
> There, I said I wasn't going to whinge... forgive me. :-)

That is why a person makes their time with their RD  COUNT and a person must
come away from the appointment with a feeling that something has been done
to help the problem.        My point,,,,,,

If you are not improved,,,, what have you and the doctor done to make things
better???   There must be a positive answer.   MUST,,, be a positive answer.

Harv
Linda B - 21 Jul 2007 06:31 GMT
<snip>

> That is why a person makes their time with their RD  COUNT and a person must
> come away from the appointment with a feeling that something has been done
> to help the problem.        My point,,,,,,
>
> If you are not improved,,,, what have you and the doctor done to make things
> better???   There must be a positive answer.   MUST,,, be a positive answer.

Yes, I do usually write things down between appointments and if there are
specific questions, make sure I ask. Remembering the information you're
given, when you're trying to take it all in is another matter. (But I have
also noted down things she says on my appointment card for reading up on
when home)
baino - 19 Jul 2007 02:29 GMT
Hi Linda, my story in the begining was quite similar to yourself, however
after investigation with the rheumatologist I was diagnosed as Sero-negative
RA and was immediately started on sulphasalazine. The dosage I was put on
was 3x500mg in the morning and 3x500mg at night along with Nabumetone(NSAID)
and lansoprazole(proton pump inhibitor for the stomach). I did'nt suffer any
side effects whatsoever and had regular blood tests LFT, U&E,FBC etc
fortnightly then once a month after 3 months.The only downside for me was it
affected my chances of fathering anymore kids but I already had two lovely
boys, would have liked to have tried again for a girl but we both decided
that my health was more important, oh and it colours your urine.One plus
point of being on sulphasalazine was I could drink alcohol in moderation
which meant that I still has some sort of social life unlike now.I was on
this regime for 3 years until things began to get out of control. I was
moved onto methotrexate and couldn't get up to the required dosage as my
liver function went haywire and I started to lose blood and protein in my
water, hence investigation at renal clinic which involved nuclear tests and
kidney biopsies etc.Methotrexate was stopped and was put onto humira for 6
months and it failed to work so was moved to enbrel for 3 months and it also
did nothing so I was then prescribed Infliximab, again with the same end
result of no help. Had numerous cortisone injections in every joint in my
body but it was only a short term thing. I'm now on rituximab and doing well
on it having just undergone a further two infusions as well as leflunomide,
nabumetone,lansoprazole,paracetamol and dihydrocodeine, I also have blood
tests done every two weeks as well as in patient stays in hospital every 3
months.I've had my right elbow replaced and currently await a date for my
left elbow to be replaced and also for a triple arthrodesis of my right
ankle.The damage by the disease has already been done and its now mechanical
problems in the joints which needs the intervention of surgery.Currently use
the aids of crutches and a pulpit frame for mobility within the house and a
wheelchair out of the house. I wish you all the best with the sulphasalazine
it worked in the beginning for me then I guess my body got used to it and it
failed to have any impact.The thing you have to realise is that drugs works
in different ways with different people, you may have no side effects
whatsoever then again you could have nausea,runny nose, stomach problems etc
only time will tell which way you go.

regards

robert

> Hi everybody. I've been reading this group for a while and recognise a few
> familiar faces.
[quoted text clipped - 39 lines]
> Thanks in advance, sorry this turned out to be rather long!
> Linda
Linda B - 19 Jul 2007 19:36 GMT
> Hi Linda, my story in the begining was quite similar to yourself, however
> after investigation with the rheumatologist I was diagnosed as Sero-negative
> RA and was immediately started on sulphasalazine.

That's something I'm not quite sure of now and forgot to get clarified. I
remember the rheumatologist saying something like my rheumatoid factors
were negative but is that different to what you said, being Sero-negative?

> The dosage I was put on
> was 3x500mg in the morning and 3x500mg at night along with Nabumetone(NSAID)
[quoted text clipped - 4 lines]
> boys, would have liked to have tried again for a girl but we both decided
> that my health was more important,

Sorry to hear that but yes, your health is more important at that point I
guess.

> oh and it colours your urine.One plus
> point of being on sulphasalazine was I could drink alcohol in moderation
[quoted text clipped - 12 lines]
> tests done every two weeks as well as in patient stays in hospital every 3
> months.

Crikey, not much fun.

> I've had my right elbow replaced and currently await a date for my
> left elbow to be replaced and also for a triple arthrodesis of my right
[quoted text clipped - 7 lines]
> whatsoever then again you could have nausea,runny nose, stomach problems etc
> only time will tell which way you go.

Thanks for the information and all I can say is best of luck with your next
surgery and hope your date comes quickly. You've got way more on your plate
than I have, I should think myself lucky!

Take care and good luck.
Coats - 19 Jul 2007 10:22 GMT
> Hi everybody. I've been reading this group for a while and recognise
> a few familiar faces.
> Does anyone have any experience of sulphasalazine?
>
> My story in brief...

Snip 8><

Have you tried asking them to treat the Fibromyalgia and not the RA?

I had a similar story, was on RA treatment for 3 is years. Never seemed to
make a dent in it, Went to a new rheumy about 3 months ago and was told he
thought it was fibromyalgia and not RA.
As a result I'm now on 10mg amitriptyline and 75mg lyrica twice a day. The
improvement is unbelievable. I've never been so tired I couldn't get up like
some, but the pain is considerably reduced, the stiffness as almost none (
about an hour after waking) and I've started to be able to walk for pleasure
again. My heart still races after any sort of aerobic exercise (even walking
up hills) but if I take a break and let it recover I find I can carry
without many problems.

It may be worth asking if they could try treating you for that first.

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Coats - 19 Jul 2007 10:57 GMT
>> Hi everybody. I've been reading this group for a while and recognise
>> a few familiar faces.
[quoted text clipped - 18 lines]
> problems.
> It may be worth asking if they could try treating you for that first.

I've just re-read that and it sounds like I'm saying that everythings pretty
much cured.
Its not its just that I'm so happy that I feel 'normal' for most of the time
I can cope with the pains in my fingers and wrists, the pulling on my
shoulders if I try to raise them above my head, the niggling back pain and
the way it seems like some upper joints are being pulles out of their
sockets when I lift heavy things. I can cope with these because the
constant, all over tiring pain is mostly gone.
Just thought I'd straighten that up. :-)
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Linda B - 19 Jul 2007 19:48 GMT
<snip>

> I've just re-read that and it sounds like I'm saying that everythings pretty
> much cured.
[quoted text clipped - 5 lines]
> constant, all over tiring pain is mostly gone.
> Just thought I'd straighten that up. :-)

Yes I'm sure there will be a lot reading this that would agree. I certainly
went through a stage where I was getting only two or three hours sleep a
night and with the medication too, I was a bit of a zombie.
Sleep is a powerful healer in its own right (as a certain Mum will agree!)

Glad you straightened :-)
Linda B - 19 Jul 2007 19:44 GMT
> Snip 8><

Hi Cathy (not sure if you'll recognise me either)

> Have you tried asking them to treat the Fibromyalgia and not the RA?

My doctor prescribed amitriptyline back in the early weeks but it made me
feel totally weird, even on a low dose. With more efficient painkillers,
I'm managing to get more sleep so the constant tiredness is not as bad,
making it easier to deal rationally with the rest of the symptoms.
Morning stiffness is pretty bad, I'm 45 but feel twice my age for the first
couple of hours... that first trip down the stairs each day makes me long
to live in a bungalow!
On good days I can manage three miles a day, usually two walks plus usual
walking around in the course of the day. I'm determined to do as much as I
can but it is annoying when out with the family, not being able to do some
of the things that a couple of years ago, we took for granted.

Linda
Jayne - 19 Jul 2007 20:25 GMT
>> Snip 8><
>
[quoted text clipped - 16 lines]
>
> Linda

It made me feel weird too Linda, and even more tired!  At first, I had
fibromyalgia as a diagnosis, until it was altered to RA.

Jayne
Alan Fisher - 19 Jul 2007 19:46 GMT
> Hi everybody. I've been reading this group for a while and recognise a few
> familiar faces.
> Does anyone have any experience of sulphasalazine?

<snipped>

Actually, none whatsoever in my case: I just wanted to say Hello, and keep
Yer Chin Up and that.  Somebody below says that different people react
differently to the same treatments and this is definitely true - so if
something doesn't do the trick for you, insist on a change.  Mine are
working outstandingly for me at the moment, and I hope that gives you cause
for optimism rather than just soundiing like me being a bit smug.  Really
hope you get sorted quickish - and keep in touch?

Thanks

AF

PS take no notice of Jayne. (mimes swigging scotch from the bottle, raises
eyebrows, looks disapproving)
PPS Hi Jayney      :oP
PPPS All right all right I'm *sorry*, OK?        :oD
Linda B - 19 Jul 2007 19:59 GMT
>> Hi everybody. I've been reading this group for a while and recognise a few
>> familiar faces.
[quoted text clipped - 4 lines]
> Actually, none whatsoever in my case: I just wanted to say Hello, and keep
> Yer Chin Up and that.

/giggles    Hi Alan and thanks for the welcome, this is a really friendly
group and its good to hear first hand experiences of all kinds. I've done
lots of googling and reading but hearing how others have reacted and coped
is worth a lot.

> Somebody below says that different people react
> differently to the same treatments and this is definitely true - so if
> something doesn't do the trick for you, insist on a change.

I get a little worried that they might give me my own chair at the surgery!

> Mine are
> working outstandingly for me at the moment, and I hope that gives you cause
> for optimism rather than just soundiing like me being a bit smug.

Not at all smug!! It gives me hope and I'm sure others too, it's great to
hear good news :-)

> Really
> hope you get sorted quickish - and keep in touch?

Thanks and yes, will definitely keep in touch, it's nice to find such a
friendly group!

> Thanks
>
[quoted text clipped - 4 lines]
> PPS Hi Jayney      :oP
> PPPS All right all right I'm *sorry*, OK?        :oD

Rofl... you'll be in trouble when she reads that! :-)
Jayne - 19 Jul 2007 20:26 GMT
>> PS take no notice of Jayne. (mimes swigging scotch from the bottle,
>> raises
[quoted text clipped - 3 lines]
>
> Rofl... you'll be in trouble when she reads that! :-)

Take no notice of this reprobate Linda, he has the most awful reputation!
:)

Jayne
Alan Fisher - 20 Jul 2007 19:51 GMT
> >> PS take no notice of Jayne. (mimes swigging scotch from the bottle,
> >> raises
[quoted text clipped - 8 lines]
>
> Jayne

I do, yes.  Dreadful.

Still somewhat better than your own, mind!  :oP

L'n'K

Alan
 
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