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#462159 - 02/07/12 02:13 PM Help needed; sulfasalazine
utahmom Offline
Apprentice_AS_Kicker

Registered: 11/29/11
Posts: 75
Loc: Utah, USA
I would really like to try sulfasalazine for my AS but my doctor thinks I am not a candidate for it. I have heard of others on here that are taking it for AS and IBS symptoms. If those that take it could post what symptoms caused their doctors to prescribe it, I would appreciate it. I'm wondering if I should go that route first (my doctor is pushing the tnf-inhibitors.

Thanks
_________________________
Teri
http://agluten-freemama.blogspot.com/

Pain since 1989
Mis-diagnosed until 2011
SI joints somewhat fused, lower back is trying to fuse
Osteoarthritis in hips
Follows NSD
Taking very high doses Vitamin C and Niacinamide
Takes Ibuprofen only when needed
Loves to swim

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#462166 - 02/07/12 02:30 PM Re: Help needed; sulfasalazine [Re: utahmom]
Dotyisle Offline


Registered: 03/07/02
Posts: 8284
Loc: Rosario, Argentina
Hello Teri,

I was lucky with my first ever rheumatologist back in mid 90's. He was aware that sulfasalazine could help AS. So he put me on it and it worked wonders for me.

I moved around States quite a bit, in 2 cases I had to beg doctors to keep me on the sulfasalazine. They in my opinion were more old school and stated there was no evidence it helped for AS.

You may be running up against old school doctor.

I found alzulfadine more effective (enteric coated version). Need blood work done, after 6 years I finally have to drop the med, caused some issues with my liver. But i know other posters here that have taken in for a decade or more.

Take care,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking


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#462179 - 02/07/12 03:36 PM Re: Help needed; sulfasalazine [Re: utahmom]
nat5150 Offline
Active_Member

Registered: 11/18/11
Posts: 74
Loc: ON, Canada
I hear alot of people actually get relief with sulfasalazine. My doctor had put me on them and an anti-inflamatory. I had to slowly increase the amount of pills I took, I didnt get any relief from these pills and I got violentely ill and had to discontinue them.My doctor told me they rarely work when inflamation is in the spine. Everybody is different though dont let my story discourage you. All us AS'ers are different, what didnt work for me might work for the next person. I hope you can convince your doctor to try them because Im think all other options should be covered before TNF blockers are considered. I hope you find relief soon
Nat
_________________________
When you live with chronic pain, you never tell the truth. When someone asks you how you are or how you feel, you lie & say, I'm fine or I'm OK, & you smile.

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#462184 - 02/07/12 03:56 PM Re: Help needed; sulfasalazine [Re: utahmom]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19020
Loc: Upstate NY
i was supposed to start it this past year, but then my rheumy noticed that my ALT liver enzyme was a bit elevated (prior to ever going on the drug, probably due to insulin resistance / fatty liver / nsaid usage). so we held off for now. and if we decide that the liver shouldn't be pushed any further, we'll do humira instead.

the reason SSZ was recommended to me is exactly because i have the spondy inflammatory arthritis along with the inflammation in my gut (IBS not IBD). SSZ is supposed to be exactly for that is my understanding.

but i can see where maybe your doctor just wants to go straight to the biologics instead.

either way......
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

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#462186 - 02/07/12 04:15 PM Re: Help needed; sulfasalazine [Re: utahmom]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 8601
Loc: Brittany, France (since Nov 08...
Hi utamom - my probs were *exactly the same as nat5150 - horrible. I was real sick. Almost landed up in hospital. Never to go there again. (Interestingly, nat5150, my inflammation is mostly in my spine but no one picked up on that 'reason'...Hmmmmm. Interesting.)

But, we are all different.

Molly C (France)
Keeping on Keeping on (as we all must...)
_________________________
MollyC1i - Riding OutAS

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#462198 - 02/07/12 05:24 PM Re: Help needed; sulfasalazine [Re: utahmom]
Pea Offline
Gold_AS_Kicker

Registered: 02/24/11
Posts: 1531
Loc: Pacific Northwest
I was put on it and it alone at the age of 28-32 and it put me in remission for many, many, many year's. Now I am out of remission and that was the first thing they put me back on. My liver is good so they still want me on it. No other side effect's. It wasn't working alone though. I am now on Remicade, and MTX and now on something for my Fibro and feel really good.
_________________________
Pea
Diagnosed with A.S. 26 year's ago.
Diagnosed with Fibro 9 year's ago.
Sulphasalazine, Folic Acid, Remicade

Top
#462203 - 02/07/12 05:42 PM Re: Help needed; sulfasalazine [Re: utahmom]
gbash Offline
Decorated_AS_Kicker

Registered: 10/09/08
Posts: 724
Loc: Oklahoma
I was put on Azulfadine after Enbrel caused me a lot of nerve damage. The SSZ never seemed to help my pain much, and it turned out to be the cause of my digestion problems. I now just take some Aleve along with being on NSD, and I've very pleased with the results.

--Greg
_________________________
AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Now getting good results with no-starch diet.

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#462225 - 02/07/12 10:15 PM Re: Help needed; sulfasalazine [Re: utahmom]
utahmom Offline
Apprentice_AS_Kicker

Registered: 11/29/11
Posts: 75
Loc: Utah, USA
So far I'm also getting great results from NSD (as long as I don't blow it like I did this last weekend). I have very little pain. do I really need to go on anything at all if I'm getting these results? This disease can be so confusing.
_________________________
Teri
http://agluten-freemama.blogspot.com/

Pain since 1989
Mis-diagnosed until 2011
SI joints somewhat fused, lower back is trying to fuse
Osteoarthritis in hips
Follows NSD
Taking very high doses Vitamin C and Niacinamide
Takes Ibuprofen only when needed
Loves to swim

Top
#462239 - 02/08/12 04:28 AM Re: Help needed; sulfasalazine [Re: utahmom]
Adzy Offline
Active_Member

Registered: 01/16/12
Posts: 55
Loc: Queensland, Australia
I was put on sulfasalazine when i was first told i had AS...
I had to change to something else because i was not sleeping very well.
I was only getting about 1/2 an hr sleep a night....
As soon as i got off it i started to sleep a hell of alot better....
My doc said that its not very common for that to happen
Hope this helps.
_________________________
Train Hard...
Work Hard...
Play Well...
Live Well........... Jeff smile

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#462247 - 02/08/12 07:01 AM Re: Help needed; sulfasalazine [Re: utahmom]
Winter Offline
Third_Degree_AS_Kicker

Registered: 12/01/10
Posts: 262
Hi Terri: I just started Sulfasalazine a few months ago. I had to slowly increase the dose. I ended up with a terrible sinus infection. Still on the third antibiotic to kick it out frown so I stopped the Sulfasalazine because I thought it was contributing to my lingering infection.

I would say I was getting mild pain relief from being on it. If I can tolerate the full dose, maybe I can get more pain relief. Sorry guys to have to put this out there, but I did have problems with yeast while being on it so take your probiotics!

I tried Remicade, Humira and Enbrel. Remicade and Humira did not work. Enbrel worked great for a few years and then I started picking up too many infections and was breaking out in hives constantly so I had to stop the Enbrel frown.

Hope this helps!

Shari
_________________________
Meds: injectable MTX, Simponi, daily hydrocortisone, pain meds, NSAIDs, Methylprednisone for flare ups, Armour thyroid

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#462259 - 02/08/12 10:33 AM Re: Help needed; sulfasalazine [Re: Winter]
Winter Offline
Third_Degree_AS_Kicker

Registered: 12/01/10
Posts: 262
Hi Terri: I was only getting 3-4 hours of sleep per night on Sulfasalazine with Ambien.

Shari
_________________________
Meds: injectable MTX, Simponi, daily hydrocortisone, pain meds, NSAIDs, Methylprednisone for flare ups, Armour thyroid

Top
#462263 - 02/08/12 10:46 AM Re: Help needed; sulfasalazine [Re: utahmom]
joannesas Offline
Apprentice_AS_Kicker

Registered: 11/15/11
Posts: 96
Loc: Cayuga, Ontario
Originally Posted By: utahmom
So far I'm also getting great results from NSD (as long as I don't blow it like I did this last weekend). I have very little pain. do I really need to go on anything at all if I'm getting these results? This disease can be so confusing.
I wonder the same thing too. I'm managing with only NSD but wonder if it's enough. Anyone have some insight on this? confused

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#462266 - 02/08/12 10:59 AM Re: Help needed; sulfasalazine [Re: utahmom]
Philsta Offline
Journeyman_AS_Kicker

Registered: 02/20/11
Posts: 128
Loc: Perth, Australia - Frankfurt, ...
I have taken it for a bit over a year.

Has not caused any side-effects and I have not had a flare-up of hip pain (which is what got me diagnosed) since I started it, so I guess it works.

I am doing LSD at the same time though so I don't know whether it is the LSD, azulfidine or both.

Top
#462307 - 02/08/12 04:00 PM Re: Help needed; sulfasalazine [Re: Winter]
Adzy Offline
Active_Member

Registered: 01/16/12
Posts: 55
Loc: Queensland, Australia
sulfasalzine works as a autoimmune suppresser.
so its very likly that it was contributing to your sinus infection.
_________________________
Train Hard...
Work Hard...
Play Well...
Live Well........... Jeff smile

Top
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