Sulfasalazine - help!!!!!

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WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 12/31/2008 8:18 AM (GMT -6)   
Happy New Year!
 
Last week I switched GI's to Dr. Chiefetz at Beth Israel in Boston. I explained to him that since weening off the prednisone in August...I am still bleeding. I was taking 12 asacol pills, canasa 2x a day and hydrocort enema since. He was SHOCKED and concerned that with all those meds I still was sick. He also was AGAINST me being on the steriod enemas. He said it was like taking 10mgs of prednisone and he quickly instructed me to ween off of them. 
 
As u can see from my siggy...I have procitis. I have been basically flaring since January. Maybe had a month of remission after being hospitalized and then on a high dose of pred.
 
Because I am currently trying to get pregnant (another failed IVF cycle/miscarriage in September) and my frozen cycle in November failed....I am still hesitant to go on 6MP. I did schedule an appt with a high risk OB to learn about 6MP and pregnancy. In the meantime, my new dr. told me stop taking asacol and has switched me to sulfasalzine. He ultimately wants me to take 4 pills 2x a day. I am slowly working my way up there. I am 2pills 2x a day. I have suddenly become rather naseous/sick and have a loss of appeptite.
 
for folks on this med....
 
is this a common side effect? did you lose weight from this drug?
has it helped you after you might of had no luck with the other 5-ASA meds?
when do you take your folic acid since you have to space it apart?
how long did it take to start working?
 
For others that might be reading this...I am still shocked about the enema situation. This GI was totally AGAINST long term steriod use. My other GI had no problem with it. ????
 
THANK YOU FOR YOUR ADVICE AND HELP!
 
 
ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/31/2008 8:47 AM (GMT -6)   
If a GI sees no problem with long term steroid use then I would see about getting another doc - which you did. Long term steroid use, even if it's in enema form, can cause complications with our skeletal structure it can also raise some optical issues as well. As for the sulfasalazine, are you taking it with food? If you are nauseas it can be that your body is adjusting to the change and if I'm not mistaken nausea is a side effect of this med. If the nausea continues for longer then a couple weeks then you should let your doc know.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
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suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/31/2008 8:57 AM (GMT -6)   

I agree with Sherry, long term steroid use should be avoided at all costs.  Long term is anything over 4 months.  The steroid enemas are systemic and not safe for long term use unless you are willing to gamble with the side effects.   I took sulfasalazine for 10 years; at higher doses it made me nauseous but the nausea was temporary for me, it didn't last all day. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 12/31/2008 1:06 PM (GMT -6)   
Nausea is one of the possible side effects of Sullfasalazine. I have been on the drug over 20 years and never experienced nausea. When I first tried it I did get headaches and stopped the drug for a while tried it again and it was not a problem so if the drug is working you might want to "tuff" it out for a while and see if the nausea goes away.

All long term steroid use and particularly at high dose levels is definitely to be avoided. I disagree that steroid enemas are systemic, their main effect is topical, yes there is a small amount that is absorbed into the body. The cort-enemas can be very useful in treating a proctitis flare. They are much safer than oral predinsone which is indeed a systemic med and the ememas have far fewer side effects, due to the small amount absorbed by the body. Best to avoid all steroids if possible but cortisone enemas are one of the safest to use.

Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 12/31/2008 4:57 PM (GMT -6)   
I have been taking sulfasalazine for over twenty years. Sometimes it does make me feel the burning/nauseous yukky upset stomach. But now I make sure I have eaten something and drink a lot of water. I never take more than two pills at a time. Sometimes I take 2 pills 4x a day, or 2 pills 3x a day or if I am in a steady remission, twice a day.

But they are very acidic for me so if I am being affected with that burning/nauseated feeling, I take a Zantac 150. That seems to really help me.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/2/2009 10:57 AM (GMT -6)   
Thank you all for your replies. I have been on the sulfasalazine now for over a week. I am taking 3 pills in the AM and 2 at night. I need to go to 4 pills 2x a day. I have cut down on the hydrocort enemas...and have noticed a difference. I have A LOT MORE BLOOD! I am not sure if I shoul call the Dr. or just ride it out.

He thought this was my last shot before going on 6MP...which I am nervous to...since I want to get pregnant.
ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 1/2/2009 1:23 PM (GMT -6)   
This may sound cruel to you, but first things first. You should get UC into remission BEFORE trying to get pregnant. Either way you put your own health at risk; however, pregnancy is much more risky if your UC does not come under control. Many female members writing here report flare-ups at different stages of pregnancy + post-partum, but they generally have had experience controlling flares/getting to remission pre-pregnancy so they manage pretty well to get back under control quickly. If it's not yet clear what meds you require to get your form of UC under control, you really need to find that out ASAP! It sounds like your new gastro is on the most up-to-date track, wanting you to get off steroids due to the longterm side effects-- like osteoporosis. Best wishes & take care. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 (original) Colazal daily for maintenance of remission)************* P.S RE Sulfasalazine-- are you taking the En-tabs? They are less likely to cause nausea than the round pills, unless you have sulfa tolerance issues, in which case the gastro could Rx Colazal for you or Lialda.

Post Edited (Old Hat) : 1/2/2009 12:30:23 PM (GMT-7)


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/2/2009 1:31 PM (GMT -6)   
I just dont know if 6MP is safe during pregnancy. My new GI at Beth Israel says yes. And he is referring me to a high risk OB so she can tell me it is safe. I just can't believe 1 inch of proctitis would make me go on 6MP. Will it even put me in remission? So far...nothing has.

i did lose 7% bone mass in my spine from the steriods in 08 that is why i will NEVER touch prednisone again. I am still so angry at my last GI. I was doing the steriod enemas since July.
ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 1/2/2009 1:53 PM (GMT -6)   
Did the gastros ever have you try Cortifoam? That is only a 10% steroid formula retention foam (easier to retain than liquid enemas) that stays put in the rectum & performs miracles for many of us. Maybe the new gastro would let you try it for, say, 3 weeks. It would not have steroid side effect issues. Unfortunately, UProctitis can be very persistent-- you're not alone in dealing with that judging from member reports here. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/2/2009 2:05 PM (GMT -6)   
Yup... I tried cortafoam 2x a day. I have tried everything.

ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 1/2/2009 2:28 PM (GMT -6)   
Sorry that Cortifoam didn't help. That being the case, then, your new gastro is steering toward 6MP because it's considered the safest immunomodulator at this point in time. You may be in a similar response situation to Julee70, who hasn't posted for a couple months. As I recall, she wrote that none of the 5-ASAs helped her proctitis so she went on 6MP. She seemed to be doing o.k. on it but still hoped for a helpful rectal med. She has a great sense of humor despite it all-- so, hopefully, she'll come back on & advise you. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 1/3/2009 9:14 AM (GMT -6)   
Regarding the use of sulfasalazine - I have been using it for close to 20 years (currently taking 8 per day as I am flaring). When I first took it, I did indeed feel nauseous and generally lousy. I then opted for the enteric version and the side effects went away. You may want to give that a try.

Good Luck!

rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 1/3/2009 12:54 PM (GMT -6)   
For one inch of Proctitis the normal first treatment would be a suppository not an enema You said you have tried "everything" so I assume you have tried Canasa a 5-ASA suppository and also the 5ASA enemas, if not first try the Canasa in the 1000 mg version. Proctitis can be very stubborn to control. They say it is a "mild" form of UC which is true in the sense that there are for the most part minimal long term consequences such as cancer. The problem is the location of the inflammation causes real urgency issues, as well as I believe, more trauma to the inflamed tissues resulting in a lot of blood.

WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/3/2009 2:14 PM (GMT -6)   
I have tried canasa 2x a day as well. I am currently still on them.

ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 1/3/2009 6:32 PM (GMT -6)   
I take 3 pills in the morning and 3 at night. When I was first put on them back in Oct. '07, they made me seriously nauseous. I also had severe headaches and felt dizzy at times. After a couple of weeks I got used to them and haven't had a problem since. Actually my stomach seems a bit more acidic so I chew 2 tums when I get that acid feeling. My GI recommends them anyways.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Canasa 1000mg @night. Started Oct. 23, 2008

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