Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 I take the higher dose of folic acid to compensate for the effects of sulfasalazine, which I take for UC. Hi, I was searching for posts on sulfasalazine and found this remark. What effects does sulfasalazine have? What experiences did the quoted poster have and others who take or have taken this med? --And, how doeds the med work for you? Does anyone take it to also help with joint pain -and does it help with this? My son is switching from Pentasa to Sulfasalazine this week (to have the added benefit of pain- killer for his joints). He took Pentasa for 19 months. Also, is there an adjustment period with GI symptom-like side effects? How long, typically? My son had this when starting on his Pentasa, was sick with symptoms identical to his IBD for a long time before he adjusted. I am also nervous about the sulfasalazine not working out and that if/when our son goes back on Pentasa, he will have the same difficult adjustment on Pentasa that he did before. Any experience with this, too, or thoughts?? Thank you, Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune hives, disabled Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 > I was on sulfasalazine for the better part of 14 years with my UC and it was by far the best maintenance drug that I had ever tried. Since your son also has joint pains, this would be a good switch for him as the added ingredient of sulphur should provide some relief for that since it is similar to aspirin. I noticed that it was helpful controlling the abdominal pain I occasionally had with my ulcerative colitis. This sounds wonderful, thank you for posting, Rick. And, abdominal pian is one of the few symptoms that still bother my son from time to time (he is almost fully in remission with his ibd -a crohn's colitis 'hybrid'), so honing in on that specific symptom sounds really good. > The side effects that I can recall from sulfasalazine is that I had more gas than normal and more foul smelling gas as well. My son gets the abdominal bloat, trapped upper intestinal gas and burping, but maybe he'll just trade that one for the other. We have a dog, so we might not even notice the difference if Wyatt gets the lower intestinal gas and flatulence. ) >You asked specifically about GI side effects Wyatt's GI said it was GI side effects that would be the likely problem and since that what's he had with Pentasa at first, I figured that's what it would be with sulfasalazine. He is starting 'slowly', starting with a lower dose and working up to the full amount -his doc said that might help, that and coated tablets. Thank you again -very much. -Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune hives, disabled Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 > I've taken sulfasalazine for UC for most of the last 30 years. I've been asymptomatic (with UC) for all but a couple of months of that time. There are a lot more 5-ASA medications now (Pentasa, Dipentum, etc.); sulfasalazine was probably the first. It's an oldie but a goodie, and has been very effective for me. I have asked about changing to one of the newer formulations, and was told not to if it's working for me. This also sounds wonderful, thank you Arne. I'm glad it has worked so well for you, too. Did you have an adjustment period when you began on it or no real problems from the get-go? > In a simplistic sense, it turns into aspirin when it gets to the bowel. Is this safe for psc, too, then --must be if you and Rick have both been on so long w/o problems?? > It impairs folic acid absorption, which is why folic acid supplementation is often prescribed. I took sulfasalazine for 28 years before taking folic acid. The folic acid deficiency results in an elevated MCV (mean corpuscular volume of red blood cells). Ah, it was your post I saw while searching. Thank you so much for expanding on this for me. I will call my son's GI tomorrow and ask if Wyatt should take folic acid or have a blood test to check for it after starting on the sulfasalazine (assuming there is blood test). This is very helpful information. > In men, it causes temporary infertility, which is reversible by stopping the medication. The medication alone causes this or the folic acid deficiency while taking the medication? Is it definitively reversible, no question about it? My son is already saving his old toys in our garage for his future child(ren) and I'm inclined toward becoming a grandparent someday, I must admit. What a curious side effect. Any idea why? Thank you again, Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune hives, disabled Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 > I've taken sulfasalazine for UC for most of the last 30 years. I've been asymptomatic (with UC) for all but a couple of months of that time. There are a lot more 5-ASA medications now (Pentasa, Dipentum, etc.); sulfasalazine was probably the first. It's an oldie but a goodie, and has been very effective for me. I have asked about changing to one of the newer formulations, and was told not to if it's working for me. This also sounds wonderful, thank you Arne. I'm glad it has worked so well for you, too. Did you have an adjustment period when you began on it or no real problems from the get-go? > In a simplistic sense, it turns into aspirin when it gets to the bowel. Is this safe for psc, too, then --must be if you and Rick have both been on so long w/o problems?? > It impairs folic acid absorption, which is why folic acid supplementation is often prescribed. I took sulfasalazine for 28 years before taking folic acid. The folic acid deficiency results in an elevated MCV (mean corpuscular volume of red blood cells). Ah, it was your post I saw while searching. Thank you so much for expanding on this for me. I will call my son's GI tomorrow and ask if Wyatt should take folic acid or have a blood test to check for it after starting on the sulfasalazine (assuming there is blood test). This is very helpful information. > In men, it causes temporary infertility, which is reversible by stopping the medication. The medication alone causes this or the folic acid deficiency while taking the medication? Is it definitively reversible, no question about it? My son is already saving his old toys in our garage for his future child(ren) and I'm inclined toward becoming a grandparent someday, I must admit. What a curious side effect. Any idea why? Thank you again, Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune hives, disabled Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > I took sulfasalizine and folic acid for 17 years pre-transplant. It did a fine job for me with only one side effect. It makes the effects of the sun much more intense, so you must use sun block. Did it cause a rash or did you burn more easily/quickly? Thanks for this additional possible side effect. This is wonderful, getting so much information for my son. I hope you are doing well post- transplant, no complications or problems. >I have not had joint pain, so I cannot say how it works for that, but would think that since it reduces inflammation that it would work well for that too. We're hoping so, otherwise we'd stick with Pentasa. > For a brief period of time I was on another drug that was more expensive, but did not work better so I ask to return to sulfasalizine. I do not remember any adjustment period. No adjustment period would be wonderful for my son. I hope he has the same experience as you. Thank you again, Joe. -Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune hives, disabled Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > It is orange as long as you are on the med. Well, maybe he'll just consider it festive then -he likes fall colors. ) We always try to spin a quirk a positive way at our house. Thank you, Joe. -Meghan, mom to 14yo Wyatt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 No rash, and with Norwegian ancestry (going back to at least the 1700s both sides), I'm not sure I could tell if I burned more easily anyway! Arne > Did it cause a rash or did you burn more easily/quickly? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 I also have taken sulfasalazine for over 30 years, and can't remember being told that folic should be added. I'll go back on it. I find that it's easy to get off the track on meds as the years go by. And sometimes Drs disagree about the usefulness of some meds. I've been asked by one Dr why I was "taking that stuff" re several meds. I always put in a good word for sulfasalazine. It halted my UC literally over night. No side effects in all that time. Don Please be a blood/organ donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 I also have taken sulfasalazine for over 30 years, and can't remember being told that folic should be added. I'll go back on it. I find that it's easy to get off the track on meds as the years go by. And sometimes Drs disagree about the usefulness of some meds. I've been asked by one Dr why I was "taking that stuff" re several meds. I always put in a good word for sulfasalazine. It halted my UC literally over night. No side effects in all that time. Don Please be a blood/organ donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > I burned more easily - no rashes. Thanks for the info. > I am doing well post-transplant. No restrictions and taking less meds than I did pre-transplant. I was told the first year can be a roller coaster while your body adjusts to the new organ. I have been very lucky. A small bump initially, then smooth sailing since then. It sounds like a new lease on life -I'm so glad it's going so well and hope it continues to or gets even better for you. -Meghan, mom to 14yo Wyatt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > No rash, and with Norwegian ancestry (going back to at least the 1700s both sides), I'm not sure I could tell if I burned more easily anyway! ) My husband and son are part Norwegian. My Mother-in-law's maiden name is Amundsen. We are normally good with sunscreen, but I'll tell Wyatt he has to be even more mindful of it on sulfasalazine. -Meghan, mom to 14yo Wyatt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > I also have taken sulfasalazine for over 30 years, and can't remember being told that folic should be added. I'll go back on it. I find that it's easy to get off the track on meds as the years go by. And sometimes Drs disagree about the usefulness of some meds. I've been asked by one Dr why I was " taking that stuff " re several meds. I always put in a good word for sulfasalazine. It halted my UC literally over night. No side effects in all that time. Thanks, Don. I haven't heard a negative word on it so far -that's impressive. -Meghan, mom to 14yo Wyatt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 > > > > > Did you have an adjustment period when you began on it or no real problems from the get-go? > No, other than learning I HAD to take it. I had no side effects other than orange urine. > > Is this safe for psc, too, then --must be if you and Rick have both been on so long w/o problems?? > It’s a well established drug, with well-known efficacy and side effects, that has many more years under its belt than others. My hepatologist recommended it over other alternatives based on my (good) results with it. > > I would have typed the same thing as Arne. I've been on it since 2 months before my official diagnosis (1984). At one point my doc switched me to Asacol but I did not have nearly the same result, so we went back. I do take Folic Acid because Sulfasalize is known to deplete it. My bone density tests have always been within normal range so all is well. > > (MO) > I saw you live in MO. I live near KC. Where do you go for treatment? Who is your doctor? Ellen Quote Link to comment Share on other sites More sharing options...
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