Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Meghan, 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. The mesalamine portion of the drug is essentially the same as you find in the name brand Pentasa. The side effects that I can recall from sulfasalazine is that I had more gas than normal and more foul smelling gas as well. But, that was a side effect I was willing to tolerate because the drug worked quite well for me. You asked specifically about GI side effects and unfortunately all 5ASA type drugs containing mesalamine (such as your Pentasa and as Sulfasazaline has) can cause diahrea and it can be difficult to tell if the drug is working or not since it can reproduce the very symptoms you are trying to treat. I wish the best of luck to both you and Wyatt. Rick From: [mailto: ] On Behalf Of Meghan Sent: Sunday, January 11, 2009 9:10 PM To: Subject: Re: sulfasalazine 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’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. In a simplistic sense, it turns into aspirin when it gets to the bowel. There are some side effects, which do not affect all people. 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). In men, it causes temporary infertility, which is reversible by stopping the medication. Arne UC 1977, PSC 2000 Alive and well in Minnesota From: [mailto: ] On Behalf Of Meghan …What effects does sulfasalazine have? What experiences did the quoted poster have and others who take or have taken this med? 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. In a simplistic sense, it turns into aspirin when it gets to the bowel. There are some side effects, which do not affect all people. 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). In men, it causes temporary infertility, which is reversible by stopping the medication. Arne UC 1977, PSC 2000 Alive and well in Minnesota From: [mailto: ] On Behalf Of Meghan …What effects does sulfasalazine have? What experiences did the quoted poster have and others who take or have taken this med? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 From: [mailto: ] On Behalf Of Meghan > 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. > In men, it causes temporary infertility, which is reversible by stopping the medication… What a curious side effect. Any idea why? I can personally attest that it is reversible. I can also state that it does not affect everyone this way. I know of several members (who had already fathered children) that were surprised to hear it. No idea why, but it’s assumed to be associated with the sulfapyridine complex (the “sulfa” part of sulfasalazine) rather than the 5-ASA (http://www.springerlink.com/content/xx624321734m074n/). Arne UC 1977, PSC 2000 Alive and well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 From: [mailto: ] On Behalf Of Meghan > 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. > In men, it causes temporary infertility, which is reversible by stopping the medication… What a curious side effect. Any idea why? I can personally attest that it is reversible. I can also state that it does not affect everyone this way. I know of several members (who had already fathered children) that were surprised to hear it. No idea why, but it’s assumed to be associated with the sulfapyridine complex (the “sulfa” part of sulfasalazine) rather than the 5-ASA (http://www.springerlink.com/content/xx624321734m074n/). Arne UC 1977, PSC 2000 Alive and well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 From: [mailto: ] On Behalf Of Meghan > 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. > In men, it causes temporary infertility, which is reversible by stopping the medication… What a curious side effect. Any idea why? I can personally attest that it is reversible. I can also state that it does not affect everyone this way. I know of several members (who had already fathered children) that were surprised to hear it. No idea why, but it’s assumed to be associated with the sulfapyridine complex (the “sulfa” part of sulfasalazine) rather than the 5-ASA (http://www.springerlink.com/content/xx624321734m074n/). Arne UC 1977, PSC 2000 Alive and well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 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) Listen to 350+ music, sports, news radio stations FREE while you browse.Start Listening Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Meghan, 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. 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. 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. Joe PSC & UC - 1990; Liver Tx-2007 I take the higher dose of folic acid to compensate for the effects of sulfasalazine, which I take for UC. What effects does sulfasalazine have? Does anyone take it to also help with joint pain -and does it help with this? Also, is there an adjustment period with GI symptom-like side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Meghan, 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. 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. 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. Joe PSC & UC - 1990; Liver Tx-2007 I take the higher dose of folic acid to compensate for the effects of sulfasalazine, which I take for UC. What effects does sulfasalazine have? Does anyone take it to also help with joint pain -and does it help with this? Also, is there an adjustment period with GI symptom-like side effects? 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. Joe is the urine forever orange or just until you adjust to the med? 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. Joe is the urine forever orange or just until you adjust to the med? 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. Joe is the urine forever orange or just until you adjust to the med? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Did it cause a rash or did you burn more easily/quickly? I burned more easily – no rashes. I hope you are doing well post-transplant, no complications or problems. 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. Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Did it cause a rash or did you burn more easily/quickly? I burned more easily – no rashes. I hope you are doing well post-transplant, no complications or problems. 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. Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Did it cause a rash or did you burn more easily/quickly? I burned more easily – no rashes. I hope you are doing well post-transplant, no complications or problems. 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. Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 After being treated with sulfasalazine for years successfully, I developed a sensitivity to sulfa. The palms of my hands started to itch constantly. I mentioned it to my GI and he switched me to asacol. The itch went away and I was once again a happy camper. Since then, I have listed sulfa as an allergen. Later I was given a diabetes med and felt rather crappy until I check the package which read "do not take if sulfa allergy present". Just a heads up. Take Care MizKit Listen to 350+ music, sports, news radio stations FREE while you browse.Start Listening Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 After being treated with sulfasalazine for years successfully, I developed a sensitivity to sulfa. The palms of my hands started to itch constantly. I mentioned it to my GI and he switched me to asacol. The itch went away and I was once again a happy camper. Since then, I have listed sulfa as an allergen. Later I was given a diabetes med and felt rather crappy until I check the package which read "do not take if sulfa allergy present". Just a heads up. Take Care MizKit Listen to 350+ music, sports, news radio stations FREE while you browse.Start Listening Now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 After being treated with sulfasalazine for years successfully, I developed a sensitivity to sulfa. The palms of my hands started to itch constantly. I mentioned it to my GI and he switched me to asacol. The itch went away and I was once again a happy camper. Since then, I have listed sulfa as an allergen. Later I was given a diabetes med and felt rather crappy until I check the package which read "do not take if sulfa allergy present". Just a heads up. Take Care MizKit Listen to 350+ music, sports, news radio stations FREE while you browse.Start Listening Now! Quote Link to comment Share on other sites More sharing options...
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