Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Lynn- You're not misinterpreting. Some studies have linked methotrexate with the development of malignancies. However, from what I've read there's no indication that with the very small dosages given for jra the risk is significant - I believe I read something like 1-2%. Still, always something more to worry about . . . Diane (, 2, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 I asked the rheumatologist about the lymphoma and she said that a very small number of kids with JRA on methotrexate developed lymphoma but there is no way to know if these kids would have developed lymphoma anyway. They cannot directly link the methotrexate and lymphoma. Re: methotrexate question Lynn- You're not misinterpreting. Some studies have linked methotrexate with the development of malignancies. However, from what I've read there's no indication that with the very small dosages given for jra the risk is significant - I believe I read something like 1-2%. Still, always something more to worry about . . . Diane (, 2, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Lynn, I don't have any answers for you. On April 17th, though, an article came out on the Doc's Guide website about a new study reported in the Journal of Cutaneous Medicine and Surgery. I don't know if this will help explain that warning. This also isn't specific to MTX used in the treatment of arthritis. I'm assuming that this study, the review of which is pasted in below, was done on cancer patients(?). Possibly they wanted to disclose all possible risks? Aloha, Georgina Methotrexate Might Increase Risk Of Mycosis Fungoides Transformation A DGReview of :"Transformation in Mycosis Fungoides: The Role of Methotrexate"Journal of Cutaneous Medicine and Surgery Methotrexate may increase the risk that mycosis fungoides will transform into large cell lymphoma, but the link is currently unproven.Although patients with mycosis fungoides can undergo transformation to large cell lymphoma, the risk factors are not well established. While advanced mycosis fungoides seems especially likely to transform, the rarity of mycosis fungoides means that roles played by other factors isn't known.Against this background, researchers from Boston University School of Medicine and Tufts University School of Medicine, Boston, Massachusetts, United States, aimed to ascertain the role of methotrexate in the progression of mycosis fungoides to large cell lymphoma. The authors identified 134 patients with mycosis fungoides from their cutaneous lymphoma database.Three of the 21 patients (14.3 percent) with mycosis fungoides who received methotrexate transformed to large cell lymphoma. However, only two of the 113 patients (1.8 percent) who did not receive methotrexate progressed. This difference in transformation rates reached statistical significance. The authors added that the difference in transformation rates remained significant after controlling for disease stage and sex. One patient that transformed showed identical dominant T-cell clones in the large cell lymphoma and other skin samples.The authors concluded that methotrexate seems to be associated with an increased risk that mycosis fungoides will transform into large cell lymphoma. However, as the number of patients was small, follow-up was short and because mycosis fungoides inherently transforms, the authors noted that methotrexate's role "in transformation is unproven". They added that the putative link needs confirmation in a multi-centre study. Journal of Cutaneous Medicine and Surgery DOI: 10.1007/s10227-001-0040-y. "Transformation in Mycosis Fungoides: The Role of Methotrexate" ----- Original Message ----- From: Lynn Young Although Mickey has been on methotrexate for more than 3 years, and althoughI'm sure I'd read all the info on the drug sheet before now, for some reasonI went searching again tonight, reading more. I found a web page that wascalled "A Family Physicians Guide to Monitoring Methotrexate". It was on thewebsite for the American Academy of Family Physicians.On one part of it, it listed issues the doctor should go over with thefamily when they make the decision to start using MTX. The last part of thisread "Warn patients about the potential development of malignancy,specifically lymphoma."So of course I looked up lymphoma (even though I kind of knew it meantcancer). I'm just a little confused. I do know that mtx is a cancertreatment chemotherapy drug... in higher doses than is used for treatingarthritis, of course. But why would use of mtx seem to be listed as a riskfactor for DEVELOPING cancer when used as an arthritis drug? Does anyonehave any ideas about this? Am I just mis-interpreting?the whole page can be found atwww.aafp.org/afp/20001001/1607.htmlFeeling a little paranoid lately... seems like the more I read, the more Ifind all of this is like a dog chasing its tail... nobody knows what causesthis, genetic predisposition, environmental triggers, bacterialinfections... and all these phrases keep popping up related to so many otherdiseases, and all of them mention how much more prevalent it is than it usedto be. Am I the only one who worries about what pollution is doing to ourplanet and our children? No, I know I'm not. Just overtired right now and"awfulizing". Not a good thing, and pointless to agonize over. I shouldn'tget started on wondering about why the chase for the almighty profit lineand dividend payouts should blind corporations to the fact that so far, noone has found another habitable planet - do those people not have childrenor grandchildren? If they're smart enough to run multinational corporations,can they not see what is happening to us, our planet, our children, becauseof pollution? Okay, I'm getting off my soapbox now...Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 What I read ( and I can't remember where it was) said that a slightly higher occurence of lymphoma had been shown in some studies, but the studies involved the much higher dosages of mtx taken for cancer therapy. It said studies had not shown a linkage between mtx and lymphoma when mtx is taken in the low dosages used for treatment of jra. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 I am thinking that there must be some kind of identifiable connection or the manufacturer would not have put it on the info sheet. Of course, there is no way to tell if these children would have had the lymphoma without the med since they did not have the opportunity to not take the med. I think that when doing these studies they see a higher incidence (however small) in children with all other given risk factors the same - obviously I am not a researcher - so I am not sounding very intelligent in the way that I am trying to express this. Rob isn't even on methotrexate. He is taking Cyclosporine, and the literature on that med makes a similar comment, so it concerns me. But we have to look at the quality of life of our child and weigh the risks - as we have so often discussed. Best wishes to all. Val Rob's Mom (4,systemic) In a message dated Mon, 22 Apr 2002 8:53:09 AM Eastern Daylight Time, " Sevco, " <sevcoca@...> writes: >I asked the rheumatologist about the lymphoma and she said that a very >small number of kids with JRA on methotrexate developed lymphoma but there >is no way to know if these kids would have developed lymphoma anyway. They >cannot directly link the methotrexate and lymphoma. > > Re: methotrexate question > > Lynn- > > You're not misinterpreting. Some studies have linked >methotrexate with the > development of malignancies. However, from what I've read >there's no > indication that with the very small dosages given for jra >the risk is > significant - I believe I read something like 1-2%. Still, >always something > more to worry about . . . > > Diane > (, 2, pauci) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Hi Janine, MTX is not a pain killer, but (at least for me), reducing or eliminating the source of the pain, by slowly down my immune system gone wild, thusly eliminates the pain. It attacks the problem at it's source rather than relieving the symptoms. I was encouraged to take various pain killers when starting MTX, but none had worked previously, so I didn't see much sense in continuing taking something that doesn't work. Yes, I had to tough out about 3 weeks, but those weeks were no worse than previous weeks, months. Now, I am virtually pain free, and I use only 10mg of MTX per week w/Folic Acid. I consider myself " lucky " that MTX has worked so well for me. I only hope that it continues it's magic without causing any harm for a long time. Stay Well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 , I'm considering going on MXT, but scared of the side affects. What were your symptoms before you started taking MXT. I don't have any psoriasis. But my father did. My pain is in my feet..........big time...........now difficult to walk much........real hard to stand in line for anything. Thanks......Randy [ ] Re: Methotrexate question Hi Janine, MTX is not a pain killer, but (at least for me), reducing or eliminating the source of the pain, by slowly down my immune system gone wild, thusly eliminates the pain. It attacks the problem at it's source rather than relieving the symptoms. I was encouraged to take various pain killers when starting MTX, but none had worked previously, so I didn't see much sense in continuing taking something that doesn't work. Yes, I had to tough out about 3 weeks, but those weeks were no worse than previous weeks, months. Now, I am virtually pain free, and I use only 10mg of MTX per week w/Folic Acid. I consider myself " lucky " that MTX has worked so well for me. I only hope that it continues it's magic without causing any harm for a long time. Stay Well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 << What were your symptoms before you started taking MXT. I don't have any psoriasis. But my father did. My pain is in my feet..........big time...........now difficult to walk much>> Hi Randy, I too, had no Psoriasis before I started having pain. Prior to MTX, (I've been on it since 4/02)I had much difficulty walking, sausage digits on my hands & feet. Stiff knees, stiff elbows. Walking was excrutiating, physical activity severely limited. I started to experience relief from MTX after about 2 weeks, complete relief by week 4. I have had minimal side effects. I have had an occaisional mouth sore, and a little fatigue from time to time. Oddly, my Psoriasis started long after (6 months) I had severe pain. And even more strangely, My Psoriasis has not subsided. MTX is supossed to stop that as well, but so far not for me. But having A few patches is preferable to not being able to walk. My blood tests have shown no adverse changes. I know that I will most likely need to have a liver biopsy about 12-18 months from now. Depending if that is an easy, relatively painless procedure or too much to handle, I will make further decisions from that point. MTX seems to work well for some people, not for others. Some folks cannot tolerate it at all. I feel lucky that it works so well for me at such a low dose. I would suggest trying it if your doctor reccommends it. If you have problems with it, you can stop. For me, it was a no-brainer. All the NSAIDS did absolutely nothing. Stay Well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 , Thanks for the candid observations and advise...I will check with my doc and maybe try it........Thanks again. Randy [ ] Re: Methotrexate question << What were your symptoms before you started taking MXT. I don't have any psoriasis. But my father did. My pain is in my feet..........big time...........now difficult to walk much>> Hi Randy, I too, had no Psoriasis before I started having pain. Prior to MTX, (I've been on it since 4/02)I had much difficulty walking, sausage digits on my hands & feet. Stiff knees, stiff elbows. Walking was excrutiating, physical activity severely limited. I started to experience relief from MTX after about 2 weeks, complete relief by week 4. I have had minimal side effects. I have had an occaisional mouth sore, and a little fatigue from time to time. Oddly, my Psoriasis started long after (6 months) I had severe pain. And even more strangely, My Psoriasis has not subsided. MTX is supossed to stop that as well, but so far not for me. But having A few patches is preferable to not being able to walk. My blood tests have shown no adverse changes. I know that I will most likely need to have a liver biopsy about 12-18 months from now. Depending if that is an easy, relatively painless procedure or too much to handle, I will make further decisions from that point. MTX seems to work well for some people, not for others. Some folks cannot tolerate it at all. I feel lucky that it works so well for me at such a low dose. I would suggest trying it if your doctor reccommends it. If you have problems with it, you can stop. For me, it was a no-brainer. All the NSAIDS did absolutely nothing. Stay Well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Does anyone know if MTX causes you to lose your ability to taste? My doctors are finally telling me its time to go on it. The problem is, I do all of the wine, beer and cocktail development for Red Lobster, and I basically drink for a living. I could deal with tasting and spitting, but if my taste buds go, it will be a real problem! The doctors say it is not an issue, but I seem to recall some people on this board saying they had trouble with this... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 > <<Does anyone know if MTX causes you to lose your ability to taste? >> My tastebuds were not affected while I was on MTX. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 > Does anyone know if MTX causes you to lose your ability > to taste? My doctors are finally telling me its time to go on > it. The problem is, I do all of the wine, beer and cocktail > development for Red Lobster, and I basically drink for a > living. ... > > > Poor baby - it's a tough job but someone has to do it, right? LOL! It reminds it of the old " Cheers " episode where Norm gets a job tasting beer in a brewery. ;-) For what it's worth, MTX never caused me any problems with my taste buds - but then of course I'm not a professional taster. -- Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 > > Does anyone know if MTX causes you to lose your ability > > to taste? My doctors are finally telling me its time to go on > > it. The problem is, I do all of the wine, beer and cocktail > > development for Red Lobster, and I basically drink for a > > living. ... , I didn't lose the ability to taste but there have been weeks that my tongue has felt swollen or raw the day or two after taking the MTX. The Dr. just upped my folic acid to 2 a day and seems to have helped so you might ask your Dr. about it if you have problems. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 you may want to think twice about going on MTX if you " drink for a living " . At the very least let your rheumatologist know. The combination of MTX and alcohol can cause some serious problems for your liver. adriane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 rachelviognier@... writes: <<Does anyone know if MTX causes you to lose your ability to taste? My doctors are finally telling me its time to go on it. The problem is, I do all of the wine, beer and cocktail development >> , If you are going to go on Mtx, then you had better find another way to make a living because you are not permitted to drink alcohol on Mtx. You can damage your liver severely. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 , I have been on MTX for 3-1/2 years, now at 0.8 mL (20 mg) injected. I have never lost my ability to taste. I love to cook when I am feeling well, and my taster works just fine. The only side effects I have had from MTX is fatigue and nausea, and sometimes vomiting (all controlled now by taking Protonix and injecting MTX instead of taking it orally. Carol in Vancouver, Washington In a message dated 6/17/03 11:10:56 PM Pacific Daylight Time, rachelviognier@... writes: > Does anyone know if MTX causes you to lose your ability to taste? My > doctors > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 I know I have been on it for about 2 years now and my lab shows some liver problems. Has since the begining of treatment. As long as there have been no drastic changes and the liver biopsies are ok, he keeps me on it. I just switched a few months ago to injectable, boy what a difference!!! Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 I was on it before, and my liver enzymes were high, so I was taken off of it for awhile. This time, I've been on it about a year, and I feel it's working alright. I've heard the injections are better. I hope that it continues to work for you, and everything stays normal. T PS:Thanks for your prayers, they truly work:) > I know I have been on it for about 2 years now and my lab shows some > liver problems. Has since the begining of treatment. As long as > there have been no drastic changes and the liver biopsies are ok, he > keeps me on it. I just switched a few months ago to injectable, boy > what a difference!!! Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Honestly I am still walking because of Methotrexate. I took it for twenty years and I do not regret it for a minute. I had one liver biopsy which was unnecessary . . . do not let someone con you into having one unless your blood work indicates a need for it. I know the medicine makes you feel like you have a touch of the stomach flu most of the time . . . but I am very grateful for what it has done for me. anne moody <dearmaxie@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Hi , A couple of thoughts. I never had any nausea, but if you are taking it on an empty stomach, try eating something soon before or after. As far as the fatigue, I've said before and am saying again, I was exhausted before I ever took MTX, and while I still sleep much more now than ever, I attribute the fatigue to the PA rather than the MTX. Finally, the liver biopsy. For me it was a NON-EVENT. I've been on 10-12.5 mg of MTX for OVER 5 years. If I can continue taking it for another 5 years w/o a biopsy, I consider that wonderful. I haven't gotten the results yet, but will get them next week. Stay Well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Jenn - Are you taking folic acid?? That should relieve the nausea. My son takes 1mg/day and as long as he remembers to take it everyday he won't be nauseated the day after he has the MTX. But if he forgets one day he will be sick. I'm not sure what helps the fatigue. Grant's seems to be getting better the longer he is on it though. He has been on it for almost 12 weeks now. Hope the folic acid helps! & Grant (11, PsA/Uveitis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Hi , I've been taking oral MTX for almost 5 years. I had to quit the injections because (I know it wasall in my head!) but, I could just look at that yellow liquid and make myself deathly sick to my stomach. The pills still make me nauseous sometimes. I always divide the dosage between two days. I always take them at night and always with food. I also take a stomach aid like pepcid AC or a Benydril. My motto concerning the drugs and the disease is " don't worry until you know what you have to worry about " . Make sure you do all your blood tests and call your rheumy whenever you have a question. I email mine, and he always answers me within a couple hours. The same with my PC. One of our best defenses with this disease is *frame of mind*. I know it is hard to be positive when you are in pain, but with the aid of music and meditation I can manage the mind over matter quite well. I also like to lose myself in a good novel that doesn't require a lot of thought or concentration. It helps to take the mind elsewhere. The fatigue is another matter. I just go with the flow. I've been on SSD for 4 years now, so I can settle in and lay back with a book or watch tv when the fatigue gets bad. I also have fibro, so I have learned to just accept it as a way of my life. If anyone comes up with a remedy, I want to be the first to know. I have a million things I would love to do if I could. Good luck to you and God Bless. Janet in Ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Hi , I've been on 25mg.of MTX since Sept. & like you it seems the longer I'm on it the longer the fatigue & nausea lasts, seems like the 2nd. day after mtx is the worst. Just last week I started taking Enbrel so I can eventually get off the MTX. I starting to feel that the MTX is worse than the disease. My rheumy started me on Leucovorin [folnic acid] 8 hours after the MTX to try to help with the side effects but it really doesn't seem to make any difference. I'm really hoping the Enbrel allows me to get off the MTX all together in a few months. Keep your head up, there are many worse diseases we could have....Nauseated in Pittsburgh, Armand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 - MTX can cause or exacerbate reflux. My rheumy said that was what was causing my (horrible) nausea. It didn't make sense to me because it didn't feel like heartburn, it felt like the stomach flu. But when I took the Zantac like she told me to, the nausea went away!!! I took Zantac the day before my MTX and sometimes for a day or 2 after. No more bad nausea. You can get Zantac over-the- counter - I used a generic brand that was real cheap. Look for Ranitidine, that's the generic name. regards, sherry z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 HI , I was just diagnosed with PA, although I have had it for many years. I went to UAB for my second opinion and it was confirmed. I have Sjogrens, PA with Fibro overlaping...UGH I tried mtx and had the same problems as you. My Rhmy took me off of it immediately and put me on Arava. It is also making me sick. Not as much as the mtx. However, the rheumy at UAB said I should try injectiable mtx and use enbriel as well...The injectiable is not suppose to make me as sick...They will act as a consultant to my rhmy here in Dothan and I will drive to Birmingham once a year for a check up with them. I will have to see what they come up with at my next appt. I use Liderdom patches for pain along with Ultram ER and plain Ultram I also have a prescription for darvocet. I had the WORST pain of my life last night in my left foot...I used the patches and took the max dose of Ultram and barely received relief.... It is better today just very sore and swollen. I also have arthritis in my spine and have had neck surgery. I have a large knot/lump between my shoulders and the rheumy at UAB said it was from scare tissue and arthritis.... Pam Alabama Quote Link to comment Share on other sites More sharing options...
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