Tomorrow I travel 6 hrs for my 2nd visit with my new Rheumatologist. Been dealing with a mystery disease, or maybe 20, for 8 years, progressively getting worse to the point I had to shut down our business of 36 years because the bed and recliner are now my abode. My wife had to stop her career in Occupational Therapy to make sure I can go to (at least 3-4 per week) Dr. appointments. I can't even drive.
Many strange coinciding symptoms which I can share another time.
My immediate concern ... because of tomorrow's appt. is about Methyltrexate and Lefluonomide. Could I of had a major reaction of 6 weeks of diarrhea? Or was this just a coincidence? I stopped those meds. after one and a half weeks of initial dose. C Diff. was ruled out. Four days on Lometil finally stopped the flow. Let me know what anyone has to offer.
Thanks, Augie1140. P.S. My profile can give you the laundry list so as to not take up your time on this post.
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Augie1140
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Augie, I’m so sorry to hear all this. I would think that any meds as strong as Methotrexate could cause some issues while adjusting, but your doctor will be the best one to answer this for you. We might say ‘it’s an adjustment’ thing, but, your doctor may find it’s an allergic reaction thing🤷🏻♀️So, it’s a good thing you have an appt. tomorrow so you can ask. I wish you the best and hope things get straightened out for you.Merry Christmas.
It is a listed and well know adverse affect of leflunomide - not an allergic reaction though, a similar effect to how many people react to antibiotcs but it doesn't mean an allergy, Sometimes it improves after the first few weeks but quite few patients develop diarrhoea that prevents them leaving the house.
Hope things get sorted out the diarrohea is draining. Whilst I was on Azatropine,found it troublesome,took Imodium,which helped.didne ask the doc about immodium.
The dmards are-strong stuff.when. I was on it I had loss of appetite ,nausea severe indigestion. I was happy to put up with this because I was getting brelief from some of the symptoms.
When the consultant told me my liver enzymes were raised and to come off Azatropine,I told her about my symptoms,she remarked that it sounded as though wasn’t an appropriate drug,given the side effects!
Am now on Cellcept.was ok till I got to full dose,
I was pretty rough,so dropped the dosage down,so that I could have a reasonable. Christmas with my grandchildren.
One surprising thing is that my baldy patches are now starting to be covered in hair.its a bit strange ,it’s a slightly different colour and texture and I can’t do a thing with it.i just put my wig on.
I’m lucky only have a 45 minute drive to see rheumatologist,thank goodness.
I hope you get some info and hopefully some relief from your symptoms
Hi, I was on this combo a few years ago. 20mg of leflunomide and 15mg Mtx. I did have stomach issues to begin with. I ended up splitting the leflunomide dose and taking 1 in the morning and the other in the evening. This made it bearable and eventually it did all settle.
So sorry to hear things are not going well. I don’t know what conditions you are suffering from so I can only share my personal experiences with both those drugs. I started Methotrexate in 2007 after being diagnosed with Lupus. It upset my stomach a bit at first and a loss of appetite on the days I took it (I split the dose in two days to help relieve the symptoms.) things did settle down after a little while. Suddenly, without any obvious reason, in 2016, it just stopped working. They switched me to Leflunomide which was fine for three weeks then I started bouts of diarrhoea. I was advised to stop the Leflunomide and try again in a few days. Same thing although after only a few days this time. This was repeated a few times and I spent hours in Emergency being rehydrated on a number of occasions. I decided I couldn’t take Leflunomide but the episodes of diarrhoea continued. After a colonoscopy, microscopic colitis was diagnosed, probably caused by the reaction to Leflunomide. Which I am now stuck with and have to manage alongside Lupus. I can’t advise you. I would only say I listen to my body and if it reacts so violently to a drug, then it’s not for me.
Coincidently, and this may be helpful, I decided to try Methotrexate again and it worked pretty well. After a few months, they added Tofacitinib, a biologic and I can truly say the combination has completely changed my life. I go to the gym, exercise class, long walks, look after grandsons, and have as much energy as anyone my age (69). I volunteer at a Crisis Centre one day a week, something my fatigue would not have a allowed before.
p.s. I still split my Methotrexate dose between two days, it doesn’t upset my stomach that way.
I took my for years in divided doses like another of your replies because of the terrible headaches. I dont remember any serious bowel disturbances but def got that when leflunamide was added. Not diarrhoea as much as frequent bowel actions so the bonus was twofold: losing weight and it finally got my lupus under control. I took it for about 2 years but had to stop as was starting to get some nerve damage, and was very prone to infection, but the lupus has never been as severe since! You need to have an honest discussion with your rheumatologist. Good luck
Thanks for the info. I may try it again because I still have unexplained diarrhea. Therefore the stomach issues may be unrelated to the meds.
Thanks Again,
Augie
It’s well known side effect of Leflunomide - which unlike other dmards doesn’t leave your body when you stop so some end up requiring another medication to help cleanse the Leflunomide from your body.
I’m not sure how long it takes to clear the body but I was offered this med to take with MTX but decided against it when I read all this. It’s more commonly taken for RA than Lupus so it might be worth asking on the NRAS HU for experiences of others.
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