Good morning! This is my first post after recently joining this family. I was recently diagnosed and have been on a roller coaster ride with medications over the last couple of months. I do take meds for depression and PTSD, but I always tell my new docs what meds I am taking so there's no worry about weird side effects. I still have so much to learn about Lupus, but I have a couple of questons.
Has anyone had experiences good or bad with methotrexate and hydroxycholroquine? These apparently lower the immune system, but I had a strange reaction where the roof of my mouth necrotized (literally died and fell away). Thank god it is growing back now, but very scary. Had to go for biopsies to make sure it wasn't cancer. I felt like a freak show because none of the docs (infections disease doc, oncologist, oral surgeon and my primary had never seen it before.)
Any feedback would be very appreciated. Many thanks. Also anywhere I can get more info on Lupus?
The necrotizing you report, I don’t know if that is meds or lupus flare. I have been on hydroxy chloroquine otherwise known as plaquenil, for 3 years, no vision problems, less flares, which is great! The worse part is lowered white cell count and regular infections. My periods are longer and weight loss is active, but my doctor said my blood, kidneys and liver are fine. I am doing really well. My flares are drastically reduced and I feel better for longer periods of time. But, my paps are abnormal because of the low white cell count which is a side effect. It depends on what you can handle.
I have been on a combo of meds through the years…plaquenil, prednisone, methotrexate ( at various doses) in addition to my sjogrens meds…SLE and Sjogrens Syndrome diagnosis. The plaquenil no real side effects that I can tell, but you do need to visit Opthamologist as in rare cases can cause retina issues. Methotrexate is another matter…tons of side effects! As for your mouth issue, I’d say infection of some sort? Just a guess…I get thrush all the time and very frequent infections. Its caused hair loss for me, and it seems like the sun makes me feel sicker. The nausea is hard too. Blood work is constantly funky, at the moment I am under constant liver monitoring. I’ll be praying for you both
First, welcome to the group. You will find help and support from all of us. I have never had such a severe issue as you mentioned with your mouth. Just the 'regular' mouth sores that some of us Lupi's experience. Like it was mentioned, make sure you check with an eye dr. regularly .. I developed retina problems, and had to stop the Plaquenil. The methotrexate is another issue. Some people can take it for years and never have a problem, and some people not. I took it with the Prednisone for a long time, and then got off it. Was doing very well, then had to go back on it, and developed an allergic reaction to it....who knows why. Good luck, and feel better.
I too was bounced around on different meds for months until I was placed on methotraxate and Plaquniel these two meds put me in re-mission I thank God that my Dr. Finally tried these two for me. They saved my life
I had problems with sores in my mouth and inflamed gums for quite some time . My dentist said it was gum disease and sent me to a periodontist . The periodontist told me I had lichen planus which is a immune disease that affects the mouth . She said it is normally seen in people with lupus . My aunt died from lupus and my mother died from schleroderma and I have the gene for auto immune disease so I immediately went to the rheumatologist and after many tests discovered that I have early stage lupus . I was put on prednisone and plaquenil and the lichen planus healed up . Maybe what happened to you was also lichen planus and not caused by the medication at all .
I was diagnosed with lupus in January. My rheumatologist put me on hydroxycholroquine (and prednisone for 4 months) which brought me out of a terrible flare. I'm still taking hydroxychloroquine (and presumably will need to take it forever), and I've had NO known side effects. I feel much better and I'm grateful to finally be getting appropriate treatment after many years of being misdiagnosed and untreated. It takes a few months to reach full effectiveness - give it a chance. I hope it helps you as much as it has helped me! I wonder if your mouth symptoms were due to you're still being in a lupus flare, since lupus is known to cause mouth sores (for me - it's nose sores). My experience has been that it takes several months to get through a bad flare. If you want some really good information - get "The Lupus Book - A Guide for Patients and Their Families" by Daniel J. Wallace, M.D. It helped me and my family understand all this tremendously!
Good evening! I, too, am new to this group. It sure seems like there are a lot of kind, helpful people here. I’ve been on Plaquenil and Imuran for many years without problems. However, during the first few years, my rheumy tried several meds on me, Methotrexate, Celebrex, Sulfasalizine, and Enbrel, to name a few. I was not improving, so my doctor changed me to Enbrel and Methotrexate. Within six weeks, I was suffering from an antibiotic resistant pneumonia and was hospitalized with bilateral pulmonary emboli. After three open thoracic surgeries, my doctor told me that I had developed idiopathic lung disease, which left me with approximately 50% lung capacity. The biopsies were unclear as to whether my lesions were caused by my autoimmune disease or by Methotrexate. The doctors immediately halted both Enbrel and Methotrexate. I would tell anyone who is prescribed Methotrexate that it is a serious medication which can have dangerous side effects for some people. If you are taking it and you develop even the most mild cold or infection, in my opinion, you should immediately call your doctor who will most likely tell you to stop taking your immunosuppressants until your infection has cleared.
MizOh: welcome to the group. I am so sorry to hear of your lung problems. You must have been very scared during this time. I hope you will have a good recovery. Please rest, rest and rest some more. My prayers are with you. Good luck, and feel better.
MizOh: welcome to the group. I am so sorry to hear of your lung problems. You must have been very scared during this time. I hope you will have a good recovery. Please rest, rest and rest some more. My prayers are with you. Good luck, and feel better.
Thank you very much for the kind welcome. I am excited to find such a helpful, thoughtful group!