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MCTD, methotrexate, and cancer

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Posted 5/17/2014 8:04 PM (GMT 0)
HI - newbie here. Seems as though the last post was a few years ago. I was wondering if anyone else with MCTD has been on methotrexate and then developed cancer. Thanks.
Posted 5/18/2014 2:00 AM (GMT 0)
Welcome to Healing Well.

I don't understand what you mean about the last post being a few years ago. We have posts in the Lupus forum happening every day!!!

Offhand I don't remember anyone taking MTX that has developed cancer -- oh, wait, we do have a one that has a "blood cancer", but I don't remember if she was taking the MTX before that was diagnosed.

Hopefully someone that matches your criteria will be along soon!
Posted 5/18/2014 2:18 AM (GMT 0)
I was looking at the join dates, whoops. Is this the best place to post my question?

Thank you for your reply
Posted 5/18/2014 3:40 AM (GMT 0)
Hi, Lulumax -

Yes, this is a GREAT place to post your quesiton. There's a wonderful man named Bill on this site who has lived with MCTD longer much than I have, and I bet he will respond to your post.

I have not yet taking methotrexate (loooong story), but I have taken CellCept (mycophenlate) for an extended period of time, and that drug does increase your risk of developing lymphoma. My doc checks my complete blood count every month or two to keep an eye on things.

Hope this helps - a bit - until someone more experienced can chime in.  

Nina

 

Posted 5/18/2014 11:03 AM (GMT 0)
Thanks Nina, I was on the MTX for four years (20 mg, once a week) with blood tests every two months to monitor things.
Posted 5/20/2014 2:25 AM (GMT 0)
I have MCTD and had an extreme case with severe symptoms of lupus and even worse of polymyositis. Have been in remission for 8+ years now and have made a substantial recovery and lead an active life now. There is an increased risk of cancer with MCTD, polymyositis and dermatomyositis even more so but all of these AI diseases can carry an increased risk due to suppression of the immune system. Methotrexate, Imuran, prednisone and many other treatments that suppresse the immune system increase the risk of cancer. That is why it is important to have age and gender appropriate cancer screening just in case. I did not personally take methotrexate due to suspected lung involvement (turned out not to be the case) and took prednisone for 6 years and Imuran for 5. Skin cancer has hit me 6 times but it would be a stretch to say that it was caused by Imuran which is more associated with cancer than methotrexate. In my case it was most likely just way too much sun in my youth.

Here is a link to a recent article on cancer risk with methotrexate compare to other treatments for AI disease.

http://www.semarthritisrheumatism.com/article/S0049-0172(13)00170-4/fulltext

Bill
Posted 5/20/2014 5:47 AM (GMT 0)
Hi Lulumax:

I've had lupus for 26 years now and been on all of the medications offered to treat lupus and RA. The only drug I've not taken has been Gold injections, which I've been told will not make a difference for me.

Anyway, I tested positive several years ago in my bone marrow biopsy for sign of MDS. Myleodysplastic Syndrome. I continued having issues and my Doctors continued to look at things. One year ago, almost to the day, I was told that I have T-Cell LGL Leukemia. It's a leukemia that is associated with RA and autoimmune disease.

I was on Cytoxan for a very long time and I'm currently taking MTX. Every drug we take to treat our disease can cause lymphoma and leukemia. Was my leukemia from my medications, I'm not sure. My oncologist told me that IF I went back on Cytoxan I WOULD end up with full blown MDS and would die within 2 yrs.

My leukemia type is a non curable one and most patients live 5-8 years, IF they don't die of an INFECTION sooner. Some live 10 years, we figure I've had mine for at least 2 may 3 years now. I've been on high dose steroids for 14 years as of June 1st. Honestly I'm not sure if my drugs caused cancer or my diseases.

Either way I have it and now I forge ahead deal and with it. If I can answer any other ?'s let me know. Hope I helped somewhat. Oh, there is another member who used to be here a lot who has taken all the same drugs I did and she has a form of lymphoma. She is currently doing chemo and hopes to not need a stem cell transplant.

Hugs,
Barbara
Posted 5/20/2014 12:57 PM (GMT 0)
Wow, thank you Barbara and Bill for your replies. In 2011 I was diagnosed with MCTD and I also had 2 heart stents. I am pretty sure all the inflammatory markers for the MCTD were what alerted the Drs that I had heart blockages, I had no symptoms, went to the ER just tired. I also have had Type 1 diabetes for 43 years and other AI system complications.

I have had all the proper age appropriate screenings for cancers. I am like a lab rat. But, I was diagnosed with colon cancer last month. My dilemma is that I went on the MTX in 2011 after my 1st 'clean' colonoscopy in 2010. MTX did help with the myosotis and schleroderma, and I have been able to hike and kayak, no more horse training though. My immune system has been 'misidentifying ME' (Type1 diabetes is an AI disease) for so long I can't figure how it let a cancer get by, unless the immunosuppressant MTX contributed to this. I was actually doing pretty well.

I am recovering from the colon surgery right now.
I don't want to go back on the MTX! So I am hoping to find some alternative.

Bill, I will show the article to my Rheumatologist, thank you. I love it that you are so active now! She says I am not a candidate for remission, that stinks all the way around huh. I dont like to believe her.

Barbara, thank you for your reply, you are a warrior.
Posted 5/20/2014 3:46 PM (GMT 0)
I can't believe a Dr would say "you are not a candidate for remission"!! As far as I know, these diseases still carry a fair amount of mystery with them.

Nobody knows why my Lupus started, nor do they know why it's in remission now.

Please don't let her negative attitude affect your day to day enjoyment of life!!!
Posted 5/21/2014 3:40 AM (GMT 0)
Second what Lynnwood said. Nobody can tell if you will go into remission or not. Early and aggressive treatment increases the odds in your favor but make sure you do not stop the meds when the symptoms stop. It takes a long time for the immune system to normalize.

It is true that some cases never are controlled but many are. I remained hopeful and did everything I could and did go into remission. No guarantees I will stay there but I sure will enjoy life in the meantime....just in case.

Bill
Posted 5/21/2014 12:40 PM (GMT 0)
Thanks Lynnwood & Bill! You two are very helpful! I am off the MTX for one month because the surgeon would not do the colon cancer surgery while I was on MTX because it is such a potent immunosuppressant. That says a lot, and so,... what to do next is the dilemma.

I will see the RA Dr in a few weeks and see what options she gives me, she may refuse to be my dr if I don't take the MTX, because at that point, I won't be complying with her treatment. I have asked before and hit a dead end, I can't imagine she will have anything new to consider.

Thanks again for your time and valuable comments.
Posted 5/21/2014 1:17 PM (GMT 0)
There are other options - Imuran, Cellcept come to mind. Also Benylsta, a new treatment.
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