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Newbie - MCTD

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Unread 04-28-2012, 05:58 AM   #1
Cat n Potato
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Hi,

I am new here and I am glad there is a forum on autoimmune disease.

My 15 yo daughter has mixed connective tissue disorder and is taking methotrexate 20 mg once a week. We are still fairly new with this diagnosis so I need all the information or suggestions I can get as I worry sometimes that we are ignoring something important. Recently, she's been having tummy problems. She complains her tummy gurgles, is nauseous, vomited once, gets cramps and she also has wet, runny faeces (every now and then but hasn't completely resolved). Not sure if it is the Methotrexate doing this or some other disease related to her disorder. She's been to her GP both times these happened (in a space of 4 weeks) and her doctor put it down to just a tummy bug/diarrhoea. Second time though Dr ordered stool samples - no results yet. Am I worrying too much or can anyone suggest what it might/could be given you are likely more experienced/knowledgeable than me about this disorder?

Cat
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Unread 04-28-2012, 01:24 PM   #2
Teatime
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Hi Cat,
As you probably know, methotrexate is a chemo drug and, yeah, it can have those side effects. I think that some people seem to tolerate it better than others. It made me terribly sick and my rheumatologist said I had to stay on it until I just couldn't tolerate it anymore.

I hope they're giving her some form of folic acid to take? That is important and some folks say it helps with the side effects. Also, did they start her right off at 20 mg. or have you worked up to that dosage? It seems a high dosage to start. My rheum. started me lower and gradually increased. Is she taking the pills or the injections? I know there's been a shortage of the injectable mtx. but it is easier on the GI tract.

Methotrexate works best when it's used with a second drug, from what they told me. I was taking mtx. and plaquenil. Is she taking plaquenil, too? That can cause some mild GI upset.

Julia
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Originally Posted by Cat n Potato View Post
Hi,

I am new here and I am glad there is a forum on autoimmune disease.

My 15 yo daughter has mixed connective tissue disorder and is taking methotrexate 20 mg once a week. We are still fairly new with this diagnosis so I need all the information or suggestions I can get as I worry sometimes that we are ignoring something important. Recently, she's been having tummy problems. She complains her tummy gurgles, is nauseous, vomited once, gets cramps and she also has wet, runny faeces (every now and then but hasn't completely resolved). Not sure if it is the Methotrexate doing this or some other disease related to her disorder. She's been to her GP both times these happened (in a space of 4 weeks) and her doctor put it down to just a tummy bug/diarrhoea. Second time though Dr ordered stool samples - no results yet. Am I worrying too much or can anyone suggest what it might/could be given you are likely more experienced/knowledgeable than me about this disorder?

Cat
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Unread 04-29-2012, 12:57 AM   #3
Cat n Potato
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Thank you Teatime. My daughter already started on Methotrexate (pills) 20 mg per week and she takes folic acid everyday. Her specialist said when I told about the trouble she is having with it - mouth ulcers, etc - that the alternative to methotrexate is steroids and that is not a better option. She was not having gastric problems at that point. I will make sure I highlight this gastric problem next appointment (May). She started taking this drug in June 2011. Did you develop problems later on or was it bad for you from the start. Do you also have MTCD and what autoimmune disease is prevalent with you. As of now, it appears my daughter has Sjogren's.

I am very grateful for your input. It gives me some sort of direction to take and that is what I need. Hope you reach a comfortable state with your health. God bless you.

Cat
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Unread 04-29-2012, 01:02 AM   #4
Cat n Potato
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Can I also ask how much dose of Metho you take? Is it pill or injection? Worried that maybe I did not follow Dr's instructions regarding dose.
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Unread 04-29-2012, 02:42 PM   #5
Teatime
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I'm not taking mtx anymore. It was way too hard on my stomach/GI tract because I have Crohn's Disease on top of everything else, grrr. When I started on it, I did the injections but when the injectable was difficult to find, I switched to the pills.

I know I took 20 mgs. and it may have been raised to 25 mgs. at some point. It's been at least 5 years since I've taken it so I don't recall how that went. I just know that I didn't start that high -- my doctor started me on it at a much lower dosage and raised it over time.

Oh, and when I started it, my diagnosis was RA. Now we're not sure if it's Lupus with a scleroderma overlap or MCTD. I've tested positive routinely for Lupus and Sclero but didn't have the Sclero signs until the past 18 months or so.
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Unread 04-30-2012, 04:53 AM   #6
Cat n Potato
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Hi Julia,

Her doctor said she will probably have to have mtx for 2 years in total. I am worried this drug is doing her more harm than good. I will certainly ask about whether her dosage is appropriate for her given she is having problems with it. This is such a difficult disorder to become knowledgeable in as there are multiple probabilities (sclero, RA, SLE, etc). All we can hope for is to be able to learn to live with it and know the triggers that might cause an attack.

Take care of you.

Cat
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Unread 04-30-2012, 12:01 PM   #7
Teatime
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Thanks, Cat. It's so sad that your daughter has to deal with this stuff at such a young age! I hope y'all get a med. combo that works well and is easier for her to tolerate!

I'm kind of surprised she hasn't been put on Plaquenil. Usually, it's prescribed along with mtx., especially for Lupus involvement. It's inexpensive and easy to take, although it can make one gassy.
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