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Thanks guys for all your support!! I have been scared to death to start this med cause I heard fatal lung infections etc and I have COPD so it scares me. However the lupus has attacked pancreas, kidneys have cysts on liver and am having CNS symptoms so I have no choice as Immuran didn't work out for me and was sick all the time with one infection after another. My doc gave instructions to take it once per week I start on 3 (2.5mg) untill I get up to 6 pills per week and stay at 6. I increase a pill each week. He also instructed me to take 2 400micromg of folic acid each day. Labs after my 3rd dose then 2 months thereafter. At least I know theuniversal DX code for SLE lol it is 710.0 as thats what it states on my papers and lab orders.
I noticed it states may cause dizziness is this true?? Some have said you lose hair which I don't care if it works as I feel like I am dying everyday!! Do you people have skipping heart beats??
Thanks again you all may have just made me brave enough to try starting this tonight :)
By the way did you check out my designs?? http://www.cafepress.com/cathysue I know they may not look the best but I done designs myself :)
Any of you have any ideas for other designs let me know
I took MTX about 12 years ago and felt great while taking it. I had no side effects and worked full-time. I did have to come off it due to abnormal liver function tests but, I hated to come off it since I was feeling so good.
I hope this works well for you and you tolerate it well also. Keep us updated and take care. Good luck. You will be in my thoughts and prayers.
Hi! Well several years ago I started having bouts of pancreatitis for no reason I am a non-drinker etc.
Then my sugar would go very low sometimes high. Then in last few months constant gut pain bouts of either constipation or the other way. C-peptide test showed pancreas wasn't making insulin despite low sugar readings so just had an mrcp and mri that showed chronic pancreatitis and my rhuemy said it was auto-immune from the sle. i also have benign cysts on liver.
Also to all that have given me encouragement about the MTX I guess tonight is the night I will start. Im nervous but hope it works. Thanks for all your support and kindness.
Just Sunday night I ended up having blister/ bumps in roof of my mouth so I best get meds started lol
Thanks again and I hope it was helpful in regards to pancreas.
I have been taking methotrexate for about 13 years now and I haven't had any problems with it. The only time I did have a problem was when I tried to stop it. I had a lot of pain and inflammation then but I can't take NSAID's so I was in a bit of a mess.
Don't forget your folic acid though. This is most important. I take 5mg per week, two days after my methotrexate. Never take it on the same day as you take the methotrexate. Some dr's recommend different amounts of FA. I used to have 5mgs per day until about 3 years ago.
Don't know about B12 though, I have never taken it.
Thing is about side effects is that there are normally 3 categories - rare, very rare and very, very rare - for want of a better way of putting it. Again as with all medications, what affects one patient might not affect another. Of course if you have any adverse effects at all, tell your doctor. If you go ok with it, I wouldn't worry about what "might" happen. I do so hope it works for you.
Post Edited (goldenwings) : 5/10/2007 6:00:14 AM (GMT-6)