Methotrexate, really needed?
Hi, i've just got back from another pointless visit to the rheumatology doctor, and thought i'd ask some questions here ready for my next visit.
I'm a 20yr old male, so a rather unusual patient. In 2006 is when I first started having problems, I came down with Pericarditis (inflammation of the lining of the heart) whilst staying in Paris which was treated simply with anti-biotics and a high dose of aspirin. After that I was fine for months, until I came down with Pericarditis again and this time much worse. I was on the CCU ward in my local city hospital (in the UK) for 5 days during which time I was severely ill. I had echo's, CT scans everything done all in one night when i was at my worst, and they found effusions on my chest and around my stomach. At the weekend doctors pumped me full of antibiotics and other drugs trying to calm things down. The consultant finally saw me on monday morning and put me on a high dose of prednisilone which very quickly turned everything around. Since that week which was in Jan 07 i've only just gotten back to normal, with several other episodes of Pericarditis along the way, i've now been off the steroids for 6 weeks and am aswell as i've been in what feels like a lifetime (really only about a year).
After the doctors couldn't explain why this kept happening they finally found i tested positive for ANA and directed me to rheumatology. I'm currently taking methotrexate 20mg by injection (couldn't stomach the pills). The trouble is the side-effects of this drug are horrible and for 2-3 days of each week i feel nasty and naucious. What I want to know is, are there any good alternatives to this, and is just a positive ANA enough to be taking such a nasty drug?
Also are there any people that have tried herbal or chinese herbal medicines? Since both me and my father have been saved major surgery in the past by seeing a good herbalist, i'm very interested in looking into it (plus it's much nicer on the old liver!).
Same story here, recurrent pericarditis....mine over a 2 year period. Seem to be when I lowered my prednisone each time. Then, heard about colchicine, a drug used for gout, was helpful for recurrent pericarditis. I am also on Methotrexate (20mg) I take folic acid daily which I have heard helps with metho sides. I havent really had much problem with metho. maybe because I have been taking the folic acid?......I have been on the colchicine for a year now, will continue for another.
I caution you about herbal remedies....I have a friend who is Chinese, barely speaks english, has LUPUS. Her family had been making up herbs for her.....she thought she was doing ok, but landed in the hospital with very serious kidney and organ failure. It was almost fatal. She doesnt take them anymore and has been much better since.
good luck, Kb.
So you take 7 folic acid tablets a week, even on the same day as the metho?
Am I reading that right, you are taking both colchicine and methotrexate? I am on just the metho with a few folic acid tablets a week and have been successful in stopping my prednisone for 6+ weeks now, although i'm eager to get the dose lowered from 20mg soon down to a maintenance dose.
Argh, I just don't know what to do. I hate to think that I'm putting up with this toxic/metallic taste in my mouth and throat which is so nauseating (as well as other side effects) for nothing, and it actually having nothing to do with the methotrexate that i've been well for so long.
Yup, I take Folic everyday. Metho 20mg weekly, colchicine 2 x daily, prednisone 9.5 daily(Yahh!! havent been this low in about a year!!!) and Protonix 40mg daily, Boniva monthly, and suppose to take calcium daily.
So, I started folic about 4 years ago when I had hemolytic anemia, and just continued to take it.
Do you have acid reflux? Could that be causing the yucky metal taste?
I have to stay on the Methotrexate long enough to get lower and eventually off the pred.
Is your pericarditis recurrent?
I am taking all this lowering medication stuff slow, I started my lupus diagnosis with a 9 day hospital stay with some very serious symptoms. I have been thinking lately that I feel really good. I hope it doesnt change when the meds are lowered.
WOW! Thats a lot of stuff to be taking all at once! I've been in hospital 3 times this year with pericarditis so yeah I guess you could say its recurrent. Although this is the longest time i've been without needing to take any prednisone which seems to stop pericarditis within 2-3 days of starting it.
Not sure about the acid reflux, I take my metho by injection since i felt so naucious when taking the tablets, but still i don't feel to good with it for at least 3 days afterwards. Infact i'm just getting over taking it when I have to take the next damn dose! It drives me crazy.
How are your side effects with all those drugs? When i'd been on prednisone for a long-ish period of time they started to make my stomach really sore, which the doctors didnt care about so i went to a herbalist for that (although you have to make sure they don't give you anything to boost your immune system), she was quite good, and although it took a while to work I did feel quite a bit better while taking the herbs (plus no nasty side effects).