I'm new to the board and looking for help! I've had Lupus for 2 years now due to heart medication and then that turned into full blown Lupus. I have controlled the syptoms with diet and exercise but my numbers have suddenly gone up and the doctor wants me to take medicine now....Methotrexate 7.5 mg and Folic Acid 5 mg I've not started it yet and wondering if anyone else is taking this medicine for Lupus....I also have Rhemotoid Arthitis as well which the pain along with the Lupus is really bad...this doctor said the inflammation right now is dangerously high and he very concerned!
Any help would be appreciated....
Sherre, I have mixed connective tissue disease of RA and lupus, and was originally put on methotrexate, folic acid, predisone. I was taken off the predisone after five months, and frankly never thought it did a thing for me. I have since developed osteoporosis, probably as a side effect of the predisone and the methotrexate.
It took 9 months for me to feel the methorexate working, as I could feel my synovial lining being eaten up from the inside, and it was like talking to a brick wall to get a doctor to understand this creepiness inside you, and the absolute fear, anxiety and panic it brings, so my heart goes out to you. The folic acid has been great on clearing up the bleeding mouth ulcers I had for years before diagnosis.
I am going to suggest you check out www.roadback.org, which subscribes to the medical theory that we suffer from an infection, and can be treated with specific antibiotics. I have been on the minocin for exactly one month and one day, and its been miraculous.
GimpyGoGo has a thread going on over in the RA section about this, which you might want to read. Best of luck.
Thanks for the info! I took my first dose of the Methotrexate and was throwing up within 3 1/4 hours! I was up all night! I took it at 5pm and then eat dinner hoping that I could just sleep through everything! Very wrong about that! Also have a trouble headache with the upset stomach! I keep asking myself why I'm taking this? This is horrible! I have tried for 2 years to treat the Lupus and RA with diet and exercise! I am one that can handle the pain with exercising but this being sick to my stomach and a headache is horrible! Thanks for your reply....I've not been one to talk to other with Lupus but maybe this is what will help me through it! The doctors are really concerns that since my inflammation is so high now that it will effect other organs! Is it worth the side effect to be on the medicine? Again Thanks!Sherre - sorry you had such a strong initial reaction to the metho. I was already having all the side effect symptoms when I started, and actually shared a laugh with my new rheumy because it was kinda of a "what the heck" type of moment. I take metho low dose once a week and at this point have no plans to stop, even though the minocin is just flabbergasting in how fast and well it has worked on my overall sense of wellbeing and the first time in 7 years I feel I might be able to get on top of this, instead of continually spiraling downward.
It's been my observation in here that its about 50/50 on all the drugs - either you love em and can tolerate them, or you have bad reactions. I am going to continue the metho because of its long track record of proven slowing down of the erosion of the joints, and my own experience after 9 months of feeling that "eating up of my joints" stopping. Good luck and keep posting, we are all pulling for you.
I am hoping to stick with it....This morning I wake up feeling pretty good and not so sick to my stomach....Question did you have thinning or lose of your hair with this drug? I've been reading that this is one of the side effects? Also do you have any suggestion for what to eat or drink for the upset stomach..I've been drinking peppermint herb tea and that helps alittle....I also had really a bad headache right before I got sick to my stomach....I know that doctor said only 81 mg asprin is all I can take but just one for a headache.....
Thanks for your reply....It is really good to be able to chat with someone else with the same health problems. I live in a very small town and there are no support groups to this is really great! Thanks for the support!
Sherre - yes, I had thinning of hair after starting this drug combo about 13 months ago. But I am a brunette (turning grey rapidly) and have tons of hair, so it didn't really matter, but I know that blondes really have it tuff to thin out. About ten years ago my ex-husband (one of the reasons he is an ex) was poed at me because I was filling up the shower drains with my hair - well, this was obviously 10 years before diagnosis and I was having a flare of some sort and had no clue what was going on. So I think that hair thinning is both a SYMPTOM, and a MTX SIDE EFFECT (its rare to get a break in here LOL).
I have always joked I have an iron stomach, the only thing I cannot tolerate is codiene/morphine-based pain killers, and when I end up in the hospital the have to give me phenegral (sp?) to counteract. And about headaches ... I have decided my headaches are caused by inflammation in the brain/lining, whatever ... not good.
But this is what I know about what works for my stomach and that is aloe vera juice. You can buy it at Walmart in the laxative section and that brand is as good as the most expensive at a health food store. Aloe vera juice has been proven to be the only thing that can get past the stomach acids and into your lower digestive track. If you are really brave, you can buy aloe vera leaves in your produce section or grow it yourself. Be careful and cut off the rind and the thorns (!) as close as possible, because the actual gooky stuff on the inside is the purest form of aloe vera you can get. And, I also slap it straight on a painful mouth ulcer and its like novacaine for a few minutes.
Sherre, I have been very lonely myself in here having multiple autoimmune diseases, as its very difficult to explain how you move from moment to moment with whatever party your body decides to have at the moment. But my rheumy explained that in a way having a mixed connective tissue disorder is better than a full blown case of RA or lupus, etc. He said to think of it as always being on a tight rope and trying to keep your balance - I liked that and its what I try to practice.
Take care Cathy
Thanks heavens I am a brunette so maybe it won't be bad....I take food supplements also so hoping that will help! I did order some Aloe Vera I use to drink it all the time and my husband also reminded me about it help my stomach before...So that should be here by Friday and next time I have a dosage of this!
I don't have the connective tissue problem but from what I understand about it that can be terrible! I just have Lupus then the RA.....I'm not sure I can handle much more...but I alway say that and some how make it thorugh!
I had a pretty good day yesterday and didn't get sick to my stomach! YEA! Hope for another good day today!
Thanks again for the support and have a good day!
[QUOTE=sherre1955]
I'm new to the board and looking for help! I've had Lupus for 2 years now due to heart medication and then that turned into full blown Lupus. I have controlled the syptoms with diet and exercise but my numbers have suddenly gone up and the doctor wants me to take medicine now....Methotrexate 7.5 mg and Folic Acid 5 mg I've not started it yet and wondering if anyone else is taking this medicine for Lupus....I also have Rhemotoid Arthitis as well which the pain along with the Lupus is really bad...this doctor said the inflammation right now is dangerously high and he very concerned!
Any help would be appreciated....
[/QUOTE]
I am also new here. But have been taking methotrexate for about a year or so now. I take 15mg. weekly. I does make me sick to my stomach as well. Sometimes more so than others I aslo take 20mg of prednisone daily,as well as plaquenil and provigil. It took me years to finally get where i am now. Finall feel like a human again.
Has the methotrexate been helping?
Well, since my rheumy didnt do baseline xrays, we cannot follow the bone erosion, but I know that the MTX helped me. I am going to see if I can start to wean down since I was taken to higher dosages, but with the antibiotic, I am hopeful to bring down my total dosage.
The only weird thing going on with me recently is hiccups. About two weeks now, almost violent hiccups. My hubbie just told me today he has had to roust me in sleep to stop hiccuping. I am sound asleep, not even aware I was doing it, nor that he had to get me to turn over. I wonder hiccuping means? Bizarre, its always somethong. Hang in there pseymour, you will find a combo that works for you as we all are different in our disease. Good luck.
thank you for the kind words. i do have a doctor that i really like. Its really the exhaustion that gets me,and having to take medication to stay awake and function-yuck!! prednisone weight gain (about 60 pounds). any suggestions?Since you asked, I suggest:
Well, you must first of all realize I am a total heathen, born and reared on a cold alien planet known as Alaska and distrust medicine. I would suggest a series of high enema colonics to start clearing the toxins out. And start drink 5-6 glasses of room temp filtered or distilled water. Every day.
You need Vitamin D-3.
There's more, let me know. Take care ~~ Cathy
Hello. I am new to this forum, and I am so glad I found it. I have been diagnosed with Rheumatoid arthritis, Lupus, 2 years ago. Now, the Rheumatoligist says, I have inflammatory arthritis. Every time I look that up, it points to either Lupus, or Rheumatoid. Finally, I just give up, and I have to tell family, and friends, I have inflammatory arthritis, crossed over with Lupus? I have felt like I have lost my mind many times! I am on methrotrexate, and on and off prednisone, which works like magic for me, but I have to keep going off, because of the side effects. I take percoset only when it gets really bad, and I took one today. I know it is very addictive, so I only take one every other day, and then go for weeks without taking it. I did get nauseated when I first went on the methotrexate, but not anymore. I have a question. Is anyone on disabilty because of this. I have to work part time now, after working 9 years for a company, due to it being so difficult to spend all day working, even though I sit at a desk, which seems to make me ache more? Sorry to bend your ears so long, percoset make me hyper!!!!!!!
sherr1955..