I’m wondering if anyone has experience(positive or negative) w Arava or methotrexate? I’ve tried plaquinil, imuran, and cellcept without relief and was told to try one of these. Thoughts?
I’ve been all of those except for imuran but have done benlysta and now cytoxin… you’ll just have to try which ever one you’re Dr recommends first , hopefully one of them will help…so far nothing has worked for me but i have a very complicated case with severe muscular skeletal degeneration…fortunately this is a very individualized disease so it’s hard to anticipate what your out come with a drug might be from others experiences but that being said hope you have better luck than i did:)
I'm on both and Humira. I luckily haven't experienced any adverse effects. Im feeling pretty good right now.
MTX seemed to start working, but I developed three infections within first two months and had to stop taking it. Plaquenil (the safest the say) caused my hands to turn dark blue so they took me off of that. Doctor wanting to try Embrel now but not sure what to expect ...
And ensure you know it’s a very individualized disease and everybody’s different, but I’m happy to tell you my experiences. A lot of people say methotrexate is really good and it’s been around a really long time. I had a lot of stomach issues with the pill and then also try the injection and had the same experiences so it’s a no go for me. It did start to help however because of the stomach problems I had to discontinue use. Upon my research I found a lot of people said they are very tired the day after the use of methotrexate as time goes on it does help the condition. I know using Arava with plaquenil and Orencia with some improvement. I am a very difficult case haven’t been able to get out of this flair since January of this year when Dx. I have other medical conditions going on as well so hopefully you’ll have better luck best wishes. If you want more information I’d be willing to talk with you more at this point I just figured this answer was about you.
I've tried everything mentioned in this thread and nothing has worked for me....on injectible Methotrexate right now and haven't seen anything change yet. The pill form made me very nauseated and I had to stop it. I give myself weekly injections and I don't seem to get as nauseated, but it still isn't doing anything.
Each person is individual....it may work for you....prayers!
I'm on methotrexate with the plaqenil. I had trouble with Imuran. I have a lot of stomach issues but not sure which med is doing it. I also am on prednisone.
As everyone has said previously this is a very individualized. I have been on methotrexate, plaquenil, and still trying to wean off steroids. I have pericarditis and it is a tough road. The biggest problem I have had on methotrexate is nausea and headache first couple of days after dosing. I would definitely give it a try. Doctor will be monitoring your labs closely.
I was on just plaquenil for the first 6 months, which didn’t do much at all but I realize mainly wards off new/future flares and should be taken by everyone who can tolerate the side effects. I can at 200mg, but not at my weight-specific ideal dose of 300… So I take 200mg. Things kept getting worse though, till I started on the steroids (methylprednisolone, a more potent, less side-effects derivative of prednisone… Not sure why all docs aren’t using it standard!!) I was on 16mg (equiv of 20mg pred) daily for the first 3 months, but it gave me unpleasant cushingoid side-effects (the ones prednisone does, but much less of them for the same potency equivalent.)I started having muscle-wasting and extra hair growth, plus some face-rounding, but I never gained any weight (and was actually really underweight from my flares and nausea and loss of appetite, and it didn’t even reverse that! A whole year later and I’m only halfway back up to my normal/ideal weight!)The steroids at that dose were helping some, but certainly not achieving remission or even close to it!
I had tried CellCept after a month on the steroid to see if it would do more and allow tapering off the steroid… And ended up in the ER for violent nausea and vomiting the moment I got to the full expected dose. So that’s a fail… Back to waiting on the steroids till I could try my rheumie’s orig suggestion: Rituxan. It worked wonders for me, and is starting to be shown in research as one of few treatments effective for NPSLE (neuropsychiatric, the lupus flavor I got served…) Currently it’s approved for RA (all the research alway goes to them… More common disease gets more funding! Grr…)but off-label use for SLE is starting to become popular and is totally legal… Yet insurance will try not to cover it, since it’s $10k/round, which you do evey 6 months! So my odd had been writing RA in with my records leading up to it so they’d cover it. I love my rheumie! He’s even getting an award from the NorCal Lupus Foundation in Jan for research/treatment
Here’s what Rituxan has done for me:
-gotten my lupus under control, albeit not a total remission. I went from not being able to work or even be out of the house much to working part time while going to school full time.
-brought me from “unable to walk 2mi” to eager to get aerobic/cardio exercise when I have the time and my joints aren’t too sensitive.
-allowed me to taper to less than half of my original steroid does (under the threshold for side effects now, at least for the immediate term… Because of long-term issues I’m still trying to taper all the way off but can’t seem to get below 12mg every other day, aka 6mg/day, aka 7.5mg pred equiv/day.) I’ve been on the steroids a year now, but thankfully in the low-dose range for most of it!
-I’ve had 2 rounds and NO side effects after the infusion time… Extreme fatigue and flu-like feeling for 1-2 days after infusion, then nothing except an improvement in symptoms a month out from treatment that lasts for months! The issue with rituxan is risk, not side effects. There are increased risks of some serious infections: hepatitis B reactivation, tuberculosis reactivation (if you already had them, so they test for them),and PML, a severe and usually fatal brain infection caused by a fairly common silent virus (stays present without causing effects in about 50% of the population, but can be unleashed by rituxan and similar drugs if you’re really unlucky…still only about 1/10,000 get it!) Plus any other routine infections, but since Rituxan only knocks down a specific component of immunity rather than across the board, the constant small (or even significant) infections are actually less common than for the other immunosuppressives.
So, for what it’s worth… Wonder drug, if it’s right for your case. But it does take a month to see if it works, then lasts in it’s effects for 6 months-a year which you may not be comfortable with. And you are totally prohibited from pregnancy till at least a year from stopping it, since there is absolutely no data how it would affect a fetus, and is likely to cause some risks. And the main reason to be cautious: it’s a really new drug, only used for about 10 years, with many unknowns about long-term effects (though there are none anticipated to be negative, based on how it works.) But keep in mind what’s known about long-term effects of all our other drugs: certain to cause problems with all kinds of things from their inherent toxicity!
Worth asking questions about, but be aware that they usually only want to use it in cases resistant to everything else, since it is non-standard. It’s also supposed to be in combo with MTX usually, but my doc thought MTX would be unnecessary and unpleasant for me. The reason I got bumped to it right away is because he does research on this drug in NPSLE, and strongly believes it’s the most effective way to quickly resolve NPSLE flaring and prevent long-term damage to the brain. I’m very thankful for that!!!
I have tried methotrexate and it made me very nauseous. Just tried Acthar and I had terrible side effects. When I feel so bad I am willing to try almost anything that works for someone else. I am taking a "holiday" from new meds during the holidays unless an emergency arises. All the best to you, Mbaer2007
HELLO EVERYONE, I HAVE BEEN ON METHOTHREXATE AND CYTOXIN!! BOTH ARE CONSIDERED CHEMO DRUGS.
I STILL HAVE BALD SPOTS ON MY HEAD WHERE THE HAIR NEVER CAME BACK.
OH WELL, I WAS THINKING SOMEONE WOULD BE HERE TO CHAT WITH ME BUT, I GUESS I WAS WRONG.
SO, I WILL WAIT FOR A MINUTE OR 2 AND THAN IF NO ONE SHOWS I WILL LEAVE.
MICKEY AND RUSH
I WISH SOMEONE WOULD SHOW UP IN ONE CHAT ROOM AND TALK A BIT!!
MICKEY AND RUSH
OH HAS ANYONE EVER TRYTED ACTIQUE LOLLYPOPS FOR PAIN??
THEY WORK FOR LUPUS AND MS! NOW THEY ARE COVERED BY MOST INSURANCE COMPANIES.
PLEASE SOMEONE SHOW UP!!
MICKEY AND RUSH
I've tried all the meds except Arava. Cellcept seems to work well for me with few side effects. Lupus affects different parts of your body & everyone has a different response to these meds. Work with your Rheumatologist to find what is best for you. It's basically trial & error.
The only one of those drugs that I've been on is methotrexate. We started on four pills a week, and there seemed to be some improvement. I was lucky too, had no nausea with taking it. He upped me to six pills a week, and I definitely noticed a major decrease in pain frequency, intensity, and amount. I also noticed I had a clearer head, slept better, was less stiff, and wasn't getting light fevers like I had been before.