Its been a miserable, painful last couple of months for me. I've been on 100mg Mino, bid and 3mg daily pred all this time now and I'm failing this protocol-big time. CRP, ESR remain extremely high. I've gone from small joint tenosynovitis, which could easily be controlled, for 6-7 months at a time with IA Kenalog, to almost all of my remaining, uninjected joints, including the big ones (knees & shoulders) so swollen and inflammed (mostly during the night and very sleep robbing) that I'm feeling pretty damned depressed. I'm very disappointed that the Mino isn't working out for me. RD tells me my disease activity level is far too high for the AP and its time to move on and start the MTX. I had arthrocentesis done on my knees and synovial analysis came back yellow and hazy with a WBC count of 6500; 81% of which were neutrophils. Classic inflammatory RA.
Anyway.....RD sends my pharmacy an Rx for the injectable MTX starting at 5mg a week and tells me, "it'll be there when you decide you need to use it". Well, its been sitting at the pharmacy for a week now, along with the Rxs for the folate and some other MTX -SE "dampers" and I'm sitting here trying to decide if I want to take the chance on being one of the statistical 30-40% of people who improve on it at all with or without toxic SE's or will I be one of the 60-70% who show no improvement and get the pneumonitis to boot. Scarey as all hell for me because I have RA-ILD (Rheumatoid lung disease). RD feels that benefit is worth the risk. They're not her lungs!
I've had scans of every bone in my body. I'm almost 2yrs in now and still have no erosions or anything even remotely close. My BDS was perfectly normal after 8 months of oral and IA pred.
What I'd like to do at this point, is drop the Mino (I gave it my best shot), inject those joints that are causing me the most pain, which will hold me for another 6 months or so and jack up the oral pred to stay on an even keel during this flare until I can taper back to lower dose.
Someone please talk to me about their own personal pros and cons on MTX. I've been studying Rheumatology text books for almost two years now and its just not the same as hearing the real deal from real people.
Thank you for the airing. I'll close the vent now.
K.
ps..I used MTX for 8 years and never had any significant side effects.(a little hair loss in the beginning) I think it helped the Rituxan do its job and now I'm very close to remisssion.
Thank you for the suggestion, Lynn. I just PM'd someone who responded to that MTX post.
I also want to thank you for the many, many medically informative postings you put up.
Medical junkie that I am, I can never get enough data.
K.
Don't tell anyone, but I read the Rheumatology texts too........
Katalina, your post interests and saddens me as I've been seriously contemplating AP therapy because I'm so afraid of the long term SEs of MTX. I have to admit it has helped me a lot and the worst SE I was getting was blisters on my face. Contrary to what my RD told me, I increased my folic acid on my own for the past week and I am happy to say my SEs have been much less this week, though not gone completely. I'd be very interested to know what else your RD gave you for SE issues besides folic acid.
I completely understand your worries about MTX. I worry about it so much myself but I also remind myself that many people here have done very well with it for several years and have no significant SEs. I'm really sorry AP didn't work for you but at least you know you gave it your best shot. How long were you on it altogether? If it's only been a couple of months, as it sounds, it may be too soon to give up on it. Easy to say when you're in pain, I know, but since you're serious about staying off MTX you might want to continue the AP a while longer while taking something else (maybe even short-term MTX) to get you over this difficult period. Good luck. I know you're dealing with a very difficult decision.
MTX put me in the hospile with bleeding uclers.I was in there for awhile. See if you Dr. can see if you can tolerate this..because I coudln't. Much love to you and hugs with prayers.Not every therapy works for everyone... you tried it, it didn't work. Lots of folks here have had great success with the more conventional treatments, including methotrexate. Best of luck with your choice!
Katalina, hello. Ok, if you have been reading the texts books you will know that MTX works for more people more of the time then any other medication, did you read the last bit? MTX works better for more people then any other medication. It is THE first line medication for a reason, it works better then anything in relation to the side effects. Why do you think so many many doctors prescribe it first? Because it works. Yes, there is like a book on the possible side effects of MTX but most of them are at chemo strenght, we are taking a less amount. Besides, many people trying to promote other medications, advertise the side effects. Please don't wait any longer, there is a sweet 2 year window you can see meet and walk through without crashing. Damage happens that you can't even see.
I admit, I made a big mistake by refusing MTX in the beginning. It took so long for me to be diagnosed that I wasted that tiny bit of space to slow this monster, this disease that I had left on the clock to slow the progress. Don't be like me.
My doctor started me instantly on Humira and starting talking MTX immediately, I dismissed that talk. Ok, I thought I read enough, that I knew enough about this monster to not need the doctor to tell me what I needed. Guess what, the doctor has seen many cases and knows how serious it can be, how the disease is progressing. I had only seen my case. Dumb me. Humira worked like a miracle but I needed more but refused the MTX. Who knows what I was waiting for, another miracle? I refused MTX through Humira, Enbrel and when they both failed and I was left with only Remicade I agreed to MTX. It is the only medication that continues to work. I wish I could take back the MTX less years but I can't-you still have time.
Now, because MTX is my only true medication friend I am on 50mg or rather 45mg almost 2cc's. I've had to lower it back to 35mg and I can feel it in my hands. My hands. You want to be able to dress yourself, open bottles AND can tomato sauce like I do. hheehehe sorry, couldn't help bragging about my home grown tomato sauce--only 10 jars so far but by October I am aiming for 150 quarts, so I need my meds.
Hope I didn't go on and on, I am a bit tipsy. Yes, I have a drink or two on MTX. Just red wine three days after I take MTX and three days before the next dose as per my doctor. They watch my liver and its fine. Hicuup.
[QUOTE=Bird Girrl]Hope I didn't go on and on, I am a bit tipsy. Yes, I have a drink or two on MTX. Just red wine three days after I take MTX and three days before the next dose as per my doctor. They watch my liver and its fine. Hicuup.
[/QUOTE]
Hope I didn't go on and on, I am a bit tipsy. Yes, I have a drink or two on MTX. Just red wine three days after I take MTX and three days before the next dose as per my doctor. They watch my liver and its fine. Hicuup.
Bird Girrl you gave me my first laugh of the morning! I was a bad girl and had a martini and a half last night and was feeling rather guilty.....
Katalina I am also a successful MTX user who was reluctant to start. I agree with Bir Girll who says it has been around for a long time and doctors prescribe it first line because it works. Best of luck to you whichever route you take. These decisions are very difficult.
Katalina - I am sorry the AP didn't work for you. I have had great success on it. The MTX caused my liver to start going bad, so I quit. You hang in there, as it seems that eventually through alot of trial and error, most of the posters seem to find the right combo that works for them. Good luck and we are all pulling for you ~~ Cathy
Katalina -
If you're still considering Mino at all, you might consider that you're on a hell of a lot for most people starting AP. You're doing the Harvard Protocol - which was what the MIRA study was based on - and that was a study that was designed to fail. The people that made it through were still helped, but some (most?) people find it hard to have faith when they hurt like hell.
Dr. Brown discovered that pulsing helped people the most. That's 200 mgs. (100 am and pm) on MWF. That gives your body time to recoup between doses. Modern APers (unlike purists such as myself) start with an even less dose and work themselves up. Those that are weaning (Pred especially) start at 50mgs. MWF if you look at the posts on the Roadback.
From what you're describing - you sound like it's working and you feel awful. That is entirely too normal of an experience. It's herxing and we joke - kill the microbe, not the patient. When I first started AP the Roadback had a lot of posts on horrendous herxes and some people seemed to wear it like a badge of honor - my herx was worse than your herx - na na na na na!
The reason other joints are reacting is because RA is a systemic disease. You have microbes there too and they're being killed too. And the reason you're herxing so bad, IMHO, is that the dose is too much for your body and your particular brand of RA.
What I'd suggest (not being a doctor yada yada) is stop the Mino for a week and reassess. I'm betting you'll feel a heck of a lot better by then. Then, switch to 100 mgs. MWF and see how you react. At that dose, (if I remember correctly you're at the 3 month herx time) you should be able to feel the Mino start to kill things (start to flare/herx after taking a second Mino late Monday) and wear off by the end of the weekend after the Mino is out of your body (late Saturday and Sunday) and start to feel better again. This is a normal cycle.
If you're under 6 months of use - what you're experiencing is entirely normal. You need to learn how to 'manage a herx' and that means just enough to kill microbes and not enough to kill you.
With no damage yet, I'd seriously consider this experiment.
However, if you decide on other meds, my hopes are with you. I just think you're about half way there, even tho it doesn't feel like it now.
Hugs,
Pip
What to Be, Martini's? ooooohhhh, good girl. ha. I promised my doctor if I stuck with only drinking the good days and it was only red wine, he would say ok. He said, besides red wine is good for you. My kind of doc. I want to confess that I skip a week of MTX when I vacation and that is when I have a martini and whatever the local concoction is.
Katalina, your doctor knows you. If you doctor is suggesting MTX I am happy that you are at least hearing what your doctor says. I have been on MTX for 4 years now with no problems and I am at a very high dose-40mg. It sucks to be at such a high dose, but MTX is the only medication that continues to work week after week after week. Do a search of MTX and you will see posts from many people on it for 10, 20 years. The insurance company will make you take MTX before allowing TNF's now, or at least most do.
Thanks for the note, I hope I didn't disappoint you.
I'm sorry the AP isn't working for you, but like all the meds, some do and some don't.
I took MTX for some time until I got autoimmune hepatitis (not the result of the MTX) and had to come off it. I am on Plaquenil and holding pretty steady for the last couple of years. Go with what your doctor thinks is right for you and if it doesn't work move on to something else.
Good Luck,
Ann
I've been on mtx for 1 1/2 yrs now, current dose at 20mg. Minimal, almost no side effects. I wasn't thrilled about starting it, but figured all meds have side effects to a degree and you have to weigh the risk against benefit - I choose benefit. Ended up having to combine mtx w/enbrel for the best result so far (knock on wood) and don't regret it. I sure would worry that not getting RA under control is going to cause you some problems later, but in the end you have to feel comfortable with the decision you make.
Best of luck - hope you feel better soon.
MTX isn't doing a bang up job for me, I just switched to injectable (in hopes it will work better) but I can't say the side effects have been too troublesome either. My bloodowork has been fine.
Personally, I would be MUCH MUCH more worried about making a habit of prednisone, and about issues related to it.
Katalina , Like you I was worried about all the side effects of MTX and I was worried about having to have frequent labwork done. I had the MTX for a few weeks before I decided to take it. I don't have RA nearly as bad as you do but thought I would be miserable as the day is long for the rest of my life. I started the MTX and within a few weeks I could tell a vast difference. Before MTX I couldn't put my hands behind my back to fasten a bra, my BF had to help me get dressed each day. I couldn't reach stuff on the top shelf because I couldn't raise my arms. My hands were always swollen and red, even when they didn't hurt so much. I cut back on my hours at work because I was so tired all the time I just couldn't go. I won't say I'm 100% now, but I'm 90%. All treatments don't work for everyone, it seems RA is as individual as we are. This is what I take..... Sulfazine, MTX, Humira. I've tried Plaquenil and Enbrel in the past without any success. Just try the MTX, if it doesn't sit well, you don't have to take it anymore. Like the commercial used to say..... try it, you'll like it!
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