So I see the rheumatologist today but not the very lovely and talanted Dr. Gonzalas. Instead I am seen by Dr. Kato, straight from Japan. He spends about 25 minutes asking questions and examining. He asks if I have been taking the plaquinol. I tell him no and he really doesn't argue just writes something down. He leaves and comes back and says that everyone has signed off and that labs are all with-in my normals and so rituxin will be ordered. He leaves and comes back with Dr. Glavin, a senior U of M Rheumatologist. She runs him thru the waiver or whatever it is that I have to sign to get infusion and then, listen to this, she says that they are going to also prescribe methotrexate. I argued with her about taking mtx again. I explained to her that with the rituxin nothing else is needed. She says that the latest studies show that rituxin works best when included with methotrexate. Go figure, anyone else heard about this? Lynne? None the less, I told her to have it sent to my house for the sake of arguement altho I have no intention of starting it again. So far, they have never beat me up for not taking the meds I don't take. Anyway, Oncology head says that they are "jammed" up and that the earliest opening is a week from this coming Friday. She said that if anyone cancels or is canceled she will call me and get me right in, so I'm hoping. I hate having to be in this much pain when I know what relief feels like. Hope everyones day was good and tomorrow even better.
Lev I am shocked. All the advise you give others and you are going to against your doctors advise. Dueo therapies are what they are saying works best. Doing the trick is not the same as remission. Your joints will come in handy as time goes by. Please try to do what they asked. Seriously all of the latest findings that I have read suggest this. Some are even doing three meds at a time. I am sure Lynn will pull out some info for you. Do you not read her post? You have good doctors please let them help you. Feel better soon. What is with Oncology? Do you have cancer? What kind?Hi lev, I know you were wondering when you could get infused again. You and I and everyone else on the forum knows that combo therapy works better than single therapy. I know that you've seen Lynn's articles. Why do you think we all take multiple dmards and a biologic; because they work better together. Did you have problems with MXT when you took it before? How about going back on Plaq.? If you were doing combo therapy (Plaq. and Rituxan) then you might not be in as much pain as you are prsently. I'm just second guessing here but combo therapy is your best bet to get the most out of Rituxan. Take care and relief is just ahead. Lindy Lev, are the oncology folks the one administering your Rituxan? You scared me! Kato doesn't sound like he had very good bedside manner. I know how frustrating that can be. You just want to shake them and say, "hello! I'm a person with a condition here - not just the condition!!" I wonder if the doc suggested the MTX in addition to the Tux due to the severity of your condition? I'm guessing you had problems with the med before and if so, I can completely understand your hesitation in taking it again. For me that drug is on my "allergic" list at the pharmacy.
I hope you find relief soon and I'm sending good vibes your way.
To pain free days!
I agree, I think dual therapy is better than single therapy. Keep an open mind and do more research before absolutely closing the door on MTX. Why are you objecting to it?
Phats
Hey Lev, I am really happy you have your infusion scheduled! I sure wish it could have been sooner because I know how good that relief feels! I have been doing a load of research into combo therapy, and everything I read says better with MTX. It sure seems to be the first drug of choice in treating this disease. This is a real drag if you can't take the MTX, a fact I bemoan as often as I can. I take it you had a bad reaction?
Do tell your RDs you are not taking the drug, that way if you have problems, it will be much easier for them to be on top of things, no? And, as you know, there are alternatives to MTX (yea choices!) This sure seems to be a disease of making choices, not all of them easy to make.
Here's to you being pain free soon!
Hey! good news on the infusion... wishing too, that it was sooner....and I want to bop you on the noggin for not doing the double duty!! we KNOW playing doubles is better!! fill the MTX...... take it... set yourself up for REMISSION, man!
Best wishes for speedy and long-lasting relief!
WHERE ARE YOU, LEV......?Glad their making the rituxin available to you. I only take Humira.....but I took MTX for years and was doing really well when we stopped the MTX. I couldn't have managed without it for years. I had to stop due to liver problems; but once we got to know each other well we got along real well. I can't remember if you've taken it before and had a troubles.
Hope they get a cancelation and you get in earlier than next Friday. Good Luck!
Lev, make sure you check this article out Lynn posted.
http://www.arthritisinsight.com/forum/forum_posts.asp?TID=22304&PID=249321#249321
It's true, Lev. Research shows that any other DMARD works better with a tad of MTX also. I am on 10mg per week and have been for the last three years. My RD has changed other DMARD's but my MTX remains the same. I am surprised that they haven't had you on it with the Rituxan all along.
I have never had any big problems with MTX - a little hair loss but nothing else so it isn't an issue for me. If you get nauseated or tired from MTX, it would become an issue. I do not know your MTX history so I don't know if going on it will be difficult or not.
Listen to your medical team and your own instincts and make the decision you think is right for you.
I wish you luck.
Hi Everyone,
I guess i am just overwhelmed. My life is so simple and uncomplicated and then comes all of you with your good information and research and good intentions and I was like overloaded and started doing my own research. I had already decided on my decision. I was under the impression that lynn49 was taking only rituxin. I have taken mtx for about two years without complications. I just felt so good just on rituxin and it feels so good to get rid of any drugs possible. Generally I take my rheumy's advice and sometimes i don't but if i don't and they seem upset or are adamant then I will follow their advice completely. Probably what i will do with this situation is wait for the infusion. If the results are as quick and amazing as last time, I won't start the mtx and discuss it with the rheumies on the 22nd of next month, my next appt. If at that time they are upset or adamant, I will start the mtx. In my research today i did see that they felt that mtx added to the rituxin lengthens the amount of effective time. I certainly appreciate all of the attention but it did kind of overwhelm me there for a minute. The pain is easy to deal with since I don't have to do anything, it's a good luxury for someone with ra and like I said previously, it brings me back to reality. It allows me to feel the disease that we have and just how serious and dibilitating our disease is. What I also have been privilidged to have show back up is this fatigue. My gosh, typing is a chore. Sitting in front of this computer is a chore. Standing is a chore. I had forgotten about the fatigue. Shame on me. Thank you all very much. If there are some questions or concerns I didn't address, please feel free to ask.
LEV
Lev, it's so easy to get overwhelmed when you're flaring badly, especially when you've been doing so well. We do forget the downs of this disease. I understand that perfectly. I'm at the same point and I'm not liking it. I'm glad you gleaned some info from all of our posts, we really are here to help one another. Lindy
I agree too that it's nice not having to take the MTX. I've done surprisingly well without it; but I was in a good place when I stopped it. It's nice too not to have to worry if you want to have a glass of wine or a beer. Another added benifit of being off the MTX.
Good Luck; what ever you decide.Something that I probably didn't explain very well is that the reason I am in this position of ra pain is due to (1) a serious surgery, Hand Assisted Sigmoid Colectomy and (2) GI issues due to massive doses of antibiotics for 5 months trying to reduse the large abcess between my colon and bladder (didn't work). So these two medical problems have not allowed me to take any ra drugs and so just got the okay for the rituxin after being finally cleared of the gi issues or I would have had it approx 2 months ago. The rituxin works just amazingly for me or has in the past and am hoping for just as good results this time. And just like Lovie, I don't drink much anymore but ya never know, I've still got about 12 Heinekens in the fridge. I use to love adding a little V-8 juice to the beer and a little tobasco sauce. Any drug I can do without, I will, but in the same vein, I will take any drug needed to live a life worth living.
LEV
Hope everything goes hunky dorie for ya Lev.
No wonder you were off all of your meds and are flaring. Makes my issues insignificant. I've tried to go without MXT in the past with no luck. I hope you can do it. I'm in complete agreement if we can do without the med then we're better off. I've had several Margaritas since I've been off my meds and boy did I enjoy them. You definately deserve a Heineken. Lindy[QUOTE=levlarry]Hi Everyone,
I guess i am just overwhelmed. My life is so simple and uncomplicated and then comes all of you with your good information and research and good intentions and I was like overloaded and started doing my own research. I had already decided on my decision. I was under the impression that lynn49 was taking only rituxin. I have taken mtx for about two years without complications. I just felt so good just on rituxin and it feels so good to get rid of any drugs possible. Generally I take my rheumy's advice and sometimes i don't but if i don't and they seem upset or are adamant then I will follow their advice completely. Probably what i will do with this situation is wait for the infusion. If the results are as quick and amazing as last time, I won't start the mtx and discuss it with the rheumies on the 22nd of next month, my next appt. If at that time they are upset or adamant, I will start the mtx. In my research today i did see that they felt that mtx added to the rituxin lengthens the amount of effective time. I certainly appreciate all of the attention but it did kind of overwhelm me there for a minute. The pain is easy to deal with since I don't have to do anything, it's a good luxury for someone with ra and like I said previously, it brings me back to reality. It allows me to feel the disease that we have and just how serious and dibilitating our disease is. What I also have been privilidged to have show back up is this fatigue. My gosh, typing is a chore. Sitting in front of this computer is a chore. Standing is a chore. I had forgotten about the fatigue. Shame on me. Thank you all very much. If there are some questions or concerns I didn't address, please feel free to ask.
LEV
[/QUOTE]
You're right Lev
I'm like everyone else here. I like to take as few meds as possible, but I understand the risks involved. I didn't drop MTX until several months after the Rituxan started to kick in. My RD keeps a tight rein on these kind of things, so if it had been a problem...I would have gone right back on it.
Everybodies responses to the meds are all very unique...MTX helps Rituxan work better. Who knows, maybe somewhere down the road you'll be able to drop the MTX. It all about feeling better and getting the most out of the meds
Lynn492009-05-19 18:28:18Always pays to have good doctors. You caught the abcess before you went septic. I would say have earned a Heiniken or two lately. It gets kind of personel when someone takes are simple pleasures away. We all understand. If anyone really cared they would find something that didn't make us gain weight or keep us from an ocassional drink. Lynn,
Good to know. I have been off of the mtx for about 6-7 months now. I didn't have my regular Rheumatologoist, altho i am familiar with Dr. Glavin so I'm not too concerned about not taking the MTX. Oh, I wanted to clear up my feelings about Dr.Kato, the japanese Doctor, someone thought that I didn't like his bedside manner but i did. I found him to blike all japanese, very respectful, almost too much and found him quite fun. He sure is complete. Not only did he check all joints, even had to take my shoes and socks off, checked lungs, throat, eyes, ears, heart, colon sounds and my surgery incision. Well g'nite everyone, you really should try one of my red hot heineken.
LEV
I take both the Rituxan and MTX. There is no mention of going off the mtx anytime soon. Actually, I just had a cruddy appointment with the eye dr. I, once again, have a nasty flare up of iritis in both eyes. I think he is actually more frustrated than I am. We have a really good relationship since I see him so often and he did let a word slip when he saw the eyes through the slit lamp. He feels the Rituxan is not working-eyes were much better earlier. I go back and see him next week and he faxed a letter to the RD. So, MTX and Rituxan is the way it is for now.
I hope you find some relief with the med. I have heard great things about it.Lev, I had no idea you were having such a rough time! You have been working hard to be in a good spot and you've done it! Your are going to be fine Lev, because you are that kind of strong and you have friends here to stand up for you when you are down. Count me in.
I say enjoy the 12 before you start the infusions, kinda like a bloody Mary w/o the vodka? It sounds good enough that I may give one a try.
Lev I hope you feel better soon!
[QUOTE=levlarry]I don't drink much anymore but ya never know, I've still got about 12 Heinekens in the fridge. I use to love adding a little V-8 juice to the beer and a little tobasco sauce. Any drug I can do without, I will, but in the same vein, I will take any drug needed to live a life worth living.
Just giving you a taste of your own medicine Lev - Janie.
Hi Lev, just wanted to point out that even you do it, not just Pincushion!
Pincushion,
Here in the United States, we don't talk about our "black" godchildren or our "brown" godchildren or our mexican godchildren or our chinese godchildren or oue american indian godchildren or our ukranian godchildren or our white godchildren. Until I read your post on your "black" godchildren, I had never heard someone describe their godchildren by ethnicity or color. Must be a european thing. Show us all what you said I said and then post what you say you posted backing up that lie. That will certainly shut me up if you are being truthful. Truth trumps race cards and lies.
LEV
In the following quote, replace children with Dr and Lev, are you sure you aren't just like you say Pincushion is??????
So whats Dr Glavin Lev, I am guessing American?
[QUOTE=levlarry]So I see the rheumatologist today but not the very lovely and talanted Dr. Gonzalas. Instead I am seen by Dr. Kato, straight from Japan. He spends about 25 minutes asking questions and examining. He asks if I have been taking the plaquinol. I tell him no and he really doesn't argue just writes something down. He leaves and comes back and says that everyone has signed off and that labs are all with-in my normals and so rituxin will be ordered. He leaves and comes back with Dr. Glavin, a senior U of M Rheumatologist. She runs him thru the waiver or whatever it is that I have to sign to get infusion and then, listen to this, she says that they are going to also prescribe methotrexate. I argued with her about taking mtx again. I explained to her that with the rituxin nothing else is needed. She says that the latest studies show that rituxin works best when included with methotrexate. Go figure, anyone else heard about this? Lynne? None the less, I told her to have it sent to my house for the sake of arguement altho I have no intention of starting it again. So far, they have never beat me up for not taking the meds I don't take. Anyway, Oncology head says that they are "jammed" up and that the earliest opening is a week from this coming Friday. She said that if anyone cancels or is canceled she will call me and get me right in, so I'm hoping. I hate having to be in this much pain when I know what relief feels like. Hope everyones day was good and tomorrow even better.
LEV
[/QUOTE] Janie,
Dr. Kato is straight from Japan and will go back to Japan. The way it was explained to me is that he is like an exchange Doctor. He is not american and yes Dr. Glavin is american and I guess she will probably stay here. It was funny, I was explaining my gi problems to Dr. Kato and I refered to it as my "poop problems" and he stopped me and asked if I meant to say "bowel movement problems" and I said "No, I meant to say "poop problems" meaning "my bowel movement problems". I then asked him if it is okay if I call it my "poop problems". He puts his head almost to his knees laughing and after regaining his composure he says, "yes you can call it your "poops problems".
LEV
My ENT is from Japan. He is very kind, sweet actually. He is also comical. He is the only ENT that ever did anything for me. A very good doctor.
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