Galaxy Quest!!
I'm 51 years young.. I know how you mean, waddie!!
Love my meds!
I'm very happy with my meds (enbrel and mtx) and the results they've given me. I was diagnosed early and on the combination within 9 months of diagnosis. I believe it's that mix that is allowing me to continue working fulltime and take part in some other activities. Does it mean I'm the old me? Not at all. No matter what results I get from meds, I still have RA and it still means that I need to pick and choose where to spend my energy. I've just entered year two with RA, so probably still too early to ask if this is remission, but I feel that's where it's headed. At my last appt, I think there were only a few finger joints that she commented on.
Happy Friday!
Cathy
good CathyMN!! so glad to hear that.. you're on the same protocol as me.. I'm not working it that well .. but I'm sure glad it's working good for you.I'm curious to know what people's symptoms were when they decided their current meds were no longer working for them and they went on to something new. Were you in a huge painful flare that didn't let up or did you just not feel as well as you'd like to?
Hope it turns around soon for you Babs.
Wannabe - I wasn't in a terrible flare when we decided to add enbrel. Or, at least not a painful flare. It was more due to swelling and fatigue just not letting up. RA wasn't controlled, so the fatigue was increasing and my joints were continually inflamed, so concern about damage. My RD believes in aggressive treatment for newly diagnosed and feels that "hit it hard early" is the best approach. I didn't take her approach blindly - did some reading on my own and struggled with going to biologics too early, but in the end it was a joint decision and I'm glad I made it.
HI WTBRA free, my GP decides if I am having quality of life on my meds and that along with my bloods tells her to refer me back to my RD for more intervention, I see her weekly for schedule 8 scripts that can only be given out weekly and MTX injections, so she knows how I am, she often says she doesn;t want me to come in, she will come to me, and she doesn't do home visits, she is wonderful, so I guess in answer to your question, I am usually in a flare almost all of the time, even though I am on rituxan now, my ESR is climbing and my CRP, don't know why that would be hapening, so what next if that doesn't work, my RD says he can't get me any more govt subsidised drugs for at least 5 years. Are you having a flare? I hope not but if you are get it checked, try not to let the inflammation run rampant. Regards Janie.
When I see the doc next week, in addition to asking about upping the MTX dosage I will discuss combo dmards - a couple of the posts I've read on this thread have mentioned plaquenil and enbrel being taken with MTX.
I have to tell you about my trip for my blood test yesterday! The tech stuck the needle in my inside elbow and rooted around in there, unable to find the vein. She was doing that irritating pull it halfway out and swivel it around thing, over and over, and she said "Let me know if I am hurting you." I didn't say anything, though it didn't feel good by any means. She finally gave up and went to start over, releasing the tourniquet, but she bumped the syringe and pushed it into my arm. The needle went entirely in up to the barrel and the needle tip came out of the skin! She about dropped dead. I said, "Now, THAT hurts" and started laughing. She yanked that needle out of my arm and took off out of that cubicle like a bat out of hell, babbling about getting her supervisor and an "incident report."
It was hilarious. The supervisor managed to draw some blood and I refused to fill out an incident report. Look, it's fine, none of the holes are bleeding, probably because you were NOWHERE NEAR the vein. That tech was sure upset though.
[QUOTE=wanttobeRAfree]I'm curious to know what people's symptoms were when they decided their current meds were no longer working for them and they went on to something new. Were you in a huge painful flare that didn't let up or did you just not feel as well as you'd like to? [/QUOTE]
wantto....
I wasn't in a flare when I began enbrel.. I had been on MTX alone for 6 months and though it pulled me out of a flare.. it didn't improve on mobility, energy, and strength.. which I felt a great need for since I was barely accomplishing my own care....
Now, I'm considering something additional.. and trying to get my RD on the same page.... because the enbrel is just not quite enough...... and I want to be pushed over the edge..pushed into remission or at least no swelling and no destruction....
THANKS, CathyMN.
wow.. Bluehour.. I'm not afraid of needles either.. but that would have been bothersome.!! ick.
babs102009-03-13 06:48:19[QUOTE=wanttobeRAfree]I'm curious to know what people's symptoms were when they decided their current meds were no longer working for them and they went on to something new. Were you in a huge painful flare that didn't let up or did you just not feel as well as you'd like to? [/QUOTE]
The ultimate goal of taking these drugs is to reach clinical remission. MXT alone wasn't working well enough. I was still depended on Prednisone and pain pills to get through the day. Enbrel was added and I still couldn't taper Pred. After a year I started Remicade infusions with MXT and saw a big difference in my symptoms and actually was able to do many of the things I did before RA but my labs were still elevated and I had some inflammation and swelling, thus damage was being done. My RD and I weren't happy with just feeling better, remission was still the goal. I went back on Humira, increased MXT, and added Sulfasalazine and have been in clinical remission for almost a year and a half. My labs are normal for the first time in 12 years. I'm off Pred. and take an occassional pain pill due to damage. I was diagnosed with a severe onset of RA and it took me years to reach clinical remission. Lindy
Very helpful answers about why you felt the need to add another drug. Thank you!
Another question I have is when you talk of inflammation- do you mean visible swelling or your inflammation markers in your blood? I don't get much swelling thankfully. Usually just minor in the wrists, sides of my hand and my fingers don't look big but rings no longer fit.
Clinical remission- that's what I keep forgetting about. I have not really felt energetic since I got RA but my blood numbers were remission numbers for a good 10 months. Now they are not. Most of my pain was in my wrist/hands and only with use. I was in a flare Janie but I'm not anymore. I have increased my MTX from 15 to 20 mgs a week and my prednisone from 2 mgs to 10 mgs a day. I am very tired. I took my 2nd increased dose of MTX on Tuesday and I've been feeling pretty good. I'm reluctant to start my pred taper but the doctor does not want me on more than 5. I want off of it all together. At 10 I start getting unwanted side effects along with pain relief....
I think what I am going to do is plug along until my next appointment in April. Hopefully I will be tapered to 8 mgs pred by then. I will see what my blood tests say and see how I feel. If the blood does not say clinical remission and I still feel achy more days than not I will add the TNF blocker the doctor has been asking me to try.
I have been keeping a daily record of how I feel because it's so easy for me to pretend everything is just fine. I'm the type of person who is able to forget unpleasant things.
I'm fed up,in pain, fingers v. swollen, red lumps at main knuckles (v. stressful at work at the mo... stress doesnt help). I've been on sulpha for a year and apart from upsetting my heart (palpitations and arrithmia) its not working. My GP has written to my Rheumy suggesting I go on MTX... still waiting for the appt. to get it all sorted. I'm hoping it works.... am very fed up.
Responding more than a bit late re: change of meds. The decision to begin MTX and discontinue my previous therapy was decided after x-rays of hands/feet showed progressive erosion at many joints; pain was nearly constant and only partially alleviated by opiates; sed rate had climbed slowly but steadily over many months; both my RD and my husband urged me to consider another course.
I am not in clinical remission with multi-therapy, however my blood markers continue to stabilize and my joints show not "new" erosions I will be soon.
Currently, I am not a candidate for the biologics secondary to some ongoing renal insufficency. But, should biologics become
necessary that too can be worked around.
I _think_ that much of what takes place in treatment is based on calculated risk. Quality of life IS important.
Best wishes, Shug
[QUOTE=Bluehour]When I see the doc next week, in addition to asking about upping the MTX dosage I will discuss combo dmards - a couple of the posts I've read on this thread have mentioned plaquenil and enbrel being taken with MTX.
[/QUOTE]
When I can get face time with my RD (next appt. in April) I am going to ask about other DMARDS as well. Idk why I can not take something other than MTX since I am allergic to that.
Does anyone know do all DMARDS have something in common that could also make me have reactions?
[QUOTE=wanttobeRAfree]Very helpful answers about why you felt the need to add another drug. Thank you!
Another question I have is when you talk of inflammation- do you mean visible swelling or your inflammation markers in your blood? I don't get much swelling thankfully. Usually just minor in the wrists, sides of my hand and my fingers don't look big but rings no longer fit.
Clinical remission- that's what I keep forgetting about. I have not really felt energetic since I got RA but my blood numbers were remission numbers for a good 10 months. Now they are not. Most of my pain was in my wrist/hands and only with use. I was in a flare Janie but I'm not anymore. I have increased my MTX from 15 to 20 mgs a week and my prednisone from 2 mgs to 10 mgs a day. I am very tired. I took my 2nd increased dose of MTX on Tuesday and I've been feeling pretty good. I'm reluctant to start my pred taper but the doctor does not want me on more than 5. I want off of it all together. At 10 I start getting unwanted side effects along with pain relief....
I think what I am going to do is plug along until my next appointment in April. Hopefully I will be tapered to 8 mgs pred by then. I will see what my blood tests say and see how I feel. If the blood does not say clinical remission and I still feel achy more days than not I will add the TNF blocker the doctor has been asking me to try.
I have been keeping a daily record of how I feel because it's so easy for me to pretend everything is just fine. I'm the type of person who is able to forget unpleasant things.
[/QUOTE]
I don't have the blood markers to show one way or the other.. doesn't show activity.. doesn't show remissions.......... I go completely on pain and inflammation... my doc does his joint count.. and we get good numbers when I'm doing well.. and poor when I am poor. I wish it wasn't that way ...... I'd rather have a definitive number that says Yay or Nay!
I hope you can stop the Pred.... I know using it worries you.. and needing it bothers you too ......
Waddie, I think Arava is quite different from MTX. It was developed just for RA. And plaq. is a malaria drug, so I imagine that is different too.
I decided to start on Humira basically because my doctor said I should. Had tried MTX and Arava with little success. Basically, if I limit my physical activity, I am okay-ish. But as he put it "if I try to do anything, it hurts." Try to chew gum, jaw flare. Try to carry kids a lot, elbow and wrist flare. Try to walk around too much, even just at the mall, feet flare. Too many stairs, knees. And I had some small erosions, and, as it turns out, my CRP went from 9.8 to 10.9 while I was on Arava. I am also totally dependent on Mobic. I can skip a day without too much effect, but more than that and I am in trouble.
I almost started a separate thread--I am ECSTATIC about Mobic. Basically, I'm not sure whether I could drive without it. And on days when I have a huge limp, I wonder if I could walk without it. I would probably have to go on pred, and I'm so happy that I haven't had to.
Katie, I'm pulling for you and hope that Humira is your magic med. Are you going to take MTX with Humira? Humira works best with a DMARD. Keep us posted. When will you start
Humira? You may have told me but my memory is just that, a memory! Lindy
Bumping because I think this is a good read I haven't posted in a long time, but I wanted to share.
I've been on Plaquinel for a year...It wasn't working alone. So, RD added MTX (15mg) in Sept...I had a hard time the first few weeks with side effects, but once I got used to the drug, I was ok. But, the meds still weren't enough, so she bumped me up to 20mg. I couldn't handle that, it was just too much. In between, she gave me a pred pack to help with a flare, but I have a hard time when I just get off pred, almost like withdrawals or something, it just doesn't agree with me. But it helped me get over that hump. So, I was in "clinical remission" but I wasn't feeling well. So, I'm going to be starting Enbrel anyday now. She wants me to see a dermatologist to determine what this strange rash on my face is, before starting the Enbrel. I'm really anxious to start. Since the decision to add it, she decided to take me off the Plaquinel and reduce the MTX to 10 mg. I'm hoping that will do the trick. In the meantime, I'm in terrible shape...hands, knees and feet are awful in the morning. But, I have a great attitude, and I know the Enbrel is going to be my wonder drug! (keep your fingers crossed for me, because I can't cross mine right now, lol)
I have also made a decision to drop my little side business, and spend that extra time resting my body and taking care of things that I have been putting off. It was a tough decision, but one I had to make.
So, nice to see alot of familiar names are still here. You guys probably don't remember me, but I have to say, you guys got me through one of the toughest times in my life. Thank you.
For the newbies for babs.. who is expecting to get mega doses of VitD and will be feeling extraordinarily great!!! [QUOTE=babs10]for babs.. who is expecting to get mega doses of VitD and will be feeling extraordinarily great!!! [/QUOTE]
I'm pretty ecstatic about sunshine and vitamin D...but everybody probably already knows that
Tink
I take plaq, methtrexate, folic acid , pred (when needed) , vicodin as needed...and Florida sunshine when I can...(hint to babs)..lol
Oh yeah and I love and respect my DoctorsI like my doctors too Tink And I use Rituxan because it works.
Good thing too, because my youngest is getting married in the fall and I intend to dance the night away
edited to change the color........
Lynn492009-04-03 02:16:42I like the purple Lynne, it is festive for easter[/QUOTE]
I just like color....It brightens the day!
I love me some fish oil!
And coca-cola!!!!
I've been back on Humira and MXT for 3 weeks after my little 5 week tooth abcess episode. During the 5 weeks I was off meds I developed pain in wrists, shoulders, ankles and knee. The pain and inflammation is now gone. A few aches and pains left, but relatively pain free. I was afraid that I wouldn't go back to the same level of remission but it appears that I have. I just wanted to share the good news. Lindy[QUOTE=LinB]I've been back on Humira and MXT for 3 weeks after my little 5 week tooth abcess episode. During the 5 weeks I was off meds I developed pain in wrists, shoulders, ankles and knee. The pain and inflammation is now gone. A few aches and pains left, but relatively pain free. I was afraid that I wouldn't go back to the same level of remission but it appears that I have. I just wanted to share the good news. Lindy[/QUOTE]
I glad you're feeling better. Thanks so much for sharing, I love hearing good news!
YAY LinB........
glad you're feeling better after starting up w/ H again....
How's the trip going? are you home?
BumpMorning Babs, Yes, we're back in the states after a hellish 4 day trip. Lots of road construction headed north and we spent hours traveling on detoured dirt roads. Terrible on the RV and the cats were crazed. Funny how a 12 hour sleep can rejuvenate you. Cats are still skittish and wide-eyed. Lindy12 hour sleep..... don't I know that!! Nothing sweeter.... Glad you're back! I can't imagine a trip like that w/ cats...... Mine would be crying and carrying on the entire time..I agree that the RV life seems so wonderful!! if/when DH gets transferred to TX.. and we sell our home... I think that we may invest in an RV and rent while in TX.. (avoiding taking our one time home sale profit yet) and putting the money in an RV.. which can classify as a home! (second or vacation home even) and is tax deductible....... sounds great to me!!Snow and Babs, we sold the house, our "stuff" and took off 4 years ago and we've never looked back. When we decided to do this I was recovering from a pulmonary emboli - ugly time. This was our dream - travel fulltime and we were going to do it no matter what stood in our way. We managed to sell the house in 3 days, had an estate sale, 3 yard sales and bought the RV. Our friends and family pitched in and helped. We headed to Mexico, sunshine, beaches and paradise. I found a doctor in Mexico, had my weekly protimes done, meds adjusted and did well. If I was going to die then I'd rather die on the beach in Mexico than in the Nevada desert (where we lived at the time). I didn't die and slowly I've gotten better.
We took last year off from traveling and moved into a house. I had my knee replaced and started the new regime of meds and am now in clinical remission.
We'll be here for a month while I see my doctors then we're off to San Diego for several weeks, Texas for a few weeks, Santa Fe, White Mountains, Az., Las Vegas, St. George, Kalispel Montana, Yellowstone and then to Oregon and back to AZ. to see my docs and then off to Mexico for 6 months.
I know of several traveling nurses who have motor homes and travel between hospitals when the seasons change. Some people work; others, like us are retired, some people do what's called workcamping - they're RV park hosts. This type of life was our goal when we were working so hard. We knew that we needed as much money living this lifestyle as we need when we were in a house and we planned on it. It's worked very well for us but only because there was a lot of hard work, sweat and planning done. I highly recommend it. Lindy
LinB2009-04-04 17:09:25Lindy- you are an inspiration- ditto Sno and wish I had the guts to take risks like you....
someday... LinB......... some day.....
sounds devine to me.
It's not for everyone. It's hard if you're a nester and I am but my desire to travel won out over nesting. I cook on a 3 burner stove, have a larger refrig. than most RVs our size and we have a queen bed with tempra pedic mattress and a full size shower. Our unit isn't big compared to some but it's perfect for us. I have an island kitchen, full size sofa, two euro reclincers and a computer desk. Since we're always in a warmer climate we eat outside most of the time. We have everything here that we had in the house except guest quarters. Some day we'll settle down in a condo on a golf course but until then this is home.
I think I hijacked the post, I'm sorry. I'll PM anything else.
Lindy
perfectly said, snow....... exactlyBumping to continue the discussion.............
[QUOTE=Lynn49]Bumping to continue the discussion.............
I've not had any serious side effects, I don't get sick, haven't had any infections, the only problem I had was a little nausea after the first set of infusions.
I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy [QUOTE=justsaynoemore]I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy [/QUOTE]
how are those "other" tests going for you Cathy?
I am finding that I am so thrilled w/ my meds!! Lately I have had the best days!! I am back to almost normal as far as feeling good...... pain is very much lessened... almost gone except when/if I over do..... and, I have no swelling in feet or hands... minimal in wrists and ankles (I am not ashamed to wear shorts!!) Mental clarity is great, thank goodness, considering my clients' accountants are idiots!!
I sincerely believe that the Vit D has helped push me to this higher level of success... I am not in remission as yet since my knees and other larger joints are inflamed, but I firmly believe it's a matter of time.... and TIME, I have alot of I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy I ended up skipping pages because I don't have much time....so if I have already replied on this thread; I'm sorry.
I'm totally satisfied with my MED. (As in ONE med!) Humira. I only take Humira and I could not be happier at this point. I was on MTX with great success for many years but was taken off of it due to elevated liver test. As it turned out I have done fabulous without it so I'm now down to just one RA med. I have a prescription for Mobic; but just take that as needed and that's not often.
I take Lyrica; which does wonders for some nerve damage.....but I don't consider that an RA drug.
I've rarely understood the competition that goes on with the AP & Traditional med users. I guess everyone thinks what they are doing is the best thing and hope to convince others of the same.....but the whole thing always seems weird.
I never even open the AP thread because it doesn't interst me in the least. I suppose if I hadn't had the success I have had with tradition meds over the years it might interest me....but that's not the case.
ALSO; who said that AP doesn't help the symptoms it stops the disease? Would that be a claim to a cure? Don't be fooled by who evers telling you that. There is no cure for RA. Not yet anyway!
[QUOTE=Lovie]I ended up skipping pages because I don't have much time....so if I have already replied on this thread; I'm sorry.
I'm totally satisfied with my MED. (As in ONE med!) Humira. I only take Humira and I could not be happier at this point. I was on MTX with great success for many years but was taken off of it due to elevated liver test. As it turned out I have done fabulous without it so I'm now down to just one RA med. I have a prescription for Mobic; but just take that as needed and that's not often.
I take Lyrica; which does wonders for some nerve damage.....but I don't consider that an RA drug.
I've rarely understood the competition that goes on with the AP & Traditional med users. I guess everyone thinks what they are doing is the best thing and hope to convince others of the same.....but the whole thing always seems weird.
I never even open the AP thread because it doesn't interst me in the least. I suppose if I hadn't had the success I have had with tradition meds over the years it might interest me....but that's not the case.
ALSO; who said that AP doesn't help the symptoms it stops the disease? Would that be a claim to a cure? Don't be fooled by who evers telling you that. There is no cure for RA. Not yet anyway!
[/QUOTE]
so glad you're doing so well, Lovie.... keep it up!!
yes.. whoever said that is fooling themselves....
I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy HEY JSNM, maybe that brain or frain fog has not lifted, you just posted this post twice....I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy
I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy I guess she thinks this bothers someone?
Hiccups, eh?
I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy [QUOTE=justsaynoemore]I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy [/QUOTE]
This thread, I believe, is for people who are not on AP. So keep your success story on that thread and stop clogging this one up. Thank you.
[QUOTE=Lynn49]
Nap,
Great idea - why don't all of you start a new thread for Mtx ... let's see how many of you are happy with your treatment so we can be supportive.
For me - I post on the AP thread because I have chosen to treat the disease I have with AP & others on AP might just actually want to know if I am having problems or doing well and I am very pleased to report that after about 10 mths I am starting to have success.
Whatever method you choose to use it is worth it if you are gaining ground. Personally I don't really care what medications you use to treat your symptoms, it is your right to make your own choices, but this particular thread is about AP.
For all of you who are taking pot shots at AP and us in the process, don't you have anything better to do with your lives.....
You asked, so I'm answering.......I incredibly happy with my meds and treatment. I use Rituxan and I'm in remission. I was able to go just about 16 months in between infusions. I was also able to stop both Prednisone and MTX (which by the way, I never had any issues with)
I've not had any serious side effects, I don't get sick, haven't had any infections, the only problem I had was a little nausea after the first set of infusions.
I think I probably take less meds than most and I've had severe RA for nine years. Does that answer your questions or should I say your pot shots at my meds!
[/QUOTE]
I don't see any rule that APers cannot post about their meds. This isn't billed as an open thread for any treatment, including no treatment?
I am so happy with my meds! Antibiotic protocol has changed my life and each return visit to the doctor with no sign of disease activity is such vindication its the right drug for me. The frain bog started lifting within a week and at one year I realized my stiffness was almost gone. Its been a slow and steady, continuing upward improvement in my total health, and I am in love with minocin and AP. Big huggles to everyone and their RA drugs they love, its great how everyone is doing so well on all the drug options. Cathy Cathy -
I think you should stop. Sorry, not dissing you.
Pip
Pip.. not to diss you, but, couldn't you have made that recommendation in PM? it could be rather a touchy subject, no?
You asked, so I'm answering.......I'm incredibly happy with my meds and treatment. I use Rituxan and I'm in remission. I was able to go just about 16 months in between infusions. I was also able to stop both Prednisone and MTX (which by the way, I never had any issues with)
I've not had any serious side effects, I don't get sick, haven't had any infections, the only problem I had was a little nausea after the first set of infusions.
I think I probably take less meds than most and I've had severe RA for nine years.
I to am so happy with the results of rituxin, they are amazing. Of course I do have concerns about messing with my B cells. I also have concerns that the rituxin will just quit. When I feel this good, of course I'm going to worry. I am going to post a page about cancer and rituxin. The reason is to assure others that cancer patients use such higher doses of rituxin and much more frequent with little side effects.
Rituxin Maintainance
Total items found: 6
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Budski1279 Posts: 14
Joined: Feb 2007
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March 28, 2007 - 10:04pm
I just finished my fourth Chemo session of R-chop and after a CAT and Pet scan I was told that I was cancer free. I have two more sessions of chemo and then my Dr. wants me to do maintenance treatments of Rituxin. Has anyone had this type of regiment and how did it go?
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Lilly731 Posts: 5
Joined: Aug 2006
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March 29, 2007 - 9:51pm
Congratulations on the fantastic news!! My husband also finished Rituxan and CHOP for NHL and has started his Rituxan maintenance treatments. He goes every 3 months for 2 years for this. It is the same as the treatment he was getting but without the CHOP (chemo) part. He has had no problems at all and is working and has a very active lifestyle.
Best of luck to you!
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geo51 Posts: 12
Joined: Mar 2007
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April 1, 2007 - 12:25am
if rituxin is all you need, god bless. this is the easiest chemo on the body, and can be done as out patient. please if you dont mind, do you have insurance? does it cover rituxan, if not, any co pays? how much do you spent out of pocket. thanks, geo.
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GTOJohn Posts: 1
Joined: Mar 2007
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April 5, 2007 - 9:16am
I just finished my first maintenance rituxin and got my Pet scan results yesterday. They showed me free of any cancer. Had no problem with the rituxin at all.
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Budski1279 Posts: 14
Joined: Feb 2007
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April 5, 2007 - 3:53pm
Thank You for that info. I am just a little concerned about the long term use. I have two more chemo treatments of R-chop before the treatments of just Rituxin alone. Hopefully it keeps the beast at bay.
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dixiegirl Posts: 14
Joined: Apr 2006
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April 28, 2007 - 10:04am
I had 6 rounds of CVP+Rituxan and have been on Rituxan maintenance since. My pet scan after 4 chemo's showed no cancer, but the 2 since are showing very small uptake, but when they tried to biopsy it in December were unable to find it. So currently changed schedule of every other month to once a week for 4 weeks. Seems like the Rituxan is holding mine off from getting worse, which is a good thing. Good luck with your treatment and congratulations on the clean scan.
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djellis Posts: 1
Joined: Jan 2005
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May 1, 2007 - 12:58pm
Congratulations. My Wife has been on Rituxin Maintenance for about a year and a half now with very little problems. She goes in 1 day a week, for 4 weeks, in Feb and 1 day a week, for 4 weeks, in August for maint. She does get a little tired by the last couple of weeks, but no problems other than that. We usually go out and eat on maint days, after finishing the rituxin and then go home and have a glass of wine or two on the patio. Rituxin is a wonderfull thing.
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Bump, cause I like sharing good news...I'm really happy with my meds. I have had such great results with Enbrel. I generally feel like I did before RA hit. Occasionally, especially when it's cold and rainy, I feel a little achiness, but that's it. I'm ecstatic too! I put off trying Enbrel for about a year because it scared me. Now that I'm on it, I wonder why I waited so long.[QUOTE=LinB]Ecstatic doesn't even begin to describe how I've felt for the last 14 months.
Besides ecstatic, I feel no pain other than damage, have no inflammation, no swelling, xrays/mris of joints show no synovial fluid accumulating, ALL labs are negative, and no pain on waking. I'm considered to be in clinical remission.
The most amazing part is once I started Humira, along with an increase in MXT, and Sulfasalzine was added I was in clinical remission within 8 weeks from the start of the new med. regimen.
I've been diagnosed with severe RA with cardiac and pulmonary complications. Reaching CR may possibly save my life or at least extend it. It's taken me 5 years of working the medication ladder to achieve this level but once I found the magic combo of meds. clinical remission was achieved quickly.
I've had one sinus infection since I started Humira, an abcessed tooth and to date that's been it. Pretty good track record for a 64 year old. No side effects that I'm aware of. I can golf 18 holes, hike, walk the beach, do water exercises, and just about everything I did prior to RA. Five years ago I was using 2 canes, a wheelchair, and for several months I was bedbound. I'll take clinical remission anyway I can get it.
Don't ever give up hope. Babs, I know you're working hard on achieving CR, you'll make it. Lynn, you are an inspiration to others. Lindy
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That was one month ago. Now I'm off Humira, MXT, Sulfasalazine for the next 2 months due to multiple infections. I've been on and off meds for the last 10 weeks and so far I feel pretty good. Some inflammation and a little swelling in fingers and feet but not too bad. My labs will be back next week and I'll have the hand and wrist MRI results. So right now I'm not nearly as happy as I was a month ago. Not fure what will happen in June. I may decide to restart or stay off of them for awhile, or start Rituxin. Since Rituxin is the last drug available I'm reluctant to start it. I'll see how I'm doing in 2 months. Am going for a second opinion. Infections can happen quickly and without warning. Lindy
Sorry to hear of the difficulties, Lin.
oh LinB... I am so sorry you're having these issues...... Lin, I was so enjoying your successful CR. I sure hope this new trouble is short-lived.
CathyMarie
[QUOTE=LinB][QUOTE=LinB]Ecstatic doesn't even begin to describe how I've felt for the last 14 months.
Besides ecstatic, I feel no pain other than damage, have no inflammation, no swelling, xrays/mris of joints show no synovial fluid accumulating, ALL labs are negative, and no pain on waking. I'm considered to be in clinical remission.
The most amazing part is once I started Humira, along with an increase in MXT, and Sulfasalzine was added I was in clinical remission within 8 weeks from the start of the new med. regimen.
I've been diagnosed with severe RA with cardiac and pulmonary complications. Reaching CR may possibly save my life or at least extend it. It's taken me 5 years of working the medication ladder to achieve this level but once I found the magic combo of meds. clinical remission was achieved quickly.
I've had one sinus infection since I started Humira, an abcessed tooth and to date that's been it. Pretty good track record for a 64 year old. No side effects that I'm aware of. I can golf 18 holes, hike, walk the beach, do water exercises, and just about everything I did prior to RA. Five years ago I was using 2 canes, a wheelchair, and for several months I was bedbound. I'll take clinical remission anyway I can get it.
Don't ever give up hope. Babs, I know you're working hard on achieving CR, you'll make it. Lynn, you are an inspiration to others. Lindy
[/QUOTE]
That was one month ago. Now I'm off Humira, MXT, Sulfasalazine for the next 2 months due to multiple infections. I've been on and off meds for the last 10 weeks and so far I feel pretty good. Some inflammation and a little swelling in fingers and feet but not too bad. My labs will be back next week and I'll have the hand and wrist MRI results. So right now I'm not nearly as happy as I was a month ago. Not fure what will happen in June. I may decide to restart or stay off of them for awhile, or start Rituxin. Since Rituxin is the last drug available I'm reluctant to start it. I'll see how I'm doing in 2 months. Am going for a second opinion. Infections can happen quickly and without warning. Lindy
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Somehow, I must have missed this.........I'm really sorry to read you are struggling so. Here's hoping that you are able to get things back under contol and start feeling better soon
Thanks everyone. Each morning a new joint has joined the party and I don't like the music. Waddie, you better hum louder!!! A nice, little tune from Led Zep would be niceLin I'm so sad for you! I hadn't realized you were having such difficulty. I hope your RA stays manageable while your infections clear. I also believe staying active helps so much. Not only the joints but also the mood.
I'm also angry at my RD. I will be having a serious conversation with him next month at my appt. If we can't come to a