View Full Version : Regarding the Rituxan warning

01-03-2007, 07:41 PM
Hi Everyone
I saw my rheumy today. We chatted about the Rituxan PML scare. He feels that 1 - there will be alot more data to look at on it in a couple of months. 2 - PML happens in inviduals with other big immunosuppressive meds/illnesses. So is what he is saying is that those 2 individuals may have contracted PML even without Rituxan use? Thats how I took it. But he's obviously not taking it lighly and he's not sure he considered my treatment a success anyway.
As of today my ana and complements and all that other stuff are still raging many off the scale so to speak. And I require a lot of prednisone daily and I still have severe symptoms. My doctor saidhe hasn't had too many cases of lupus that 20mg of pred couldn't knock out and make the patient feel alot better - the issue is whether that can be done without pred for a patient. He said with me we don't really get either benefit - still need quite alot and still lots of syptoms. Oh well sorry to rant but Iguess I am kind of proud that I have made it though the past few years in a bad flare. Hopefully no where to go but up?
PS he mentioned another biologic something like Arencia or Orencia? Anyone have any ideas? He said these may not be as far away as it seems. (he is a positive guy though)
hope everyone is having a good 2007 so far. I think it will be a better year for many of us.

01-03-2007, 08:29 PM
I wonder how many lupus patients with severe disease he has treated - I would be thrilled to get down to twenty of prednisone - my "maintenance" dose is 25-30 mgs. daily and during a severe flare it goes up to 120-180 in divided doses daily. That's on top of IV solumedrol and cytoxan once a month and a dozen other misc. meds. My doctor doesn't bother re-testing my ANA anymore- it's always in the five digits and according to him ANA levels don't correlate with severity of disease, so he's generally more interested in the complement levels, sed rate and c-reactive protein. Your doctor is right that PML has occurred in other lupus patients who weren't treated with rituxan but had used other chemotherapy drugs, including cytoxan. PML occurs in about 5% of AIDS patients, but hasn't been seen that much in other patient groups except people on chemotherpay drugs. So it's still considered a rare complication. But only about 10,000 lupus patients have been treated with Rituxan so far, so I think the concern is more cases may show up as the drug is more widely used. I gathered from what I read about the two patients that they had not been treated with other cytotoxic drugs, which is why the deaths were linked to the Rituxan, And Rituxan is definitely linked to the cases of PML in the lymphoma patients.

Orencia (abatacept) is already available for treatment of moderate to severe rheumatoid arthritis and it is in Phase II development for lupus. So there is still a lot of testing ahead before they know if it will help lupus patients. It's a selective t-cell modulator so it can also cause severe immunosuppression. And since t-cell activation is only part of the picture with lupus, it might not help everyone with lupus. It has also been linked to the development of several types of cancer. So it will probably have about the same potential side effects as Rituxan, even though it is a slightly different class of drug. And right now it's very expensive, because it requires a initial dose of three separate infusions within the first four week period, then every four weeks thereafter. It doesn't have any cumulative or long-lasting benefit, so you have to take it every month to keep from relapsing. So hopefully they will find a way to make the benefits last longer without all the side effects.

01-04-2007, 12:57 PM
Hi Marycain
Well 25-30 pred was my maintenance dose until this fall. (so it is possible - I NEVER would have believed it a year ago) Now I am at about 12.5 since the rituxan. I find things in general alot better even on this dose of pred. Alot of heavy afternoon fatigue I think for me was related to higher doses of pred. I think my case is the worst or one of the worst cases my doctor has dealt with. (my doc doesn't think the ANA number means much either) In the sense that I have failed to respond to most conventional lupus therapies. He thinks I failed rituxan too. The only good thing is they funded my rituxan treatment maybe on compassionate grounds since nothing else has worked. ANyhow, that being said I know things can get alot worse so I am thankful for what I have and try not to be too resentful about the missing parts.
As far as risky meds go, I have always been pretty anxious to try anything regardless of side effects - but as I mature a bit more I realize that its not all about me....(kids are #1).
ANother quick question.....how do you manage with the 4 boys? Do you have some help? I know you work as well, so you likely do. I don't work although I wish I could as its always been important to me. I have been home with the kids for 5 years now and sick for 3 1/2 - with full time help. Its left me personally feeling pretty helpless / aimless and the past month I have been on my own with the kids. I am enjoying it alot but nervous that when I hit another bad patch that I won't be able to hold things together. Anyhow, just a bit of a ramble. I am curious how others deal with the family aspect.
thanks for listening

01-04-2007, 01:50 PM
I'm super lucky that the office where I work had its own child care - when the boys were little, they went to work with me in the AM and stayed in on-site day care, I would eat lunch with them, go back to work in the afternoon, then we would all go home together. The fees were extremely reasonable because it's considered an employee benefit - where I work is predominantly Catholic, everyone has kids, and it's very family oriented. Now they are school age, my cousin picks them up from school on days when I work and takes them to afterschool activities - her kids are roughly the same age and in the same activitites, so it works out well, and they go to an afterschool program on days when they don't have sports. Thankfully I work a lot from home, and I have a BIG family, siblings, nieces, nephews, cousins, etc. so the boys always have someone to take them to games and do the outdoorsy stuff. Michael does a lot, but his job is so unpredictable that he's sometimes gone for weeks, but I have plenty of back-up. And the boys are pretty easy going at home - they have a big playroom that I let them arrange as they please, so the mess doesn't spill over into the house. I painted the walls with chalkboard paint, so they can draw all they want, and I covered the floor with all different colors of carpet sample squares, cheap, colorful, and if something gets spilled its's easy to take up one square and put down another. They have a big table for their trains and model cars and a "cave" underneath the table where they like to hide. So they pretty much entertain themselves - I just have to provide food and snacks at regular intervals, and provide help with homework. I grew up in a family of ten kids, seven of them boys, so four boys doesn't seem that much work. Plus I ran a day-care center during my college years, so I'm used to controlled chaos! :D It will get a lot harder when the oldest two start a different school next year - we're still working on figuring all that out,

01-04-2007, 06:42 PM
thanks for sharing - sounds fabulous and heavenly for your boys. We have a big family here as well but I am always hesitant to let people do things but I guess I should relax a bit and know that I would (will) when I can. That daycare sounds fantastic as well. There is a new local montessori school opening that I am thinking about for the boys part time as getting out of the house would be good. Also, our house is not great as a family house - we are looking to move as its just not that comfortable here at home - (I didn't know we would be spending as much time here when we bought it...) This house has a weird feel and I got sick right after we moved in so I know its crazy but I wonder if something here aggravates things. Also I have alot of time on my hands to think these thoughts......Lots to do/change in 2007!
thanks again

01-04-2007, 07:12 PM
Oh, I definitely think some houses just give off "bad vibes" that could make you feel worse, plus a lot of the new houses have such tight insulation that the air doesn't circulate, which is awful for people with whacked-out immune systems - like sick building syndrome on a smaller scale. We ended up selling our first house - I loved it but it just wasn't practical after I got sick, and we needed the money for medical bills. But this house has the advantage of being all on one level - no steps - and close to all my family. But when we first moved in, I was sick all the time, because the house had wall to wall carpeting which just held dust and germs in. Once we got rid of the carpeting and put air purifiers with antibacterial filters in the bedrooms, I felt a lot better and so did the boys. I think their playroom was probably intended to be a formal living room, but we already had a family room, and we're not "formal" people. Since it was a big room and there are four of them, turning it into a playroom for them seemed like the best use of the space. And when people visit, I can just shut the door and hide the toys! :)

01-05-2007, 01:10 PM
I am so "with you" on the carpet issue. I saw a speacial on Discovery that used high powered cameras to show exactly what was in our carpets (oh my, that was truly scary!). And no amount of carpet cleaning etc. killed these little infestations. Every day, we walk more and more of them into our carpets when we come in from outside. Anyway, this program showed these nasty little creatures close up and them zoomed out to show a small baby crawling on the carpet. The house was emaculate and I am sure that the family kept that carpet clean..but still, the creatures where there in abundance!
The program stated the same thing as you, that many respiratory illnesses linger due to the dirt, germs and infestations in our carpets. I am having the most difficult time convincing my husband to remove our carpets. He swears that the house will be too cold without them! I disagree! We did put hardwood floors in our family room with a large area rug and it is no colder that it was with carpets. So, I have some of the battle won!!
My goal....a carpet-free home with area rugs that can be taken out and cleaned thoroughly or just thrown away and replaced!!!

Peace and Blessings

01-05-2007, 01:56 PM
Yes, it's pretty scary to thank about - right now the only carpeted area in the house is the little squares in the playroom and I steam clean them, but I'm seriously considering taking them out too - now that the kids are older, I'm not as worried about them ruining the laminate floors we have in the rest of the house. (They are like hardwood but require less care). Because of my wheelchair, rugs aren't very practical, but I have painted and stenciled the floors in a couple of rooms, and have painted canvas floorcloths in several others. If you're the least bit crafty, floorcloths are wonderful - you can buy the pre-primed canvases in many sizes (including rounds and ovals) in most craft stores - you can paint the cloths with any designs or colors you choose, then seal with several coats of varnish or lacquer - they will last for years and can be cleaned with a damp cloth or mop. They keep the floors nice and warm, but don't collect dust or germs. You can buy already painted floorcloths in some of the trendy decorator catalogs, but it's cheaper to make your own, and a fun kid project too. And if anyone in your family is artistic, they can probably create some beautiful designs and patterns.

01-05-2007, 04:21 PM
Those of you with young kids amaze me! I was diagnosed just 8 (or is it 9?) months ago. I'm 56 years old and my 'kids' are in their 30's and long since on their own! I can't imagine what it would have been like taking care of my rambunctious boys if I had been living with lupus. You all deserve some kind of award for how you manage. Your creativity alone is inspirational! My 'boys' are very good at helping me out, thank God (and I include my husband as one of the 'boys!') I've got it easy! :)

01-06-2007, 09:30 AM
I think it was actually easier when they were little - although they needed a lot more attention, there weren't as many outside things to contend with. Growing up in a big family, I'd spent my entire life around babies, so I was comfortable taking care of them, and I think that makes a big difference. Otherwise, I think it would have been overwhelming when I had the twins. Michael was just too funny - he had never even held a baby and he was terrified of dropping one. And the first time he had to change a diaper, oh, my! To his credit he managed to get through it without throwing up, but it was a close call. He's an old hand at diapering and feeding now, but the first few weeks were definitely a learning experience for him. I think as the boys get older, parenting gets easier for him and harder for me. He's thrilled they want to play football - I worry they will get hurt. I'm just glad they aren't old enough to drive yet, I'm not ready for that!

01-07-2007, 06:01 AM
Marycain, driving is just the tip of the iceberg..just wait!! What's so interesting to me as my boys age is that I never quit mothering them. One son is doing well professionally but struggles in his relationships - I worry that he's lonely. The other son is financially struggling and recently divorced - I worry that he'll never get back on track with his life. Sleepless nights just come with mothering. When they're little, they need to be fed at night. When they get older you lay awake waiting for them to come home ('specially when they're driving!) When they're out of the house you lay awake worrying about what isn't right in their lives. No wonder we're tired! :)

01-07-2007, 10:39 AM
On the carpet issue -

Saysusie, tell your husband to just say yes to slippers! I think they are the world's best invention ever! I have a lot of carpet in my house, but I still cannot seem to imagine why I would ever walk around without my fuzzy, warm, comfy slippers on!

01-07-2007, 05:21 PM
Luckily Kentucky has a strict "graduated" driving system - they can't apply for a permit until age 16, asnd then they need parental permission and a passing average in school - kids who drop out or have failing grades can't even apply. They have to pass the written and vision tests to get a permit. They have to hold the permit for at least 180 days before they apply for a license, and they have to complete sixty hours of supervised practice driving (documented by parent or guardian). Permit drivers have to have a licensed driver over 21 in the car at all times, aren't allowed to drive between midnight and 6:00 a.m., or have more than 1 person under age 21 in the car with them unless the other person is a family member. Any kind of moving violation starts the 180 day period again, and a DUI stop means the whole process stops and they have to wait till age 18 to apply. Same thing if they drop out of school. After the 180 days, they take a road skills test to get an "intermediate" license. Once they have an intermediate license they have to take a driver's education course through the state police or the schools. They still can't drive between midnight and 6:00 a.m., or have more than 1 unrelated person under 21 in the car, and if they get a moving violation they have to go back to the permit stage and start over. There's a zero tolerance for DUI under age 21, so it's an automatic license suspension. If they manage to get through all this, they take a final test at age 18 to get an unrestricted driving license. So maybe by the time they are old enough to be out past midnight, they'll be away in college :)

01-08-2007, 04:30 PM
Oh, man! I LOVE the Kentucky way of letting kids drive :) I bet your death rate is way less than the rest of the country for underage accidents!