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marta
01-21-2011, 03:35 PM
I am writing this after a super amazing visit with my NEW rheumatologist. I can't explain in words how happy I am with the changeover. She is a wonderful human being, our visit was two hours long and she's trained at the Mayo under Dr. Specks. She is constantly communicating with them and also working on starting a vasculitis clinic in Edmonton. COOOL!!!

She told me that she is concerned about me (the first time I've heard that from my specialist) and is changing my treatment protocol. I will be getting rituximab in the not too distant future and after reading up on it a little, I have one concern. The JC virus. Have any of you that have had rituximab get tested for JCV antibodies? I know the odds are very very low, but I seem to be playing the odds game on the wrong end of the spectrum, so I want to go in taking all possible precautions.

Also, once your B-cells get eradicated and your new baby B's come back within the next year does that mean that you're now susceptible to all the things that you had previously built immunity to, essentially making you a toddler from an immune perspective?

I'm getting it done no matter what, I just want to go in informed and as prepared as possible. Thanks in advance for what I know will be a wealth of information.

Psyborg
01-22-2011, 01:41 AM
I can't really answer anything regarding RTX, but I'm so glad to hear that you got a better doctor :)

Geoff
01-22-2011, 02:23 AM
Great to hear that you have found a 'Good-un' Marta. I have found that feeling better is not always down to drugs but also coming under the spotlight of a good doctor can give you a positive buzz.
I,like you , was due to start a Rituximab session, but everything has been put on hold these last 6 weeks as results are evaluated. I wish you all the very best and will be looking out for your postings!:thumbup:

marta
01-22-2011, 03:55 AM
Thankgs Bob and Geoff, You have no idea how buzzed I am over the new doc. I came home after the visit and my mom and dad said they could see the releif on my face as soon as I walked through the door. Now to get this Weggie Bitch Kitty under control, and life will be good.

pberggren1
01-22-2011, 04:57 AM
That is awesome to hear Marta. I am so glad you got a good doc now.

DEE
01-22-2011, 05:23 AM
Great news Marta :thumbsup:

ScreaminMeanie
01-22-2011, 05:51 AM
I am so happy to hear this, and am looking forward to hearing how you do on RTX!

pberggren1
01-22-2011, 09:35 AM
Marta, could you explain to us why you are going on rtx? Are you not responding to the ctx? What is her reason for changing courses? Are you feeling OK?

ScreaminMeanie
01-22-2011, 09:37 AM
Oh, and I wanted to ask, what is the JC virus?

NicShaf
01-22-2011, 10:43 AM
I don't know a whole lot, but I read a little about the JCV and RTX before starting my own treatment. From what I read, the JC Virus can cause PML (Progressive Multifocal Leukoencephalopathy) which effects the white matter of the brain? My limited understanding is that this effects your memory.

gurinbasra
01-22-2011, 11:09 AM
Hi Marta,

Got your message, my email address is [email protected].

So, I was on cyclophosphamide for a year, first 6 months of monthly infusions followed by a big relapse, then 6 months of oral cyclo and again another major relapse. So, in March 2009 I tried Rituxan and I don't remember being too concerned about the JC virus, but all I know is that finally I had relief and was finally able to be stable on coming down to 10mg of Prednisone. I took Methotrexate at the same time which I still take, and now after spending last year trying to come off the Prednisone - 1mg per month, I was relapsing again so I've just completed my first infusion of Rituxan again and have the second one next week, and I can tell you, it is a piece of cake for me. I feel better and other than not "feeling" well for a few days after and still a little more tired than usual, I'm looking forward to trying to come off the Prednisone again.

Even with the chemo which kills all of our immune system - good and bad cells - at least the Rituxan only targets the B cells, so yes, WG is something we'll always have and we'll always have to monitor, but I haven't been as sick (which brings on the immune system, which brings on the WG), and I feel "almost normal" again, the best I've felt since I first got diagnosed.

Good luck with your treatment and if you're having it in Alberta, I hope you have some kind of coverage as Alberta hasn't approved Rituxan - I changed my Manulife coverage to 100% so they are paying the almost $10,000 as Blue Cross will not cover for it.

Keep us posted!

Gurinder

misskay
01-22-2011, 11:30 AM
I just heard from Genentech (the maker of Rituxan), and since my insurance company won't pay for it they have approved me to get the drug for 1 year at no cost. They will ship the first dose to the Dr this coming Monday! If your insurance company won't cover the drug... ask your doc about contacting them directly. The whole approval process has taken about 5 weeks... but hopefully it will be worth the wait!

gurinbasra
01-22-2011, 01:04 PM
LaRoche is the Canadian company, but I think you have to have a low income to qualify for some kind of coverage.

marta
01-22-2011, 02:27 PM
Miskey, that's so cool. I just read that on Facebook too. I'm super happy for you. I think I'll have no problem getting it done.

Gurinder, that's great to hear. I can't wait to feel good again. Haven't felt that since September.

Phil, she is worried because things aren't getting better. My ESR is still in the high 40's my CRP is still in the high 20's my LFT's are better, but she thinks I should be responding better to treatment and I'm not. Like I said earlier, it's the first time I've heard my specialist say she's 'concerned about me', and it was such a relief to hear that. I listed off my symptoms too and she defintely doesn't think that I should be feeling this way after this long on cytox - more than 9 months now.

PML sounds like a nasty thing that you can't recover from and is activated by the JC virus (named after the patient who's brain was autopsied and they got the sample from for the first time). Apparently the latent virus can be reactivated by rituximab and the process of killing off the B-cells. It's a common virus with antibodies found in a significant part (70-90%) of the population (a gastrointestinal and/or tonsils virus that is quite inocuous) but can cause a whole lot of trouble in the immunosupressed. It's small enough to travel through the blood brain barier and once in the brain attacks the white matter. Only one person has survived this in 2010. Before him/her no one survived for more than one year.

I know I sound like a bit of a panicer, but like I said, I've been playing the wrong odds lately, so wanting to go in prepared. But if so many of you have had it and no doctor has shown any concern or hasn't tested you for the virus, then I guess I'm over-reacting a little. Just a little. ha ha.

Thanks so much for all your input.

Gurinder I'm sending it off to you pronto.

pberggren1
01-22-2011, 03:19 PM
Thanks Marta for the extra info. This puts my mind at ease.

Sangye
01-22-2011, 03:26 PM
Marta, SO happy about your new doc and you getting rtx. PML is a very serious, typically fatal condition but is very rare. It can occur with anyone who's immune-compromised and is a risk with all our immunosuppressants. Both rtx and cellcept carry the warning specifically. Both of them target B cells, unlike our other drugs.

When Dr Seo put me on it he said it was a very low risk and not to be concerned-- learn the signs/symptoms and put it out of your mind. There are tons more complications that are much more likely to happen than PML. That's my sick way of looking on the bright side. LOL :rolleyes1:

Palmyra
01-24-2011, 02:33 AM
Hi Marta,
Very glad to hear of your good experience with your new doc! It is an amazing relief when one finds a professional that inspires confidence. You bring up two important questions regarding use of Rituximab. First regarding PML: My daughter sees Ulrich Specks at Mayo...my understanding of PML (which is coming from my limited brain,) is that it can occur with any significant immunosuppression. It is more common with oncology based medicine, as the immunosuppression there is more profound. So it is a bad thing, but appears to be related to the level of suppression, not simply one drug vs others. Rituxin is less generally suppressive than cytoxin, so I don't know if that translates...Dr Specks indicated that PML (rarely) occurs with many drugs, especially drug combinations (ie, cytoxin, rituxin plus others...like my brother is on for tx'ment of leukemia).

Second good question you bring up is regarding B cell repopulation after suppression. I learned after my daughter's first infusion, that 'peripheral' B cells can hide, and not all be affected by Rtx (which may explain some continued joint discomfort she experienced after treatment). I just read an article that was about Rituxin and treatment of lupus.

Phenotypic Changes of Lymphocytes in Patients with... [J Rheumatol. 2010] - PubMed result (http://www.ncbi.nlm.nih.gov/pubmed/21159836)

It partially discusses your original question that explored maturity and memory of those depleted and repopulating 'naive' B cells and the subsequent effect on immunity (the folks with lupus relapse). More interestingly, it is an attempt to address my old question of how long can this particular treatment last, and what happens when those 'new' B cells re-emerge.

Sangye
01-24-2011, 02:48 AM
Excellent info, Palmyra. I've actually been unwilling to ask Dr Seo some of those questions, like immunity memory and what happens when B cells re-emerge. I don't think I could stand to hear that my entire immunity memory is gone, even though I suspect that's the case. And it seems to be a roll of the dice regarding what happens when B cells return--some people stay in remission anyway and some require re-treatment. The biologist in me wants these answers, but the person with Wegs who is trying to survive the moment has her hands over her ears. :blink:

ScreaminMeanie
01-24-2011, 03:12 AM
Oh boy, I know how you feel, Sangye! My background is in microbiology, and this stuff is fascinating to me. However, as someone who has Rituximab as a fall-back position waiting in the wings, I really don't want to know that much about it. LOL

marta
01-25-2011, 04:51 AM
Thanks for the link Palmyra. It's good to know this stuff in my overactive little brain. This is all helpfull info from everyone and also sets my mind at ease. Thanks! Muchas muchas thanks!!!!

patricia
01-28-2011, 06:46 AM
Hi my name is patricia, I have had WG for 11yrs now. And yes to your question about rituxin, this is my 7th yr doing the treatment i do it only 2times a year. Two weeks apart then im good until the next yrear. And yes you are susceptible to everything so be really careful out there. And I dont know about the JCV- but I will ask my rheumy when I see him next month to schedule for my Rituxin treatment in march. Im glad that you finally found out what was happening with you. Good Luck :)

elephant
01-28-2011, 07:18 AM
Glad to hear that keeps you in remission Patricia, do you take any other medicines for WG? Any side effects?

Sangye
01-28-2011, 07:43 AM
Hi Patricia, nice to meet you. You said you do rtx twice a year. You mean 2 infusions once a year? If so, that's really good that it keeps you in remission. What kinds of involvement have you had?

gurinbasra
01-28-2011, 08:05 AM
Hi Patricia,

Wow I think your the only person I know who's had this drug the longest - maybe you were one of the first.

Does your dr do any tests prior to giving you the Rituxan or do you just take it

Sangye
01-28-2011, 08:07 AM
I have the same questions. Also, why do they keep re-treating you? What I mean is, do you start to have symptoms of active disease as the rtx wears off, or are they doing it "just in case?"

pwc51
01-28-2011, 10:52 AM
Hi Patricia - Another question to add to those above! Having had the Rituximab, what other meds are you on in the interim?

Palmyra
01-28-2011, 01:03 PM
Yes, I am anxious for answers to all of the above....glad to have you with us Patricia

Brooke
01-29-2011, 01:20 AM
I have a question regarding the JC Virus or develping PML, does it make you more susceptible to get it the more "rounds" of Rituxan or can anybody get it at any time after Rituxan? Can you get it from Cytoxin as well?

leahrubyred
01-29-2011, 03:01 AM
MARTA GOOD TO HEAR, I AS WELL HAD AN AMZING EXPIERIENCE WITH A new ruem. good luck and thinking of you.

Sangye
01-29-2011, 12:15 PM
I have a question regarding the JC Virus or develping PML, does it make you more susceptible to get it the more "rounds" of Rituxan or can anybody get it at any time after Rituxan? Can you get it from Cytoxin as well?
PML can occur with anyone who is immune-compromised. Repeated rounds of rtx means you'd be immune-compromised for a longer period of time, which raises the odds of activating the virus. Same with any of our drugs. However, I've only seen the specific warnings for PML on cellcept and rtx. It might be because they're newer and name-brand drugs. Good question for a Wegs doc!

jola57
01-29-2011, 05:11 PM
Hello Patricia, good to hear about success. keep well