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Thread: Coronavirus and GPA

  1. #81
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by Pete View Post
    Itís too pricey to hoard at upwards of $20,000 per dose...
    Pete, not to go off topic (although we'd all love to get away from the Wu Flu, even for a second): have you been keeping track of the RTX biosimilars? Apparently Ruxience got FDA Approval for GPA, but not RA. Interesting development. Apparently there is a another biosimilar called Truxima that cratered EU sales of RTX. I guess that's why Genetech agreed to cover all of my out of pocket RTX costs (those not covered by insurance): they want to get all they can from the RTX golden goose before the generics crash the North American market.

    Have you're good pals at the Cleveland Clinic explored the usage of any of these biosimilars?

    Friends: Have any of our Weggies in the EU received a Truxima infusion?

    https://www.biospace.com/article/fda...gen-s-rituxan/

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  3. #82
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    Default Re: Coronavirus and GPA

    I'm not due for another dose of rtx until September/October. I'll ask about the biosimilars (and other possibilities) then.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  5. #83
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    Default Re: Coronavirus and GPA

    I just got off the phone with my infectious disease doctor and wanted to share a little of what I learned. I am a candidate for IVIG therapy based on my low antibodies (because of Rituxan) but she thought the risk of going in for the treatment did not out weigh the benefit- at this point. She said as the pandemic eases up it might make sense for me to get it plus, there might be available antibody therapy that has antibodies to COVID.

    I also asked when I will likely be able to go out in public (as a high risk patient) . She didn't think it likely to be sooner than a couple of months - maybe longer. She didn't have a solid answer to that question. She told me several times that avoiding contact was the number one line of defense for me.

    I asked about N95 mask- do I need one? She said she thought it really wasn't necessary and that she herself uses just a regular surgical mask and a face shield when doing procedures. She was having trouble finding masks even for her OWN family.

    I am to continue inhaled Tobramycin therapy for lung infection that I had a few months ago as a preventive measure. I do inhalations twice a day for one month and then one month off.

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  7. #84
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    Default Re: Coronavirus and GPA

    Good to hear from you, Kirk. Not even to the grocery store with mask and other precautions? I guess not. I'm sorry you are so vulnerable.

    I have a bunch of N95 masks. They are a few years old but still seem OK. They've been stored in a box they came in, under kitchen sink, don't seem dusty or moldy. If you wanted one I could send it by mail. Anyone else, too. Disclaimer is it's the basic kind without the vent, so glasses can fog up. Not sure if they are available in stores, also your doc's advice is good, I'm sure. But I do have about 20 of them.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  9. #85
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    Default Re: Coronavirus and GPA

    Hi Anne,

    Thanks for the mask offer. I may later take you up on that but for now I think I'm doing ok. I DO go once a week (or longer) for food and just take extra careful care with mask and loads of sanitizer and careful procedure when I get home. I realized recently I was not being careful enough about my SHOES. Don't wanna track in some bugs. I can keep them outside.
    Not perfect but we all have to find a level we are comfortable with.

    I heard that the masks have an expiration date that probably refers to the rubber on them . The filter itself does not really expire. The rubber gets rated so that a health care worker doesn't have it fall apart during a procedure or something. For the average person (or below average) it probably doesn't matter much.

    Weeks and weeks of isolation is really going to get tough for some folks. I feel for them. I'm fairly lucky not to have grand kids or others that might want to see me.

    It will get to be more of a burden with my work as time goes on. I don't need to tell you about that- your work is VERY affected by this.

    I keep thinking about how some businesses might adapt by having a drive through. If you had a road side business with drive through I think some people would use it just to help out someone trying to adapt to the quarantine. I know I myself have tried to support some businesses that I know are being hurt by this. There is a convenience store down the road from me with a gas pump. I won't use the store but I now buy gas from him from time to time. I know he is losing a lot of business in the store and a couple extra gas sales might help.

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  11. #86
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    Default Re: Coronavirus and GPA

    Well, Kirk, if you are out and about and make it this far, I will give you a couple of masks. And I'm fine on firewood, in case you wondered. Still a bit chilly when the sun goes behind the hill.
    We Market crafters have set up a private Facebook group, including farmers and staff, where we can network about how to apply for help, establishing online sales accounts, etc. Or just to air our feelings, as long as we don't get too negative, and let each other know if we need help with anything or can offer any. It's a great thing, and could also work among neighbors, friends, church groups, etc., anywhere in the country or world.
    Interesting idea about a roadside stand. It would be a little weird here given the nature of my road and wildly unmaintained yard. But it is something to think about, for sure. In fact, with my circular driveway, a drive through deal could work. I'm not ready to do it, but if anyone approaches me, I can sell out the back of my SUV, where my pots are still in boxes. With social distancing, of course.
    Well, I know you will keep on top of your health, and stay safe. I hope you will be able to work again in a couple of months.
    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  13. #87
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by richard052018 View Post
    Pete, not to go off topic (although we'd all love to get away from the Wu Flu, even for a second): have you been keeping track of the RTX biosimilars? Apparently Ruxience got FDA Approval for GPA, but not RA. Interesting development. Apparently there is a another biosimilar called Truxima that cratered EU sales of RTX. I guess that's why Genetech agreed to cover all of my out of pocket RTX costs (those not covered by insurance): they want to get all they can from the RTX golden goose before the generics crash the North American market.

    Have you're good pals at the Cleveland Clinic explored the usage of any of these biosimilars?

    Friends: Have any of our Weggies in the EU received a Truxima infusion?

    https://www.biospace.com/article/fda...gen-s-rituxan/
    I tag @freakyschizogirl who got truxima. It was not good for her.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  14. #88
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by me2 View Post
    I just got off the phone with my infectious disease doctor and wanted to share a little of what I learned. I am a candidate for IVIG therapy based on my low antibodies (because of Rituxan) but she thought the risk of going in for the treatment did not out weigh the benefit- at this point. She said as the pandemic eases up it might make sense for me to get it plus, there might be available antibody therapy that has antibodies to COVID.

    I also asked when I will likely be able to go out in public (as a high risk patient) . She didn't think it likely to be sooner than a couple of months - maybe longer. She didn't have a solid answer to that question. She told me several times that avoiding contact was the number one line of defense for me.

    I asked about N95 mask- do I need one? She said she thought it really wasn't necessary and that she herself uses just a regular surgical mask and a face shield when doing procedures. She was having trouble finding masks even for her OWN family.

    I am to continue inhaled Tobramycin therapy for lung infection that I had a few months ago as a preventive measure. I do inhalations twice a day for one month and then one month off.
    I think like your dr. The risk of going to get the IV is bigger then the risk for waiting for it. At least for me, at least in Israel. The problem here is that all the health care facilities and hospitals are already infected. They didn't keep any place which is corona free zone.

    We have daily update of epidemiological investigations where new corona patients were in the last 14 days. So checking in my area, all of the following places and stuff working in it were exposed to corona lately: the labs and office in my local health service, our local pharmacy, the hospital where I used to get rtx during the first years, the outpatient unit where I get rtx during the last years etc. It is just every where. So I stay at home. Taking more pred - up from 5mg to 10 mg, taking strerodex eye drops for my red eyes and doing budezonide inhalations for my coughing. It works well so far. I wish I could have done rtx at home. My dr. Agree that it is the best for me but my health service has refused to help.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  16. #89
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by Alysia View Post
    I tag @freakyschizogirl who got truxima. It was not good for her.
    Thanks for thinking of me Alysia... I would not touch Truxima again with a ten foot barge poll. Started off two years of hell with me and I also know of two other Weggie friends who have not had great experiences with Truxima too.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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  18. #90
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    Default Re: Coronavirus and GPA

    Like many others here I have same issues. So far there are no virus cases in our local hospital and only couple confirmed in our area. So my local doctor thought the risk of coming in for my monthly pentamadine treatment was low but that might change significantly in a month or two when they expect the apex to to hit our area.

    From what I read the main benefit of wearing a mask or scarf or face covering is to protect others and reduce the spread of the virus. It is apparently a very sneaky one that is far more contagious than anyone thought. Remember when it first started many experts didn't think it was likely to spread from person to person and certainly not from any objects. Recently they just confirmed some one caught Covid-19 from using a salt shaker that an infected person had used previously. Now they know it also hangs in the air for several minutes so going in an elevator that an infected person had used minutes before could be dangerous.

    Steroids are often used in treating Covid-19 but don't seem to have much impact on recovery time. I wonder though if the steroids would help us avoid a relapse of GPA or impact our risk for infections.

    In our area Walmart will shop groceries for you and bring them to your car and put them in so you have no contact with anyone. Another grocery store will deliver to your home. The pharmacies only have drive through service to minimize any personal contact. The eating places still open around here only have drive through service to pick up meals to go.

    I read that a blood filtering service was just approved for treating Covid19. It filters out the proteins that cause inflammation. I wonder if it work much like the plasmapharesis that many of us got during treatment.

    I love the creative genius that appears as people come up with new ideas. Several women engineers started modifying breast pumps to work as ventilators. Hospitals are getting masks from tattoo parlors. Hospital workers are using coffee filters inside their mask to get extra mileage out of their masks. You can still order face masks on the internet but sometimes the prices are inflated and often they are counterfeit so it might be uncertain how well they would work but they should work as well as a scarf or bandana which some people are using instead for face covering.

    Recent study I saw today said 15% of people who tested negative two days in a row before discharge later tested positive a few days or weeks afterward. The questions are: Are they still contagious? Is this relapse sometimes mistaken for recurrence. In the study they were quarantined for two weeks so it was a relapse and not recurrence.

    I read now they are trying to avoid using a ventilator in treatment since there seems to be a high death rate among the people who use them. Maybe they are just sicker to start with so that is why they got a ventilator but a ventilator can cause damage to the lungs. I think it can also be emotionally traumatic. I had PTSD and nightmares from the intubation and ventilator use years ago and hope to avoid it if possible.

    Did anyone else have such an experience?
    Last edited by drz; 04-11-2020 at 04:16 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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