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12-13-2020, 06:43 AM
#141
Re: Coronavirus and GPA
@Pete just read your earlier post about your fall. Hope you're doing well with pain and the kidneys cysts are just the "getting old" variety and nothing sinister.
Thanks for update regarding what Dr Villa Forte told you about Covid-19 vaccines. It's going to be very tricky for me. Being a transplant patient I take anti-rejections drugs multiple times every day, so I'll never be able to hit a sweet spot where I'm not quite as Immunosuppressed.
Even with some improved knowledge and treatments since the start of this year, recent UK figures show that 1 in 4 kidney transplant patients die from COVID-19 if infected. With all my other conditions adding to the risk it's quite concerning.
Glad to hear your hospital taking good precautions. I'm due a Oesophago-gastroduodenoscopy the Monday before Christmas. I need to have a COVID swab test 3 days before, so it looks like my hospital is also taking good precautions too.
Diagnosed April 1995
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12-13-2020, 07:33 AM
#142
Re: Coronavirus and GPA
@gilders
I recovered completely from the fall and aftermath. My PCP and rheumy both said the kidney cysts were nothing to worry about. And they run in my family. All is good here. The kids and grandkids will be here after while for an early Christmas celebration.
Hope your procedure hoes well.
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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12-13-2020, 07:49 AM
#143
Re: Coronavirus and GPA
@Masha
Tell your hubby flattery will get him everywhere. 😂😂😂
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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12-14-2020, 04:14 PM
#144
Re: Coronavirus and GPA
Originally Posted by
Pete
A little more info regarding @
JohnS conversation with Dr Villa Forte. She called me at about 7:00 last night. So far, the vaccines are OK for us weggies. The trick is getting the shots timed around rtx treatments.
I have been getting an annual dose of 1000 mg of rtx usually in September-October. I have a new wrinkle in that my insurance is not approving this treatment any longer. They will approve two 500 mg doses spaced six months apart. I’m scheduled for my next treatment in March. If I can get both COVID shots before March 1 (unlikely), I’ll be OK for rtx as scheduled. If not, I’ll have to wait six months after rtx before getting the COVID shots.
Fortunately, my last 1000 mg dose should see me through until autumn 2021. Our plan for now is for me to get a B-cell test in February. If that looks good, I’ll postpone the March rtx and get the COVID shots at my earliest opportunity, then wait six months for the next rtx.
BTW, Dr Villa Forte says she has 139 weggies on rtx, and she’s going to call each of us. This is but one of the reasons why I think she’s a great doctor!
Dr. Villa Forte (who I consult with mostly remotely) told me she expected the insurance companies to discontinue allowing 1000mg doses after one of the recent trials showed 500mg every 6 months was effective. Crazy as it sounds though, I somehow got approved for 1000mg (from Anthem) after a little back and forth (my rheumy financial counselor is very good) and I go in on Wednesday for the infusion. My guess is someone is gonna get fired over that one.
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12-14-2020, 07:06 PM
#145
Re: Coronavirus and GPA
Very interesting. A few months ago my insurance would not approve 1000mg but said they would approve 500mg which is what I ended up getting.
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12-15-2020, 01:39 AM
#146
Re: Coronavirus and GPA
My September infusion was 500 units. My SED rate has been slightly higher than it was under 1000 units. Other than that I have not noticed any difference.
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12-15-2020, 02:02 AM
#147
Re: Coronavirus and GPA
The term used by my financial counselor was "I was grandfathered in because I was part of the old system" I was fully ready in my mind to drop down to 500mg.
Has anyone pursued getting Genotech to pay for the other 500mg? For me, they pick up every bit of my out of pocket costs for the infusions (even the chair fee). I think they are worried about the biosimilars that I'm expecting will be pushed on us in the coming years as I believe their patent has expired
I also forgot comment. I read above (or on another thread) that Pete you are getting a "B cell test". I've asked my rheumy if she has ever pursued "B cell testing" and she said no. I consult with a nephrologist due to some slightly elevated creatinine (he blames my blood pressure meds and bactrim usage) and he said that "B cell testing" is primarily reserved for a clinical setting.
Anyhow, it would be interesting to see for those who have dropped from 1000mg to 500 mg how much this has impacted B cells. Too bad we don't have baselines on 1000mg. The only thing I do know is I've never had a positive ANCA or PR3 test since my original, and I attribute that to the RTX big guns. Who knows what other damage is being done by the drugs, I just need these damn drugs to work 9 more years. 9 more years!! Please let me get my little girl to adulthood!!
Last edited by richard052018; 12-15-2020 at 02:08 AM.
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12-15-2020, 05:53 AM
#148
Re: Coronavirus and GPA
Yes, Richard, when I went to 1000 mg my Canca and PR3 started coming back negative too. What I would like to know is who are these people who make decisions regarding our medical treatment. How long was their study? Where was it done? How many people participated? Why were we, the patients, not notified a study was taking place?
I am not happy about being shoved into a slot without more information.
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12-15-2020, 06:04 AM
#149
Re: Coronavirus and GPA
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12-15-2020, 11:54 AM
#150
Re: Coronavirus and GPA
Now I’m seeing reports that Rituximab patients can get the vaccine. I sure hope that they make up their minds in the next month.
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