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Thread: Coronavirus and GPA

  1. #41
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    Default Re: Coronavirus and GPA

    I am skipping my labs this month. I had a Rituxin treatment on March 13th so I have been home bound since the 14th.

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  3. #42
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    Default Re: Coronavirus and GPA

    Hi Alysia,
    I hope you can continue to order groceries online or over the phone. As so many people are self isolating and the whole country is almost in lockdown, all delivery slots are fully booked before you get chance to find a slot here in the UK.
    I'm pleased to hear that your cataract surgery went well.
    If you haven't got any new symptoms after 5 days since you last left your home, you shouldn't have COVID-19.
    I am not happy with all the panic buying and stock piling of items such as toilet paper, but you have a medical reason for needing more than the average person, so I'd try to stock up on some if possible.
    I use Budesonide in my nasal rinse. It was REALLY painful the first few times. It felt like brain freeze followed by a stinging and itchiness just under my scalp. It does seem to help a little and those side effects only happened the first few times.

    Keep safe and well.
    Last edited by gilders; 03-29-2020 at 09:46 PM.
    Diagnosed April 1995

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  5. #43
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by [email protected] View Post
    I read that the USA has now more confirmed Covid-19 patients then China. Most contaminations are in New York city.

    https://gisanddata.maps.arcgis.com/a...23467b48e9ecf6

    I sure hope everybody on this forum was able to take precautions, and to talk through with the doctor in charge, what is best in your specific case.
    Stay strong, everybody!
    I am so glad to hear from those of you checking in. If others feel like it let us know how you are doing. We are the folks referred to with compromised immune system. I have a double whammy because of my age. Sheltering in place!
    Richard, I have been thinking about you since yesterday. Your doctor said you need these blood tests and the office is taking precautions, also your wife is right, it won’t be safer in two weeks. Those things taken into consideration, you must also take precautions. Wrap a scarf around your face, wear gloves, remove shoes and clothes in garage and head straight to shower. Not my ideas, just told this by the father of an MD this AM. A runner said he was safe, the doctor said not if you pass a person who sneezes, you can’t outrun a sneeze. Just heard from my ENT’s office, a worker has it. This after many emails about the precautions they are taking.
    Alysia, my prayers are crossing the ocean to you and your family. Like you, I haven’t been able to read or even do watercolors. Unfortunately, I find myself addicted to the news and I know that is not healthy.
    I am cooking, trying to get creative for the long haul. We are well stocked and I order little things from delivery.
    Husband had to go out for my meds today, went to drive in window, took his own pen, wore mask, gloves and goggles. Some people in my retirement community are not taking this seriously, others are. One woman asked what salons were open, her roots need done. Another answered “ Does she want to look good for her coffin.”
    I am staying on my Bactrim and 10 mg of prednisone. Not the time to try to reduce and get an infection. My scalp psoriasis has started to act up, but a treatment just got delivered an hour ago.
    My infusion scheduled for April has been canceled. I am hoping by June this thing has started to cease.
    All doctors appointments have been rescheduled. They only want emergency patients.
    How about our lupus cousins. Some are on the med they are talking about for the virus. Evidently they have taken it away from some lupus patients and treating covid 19 with it. The lupus foundation is up in arms over this. What a mess.
    It is hard to come up with a light thought during these times. But here are a few.
    I gave one of my dogs a haircut. He looks like a street urchin. The other one won’t come near me- all true.
    The next is a joke.
    They told me all I needed for the grocery store was a mask and gloves.
    They lied. Everyone else had clothes on.

  6. #44
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    Default Re: Coronavirus and GPA

    My wife and I are doing ok. We’re both prime targets for the virus being in our 70s and being immunocompromised (She has autoimmune hepatitis and takes 75 mg/day of immuran.).

    We go to the grocery store about every two weeks and really stock up. We got take out bbq once from our favorite place. This weekend, we celebrated our granddaughters’ birthdays (ages 7 and 5). They’ve been out of school for over two weeks, so we visited them for dinner yesterday. It was good for all our spirits.

    Our house is on a city bike/hike trail. I’m walking a bit over two miles a day. The trail has been busier the past few days because it’s been unseasonably warm. No socializing on the trail.

    That’s been about all we’ve done. Doing more reading. Getting ready to do some small projects around the house (painting woodwork and landscaping). Disappointed that local golf courses are closed...
    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

  7. #45
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    Default Re: Coronavirus and GPA

    We learned that Walgreens allows shopping their store through the drive up window. The “convenience store” items there are pricier in many instances but it is nice. We told the girl in the window about things we wanted and she sent a shopper into the store. The only physical interaction was putting our credit card in the drawer.

  8. #46
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by John S View Post
    We learned that Walgreens allows shopping their store through the drive up window. The “convenience store” items there are pricier in many instances but it is nice. We told the girl in the window about things we wanted and she sent a shopper into the store. The only physical interaction was putting our credit card in the drawer.
    How do they get the items from the store into your car cause the drive thru windows are rather small? Does some one bring them out and give them to you?
    I learned our Walgreens says they will only get small items like over the counter meds tht will fit in the drive thru drawer.

    I learned you can order many items off their web site and some can be shipped to you. I ordered some over the counter meds that way.
    Last edited by drz; 04-03-2020 at 06:32 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  10. #47
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    Default Re: Coronavirus and GPA

    Here in Europe (The Netherlands) we also order groceries and over the counter medication online.
    The guy that delivers the groceries nowadays offers the possibility to pay without any contact.
    He shows his smartphone-screen from a distance of 6 feet, on which you see a socalled QR-code.
    You scan that code with your own smartphone (maybe by taking a small step forwards I guess, my husband took care of it yesterday).
    Then you immediately recieve the bill and pay with your own banking-account online.
    Living with WG/GPA since june 2010...

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  12. #48
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by Alysia View Post

    I have all meds for nebulizing but I dont know which one to use, how much and when. I sent a fax to my lungs dr. But he didn't phone me back. (Yet ?)
    I guess docs are overwhelmed.


    The meds that I have are :
    Saline bottles 5ml
    Aerovent 0.25ml
    Terbulin 10ml
    Budesonide 1mg


    Does any one here use any of those ? [/url]
    Hi, Alysia, I'm not reading the forum the best way so entirely missed this thread until very recently and it will take some time to get through it. So need to stop using Tapatalk and get back on computer but found my login there had expired. So will re-register with new password.
    I recently got a nebulizer but the only med I have is albuterol, which might be same as aerovent for you. Just a guess. It helps some but I don't use it much because it has caused problems in the past, in an inhaler, which I still have and only use for rescue. Too much albuterol made my asthma worse, back when it was all I had. Plus it can cause heart palpitations, but usually not if not overused. Everyone is different, but it's not my first recommendation except as a rescue inhaler.
    As for budesonide, that's a steroid and I use it in an inhaler twice a day, and it's very effective and does not cause problems. I intend to ask my lung doc to prescribe it for the nebulizer, next time I see him. Unfortunately, in my town, docs haven't offered me the chance to email or call them directly with issues. But I can call his nurse if there's a real issue, and will get results, and can ask about emailing. For now, I'm getting by fine with the steroid inhaler but am curious about using it with the nebulizer, since I have it as an option. I don't know what Terbulin is, but the saline sounds interesting and I don't think it could hurt, since we use it in our noses.
    Maybe someone else has replied, I'm way behind on this thread! I enjoyed the biblical verse, and certainly do understand your nervousness about what is going on. It sounds worse in Israel than in my county of Washington state, no doubt because your population is more dense. But I'm ever mindful it will probably get worse here. No one here was prepared for this, parts of our country are in huge crisis, as you know, and not enough was done in the early stages. That's probably true for just about anywhere. Love to you and your family, may you all be safe, and I think of you often!



    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 03-30-2020 at 09:26 AM.
    Anne, dx'ed April 2011

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  14. #49
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    Default Re: Coronavirus and GPA

    Masha: thanks so much for your thoughts. The plan is to go with goggles, mask (hopefully they won't think I'm robbing the joint), gloves, full skin cover, bringing a towel, clorox wipes container in hand, hand sanitizer in the car. I don't care how hard they laugh at me.

    You also make a great point about shoes. This virus can live on shoes for 5 days, so anyone who leaves their home should have a designated pair of shoes for such a purpose, and these shoes should not come into the home.

    Wash your hands everyone, and stay home.

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  16. #50
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by drz View Post
    I went in two days early for my Pentamadine treatment for same reason. We had no confirmed cases in town yet or suspected cases being treated in the hospital so this was as safe a time as it is likely to be for next few weeks. Not sure how things will look in a month or what i will do or can do then. But i am fearful about having to go to the ER for any reason or any other medical clinic. Most are closed here so not too likely to happen very soon.
    Hi, drz. I'm doing OK here and may say more later when I can get logged in on my computer. I am on my phone, on Tapatalk, and realize I've been missing some threads.
    I did get your private message and wrote a pretty long reply. Then I wasn't sure it was sent, as it didn't show up after yours. It was probably sent, and that's just how Tapatalk does it.
    Edit: NEVER MIND! I just found my list of sent items and know it was sent. So all is well. Hope to see you soon on the REAL forum.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 03-30-2020 at 05:37 PM.
    Anne, dx'ed April 2011

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