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  1. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    Can it be related to the amount of pred that you take ? Or to stress because of the decline in the numbers ?

    May your numbers be higher, May your kidney behave good, May your days feel good, May...
  2. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    So sorry the numbers declined again. Thank you for the update.

    I wonder, when the numbers are down do you also feel a change or is it only the numbers which tell about it ?


    Stay strong. We...
  3. Replies
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    1,070

    Re: High calcium in urine

    An update: the calcium in my urine of 24 hours collection has continued to be extremly high, now it came back 432. The norm is no more then 250.

    My endocrinologist said that the high calcium in...
  4. Thread: 20 year old son

    by Alysia
    Replies
    228
    Views
    13,620

    Re: 20 year old son

    Any updates yet ?

    Did they check his C-anca and Pr3 ? Is he anca positive ? For me one of the first signs of a flare is when pr3 becomes above the norm.

    Sending prayers.

    שבת שלום
  5. Thread: 20 year old son

    by Alysia
    Replies
    228
    Views
    13,620

    Re: 20 year old son

    So sorry about his headaches and night sweats. I am glad they are going to check his head.
    Night sweats can be an indication to wg activity. But can also be related to some virus or infection. How...
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    Re: Happy Birthdays Thread

    Happy Birthday in heaven to my beautiful @pberggren1 and to our beautiful Barbara N
  7. Replies
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    90,425

    Re: pberggren memorial thread

    Today, July 7 is my sweetie's birthday; I wrote to him:

    Happy Birthday in heaven, sweetie,


    "If you love until it hurts, there can be no more hurt, only more love" (St. Mother theresa).

    ...
  8. Thread: Donations

    by Alysia
    Replies
    106
    Views
    22,996

    Re: Donations

    Funny, my post went twice, one for me and one for my sweetie :thumbsup:
  9. Thread: Donations

    by Alysia
    Replies
    106
    Views
    22,996

    Re: Donations

    It is already pberggren1 's birthday in Australia.... and sure in heaven, so celebrating :hug3:

    Thank you so much, andrew for keeping the forum going and doing such a great work, mostly on your...
  10. Thread: Donations

    by Alysia
    Replies
    106
    Views
    22,996

    Re: Donations

    It is already pberggren1 's birthday in Australia.... and sure in heaven, so celebrating :hug3:

    Thank you so much, andrew for keeping the forum going and doing such a great work, mostly on your...
  11. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    Thanks for the update. I am so glad that the kidney's numbers are better after all. I wonder if the small fluctuations are not a natural mistake of scales in the lab. I think that with some tests it...
  12. Thread: 20 year old son

    by Alysia
    Replies
    228
    Views
    13,620

    Re: 20 year old son

    Hi, Nice to see you around, although we can guess that when you are not, it might mean that Yosef is doing good, which is great.

    Congratulations for his wedding and many blessings.

    Each flare...
  13. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    I've started to be worried about gilders. His last update is June 19. He usually comes to update more often, right ? Praying..
  14. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    Keeping you in my thoughts and prayers, Pete.
    I hope the fluctuations in the kidneys functions are not significant and that your docs know how to treat it. Please update us when you can.
  15. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    How are you doing so far, gilders ?
  16. Thread: Need a referral

    by Alysia
    Replies
    4
    Views
    185

    Re: Need a referral

    Hi Nancy,

    During my first 4 years of wg, my docs who were totally ignorant about how to treat wg, treated me the way you do: by pred only, plus 1-2 years of bactrim. They had thought that I didn't...
  17. Re: My Rhumy and I started me on High doses of THC and CBD oil

    Thanks for sharing, my friend. Please update us how it goes. (Not that I am going to try it). Please be careful and keep an eye on yourself.
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    Re: Azathioprine - Mycophenolate mofetil

    I tag freakyschizogirl who also started Plaquenil.
    Btw, there is another wg med that you didn't try yet - it is called Arava. Ask your dr.
  19. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    Thanks for the update.

    Thanks God the swelling had decreased. I am glad that after all you are doing better, even exercising.

    That's interesting what you wrote about how the creatinine is...
  20. Thread: Help

    by Alysia
    Replies
    8
    Views
    432

    Re: Help

    Hi angel,

    I understand that you need finnacial help so very much.. I am sorry about not being able to help...

    are you still in the hospital ? How are you doing ? Do you have anyone who helps...
  21. Thread: Transplant

    by Alysia
    Replies
    228
    Views
    20,191

    Re: Transplant

    Any news, Pete ? Praing for you. Please let us know how are you doing....
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    Re: Hydroxychloroquine?

    Hi Sam,

    So sorry the rtx has stopped working well for you. What kind of reaction did you have ? Did you get the 100mg IV pred before in order to prevent reactions ?

    Tagging @Aneinu who's son...
  23. Thread: Help

    by Alysia
    Replies
    8
    Views
    432

    Re: Help

    Hi angel,

    I know that the company of rtx is located in US but since they also sell it to india, they might be able to help you too. Try to send them an email and explain your situation.

    A...
  24. Thread: Help

    by Alysia
    Replies
    8
    Views
    432

    Re: Help

    Hi angel,

    I am so sorry that you flare... :crying:

    Please check in the following link - this is the company who makes rtx. Try to check your options and send them an email. Tell them about...
  25. Replies
    17
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    603

    Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,

    I was never on the Mycophenolate.

    Actually most of our meds have scary list of side effects.

    But I suggest you to ask for rituximab, for 2 reasons:

    1. Less side effects for...
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