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  1. Re: Anyone here receive Evusheld for covid prevention?

    I had Sotrivimab, which is a monoclonal antibody.when I got Covid. I got quite unwell before I had it, quite quickly. My temp went over 40C and I became very dizzy and unsteady, at one point I ended...
  2. Thread: Bactrim/Septrin

    by Bloom
    Replies
    3
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    2,103

    Bactrim/Septrin

    I have been on Septrin since I had a pretty severe pneumonia in September. I was taking one tablet three times a week. I stopped taking it about two weeks ago as I began to have abdominal pain and...
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    Re: What is going on?

    Hi Ben,

    Sorry for the long delay. I had to come over to Australia for a family emergency, I live in the UK.
    I last had Rituximab in December 2016. I had two doses a fortnight apart, I think I...
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    Thanks Pete. I guess it must be infection. In the...

    Thanks Pete. I guess it must be infection. In the past when I've had these episodes, I've usually always had a cold before, but I didn't this time. I did read recently that Rituximab is associated...
  5. Replies
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    What is going on?

    Dear all,

    I hope someone has had a similar experience. I had Rituximab in December and over the last two months my symptoms seem to have returned. My consultant said I needed more Rituximab but it...
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    Hi River Joy, I have been on pred for 2.5...

    Hi River Joy,

    I have been on pred for 2.5 years , but never above 40mg. I have had cyclophosphamide, methotrexate and Rituximab. I also had to have posaconazole and amphotericin B for...
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    Thanks for your responses. That's really helpful....

    Thanks for your responses. That's really helpful.

    I am visiting family in Australia, I live in the UK. I am on my third upper respiratory tract virus this year, I had one when I left the UK, so...
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    8,202

    Rituximab and runny nose

    I am wondering if anyone else has experienced this as a side effect of Rituximab. I had two doses of Rituximab in December 2016 after having six IV doses of Amphotericin B:sad:.

    Since then I have...
  9. Replies
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    13,578

    Hi Poppy, I'm sorry to hear that your...

    Hi Poppy,

    I'm sorry to hear that your hyperparathyroidism is causing problems with your treatment. I did frequently have an elevated temp before I started treatment for Wegs but I seldom have now....
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    I have both. It was what eventually led to my...

    I have both. It was what eventually led to my diagnosis. A scan of my parathyroid gland, showed something on my thyroid gland in addition to a parathyroid adenoma and because they thought it looked...
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    I tried this! you can apparently stimulate your...

    I tried this! you can apparently stimulate your vagus nerve by singing or humming!
  12. After 10mg my Dr told me to decrease 2.5mg over a...

    After 10mg my Dr told me to decrease 2.5mg over a month by taking 10mg one day and then 7.5mg the next day for a month. Then 7.5mg and 5mg for a month. That seemed to work OK.
  13. Replies
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    2,863

    Hi Alysia , thanks for your advice. As well as...

    Hi Alysia , thanks for your advice. As well as tight chest and coughing up blood. I have sinus headache, earache and toothache. I would hope to have rituximab, but feel that the aspergillosis...
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    2,863

    Thanks Alysia, I am quite small, 5'2" and about...

    Thanks Alysia, I am quite small, 5'2" and about 7st. Apparently I can't increase the dose of MTX because after a bronchoscopy in September last year I was found to have aspergillosis, before that...
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    Thanks for your reply vdub . Squeezed lungs"...

    Thanks for your reply vdub . Squeezed lungs" isn't a very descriptive term. It's a bit like bronchospasm, what I used to get when I had asthma, but doesn't respond to ventolin nhaler. It's worse...
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    Methotrexate and bronchospasm

    Hello everyone,

    I am on methotrexate 15mg weekly, and because I am on posaconazole I can't take my old inhaler, seretide. I had two viral infections one after the other and it seemed to...
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    2,153

    Hi Anne, Thanks for your helpful reply. I...

    Hi Anne,

    Thanks for your helpful reply. I got here safely, although I was fairly uncomfortable on the flight (the effects on my gut from the antifungal medication, even although they said I...
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    2,153

    Thanks Birdie, part of my defence is to...

    Thanks Birdie, part of my defence is to intellectualise this but it doesn't always work! I wanted to go to Australia to see my grandkids because I felt I might not see them again as my illness...
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    Posaconazole and vertigo

    Hi everyone,

    I have aspergillosis which may be preventing me from achieving remission. They found this is in a lung mass removed by wedge resection in Nov 2013. I eventually started treatment...
  20. Thread: Rituximab

    by Bloom
    Replies
    163
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    39,484

    Hi Gilders, Thanks for your advice. I'm glad...

    Hi Gilders,

    Thanks for your advice. I'm glad you're feeling better now. I have been on prednisolone since December 2014. I am now on 10mgs daily. I feel pretty despondent about any treatment...
  21. Thread: Rituximab

    by Bloom
    Replies
    163
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    39,484

    Hi Max, Thanks for your advice. I haven't had...

    Hi Max,
    Thanks for your advice. I haven't had hepatitis B and the bronchoscopy appears to be to rule out a treatable infection given the appearance of my CT scan.
    Bloom.
  22. Thread: Depression ??

    by Bloom
    Replies
    27
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    5,903

    Hi Debra, I agree with everyone 's comments....

    Hi Debra,

    I agree with everyone 's comments. I also think sometimes medics can be dismissive, because I think they feel it's almost normal to feel that way given what's happening in your life....
  23. Thread: Rituximab

    by Bloom
    Replies
    163
    Views
    39,484

    Hi everyone, I am hoping to start rituximab,...

    Hi everyone,

    I am hoping to start rituximab, I think funding has been agreed. I have had IV cyclo- 8 infusions this year and methotrexate, neither of which have worked, I still have active...
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    Thanks everyone for your advice. I did eventually...

    Thanks everyone for your advice. I did eventually get through to a Dr who said it was impossible to tell whether it was the treatment or the disease but to stay at the same level of methotrexate for...
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    Methotrexate and peripheral nerve damage

    Does anyone find that methotrexate increases pain and and weakness in their hands and feet? I have had some problems in my feet before the start of treatment, but it's suddenly got worse.

    I...
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