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Wegeners Granulomatosis

Posted , 6 users are following.

judith68668
judith68668

After first lot of treatment seem to feel much better, is that the calm before the storm?

 

0 likes, 9 replies

9 Replies

  • ginny11155
    ginny11155 judith68668

    Posted

    No, you should be fine. Doesn’t sound like you got any negative side effects. First time I was infused with Rituxan I had absolutely no negative reaction and almost two years later I get swelling of face, rash on neck and chest but went ahead yesterday with second infusion yesterday. Side effects much less pronounced. Stick with it and much luck to you.
    • judith68668
      judith68668 ginny11155

      Posted

      Appreciate your input.  Will just have  to wait to see how things go.  Thanks for replying.
  • melvins
    melvins judith68668

    Posted

    Hi Judith,

    I have had both Rituxan and Cytoxin infusions with no side effects from the either. I have had more side effects from the steroid prednisone such as elevated blood pressure, weight gain, elevated blood sugar levels and etc but other than that I have not ever felt bad and made immediate improvements after treatments. I have been in remission 3 times and had 2 flares in the past 6 years. Past maintenance medications have been ineffective in keeping my Wegeners in remission. Currently I am in remission and my Rheumatologist has me on a  quarterly schedule of cytoxian infusions.

    • judith68668
      judith68668 melvins

      Posted

      Thank you for your reply.  I know it is early days but I just like to know how things effect others.

       

  • carolyn90826
    carolyn90826 judith68668

    Posted

    Morning judith

    I was only diagnosed in February and this morning I am having my 3rd treatment of steroids and cyclophosphamide  in 5 weeks. I have one more in 2 weeks and then I will go to a 3 week cycle! 

    The disease is starting to respond which is great but I have been knocked all of the place with the treatment. The steroids which I have had since January have made me swell up really badly but i know this will diminish when I begin to taper them off. The chemo has been tough. I have 5 bad days after it but I know it’s also the only thing to get me to remission. I’m a single mum to a 16 year old son sitting his GCSEs in May so I have to get well as soon as I can to help him! 

    I hope you continue to do well on your treatment. Hang in there. Xx

    • judith68668
      judith68668 carolyn90826

      Posted

      Thanks for finding the time to reply. Waiting for Webster pack  to be delivered.  Wishing you  the very best and good luck to your son.
    • judith68668
      judith68668

      Posted

      Feeling ok. Not sure which drug does what. 0n 25mg.  Pred.,calcium  600mg,vit.d.,visoprol Sandoz, methotrexate 10 mg.co-trimoxosole tablets 160- 800 mg.Sorry if the spelling is incorrect.  Maybe this means nothing to you.  Hope you will still improve soon.(  Blood test next  week.) xx

       

  • mandy96315
    mandy96315 judith68668

    Posted

    Hi Judith, 

    I was diagnosed with GPA in september of 2016. I just had my 5th Rituximab infusion last week. the only side effects I have from it is very tender skin and weakness, sometimes headaches. I’ve never broken into a rash. I hope you don’t get any side effects! This disease is seriously a pain. It makes me super emotional and I wondered on this site looking for support. We have to stay strong. 

  • joshuapryce1987
    joshuapryce1987 judith68668

    Posted

    You will know if its the calm before the storm if you struggle and see early signs of the storm before the storm happens. It could be that the storm has already gone. Brace yourself as time will tell.

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