Wegeners Granulomatosis

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

 

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  • 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.
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  • 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.

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    • Posted

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

       

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  • 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

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    • 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.
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    • 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

       

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  • 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. 

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