Hi all, hope you are all having a better day. I had another Rituximab infusion yesterday which went well. A little tired and a couple of odd hot flushes later in the evening. The funny thing was one side of my face was red hot and the other side cool, chest red hot but fine today. Anyone else had odd symptoms after Rituximab. I've got a date for my next one in 4 months time I was approached by a researcher for DCVAS so I've agreed to sign up.Ive already signed with Radar so hopefully I can give something back. I was given a Vasculitis fact sheet yesterday with John Mills name on the bottom. Thinking back I'm sure I got one when first diagnosed but always handy to have another to inform friends and relatives. Wishing you all the best.

4 Replies

  • Your flushing sounds very similar to my reaction......though I'm afraid that I don't manage to do so in such an interesting way! I find that I'm tired, but reasonably ok when I get home, and then the following morning my face is bright red and rather puffy. I can't say I've thought of checking my chest. I take an antihistamine tablet and by the afternoon most of the redness has gone, and a couple of days later I feel that things have settled down. Hope that your next infusion goes well, and you get a little less redness.

  • Apparently that is why I got an antihistamine infusion prior to the Rituximab one. Also had to take two paracetamol first thing and after all that a saline solution infusion, to flush things out. All in all a good six/seven hours on the drip.

    I was pretty exhausted for about a week after the second one, the first one a fortnight earlier was a breeze.

  • Hello Valfarn could you send a copy or a link to the Vassculitis fact sheet? My friend just came down with this and is in the shock or not want to know phase so I am trying to find out as much info as I can with out being to over whelming to her. I do understand her desire for not wanting to know but I do think knowledge is key to recovery. We are so new in the game with none of us ever even hearing about this thing called GPA and never knew it existed until just a few weeks ago. She is waiting to go see the team at USSF in the states and hope she will get a lot of info. There are so many questions. And it sounds after reading these posts she is in for a long journey. She has no idea about any of this. The cancers and all the other things that you all are dealing with. I am afraid to say any of this to her for I know it will make he lose hope but on the other hand being informed is also crucial . I am thankful to have stumbled on this group and have appreciated hearing all your stories and how you deal with this life impacting dis-ease. I do hope she will be able to seek this out for her self one day for I know she is going to need it. My question to every one is how do I get her to want to know about what's happening to her and to inform her self ? with out over whelming or should I just say nothing and just be there? It's hard to know how to help and I can just imagine what you and her go through my heart goes out to each one of you. I have never been sick a day in my life yet but I can appreciate that it can happen to any one at any time just like it has to her. I just need to be the best friend I can be. Thank you Hugs

  • Hi Shel If you go to the Vasculitis UK. site You can get the fact sheet and lots of other important information on there. I think if your friend can take an interest in her own health she will do a lot better.It can take a while to come to terms with it, it can affect people differently. Good luck. She is lucky to have your support. X

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