Rituxamab

Today I went to see my two consultants (a Rheumatologist and a Respiratory doctor) who was very excited to tell me that they had the funding for me to have the above drug.

I have been waiting for over two years for the funding for this drug. Several times I was told no by the funding people even when I tried putting my case forward myself. I even went to my local MP who was not very helpful.

Of course I now have to wait for the result of blood tests for TB and Hepatitis B and C and in the meantime I will have to try not to get any infections before I can be given the infusion.

My diagnoses is Mixed connective tissue disorder with lung involvement and all the other add ons such as raynauds phenomenon, joint pains, hair loss and thinning, sjogren's syndrome, nodlues in thyroid glands, cerebral vasculitis and others.

At the moment I am on Prednisolone 10 mg for about two years now but I have been on a higher dose in the past and I have had all the usual drugs including Hydroxychloroquine and Cyclophosphamide. I always had bad reaction to most of the drugs and the Cyclophosphamide only made me feel better for about three months after the last infusion.

Just want to say my consultants have been brilliant in persevering with getting the funding for this drug for me.

6 Replies

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  • Gosh: this is a big moment! Congrats!

    Wishing you every possible ounce of good luck with this

    VVVVV much hoping you'll let us know how you get on...inc the testing etc before starting rituximab.

  • Thanks Barnclown, I will certainly let you know how it all goes xx

  • I hope you can get off the Prednisone. My friend has Lymphoma and she's had Rituximab infusions for 3 years. She's in total remission now and feeling great and her labs are all normal. There are virtually no side effects. Some people get sinus infections. I would recommend using a saline spray a few times a day. Other than feeling tired the day of the infusion, she's one of our best tennis players! She's strong and doesn't have the fatigue we all have. Unfortunately, I, too, have most of what you described above. The Raynaud's makes it difficult for me to eat in restaurants and take cruises because the AC makes my fingers numb and turn white and purple. I bought hand warmers which help a lot! When we board a cruise ship, the first thing we ask is to have the AC fan turned off and just have fresh air blowing in,

  • Hi Tennissenior, I am so glad that your friend is in total remission after the infusions and that she had no side effects as I am getting quite nervous now because I had such an awful time when the Cyclophosphamide was been administered.

    I do go on cruises and will be going on one in June, I take a lot of shawls and wraps so I am not cold when in the public places on the ship. I always wear gloves even in restaurants and I don't worry who stares as I use ambulatory oxygen so I'm used to stares and I try and remember to say no ice in my drinks.

    Hope you're having a good day, blessings xx

  • That's great news. I have RA as well as osteoporosis and cervical spondylitis. I have over the past 15 years had infliximab and rituxamab infusions, enbril injections, and currently on tocilizmab infusions, together with methotrexate 20mg injections weekly and prednisone 7.5mg daily also celocoxib anti inflammatory tablets together with tramadol and co-cocodamol. I am very fortunate to have excellent rheumy support with a fast track provision where I am seen within 24 hrs of contacting my rheumy team. The infusions have been my life line and have given me more independence. I hope you will find the pain and stiffness will ease with the infusions, they won't cure, but will help to stop your condition worsening. Good luck, Denisex

  • ThaK you Rudeforth, I will be having the infusion mainly for the fibrosis of my lungs so I'm hoping I will be able to breathe more easily and not have to use so much oxygen to get about.

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