Finally confirmed

[carolynamu]

I have been visiting this site as guest off and on since 2014 when I was tentatively diagnosed with possible Wegeners(GPA) or Churg-Strauss(EGPA). With pred and Methotrate the initial problems which were sinus, joint flares and large red skin patches were controlled. The joint flares were not well controlled and this past spring (April and May 2018) the joint flares reach a point of one a week. At which point, sought a second opinion. The new doctor thought it was not GPA and suggested it was a RA or similar problem and I started Humira. Follow on blood test showed great improvement and I was working on reducing the pred when something went wrong. I developed serious gum problems, and ear problems. A biopsy of the gums confirmed (finally) that it was GPA. The doctor upped the pred , dropped the humira and I am to start rituximab as soon as they can get it scheduled. I am very concerned about starting rituximab. How effective is it and how quickly does it work?

[Pete]

Hi Carolyn,

Welcome to the club. Most people tolerate rituximab pretty well. A very few have an allergic reaction. When you get rituximab, you’ll also get a big dose of steroids, some benadryl, and some tylenol to minimize adverse reactions. I had my 13th infusion last week. I’ve never had a problem taking it.

Rituximab generally takes several weeks to take full effect, so your doc will probably keep your steroid at present level for awhile.

Keep us posted about your progress!!

[Masha]

Hey Carolyn,
I am probably a day late and a dollar short on getting back to you regarding Rituxan infusions. I can only speak from my experience. They work great for me. I have had three series of once a week for four weeks. Since people on this site not only live all over the country, but also in other countries, you will see that the way the infusions are administered are all different.
Usually after the beginning of infusions I experience some leg pain. I am retired, so my time is flexible, but I have heard others say they have their infusions on Friday and recover on the weekend.
How fast do they work, after a few weeks I was feeling better. Some people go into remission fairly quickly, others need infusions for years.
The only thing I will tell you about is what Pete said about the prednisone. I don’t think any of us get much sleep the night of infusion because of that drug. The next day you may be pumped. I did a clean out on my closet. I find prednisone to be hard on the stomach. The nurse for my very first infusion emphasized I had to have a healthy breakfast, and encouraged me to bring food. The nurses also encouraged me to drink plenty of water for a few days prior to infusion.
My Wegeners is similar to yours, sinus, gums (lost teeth, replaced with implants) and red painful legs.
A few hints I learned on this site: I hated sinus rinses then someone suggested I get a Sinu Pulse machine. It is sold on Amazon, easy to use and limits infections. Also another hint is to take Mucinex to keep those sinuses cleared. One more thing is Flonase.
Sorry to hear you were misdiagnosed. I probably had it for years, but at least I am being treated now, and feeling so strong that I have to control my urge of wanting to do everything.
Please don’t hesitate to ask questions. Others were here for me and I will be happy to help in any way.
Keep us posted. I ‘d like to hear how your infusions are going.
Be well.
Masha

[carolynamu]

My first infusion went smoothly. Probably because of pred and methotrexate a lot of my symptoms have subsided. I am doing a second infusion next week and then it's the wait 6 months. Doctor is being very careful about decreasing the pred because of all the problems this time

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Rituxan has been a “wonder” drug for both my son and myself. We have had 20 years of illness each and Rituxan was the first drug to work without serious side effects. With Rituxan we can actually have a life. Now it appears I will need to be treated with once a week for four weeks every four months to prevent relapse. We’ll see. My son believes he is doing fine without repeated Rituxan. Everyone is different in their response.

[carolynamu]

Thank you for responding. I have had two rituxan treatments as an initial start. Now I am scheduled for one 6 months out. So far between the pred and methotrexate most of my flare has calmed down. The problem will now be to reduced the pred without a flare