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Medication Help for Wegeners

Posted , 14 users are following.

d04s
d04s

My husband was diagnosed with Wegeners last month. He's currently on IV cyclophosphamide and oral prednisone! We are trying to change to Rituximab(Rituxin?) after reading that there are less side effects to using this new drug. Does anyone have any experience with these 2 drugs? This is all so new and I don't know what to expect. We live in Seattle,WA. Is there anyone in this group from Washington state?

0 likes, 21 replies

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  • philtw
    philtw d04s

    Posted

    I've had GPA for 3 1/2 years now and had rituximab x3 times with no side effects. it has helped in reducing my prednislone dosage. Ive never had cyclophosphamide......

  • MichaelsMom
    MichaelsMom d04s

    Posted

    We are in New Brunswick Canada and have experience with both drugs. My son was on cyclophosmide orally when first diagnosed. He was on this drug fora little over 5 months and it wasn't working. The Dr put him on Rituxan and he started feeling better within a week. There are risks with both drugs but am glad he got off the cyclophosmide. He had 4 treat men's over 4 weeks to start and has had 2 treatments over 2 weeks every 6 months since. He is also on methotrexate, low dose weekly as maintenance along with prednisone also low dose. His Dr wants him off the prednisone first. He was off prednisone before but relapsed. He responded well to the Rituxan with no real side effects. He had a bit of a reaction with the very first treatment but they gave him benedryl and slowed the intravenous drip down. He gets tired for a couple of days after but feels okay. We felt the Rituxan was a god send and wish he got it first instead of the cheaper Cyclophosmide. Because the Cyclo was not working he needed to be on high doses of prednisone which caused necrosis in BOTH knees. He was in a wheelchair for over a year while the knees healed. Perhaps if he had rituxan at the start he could very well be back to work. This was our experience and everyone is different. Personally I feel if the Rituxan were not so expensive it might be the first protocol on diagnosis. Other then the set back with his knees he is doing well with no lasting organ damage.Good Luck

    • d04s
      d04s MichaelsMom

      Posted

      Thank you for your sharing. We're hoping to talk to our doctor about switching to Rituxan. But it's so expensive! My husband's symptoms are better with cyclo but I also think it's the prednisone that's suppressing it. How did you find out if the drug is working?

    • MichaelsMom
      MichaelsMom d04s

      Posted

      Mostly he started to feel a bit better. His kidneys improved as well. He got a blood clot in his leg and the Dr felt the Cyclo was not working. Then he developed the bone necrosis in both knees and the Dr stopped the Cyclo. Personally if I knew then what I know now I would have pushed for the Rituxan. Many people do well with the Cyclo especially if there is not a lot of organ damage. By the time my son was diagnosed he was quite close to having his kidneys ruined and his lungs were filling with blood. They had to do drastic measures to supreme his immune system and he also had 5 rounds of Plasma exchange. Luckily for him his drugs are covered as well as the Rituxan. We did learn that the pharmaceutical that makes the Rituxan will supply it if it's not covered. In Canada it is administered by Joint Health or something like that. If you are interested in the name I will ask my son, just let me know. Try not to worry and get a good Rhumetologist. Good Luck

  • dave170448
    dave170448 d04s

    Posted

    Hi

    Sorry to hear that your husband has GPA (Wegeners) i got diagnosed in 1999 and went immediately on a high dose of Prednisolone which then tapered off. Retuximab was only available to me in 2014 and I've had infusions every 6 months since late 14. After each of the first 3 infusions i felt GREAT! And then......The effect has not been the same with the last three. So, that my be just my experience. Have you got a good Rheumatologist who knows Vasculitis?

    Good luck!

    Dave

    • d04s
      d04s dave170448

      Posted

      Not yet. We are meeting more Rheumatologists next week. I've checked doctor reviews online and they seem to be specialized in GPA. We'll know more after our appointment with them.

  • lorrieb
    lorrieb d04s

    Posted

    I was diagnosed in 2015 and was on cyclophosphamide for 4 months then azathioprine for 6 months then I had a relapse in October and had 4 doses of rituximab and down to 10mg of prednisone with no side effects from either best of luck to you. I live in Michigan
    • d04s
      d04s lorrieb

      Posted

      Thank you for sharing and Good Luck!
  • brenda86827
    brenda86827 d04s

    Posted

    How is your husband doing? I am in WA state, over on the east side. I've had 2 sessions of Rituxin. Am stable, but still symptomatic. I was diagnosed June of 2016. Started at 10 mg of pred. Tried to taper, but recently had to go back from 0 to 5 mg. I also take Bactrim for that nasty nasal stuff!

    • brenda86827
      brenda86827

      Posted

      By the way, I love my rheumatologist in Wenatchee!
    • rockinbobby
      rockinbobby brenda86827

      Posted

      Hi  Brenda, I too love my Rheumatologist in Wenatchee! I'll bet it's the same one- what a blessing! I live in N. Central Wa. about 120 miles north of Wenatchee but have been able to get infusions locally due to our wonderful medical system- Confluence health. I was diagnosed in July after having coughed and lost weight since April of this year. Just finished my 4th infusion of Rituxin yesterday and now wait for 2 weeks to see what labs say. On 5mg of prednisone now- my wife calls me "energizer Bobby" - up early doing chores! I am seeing now that I may have to take the steroid for a long time. I'm also interested in this Bactrim since I am experiencing some sinus pain & headaches. May God bless you through this Brenda!

    • brenda86827
      brenda86827 rockinbobby

      Posted

      I just saw this! Hope you are doing well! Dr. Bryd, right? He is great. Well worth the trip from Yakima to go see him.
  • lawoflakeland
    lawoflakeland d04s

    Posted

    I was diagnosed in July of 16 ,High doses of prednisone (60 mg), 6 rounds of plasma exchange, and cytoxin every 3 weeks for 6 months then put on azathioprine, relapsed in Feb. More plasma exchange and started on Rituxin in May of 17. In my experience the Rituxin is a much better option, although insurance doesn't like to pay for it. The makers of Rituxin have programs available to help offset the cost of the medication, but you have to do all the leg work. Good Luck and well wishes your way!

  • marie96185
    marie96185 d04s

    Posted

    I have taken Rituxum in IV form, I had good results the first time, no after effects, had to take Sulfa in pill form for about 6 weeks afterwards.  2nd time I took Rixuxum, a year later,  I did not notice that much difference had to take sulfa  pills again, am now in remission, I had this Granulomatosis with polyangiitis since January 2014, I am writing this in April 2018, I will be 81 years old next month.
  • tom35558
    tom35558 d04s

    Posted

    I’ve been dealing with wegeners for a little over one year now. I had moved to Florida in less then two month period ended up in hospital for 13 days last September. I am now 57 yrs old but was in phenomenal shape which include being in a running club and going to a gym daily to promote my healthy habits. In the hospital I was put on dialysis, 7 days of plasma exchange, blood transfusions and a round of cytoxan before leaving. I was actually feeling better and off dialysis with no pain but days later felt numbness and pins and needles in toes. I complained to rheumatologist and chemo infusion doctor about problem with no answer. I had two more cytosxan infusions before rheumatologist took me off due to liver issues. I have since had 4 rituxan infusions since which doctor feels is working. I now have eye and breathing issues and feet are now feeling worst. I am now depressed and frustrated being in constant pain when walking. I assume now that I have cipn which is usually permanent after one year.
    • brenda86827
      brenda86827 tom35558

      Posted

      This is a really depressing disease. Are you on pred? Do you feel the Rituxan is working? It can take up to 3 months to feel the full effects. And, you may need several sessions. It took 3 sessions for me, 6 months apart, for things to look better. I was initially stabilized with only 10 mg of pred and have reduced that down to 3. My worse problem is shortness of breath which really hinders what a person can do! My rheumatologist had to keep reminding me when this whole mess started in 2016, that it can take a couple years or more to get this under control. About all you can do is hang in there and let the Rituxan do its job. Hopefully you are being seen every 2-3 months for lab work. I am lucky in that my rheumatologist has an advice nurse I can call if things worsen and if so, he sees me sooner. I would also advise joining the Facebook site for Wegeners. It's a very supportive group!

    • tom35558
      tom35558 brenda86827

      Posted

      Thanks for replying Brenda! I was on pred for many months and slowly weaned off from 80mg to 0 now! I had been getting blood work ever 2 weeks and then seeing rheumatoid doctor. My doctor now sees me every 2 months. I had my first 2 rituxan infusions last November and had 2 recently in April. My doctor feels my blood work is so much better then in the past but I feel worst lately. I developed eye and breathing issues in May and neuropathy in feet has gotten worst. I don’t no what is worst, poor vision in one eye or not being able to exercise at all. I just still hope that someday I could, bike, run, swim or go to gym without pain. I hope you are doing well and truly apologize for sharing my negative news. I will always fight and try to be optimistic but I am not use to failure.
    • brenda86827
      brenda86827 tom35558

      Posted

      I completely understand. There are things I can't do with friends because I get too short of breath. I have been swimming, but have to stop and rest after every 1/2 lap. It's so frustrating! summer heat creates a real dry eye problem for me as well. Congratulations for being able to get off pred!

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