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New Symptoms following Cytoxan and Rituxan Induction?

Posted , 5 users are following.

nguye184
nguye184

Hi All - 

First of all, I'm so happy I found this forum. The support and encouragement that is shared is extremely positive - it gives our family lots of energy to deal with this horrible disease.

I'm mainly writing for my father - who was diagnosed November 2017 with MPA. Here is the timeline in condensed form of his development:

- Late November, blood in sputum

- Late December, admitted to ICU with kidney failure and lung filled with blood

- 3 week ICU stay including ventilator support, continuous dialysis, and immunosuppresants

- 2 cycles of cytoxan total during 4 week stay in hospital. once a week cycle of rituxan (4 total)

- He came home with great lung function, creatinine at 2.7 (no dialysis) and down to 2.5 after a month.

- Weekly physical therapy, on large doses of prednisone and tapering

My father is in decent health, but I believe he is getting impatient. I've explained that people don't kick this disease after 3 months from diagnosis, I think he was optimistic because the improvement was so drastic in the first several weeks he was off the ventiator. Now that the progress is slowed, he feels like he's back tracking.

I wanted to ask the group if they've experienced the following:

- Small amounts of blood still in sputum (only in mornings)

- NEW symptoms that he's never experienced before AFTER being sent home from the hospital after his first rounds of immunosuppresent infusions - this one mainly being joint pain in his knees (having trouble walking on it)

Are these normal? He's scheduled for more rituxan 6 months after he's left the hospital (in July,) but i just wanted to make sure he's experiencing typical symptoms pre-remission. Any advice will help tremendously.

0 likes, 8 replies

8 Replies

  • brandi07352
    brandi07352 nguye184

    Posted

    Hello. Sounds exactly like what my mom went through. Back in May was very weak and spotty up blood. I took her to erase and she was admitted. Probably a week later was diagnosed with mpa. Her kidneys took the biggest hit. She no longer is spitting up blood. Her kidney function is really good now. Her creatine is 1.7. She also does the rituxan every six months. However, probably six years ago she had severe pain and numbness in her wrist. She was at doctors and they couldn't find nothing. I believe it was the vasculitis. Therefore I'm assuming the joint pain your dad is experiencing is the vasculitis. My mom is doing ok but from what doctor says it takes awhile. I was wondering what kind of physical therapy your dad is doing. My mom does none and I think she may benefit from it.

    • nguye184
      nguye184 brandi07352

      Posted

      Thanks for your response. Did she experience any symptoms such as small amounts of blood in her sputum in between rituxan every six months? it's relatively new for my dad so we're trying to determine (along with the help of our rheumotologist) of what signs should be concerning.

      As for the physical therapy - he's doing 3x a week exercising such as stairmaster machines and light balance work to gain his strength back from being in the ICU for so long.

  • dave170448
    dave170448 nguye184

    Posted

    Hi

    Sorry to hear that your Dad is suffering. I was diagnosed with Wegeners Granulomatosis (Vasculitus) twenty years ago. I'm still here but it's been quite a journey. This disease mimics other diseases and "fools" a lot of doctors. Most docs may never see a case. Aches and pains are quite normal I'm afraid - even after retuxin. Best advice I can offer is to find a specialist who understands Vasculitus. Are you USA based? If you are then google "Dr Peter Merkel"

    Good luck!

    • nguye184
      nguye184 dave170448

      Posted

      Thanks for the warm thoughts, Dave. We're fortunate enough to be working with a rheumotologist at the university of michigan hospital where they commonly see this disease. My dad lives in Michigan so it's quite convenient for him.

      I guess our main concern is NEW symptoms that weren't there before. He never had any pains or aches, just the lungs and kidneys issue. Now that he had his first induction period (about 2 months ago) there's some new symptoms coming up. We just want to make sure that it's not a worsening of the disease in between his first and second induction of rituxan between the 6 months...

    • marie96185
      marie96185 dave170448

      Posted

      You are right, most doctors do not know anything about Wegener's  GP

      I have had it 4 years now started at age 77, now  81 years old and the fatigue is the worst.   Yes to aches and pains, too...I took Rituxan twice a year a part, suppose to be in Remission but nothing like my old self.

      Have 35 percent kidney functioning, did not attack my heart but now I just found out the Vasculitis has attacked my lungs.....I now have shortness of breath and gone are the days where  i use to walk 6 miles every evening.

      Marie

    • dave170448
      dave170448 marie96185

      Posted

      Marie , greetings to you my dear.Gosh. 81 and battling this awful, dreadful disease!You have ten years on me, I turned 71 last month. Right now I'm dealing with extreme fatigue although I appear to be in remission. Back in 2014 had a really bad bout of flu ( I knew what was coming) Scratched my leg and a large scar developed. Turned out to be pyoderma gangrenosum -'s very hard to heal ulcer on my ankle. Up went my prednisone to 60mg per day. After 3 months my spine collapsed due to Osteoporosis.caused by the steroids. The ulcer took 18 months to heal with 3 dressing change appointments each week. So...it's a bit of a nuisance ain't it. Hope you carry on and enjoy every day you are given

      All the best. Dave.

    • marie96185
      marie96185 dave170448

      Posted

      Dave, you have been thru the mill...hope your 

      Remission last a long time.  This fatigue has caused me to give up my home and enter a Supportive Living Apartment house.

      Best wishes to you.

      Marie

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