How long before you felt better from Rhituximab treatments? Fatigue real bad no energy

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How long after Rhituximab treatments did you start to feel better? So fatigued just want to sleep and how long before in remission

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  • Posted

    Sorry for block caps not working well from.phone
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  • Posted

    Hi there dog7

    for me it takes at least a month to be honest but I also know that I'm due a "refill" about a month before I get it same symptoms fatigue little energy achey joints shoulders knees ankles mainly nothing serious just annoying.

    as for the remission side of it like everything with this disease it's different for everyone or so I seam to hear.

    What I will say is trust your Dr but there again I'm lucky to be near Adambrooks and the specialist here.

    Good luck with your treatments and enjoy your good times when you feel more normal again 

     

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    • Posted

      Thanks for info. Are you working? Not sure when i will feel well enough to go back to work.

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    • Posted

      Fortunately or unfortunately I work for myself so I was able to sort of pick and choose the next job so took an easy job to come back to two months after been in ICU for two weeks and kept in hospital for another two weeks, TBH I went back too soon but it was that or Jerrmy Kyle, no competition there!

      Its a slow road I find its only a year since I was admitted some days are better than others but I feel more normal each week it does amaze me how quick your body recovers and adapts but as I said before it differs for everyone but a good positive attitude I think helps be positive and push yourself but learn when you do do too much.

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  • Posted

    I had my first 4 treatments in July/August. I been dealing with exhaustion and fatigue ever since. I changed my diet up, cut out sugar, dairy, pork, and limited red meat to once a week. It does help and I do have more energy. Definitely not the same energy before this whole ordeal. I have some really good days and sometimes I just do too much and it takes a couple days to recover. You don't know if your doing too much until it's too late. You got to just take it easy.

    I just did a 5th dose of retuxin about a week and a half ago, going in for round 6 this week. I did a dose on Thursday and went back to work on Tuesday. It was definitely a long 4 day work week and I was pretty exhausted but I got through it. Hopefully I get through these next couple weeks and I can get back to normal. I'm supposed to do another 2 treatments in 6 months and hopefully be done with it.

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    • Posted

      Thats good your back at work. The Rituxan didnt work for me at all Doc said made me worse. Had sinus surgery November 2015 that helped now I have to get tear duct surgery....very scarry. Off work again since Oct 2015. I'm wondering how long it took people who relapsed from this disease to get into remission and what meds they took to get into remission....the fatigue is horrible but poor sleep with this disease. I do not like taking meds way too many side affects
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  • Posted

    Dog, how are you feeling now, any better?  are you in GB or USA? I just got diagnosed Wegrner's and I'm about to get my 4th and final Rituxan treatment   I'm also on 60 mg of Prednisone daily which should be tapered off by fourth month. My symptoms are some hearing loss, Raynaud's phenomenon, and neuropathy in my feet. I have minor kidney involvement and well, confirmed by a kidney biopsy.  I agree with Nondas that sometimes you do too much before you realize it and pay for it after. So since you are now done with Rituxan, did it work?  I'm still in the middle of it and see no difference. 
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    • Posted

      Hi Deborah. No doc said Im worse since the rituximab treatments. Clearly I must not be in remission and getting tear duct surgery soon. Just curious my treatments were once per week 600 mg for 4 consecutive weeks how are your treatments scheduled and doses? I had very bad side affects to prednisone both times i took it and rituximab wore me right out and clearly did nothing for me. So sorry to hear your going through all this. Its very difficult i know. Take care
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    • Posted

      I was on 610 mg Rituxan for 4 consecutive weeks as well.  The Rituxan did not give me any side effects after each treatment, however after the last one I did start feeling run down.  My last treatment was on April 22 and on May 5th  I was put in the hospital due to pulmonary infiltrates.  I was in seven days on every antibiotic know to man.  Nothing ever grew on the cultures though.  To this day I'm not sure if it was really pneumonia due to an infectious agent or infiltrates due to the GPA itself or the Rituxan.  The Prednisone has reaked havoc on my body as well.  My muscles are weak, my skin is thin (looks like 80 year old skin on arms), my hair has thinned as well.  and my face looks like I have implants in my cheeks and under my chin!!!!!  I have also gained 20 pounds, and my blood glucose is  high. I have peripheral neuropathy in my feet which I think will never go away.  They are tapering my Prednisone dosage.  I'm down from 60 mg to 30 mg a day. Hopefully the side effects will start  going away.

      All in all, though I'm feeling pretty decent considering the diagnosis!!

      I hope you are feeling better.  Take care of yourself and make the most of those times when you are feeling well as we never know what's coming next, do we?

       

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    • Posted

      Hi deb, diagnosed with Wegener's in August, been on 80mg of prednisone until 3 weeks ago. Weaning me down, 2 weeks at 60 and now my 1st week at 40mg. Man the stuff us kicking the crap out of me, puffy puffy face, hump on the back of my neck, swollen ankles and no sleep. Not to mention the mood swings and the hunger. Went through 4 infusions of Rituxan, 700ml. Feel really weird. Last infusion was 9/27. I don't know which is making me feel so lousy, the Prednisone, the Rituxan or the damn disease. See my doc in 10 days.

      I have kidney involvement too, hearing loss in my right ear, clicks on and off.

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    • Posted

      Weaning off of prednisone was definitely tiring. I was on 80 mgs a year ago and eventually went down to 20 for 6 months. Finally went down 2.5 every 2 weeks. I definitely felt super fatigued every time. I usually tapered down on fridays and had the weekend off to get some extra zzz's. been off for about 2 months. Feel back to normal again.

      I did 4 infusions in 4 weeks last august. Then 2 again in February spaced out 2 weeks. Definitely felt pretty run down after the 2nd.

      Got a bunch of blood work and CT scan in my lung. Everything cleared up and looks good. Was supposed to do another 2 doses of retuxin but doctors are just gonna wait another 3 months and just do blood work. Hopefully I don't get any flare ups and don't have to deal with any more bs.

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    • Posted

      Do you have Wegener's? Glad to hear there's a light at the end of the tunnel. Just want to start feeling better.

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    • Posted

      Hi, you seem to have a lot of the same symptoms as I do. There is such a variation of presentations for this disease. Almost seems like different conditions. For me the prednisone is the worst. It is a miracle drug but the side effects are the pits! I've gained 32 lb since April and the fat checks just will not go away. I'm now on Glimipiride for Type II Diabetes brought on by the prednisone. The Rituxan tired me out but no other side effects. Right now I'm on 7.5 mg of prednisone and will go down to 5 mg in a month. The docs were going to to the booster round of Rituxan this week but my immunoglobulins are still low and B cells are 0% so they're going to monitor me with bloodwork and see in six weeks if I need the Rituxan. I am not sure if my B cells still being non existent after six months is good or bad. Good thing is, other than the numb feet and finger tips and on again off again hearing problems I'm feeling pretty good. I'm a teacher so my days are long and exhausting, but I'm hanging in! I hope you're feeling stronger soon.

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    • Posted

      Dog, I hope your tear duct surgery was successful. My Rituxan was the same as yours. I am due for the booster round but my B cells are still 0% and Immunoglobulins still low, so they're holding off. Bloodwork in six weeks will determine if I'm ready. I hate prednisone. It's made me fat, an insomniac and Diabetic. I did not have very bad side effects from the Rituxan but it did zap my energy. Luckily I'm a teacher and it just so happened to be on summer vacation. I'm back at work now.

      Hope you are doing well.

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