Symptoms worse after remission

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I've been in remission from wegeners for about 3 weeks after 4 rounds of Rituxan in December. I'm stepping down my dosage of Prednisone. Went from 60mg to 50mg and now am on 40mg. (Monthly). I feel worse than before. Very weak and shaky. No energy. Headaches and a dry cough. Short of breath after any little activity. Is this normal? Part of the Prednisone step down? Or should I be concerned?

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  • Posted

    Hi

    I relapsed last June and it has taken me until Dec to get back under control from 6mgs back up to 20mgs steroids

    I think my lungs have been affected through the past 6 months as I seem to be short of breathe these days but other than that I am on

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    • Posted

      Trying to read your whole reply, but it ends at "but other than that I am on".  Anyway, thank you for replying. I really think mine is this Prednisone step down.  I'm feeling a bit better today. This is rough.  People think because you're in remission you are feeling fine and should go about your business, but definitely doesn't work that way.  Thanks again for replying and I hope and pray things get better for you!  God bless!

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  • Posted

    My husband was the same every time he tried to reduce the prednisone he started to feel worse I would be concerned but discuss it with your drs as each case is different
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    • Posted

      Thank you!  Yes, I really think it's this reduction in prednisone because that is when it hits me the worse.  I went from 50mg to 40mg last week and Saturday just hit me really hard!!  I hope your husband is doing better!  Thank you for replying!

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    • Posted

      No tona sadly passed away in August last year he had a narrowing of the trachea which closed completely causing him to into cardiac arrest which he didn't regain consciousness

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    • Posted

      I am so sorry to hear this!!  How horrible!  My sympathies go out to you!  God bless!
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  • Posted

    I started out on Cytoxan and 80mg of prednisone. I got so weak that I couldn't do anything. I was warned that I would need in home health care, but my family helped me. I was so swollen from Presisone, that I looked like a bull frog. But, you will get to feeling better after the treatment. I am so sorrry you have this, it's a awful disease. I hope you feel better soon.

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    • Posted

      Thank you for replying.  I know what you mean about being swollen.  I don't even recognize myself in the mirror anymore.  I really think my weakness/.low energy is from the step down of the Prednisone.  I just went down from 50mg to 40mg this past week and it was rough, especially Saturday.  Absolutely NO ENERGY!  I take it you are feeling better now and are you still on any dosage of Prednisone?

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    • Posted

      No. I am not on anything as of now. My doctor gives me a steroid shot occassionally. But, I really need to go see a Rheumotologist. I'm afraid that life's challenges are sometime worse that the disease. Bless you. Once you get thru with the treatment you will feel better. Keep posting.

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  • Posted

    Hi.

    Sorry to hear your story. I've had WG for 18 challenging years. I've had a total of 6 Retuximab (like your med) over the last 3 years. Felt really good for a few weeks following the first 3 infusions and then the feel good feeling went after each of the next 3. The infusion causes real shortness of breath too. I've been on steroids from the beginning and they they have given me Osteoporosis which caused my spine to collapse. So anything you can do to reduce steroids is strongly advised. Good luck - keep posting!!!!

    Dave

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    • Posted

      So sorry to hear about your Osteoporosis and your spine!!  How awful!  I definitely want to get off of Prednisone if I can.  If i have to put up with these awful side effects, so be it.  I'm also taking a calcium/magnesium supplement because I heard Prednisone depletes you of calcium and can cause Osteoporosis which you have just confirmed for me!  Again, so sorry you had to go through all of that.  I am new to this disease and it is just awful.  Life long, so many different symptoms, etc.  So glad we have this forum and can talk with others that are going through the same thing.  Thanks again for replying.  Take care and God bless!

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    • Posted

      Hey, thanks for responding to my post. I feel so along. I don't think my primary care doctor listens to my complaints anymore. This disease effects you from the top of the head to the end of your big toe. I've been off steriods for about 2 1/2 years. I had a steroid shot, a flu shot and a pueumonia shot all at one time in 2014 and I ended up in the hospital with a small stroke. I got ok, but I'm very nervous about shots now. I hope you get to feeling better. Have faith. Keeping posting.

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    • Posted

      So sorry to hear about your stroke!  Glad you are ok though!  I am feeling better.  I think it must be the Prednisone dosage step down. Each time that is when i feel the worst.  Only 3 more step downs to go!  Hopefully they'll affect me less each time since the dosage will be lower.  Here's hoping!  Thanks again! Stay strong and you have faith too!  God bless!

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  • Posted

    Hi I was diagnosed in 2015 and had the same treatment as yourself. I am afraid it might be part of the prednisolone steps. You might be coming down too quickly which can be very dangerous speak with your doctor and make sure you research the signs of adrinal crisis. Although I did have a cough, headaches, weak and felt rubbish after treatment for a week after. Wishing you all the best. Xxx
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    • Posted

      Thank you!  I think it is probably the Prednisone reduction as well.  I will check out the adrinal crisis.  Thank you so much!
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