Posted , 9 users are following.
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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deborah04855 Tona_S
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I had Rituxan back in April and felt fine throughout the treatments. After it was over however I started feeling totally wiped out. Then I started coughing whenever I took a deep breath. Then the terrible shortness of breath set in. My nephrologist was the one who sent me to get a stat chest X-ray. I left the clinic after my appointment and had just gotten home when I got his call for me to come back and be admitted right away because I had fluid in both my lungs. I was in the hospital with pneumonia for six days. They never found a cause, but I believe it was a side effect of the Rituxan. Please go get a chest x ray. You may have pneumonia
Tona_S deborah04855
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Wow! I never thought of that! Thank you so much! I will check with my doctor. I'm glad they caught yours and hope you are feeling better!
sarah65055 deborah04855
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I had pneumonia in July 2005. I had my first round with Wegener's in October 2005 when I came down with a bad sinus infection and I hurt so bad in my legs and feet that I could hardly walk. I was treated by an Allergy and Asthma doctor and went back to work in a month. But, I was not diagnosed with Wegener's then. In Decmember 2008 I came down with a severe upper sinus infection, lost my hearing in both ears, developed a bad cough, and had severe pain in my arms, legs and feet. What's so bad about this, I was seeing a rhemutologist and an ENT doctor at this time. I was told by the rhemutologist that I needed to get out and exercise. I was losing weight fast. The ENT doctor told me to go get hearing aids. I went back to the Allergy and Asthma doctor in June 2009. Immediately upon hearing me cough so bad, he ordered a MRI. I was put into the hospital that day. I wasn't even allowed to go back home. The upper left half of my lung was collapsed. They thought that I had cancer, but after 8 days of testing, it was confirmed that I had Wegener's. I and my two children were shocked, because I had continued to work for 6 months with this disease. I was working as a front-end manager in a major grocery chain. I was put on leave from my job the day before I had the MRI. My life has been rough since I was diagnosed. Someone would have to drive me 120 miles round trip every month, sometimes 2 or 3 times a month. I eventually got better, but I was never able to go back to work. I have spells were I get down were I don't think I can go on, but somehow I crawl back to my feet. I hope you never have as much trouble with your lungs as I have had. I was just thinking about retirement when I was struck down. Bless you! keeping posting.
philtw Tona_S
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Tona_S philtw
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lorrieb Tona_S
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Tona_S lorrieb
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Thank you! I am feeling better now. I think the step down from Prednisone is what's making me feel so bad. Only a few more months to go! Hopefully the lower the dosage, the less it will affect me. Thanks again for replying!
jac08 Tona_S
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Hi Tina and the others in this thread. I hope it's ok to butt in to your conversation? I was a "healthy" woman diagnosed with Wegeners in July 2016 and spent 31 days in the hospital, on the ventilator twice. I'm currently in the process of tapering off of Prednisone (hate the stuff for so many reasons, but also realize that it helped save my life). Anyway, it's nice to read posts from others dealing with this beast we call Wegeners.
Tona_S jac08
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Of course! and you're not "butting in"! That's what these discussions are for! I was diagnosed in November 2016. Luckily, the only time I was in the hospital was for the kidney biopsy (for diagnosis). Agree with you about the Prednisone. It's a necessary evil! Thankful for these drugs, doctors, nurses, everything!! I definitely count my blessings!
sarah65055 jac08
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jac08 sarah65055
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Yes, Wegeners creeps up on us apparently. We had been in the mountains in Colorado, riding bikes and helping with our two Grand babies two weeks before I was diagnosed. I had been to my PCP the week before and tested positive for the flu (probably a false positive). I started having breathing difficulties and my husband took me to the ER. Chest X-ray indicated pneumonia, but it was actually blood in my lungs. I was admitted on our anniversary😞during the weekend, which is not the best time to be at the hospital (things slow down dramatically) I developed a blood clot and by the time the surgeon was called, he told my family that he was not sure he could save it. (I know...crazy) But, he did👍🏻 Then, I had to be given blood thinners, that made the bleeding in my lungs worse. So, I was put on the vent. Came off ok and went to Rehab. Was there for two days before breathing problems caused by more bleeding started. Back to ICU and put back on vent. Medical team decided that they needed to put in a IVC filter and reduce the blood thinners. The filters job would be to catch any clots before they reached by heart. I also received 6 units of blood and two plasmpharesis treatments. Eventually came off the vent and was moved to a regular room. My doctor had gotten to know my family well enough to know that they would take care of me at home and that we needed to get home for healing to begin. My husband had enough PTO built up that he stayed home with me for the month of September. After being in the bed for 31 days, my muscles had atrophied to the point that I had to relearn how to walk. I had a PTA that came and helped with PT, but my husband did most of my care and rehab?. It took me about 45 days to start walking alone again. I was on FMLA for 4 months. I've had my first series of Rituxin since leaving the hospital. High heart rate is the most annoying thing. Oh, I also started losing my hair at the 4 month mark. My rheumarologist said that it's called terefluim efflusion (I think) due to the trauma my body went through. I've lost about half, but it is started to grow back now so I am thankful! Thought a wig was in my future! I have tapered down to 5mg of Prednisone, so the moon face and most of the puffiness is going away. I feel really good at this point. I do get tired, but it's manageable. Anyway, I'm glad to find you guys...I've stayed away from reading too much about Wegeners in the internet. I'm just staying positive and am thankful that my journey didn't end at the hospital. I am thankful and grateful to be here!
jac08
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Oops, the blood clot effected my leg. I left that part out of the above. But, surgeon was able to save it and restore blood flow. Other than some nerve damage, I'm good!
sarah65055 jac08
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I'm so sorry you had to go thru all of that. My left upper lung collapsed but I did not have bleeding in it. This disease affects everyone in different ways. I feel this is why researchers can't find a cure for it. Do you know of anyone in your family that had these symptons. My worse sympton is sinus infections and vertigo. My whole family has sinus problems. I hope you do well and get better.