Posted 4/27/2007 12:29 PM (GMT -6)
Hi Averylynn,
   Welcome to the forum. I'm sorry your going through this...((Hugs)). I came across this site when I was researching Lupus Pneumonitis and Cytoxan Infusions over 2 1/2 years ago. I agree with the others about talking to your doctor about your fears of this dx and the treatment options.
   When I was dx with lupus pneumonitis I was very scared too from all that I read about it and the side effects of Cytoxan. I was very hesitate to get the treatment but, my rheumy insisted that it was what I needed to survive or prevent a lung transplant.
   With my very first cytoxan treatment I was admitted to the hospital over night for evaluation. Apparently they base the dose on your height and weight. I had a bad reaction from that treatment which  caused severe chest pain and my heartrate to drop in the low 30's. The dose was too high for me even though it was right for my height and weight at that time. Of course, they checked me from top to bottom to make sure I was ok otherwise. I was very weak from that treatment and reaction and slept alot over the next several days until my HR got back up. That scare prevented me from going forward with the treatments at that time but, my lung functions were dropping rapidly so I decided to try it again.
   Almost 6 months later I got my second treatment. I was admitted to the hospital again because of the reaction from before but, was given a lower dose and it was much better. After that, I got them on an outpatient basis in the Oncology dept once a month for the next 5 months. The main side effects that I had were some nausea, flu-like symptoms and weakness for a about 5 days after each treatment. Also, some hair thinning during the course of treatments.
   In my case, I think the treatments were well worth it. My lungs were completely clear after the last treatment and I could breathe so much better.
   I know this is very scarey for you...It was for me as well. Read and research all you can about this, talk to your doctor and weigh all the pro's and con's. I will help you in anyway I can as well as the others. If I can answer any questions for you I will be more than happy too.
   Good luck with your treatment and we will be here to help you through this rough time. Please take care and keep us updated. You will be in my thoughts and prayers.
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 4/28/2007 12:05 AM (GMT -6)
Hi Avery,

I'm not posting much at the moment, just reading as I'm not feeling very well. However, when I read your post I felt I must add my 2 cents.

Any time something is that rare my advice is to always try to be seen by doctors at a university/teaching hospital or by a dr. who specializes in treating that specific manifestation of lupus. IMHO, it is worth the time, trouble and expense to get the specialist's opinion.

It is scary stuff. I'm really glad you are educating yourself. That is worth a million dollars! Good luck and keep us posted.

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 4/29/2007 10:43 AM (GMT -6)
I will definitely be talking to my rheumy tomorrow about how I've been feeling as well as bringing up my concerns about treatment. I am also thinking about going to the health sciences university to see what they may have to offer. I was diagnosed on a temp insurance and have used well over it's worth. There is a medical insurance pool here in Oregon I should be able to get on, but I fall into a pre-existing condition clause for the next several months.
Thanks for sharing your story Babs, that is something to ask about for sure.
Emmie, thanks for the suggestion, I never really thought about going to the university hospital.
I think for the meantime I am done searching for information that could lead me astray.
Once again, I appreciate the information an I hope you are all feeling well.
Diagnosis:  Lupus Pneumonitis with Chronic Pulmonary Hemmorrhage and Anemia, Polycystic Ovarian Syndrome, Migraines  
Medications and Supplements:  60 mg Prednisone, 100 mg Imuran, 1800 mg Calcium w/ Vitamin D, 25 mg Prilosec, Iron pill 2x daily, albuterol inhaler, 50 mg visteral, 500/5 Vicoden, 25 mg Phenergan, Midrin, Imitrex

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