[Blood Vic]

Hi Gina,

Jan 2, 2013

Latest update ... in remission for 1 year & 1.5 months now. The exjade stopped reducing my iron. I am letting blood now to bring my iron down. I think my immune system was depleated and traumatised and this put me into remission. I feel prednisone is the key but it needs alot of help and over long time periods was not very useful. The cyclophosphmide by IV may have weakened my immune system. 8 pints of new blood ... maybe there was something special in that but getting down to 50 hemo(Canadian scale 60 is critical) and a 100mg dosage of prednisone ... was on antibiotics for a tooth infection? Some drugs boost the effect of other drugs. This is risky mixing drugs but I found alcohol boosted the affect of the prednisone. Sometimes prednisone had a huge but short lived effect and sometimes it didn't have any affect. I had been on it for a number of times over the 2.5 years. I reduced my usage to 100 or 50mg dosages over 5 days to avoid the effects of coming off it which were rough at times. Over longer periods month or two I would be 50 or 30mg/day.

My PRCA had gone into remission after 2.5 years. Not sure why. I was on 5mg/day of Prednisone & Exjade. No blood transfusions since mid November.

Just enjoying the break from 2 pints per week. One week in November I had a big crash & received 8 pints in an eight day period. Its been smooth sailing since then.

My story ...

No bones broken. Alott happened. For three months prior Aug 15, Sept 15 & Oct 15 I received cyclophosphmide by IV. With each treatment I took 5 days of prednisone... 100mg for 2 days & 50mg for 3 days. After three months there was no response. ( I had previously been on prednisone 30mg for 6 weeks in June to mid July with no response).

At the end of October I had a root canal done. The tooth had died & there was some infection but no pain. I was on erythromycin for 10 days. (in sept I had been on penicillin V for 10days for a tooth ache.

I had blood transfusions to get my blood up to 80 (wanted 100) but couldn't get it higher prior to a vacation.

I went to Maui for 1 week. I got back Nov 3 & my hemoglobin was at 50?? Critical. I went into emergency & got 3 pints of blood ... 2 more mid week & 3 more weeks end. My reticulocite count ranged from 0 - 5 over the last 6 months and I was getting 2 pints of blood per week. I was extremely healthy prior to getting PRCA idiopathic.

Nov 15 I took 100mg prednisone for 2 days ... My retic went from 0 to 50 & was over 100 in 4 days. I was on 50mg prednisone for 3 days & dropped 5 mg per every 3 days down to 5mg per day. My retic stabilized at 50 & my Hemo rose to 140 ( low normal).

Ps I will be 62 in April 2013.

Ps 2 ... My theory is eating lots of salads, less red meat, beer & coffee and drinking lots of water has helped the prednisone (and combination of other events) to effectively restart my immune system. Lots of questions & theories? Was there a bacteria, infection or cancer lurking that was killed off by all the treatments? Or was it alot to do with getting 8 pints of blood in one week? Or partying on prednisone for an extra kick? I am feeling or healthy and enjoying Gkids.

Ps 3 ... I am suspicious that mine was caused by an undetected parvo.

I hope this helps,

Terry