Procrit Warning

[mikesimon]

Medscape Alert
Safe Dosing Revised for Procrit Based on Hemoglobin Levels

Dec. 9, 2004

[cuteus]

thanks for that input, very interesting indeed, and I suspect stress big time, now that I found pet care while on vacation the flare up is going away, plus I took some antibiotic for tooth ache at the same time, so I am guessing a  bacteremia also. I will have to keep tab of when it recurs.

[DoubleDose]

I have had the same 'lupus-like' rash periodically since ending tx almost 15 monthe ago.  It consists of red, almost 'sunburned looking' cheekbones, and often,irritated eyes to go along with it.  I notice that during flare-ups of this rash I feel worse in general, stomach gurgling, neck pains, dizziness, more pronounced tinnitus, clumsiness,etc.  I am convinced that it is a general autoimmune reaction, developed from the long term interferon therapy, and maybe originated in milder form many years ago from the HCV itself, and the bodies' reaction to it, by creating a low level auto-immune state.

My rash often appears a day or two after heavy exertion, high stress, turmoil at home, or my several occasions of very light drinking (several glasses of wine).  We may be programmed to have a tendency toward auto-immune flare ups.  That is my conclusion.  I did see a rheumatologist, and came up with the typical post-tx 'positive ANA' but my doctor said it's not exactly Lupus, and definitely not RA, or other auto-immune disease.  He thinks that it is specific to post interferon recovery, and would not predict it's long term course or potential duration.  He said that the jury is out.  Many cases he has seen are very similar, and seem to present as a generalized 'mild inflammation' in various parts or organs of the body.  He has had biopsies done, which tend to show that same 'mild inflammation'.

I also ger a slight parotid gland swelling during flare- ups,
similar to Sjogren's Syndrome symptoms.
Maybe the researchers will understand this problem in the future, and find ways of treating it, or at least predicting it's outcome.    DoubleDose

[cuteus]

I will get that test and the rheuamtoid factor checked after the PCR test. Maybe all of the autoimmune tests that were done years ago also. Glad to hear you are feeling better.

[mikesimon]

My hair is starting to get wavy but as of yet it is not really curly. It was so straight and lifeless that I am thrilled to be getting some body back. I think it will improve over time. I'll keep you posted on the hair progress because even in light of all the serious downsides of hepatitis and tx vanity still manages to rear its head. Mike

[Bob L]

Hi Cuteus

Glad you are done with tx. Please don't let your head take you there. You know the facts well, whatever will be will be. We did our best and now we will see where we are at. But don't let your head dictate.

I am off Interferon/Riba and feeling a lot better. I can see straight, I am thinking clearer and have gained 10 lbs back in 3 weeks, heck I went down to 140, I was 145 in Jr High. I will go see Doc on the 17th for first round of tests so we will see then.

I still have some problems but I just can't personally blame everything on Hep C or tx. But as you say it could actually just be something simple. Now that I think about it about a week off meds I got a deep red line under my left eye, I kept telling everyone my wife finally hit me for all the stuff I put her thru on tx (just kidding) but I had no idea where it came from. She thought I might of hit myself during sleep or scratched it. I have no idea but it went away in about a week.

Thanks Mike for the update on procrit I take my last shot of that on Tues. I am still winding down the anti-depressants and xanax and ambien. It just takes time. Hey Mike did you ever get your curly hair back? Mine was always wavy and thick but now it is straght and thinner. I started out with a lot so it is ok but not wavy yet. Vanity, Vanity. Oh well we are human still aren't we?



God Bless

Bob L

[cuteus]

yes, TY Mike.
I had read about the Procrit, anemia and high levels of hgb when they prescribed it for me, and it prompted me to experiment on my own on dosing and lengthening of doses, because I became afraid of both low and high levels of hgb.  My dr was only testing my  blood monthly, so I was not been monitored as close as I would have liked, I had to improvise.
Do not try this at home without your dr's approval, right Fubarcat?

Other concern:
I am mortified at a redness/rash that has developed in my face this week, one eyelid and cheekbone became reddish. This morning it is both cheekbones, and both eyes, one worse than the other. I have read a thread here that asked about post tx rashes, anyone knows where it is?
When I looked at the rash this morning, I am thinking hep c is back(full dose tx was over 11/8, then 2 wks of half dose interferon, so it is about 2 wks with no meds), also thinking Lupus because of the butterfly look to it.  you know, all the paranoias and illnesses that could possibly be are flashing through the mind. I
t could not be something as simple as an allergy or a reaction, or low grade bacterial infection, oh no, too simple...

I am flying to see my family next Friday and stressing over it and over finding a rabbit and bird sitter (one which has an injured leg now), helping with wedding favors  for my daughter....maybe is a STRESS rash?
Sorry to vent too much, it is dreary weather and it is adding to all of the above.
Try to have a great weekend, everyone.;-]

[jonihs]

Glad to see you are doing well. You are missed.  Happy Holidays
               Joni

[Califia]

Mike, thanks for posting this.  Notice the press release doesn't get into the reasons for the dosage reductions.   My guess is the heart stress, but given the over-stimulation of bone marrow over a period of time, longterm fears about cancer would also be reasonable.    

I'm in the middle of healing a  bone fracture while on Procrit and am beginning to think that  it's having a huge impact on the experience.  The bone is healing well on xray, but the pain is relentless and generalized.   This is probably weird testament to the efficiency of the drug?

As for the skin reactions, post-tx and during, it's really something when your face and body turn into pages from a medical encyclopedia.  Sort of terrifying, comical and humiliating all at once.   Good lord.

[DownThisRoad]

Thanks.  The whole 56 weeks on hep tx and Procrit, my heart pounded.  I don't know which med it was from, I just know that my heart raced and pounded like never before.  And oh, the leg pain I believe was from the Procrit.

I could not have continued and completed my hep meds without doing the Procrit.  My rbc level was just too darn low.  I didn't question anything when my GI told me I had to inject the Procrit. I just did it and moved forward with my goal to finish as long as I could possibly handle with the riba and pegasys.

Take care and happy holdiays.  Glad to see you are still around on this forum.  I don't post much these days on this site.  But I do still check in ever so often.

All my best to you, always !
`debra

[cao]

Thanks for posting!  That's good to know.