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Rash Behavior

How's this for braggin' rights?  My nurse announced yesterday that I have tied for first place w/ another patient of hers in the "Highest Number of Side Effects in the Shortest Period of Time"  competition.    Hah!    Indiana, maybe when you're tipping that cow for Raheem you can give it a little pat on the behind for me.   So here's the latest:  what I thought was merely Riba Rash is now turning me into lobster woman and showing up in the most delicate of places.  (Lou, I will leave the rest to your well-endowed imagination.)    The nurse suspects an allergy to interferon, madre de Dios!, and wants me to hold the next shot, which would be #20.    I countered by suggesting it was an allergy to the preservative in Procrit, so we're holding that shot instead.   If no difference, THEN we're withdrawing the interferon for a two-week hiatus to see if the reaction clears.   Apparently we're trying to rule out Stevens-Johnson syndrome.  The rash indicates a serious autoimmune reaction, and the nurse (after conferring with the gastro)  is worried about skin loss and the possibility of something developing next with the lungs.    Me, I want to put up with it and slog on ahead.   The doc and nurse want to terminate tx if the rash doesn't clear.    Yes, terminate tx.  

Anyone out there with experience with drug reactions to Procrit?  To interferon?   Missing a shot or two at this point in tx?   I'm 1b going on shot 20/48.  Officially cleared at 16 weeks .  Any suggestions?
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Avatar universal
Exactly right...........it's ALL about "survival" isn't it? Between us and the docs...the priorities are different. WE are worried about killing the virus and limiting any long-term damage from the meds. "They" are worried about possible lawsuits and possible complications from the meds. It's a game that we play with a lot of subtle parts to be dealt with. NOT fair to do this to someone on tx who can't think straight! That's why we set our priorities BEFORE we start tx.....to kill the virus. Quality of life HAS to be sacrificed during this time. We prepare for this.
This IS a WAR. It's us against the virus. THATS the game we are playing. Everything else is secondary....if you want to win. I remember the Viet Nam war. The politicians set the rules. But when we were in the rice patties and the jungles....there were no rules. It was all about survival. There were NO po;iticians out there in the jungle....no Generals....No protesters. Same thing here. Do what you have to do to win the war and survive. The docs don't have this virus.....WE do. It's too easy for them to lose sight of "the Prize" in their effort to cover their a$$. That's why WE need to CYOA. Nobody else will.....
Yeah.......as far as my "relationship" with Bertha.....the wife is pretty comfortable with that. I've been married for about 27(?) years so she isn't too worried about any competition. Bertha, on the other hand, seems to be taking this all Wayyyy to seriously. I must say, her eyes look awfully nice lately.....and she has apparently been bathing before she comes out for the evening grazing. Gotta figure out what to do with that tail though. It's "SO"in the way"......
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Interesting.   You and I must have read the same patient's survival handbook, especially the chapter on "All Professionals Are Crackpots, At Least Some of the Time."    Playing both ends against the middle, eh?  You're a cunning one, and them poor cows obviously don't have a chance.

As for dear Queen Bess,  maybe your wife is actually glad to have a little time out?  Hey, as long as all three of you are happy with the arrangement....
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WHEW!!  Ya dodged a big bullet there baby. You did exactly the right thing by getting another opinion. I paid out of pocket to have a second Hep doctor as a "consultant" all through my tx. My 2 docs were almost opposites in their approach to Hcv tx and how to handle the sides. As I progressed through my tx I would get opinions from both on how to handle my various problems.....and then decided for myself on which approach to take.  Always keeping my eye on "The Prize"....to clear the virus without causing myself any permanent damage. By doing it that way I was albe to keep my doese at good levels and keep the extra meds at a minimum.
I see WAY too many folks just happily going along with whatever their doctor says.....and not thinking for themselves at all. Too often this does not work out in the patients favor. As I have found you to smarter than the average "bear", I was not too worried that you would get better info before allowing your tx to be altered.
"Unusual" side effects must always be checked out closely....but that is where too many doctors fail us. They know that lowering or stopping the tx meds will probably help whatever side they are worried about, but that does not help us to achieve our ultimate goal.....which is elimination of our liver disease.
Congratulations to you for using your head and sticking to your guns on this one. I'm happy to see that you won that round in this long fight.
Oh yeah.....Bertha (queen of all cows)says "Thank You" for the pat on the a$$. Maybe I'm spending a little too much time with her lately???
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Naw, worry not, you didn't scare me, and neither did Indy with his talk of cryo and lupus.   You were very appropriate, and frankly it's far better to be taken seriously than not.    Btw, the first thing I did after leaving my RN's office was to run a search on S-J Syndrome, and that offered thrills aplenty.    Luckily, my skepticism about her dx led me in the right direction.

FYI, I was prescribed a strong hydrocortisone cream,  Clobetasol Propionate Cream, which I've chosen not to use.  The itching is tolerable, and I don't want to risk thinning the skin in the application area (because of  cortisone-reduced blood circulation).   You bring up a good point about immune suppression as well.  I think that's why usage is limited to two weeks.    Me, I'm sticking with herbal ointments.  The prescribed antihistmine is 25 mg of Hydroxyzine Hydrochloride, which is definitely causing drowsiness and only mildly effective.    Compared to anemia and thyroid problems, however, this is an easy walk in the park.
  
Thanks for all your support!

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Avatar universal
Given the high stakes involved, I decided to buy myself  a second opinion, as my HMO hadn't give me much of an opportunity to question the treatment RN's diagnosis:  there was no review by the treating physician, no referral to a dermatologist, no nada.  Just the orders to drop a shot or two.  So I consulted with Robert Gish's transplant group, and they were nonplussed about the splotchy skin.  Thought it could be riba-related,  assured me it was not S-J or any other evil development,  and wished me well with the rest of treatment.    And, by the way, I was seen by a hepatologist--these people don't mess around.   So now I have a powerful bargaining chip w/ the HMO personnel.

I feel a little sheepish about all the melodrama, but the real moral of this story is about not taking "no" for an answer.  Too bad I had to go outside my HMO group, but at least I had an alternative available--and a great one at that.    All it took to fix this troubling situation was, to quote Woody Guthrie, a little Do-Re-Mi.   And a bit of unnecessary stress, thanks to a very nervous nurse.  

Onward into the fog....
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Avatar universal
great news!    i hope my "SJS-possibility" post didn't scare you unnecessarily, but it's always good to be fully aware of the various reactions that might be associated with your condition.   you did a great job of finding a second opinion so rapidly and i'm sure you feel much more at ease with the situation now -- hopefully the consultation wasn't too expensive.    let us know how the rash is behaving as time passes -- perhaps your body will become more tolerant of the drug(s) that are irritating it and things will calm down on their own gradually.   topical and/or internal relief (through various meds) might be available through a dermatologist.   there are cheap OTC preps like generic claritin (non-drowsy antihistamine to combat itching sensations) and topical creams such as cortaid (for itching/inflammation) that might be simple ways to help.   doctors sometimes prescribe more potent cortisteroids to rub on when they feel it's warranted -- with these, more of the active ingredient is absorbed through your skin/mucous membranes into your bloodstream and theoretically this can supress the immune system, but i'm sure a good doctor will take your condition and interferon tx into account whn deciding which medications are appropriate in your circumstances.   good luck!

stan
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Avatar universal
Hi, Califia,
I'm awfully sorry you are suffering, and I hope this will be resolved without danger to you, or having to bail out of tx.  This just is not fair; you're holding up your end with such courage.  I'll be holding you in the Light.
Maj Neni
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I am so grateful to you all for your concern and your wise suggestions.   At times like this you really discover how important a community of support can be.  Truly I will feel as if  my whole extended family will be marching in with me when I  enter the next medical waiting room this afternoon, and this offers great comfort.   It would be too easy to be discouraged, and I can't share this with my friends who have noticeably disappeared since I began treatment.    They've all averted their eyes...    

On my own I decided to pay for a 2nd opinion and yesterday I emailed Robert Gish, MD.   He shares my HMO nurse's concern and is arranging for me to come in this afternoon.  He, too, mentioned dose reduction or termination and used the words "worried" and "serious."    Stan and Indy, you can start laying bets now as to which syndrome is going to be R/O'd here!  

Even though nurses are frequently more saavy than docs,  it did bother me that  given the high stakes involved, the HMO doc did not even want to exam me and left everything in the hands of his RN.   They wanted to hold off a referral to a dermatologist  until medication had been withheld, certain that a good dermatologist would recommend doing this anyway.  

So that's the story and I'm trying hard not to let the monkey mind take over and invent too many scary future scenarios.     All I know is I want to beat this thing for once and for all and am trying to stay calm and in the light.

Bless all of you who have shown me what real fortitude and courage are.

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Avatar universal
Please be very careful in considering proceeding with tx if there's any possibilty that you might have Stevens Johnson Syndrome -- a friend of mine developed it years ago after reacting to anticonvulsants for her epilepsy and it was an extremely rough period for her.   i have deep admiration for your fortitude in wanting to push forward with tx -- but the doctors have every reason to be cautious out of concern for your health.   please follow the link below for some info on SJS -- it's kinda long and split into separate sections so you have to scroll down a lot.   i'm sure there are many other sites out there too -- this one just happened to be the top "non-ad" google result.

did you have any "flu-like" symptoms (over and above what the meds might give you) a couple of weeks or even a couple of days before the rash began to expand dramatically? sometimes these can be a harbinger of oncoming SJS.   anyway, my intent is not to alarm you excessively, just to make sure that you have researched SJS somewhat and understand just how serious it can be if the potentially offending drugs are not removed immediately.    i sincerely hope it is not SJS & that you eventually have a favorable outcome in this matter & are able to contine tx.    take care......the link:

eMedicine - Stevens-Johnson Syndrome :

http://www.emedicine.com/EMERG/topic555.htm

stan
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Avatar universal
Damn Woman.....I take my eyes off of you for(what seems like) just a few short weeks....and look what happens! The "normal" Riba rash happens on the UPPER body. I had it VERY bad on my tx. What you seem to have developed is possibly some sort of cryoglobulinemia that is possibly progressing on to vasculitis. Vasculitis is NOT a good thing. The key is that vasculitis usually shows up on the LOWER body. With that stuff, the rash is the LEAST of the worries. Vasculitis can effect all kinds of major organs. Scary stuff. They thought I had it about 1/2 way through my tx when I had a BADD rash bout and sent me to a dermatologist who ruled it out. Maybe you need a second opinion from one of those kind of specialists. That dermatologist gave me Fluocinonide Cream to help the skin and Zyrtec for the itch. The Zyrtec stopped the itch in about 10 minutes. I'm not sure how much the cream helped but as long as it didn't itch I didn't care.
Your problem still sounds like it's all autoimmune related. If they are so focused on the interferon as the culprit, perhaps you could make a deal to simply cut down on your dose(like by 1/3) for "A FEW" weeks....like 2 or 3....and see what happens. The interferon is most important early in tx and the Riba rules in the later stages. You still need both but the priorities change as we progress through tx.
"Pat" the cows a$$??  Heck....I would KICK the cows a$$ if I thought it would help you!!! Here are a couple of articles I looked up quickly that may give you some food for thought.....

  http://www.hamline.edu/lupus/articles/Lupus_and_Vasculitis.html

http://dynamics.org/~altenber/cryo/EMAILS/

My computer problems continue so I don't have all my research sites back yet. I will e-mail you as soon as I get my addresses back on this DAMN thing!
And last.....it's a lunar eclipse tonite. Perhaps if you go outside and allow the affected area to bask in the glow of the eclipse...the "cosmic rays" would have an effect. Of course, you will need to post pictures of this event......for the benefit of ALL the heppers everywhere....or at least Lou.

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Avatar universal
Hi califia,

Have you seen a Dermatologist or tried any of the over the counter meds like Benadryl?  These can sometimes help.

If not, there is a script med used by many docs to treat these rashes called Hydroxyzine or Atarax, different names for the same med, I think.  Ask your doc or Dermatologist about this or research it yourself.

I would only skip doses as a last resort.  The more you keep to 100%, the better your odds for svr.....and this is the gold at the end of an off color rainbow.  You are already on your way there.

Best to you and I hope your sides get better,
Steve
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Avatar universal
It wouldn't seem to be sun related if the rash is on parts of your body that are not exposed to the sun.

I'm sorry that I can't be of much help but you may want to consider seeing a dermatologist.  My gastro was considering discontinuing my tx but he first sent me to a dermatologist.

It proved to be a smart move.  The dermatologist gave me relief and was able to keep me on tx for 52 weeks.  Think about it.

Good Luck
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Avatar universal
Hey there, lady..  I am so sorry for all you are going through right now, sadly I have nothing helpful to offer you except to say my heart goes out to you and I'm hoping for some good responses and advice ffrom other5s with more experience and remedies for you.
Kindest regards.
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Avatar universal
Whoa....
Califia, & Audrey...
You Two have had it worse than anyone I have EVER Seen!!!

Hang In There Sweetie!
:)
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Avatar universal
I so sorry you're going through this, I'll keep you in my thoughts and hope you don't have to stop treatment.
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Wow, you are just having all the sx's. It sounds like your handling it well or at least using humor to get through this. I think your thoughts on stopping the procrit sounds good and then take it from there. I actually still get the rash I had on tx. It's not constant and is a little less each time but I still get it. Now that I read about where your rash is I don't find mine on my face quit so bad. I hope you find a way to resolve this. LL
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I'm sorry, but sounds like you had a run in with Bishop?? Where you the lady he was talking about?? I'm sorry, you know I love ya, but I just could not resist.. The opportunities only come so often!!
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Oh my friends, all these responses mean so much and are so helpful.  I'm really girding my loins here, so to speak, and having a merry band to ride with makes all the difference.    Lou, interesting legal suggestion, but I must make sure that I don't behave too rashly and end up cooking my own lobster, so to speak.  And Chev, maybe your grandmother has a brilliant insight into this?  So first the information gathering....

Right now, I'm having a second person (ob/gyn) check it out, if only to prescribe some kind of palliative.    What does it look like, TS2010?   Well, on top of red riba speckling and little bumps all over my upper torso (no biggie), a layer of big red splotches like measles--luckily no streakiness--above the navel, and right below, a solid band of red covering my abdomen and hips and creeping down to upper thighs.    Looks like I've got a bad sunburn, but this area hasn't seen sun in a very long time.  It's as if all the red injection spots grew into one large unbroken mass.  The skin is hot to the touch and very itchy.   There are also some splotches on my back and now my face is beginning to take on a pinkish flush--actually looks quite healthy after the anemic pallor.  

Snook:  Apparently with interferon sensitivity increases w/ duration of tx.  The immune system can reach a point of over-stimulation over time so it  makes sense that an allergic reaction--if this is one--could be happening at this point.
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Much as i would like to compete i am happy not to take the prize.Good luck with clobbering the culprit!
Mr S Hall
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Avatar universal
Can you describe what the rash looks like?  I had a terrible rash around week 10 of tx.  It was caused by sun exposure.  Even a few minutes of exposure would bring it on.

Is there a chance that this is happening to you?

Did you see a dermotologist?
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Avatar universal
Damn, and double damn!! Been wondering about you, and this is what you turn up with?? Damn!!
Hey, You and Lou both know, that I'm the lobster man around here!!
All kidding aside, I am very sorry to hear of your situation.. Man, does this thing ever level out, and let us just glide along? Cuteus is right, Daryl had a bad allergic reaction to Procrit, and they stopped his tx.. But hey, he cleared the virus with only like 21 shots I think, and he was also a 1b.. I'm hoping that he checks in, or one of us might have to email him..
Keep your chin up girl, you have been fighting this thing for years, and we're not letting you stop now!!  
If it where a reaction to the interferon, would you not have broke out earlier?? Allergic reactions usually happen right off the bat, and I believe you just started the procrit a week or two back.. I'm betting on the procrit. Hope you feel better, and know the rest of us are searching the net for answers..
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Yes califia, I heard you talking on the phone about it. Don
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Bummer alright.  But I have a real No Pasaran attitude about this.  I'm not going down without a fight.
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Bummer! damn! I have not had any problems with the Procrit, that I can tell, no ideas which med gives me the other sides, except for the anemia.
I hope you are right about the Procrit, I hate to think of the alternative. Not fair!
I think Daryl had a reaction to the Procrit, check with him here or on the other side.
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