Rash Report 2 - dermatologist

[LookingForward12]

So I went to the dermatologist today. The look on HIS face when he looked at how much more my rash had progressed since he saw it two weeks ago was enough to make ME burst into tears. The first words out of his mouth, after acknowledging that the rash is now over 90% of my body, including my scalp, were that he wanted to give me a steroid shot. he did say that this has not developed into SJS or TENS.
First, the rash now has now turned the skin that is not covered by the non-lumpy, bumpy bits a bright red-almost as though I were sunburned. The only part that is somewhat better are 'some' of the larger pimple-like blisters. My hands are swollen and covered with the rash that looks like hives - you can't even see my veins which are usually prominent. My face is swollen....heck, my entire body is swollen.
So, he called my treating doctor at my request and tried to explain the severity of the rash. The treating doctor started saying something about 60% coverage being moderate and I think the dermatologist must have pressed the point that mine was beyond that. We had to wait for a phone call back, but received the go ahead for 60mg shot of  Kenalog. I looked around but could find no apparent drug interactions with Pegasys or ribavirin.

I have no idea what to expect at this point. I go for my 12 week bloodwork tomorrow. The results will be back by Tuesday, I believe.

I am going to tell my doctor that I made the decision to come off the Incivek four days early since they had more or less left it up to me last week....and still the rash continued to progress. I can't even imagine what I would look like if I had not stopped early.  I am just that angry that i mght tell him off too.  I tried to get something stronger than an OTC cream since March 12th which may have brought this under control a little sooner. At the very least he could have taken pictures and sent them to a vertex rep since they always seem to be in touch with them.

Does anyone know about getting a steroid shot and staying on Pegasys? Can you skip a week of interferon and start back? What might be the odds that he pulls me completely off treatment?

I guess I am in that small percentage of patients who develop the severe rash. Wish I'd had that luck with the lottery
last week. :)

Cheers.

[stormy456]

IMHO, I don't think your team are taking this seriously enough.  It seems as though you are having a serious reaction to the INC - this site recommends urgent medical treatment.    

From the FDA website on INC

http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm

    Serious Skin Reactions

Serious skin reactions, including Drug Rash with Eosinophilia and Systemic Symptoms (DRESS) and Stevens-Johnson Syndrome (SJS) were reported in less than 1% of subjects who received INCIVEK combination treatment compared to none who received peginterferon alfa and ribavirin alone. These serious skin reactions required hospitalization, and all patients recovered. The presenting signs of DRESS may include rash, fever, facial edema, and evidence of internal organ involvement (e.g., hepatitis, nephritis). Eosinophilia may or may not be present. The presenting signs of SJS may include fever, target lesions, and mucosal erosions or ulcerations (e.g., conjunctivae, lips).

If a serious skin reaction occurs, all components of INCIVEK combination treatment must be discontinued immediately and the patient should be promptly referred for urgent medical care

[pooh55811]

Caues of elevated Eosinophils:

By Mayo Clinic staff

Eosinophils play two roles in your immune system:
Destroying foreign substances. Eosinophils can consume foreign substances — particularly substances related to infection with a parasite — that have been "flagged" for destruction by other components of your immune system.
Regulating inflammation. Eosinophils help promote inflammation, which plays a beneficial role in isolating and controlling a disease site, but inflammation can also damage tissues. Immune system disorders, such as allergies, can contribute to ongoing (chronic) inflammation. Eosinophils are key players in inflammation associated with allergies and asthma.

Eosinophilia occurs when either a large number of eosinophils are recruited to a specific site in your body or bone marrow produces too many eosinophils. This can be caused by a variety of conditions, diseases and factors, including:
Parasitic and fungal diseases
Allergies, including to medications or food
Adrenal conditions
Skin disorders
Toxins
Autoimmune diseases
Endocrine disorders
Tumors

Specific diseases and conditions that can result in blood or tissue eosinophilia include:

Ascariasis
Asthma
Atopic dermatitis (eczema)
Chronic myelogenous leukemia
Churg-Strauss syndrome
Crohn's disease
Drug allergy
Eosinophilic leukemia
Hay fever
Hodgkin's lymphoma (Hodgkin's disease)
Idiopathic hypereosinophilic syndrome (HES), an extremely high eosinophil count of unknown origin
Lupus
Lymphatic filariasis (a parasitic infection)
Non-Hodgkin's lymphoma
Other cancers
Other parasitic infections
Ovarian cancer
Primary immunodeficiency
Scarlet fever
Trichinosis (a roundworm infection)
Ulcerative colitis

Parasitic diseases and allergic reactions to medication are among the more common causes of eosinophilia. Hypereosinophilic syndrome tends to have an unknown cause or results from certain types of cancer, such as bone marrow or lymph node cancer.

http://www.mayoclinic.com/health/eosinophilia/MY00399/DSECTION=causes

[BoceprevirGal]

How many days had you been off Incivek, when the eosinophils rose like that? This is the worst allergic reaction....be very cautious, like I said before: at the very first sign of throat swelling, or difficulty breathing, rush to the E.R~
    And if the Procrit isn't helping, same thing~I am amazed at how brave and organized you are, during all this~  
  

[LookingForward12]

Yes...a big slide. I wasn't expecting it either.....   Second Procrit but haven't had one sine before transfusion.

@stormy I wonder what your doctor's would consider as way high. I have just put myself to bed to let the interferon do it's thing. So hopefully will be down for a couple of hours at least. Will call vertex tomorrow, but wasn't real impressed with what nurse could tell me about the rash to begin with. Is there something other than the nurse help line?

[Sentinel13]

LF12: Wow, bigger drop in hgb than we expected. Your hgb took a surprising downturn around week 6 now its taking another surprising downturn about 4 weeks after your transfusion. There might be a pattern here. As you put it, interesting. Is this your first Procrit injection? (sorry, with my brain fog I can't remember). What was today's Procrit dosage? 40,000 units? Cheers, GB

[stormy456]

I strongly suggest you call Vertex directly and tell them about the eosinophils being elevated so high.  The was the flag my doctor was looking for, and was most concerned about on your behalf.  Your doctor is clearly not taking this seriously, and I'm wondering if maybe a visit to ER might be in order.  Don't want to scare you, but I'm concerned.