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.

[ceanothus]

It did me a world of good to read your last post about packing to go to the lake for a couple of days - it sounds so soothing. I hope it does help you as much as I'm envisioning. I'm so relieved that your dermatologist ruled out the big bad ones, and I'm so glad you are keeping us updated. I bet you will return a new woman, as the steroid works from within and the change of environment works from without - but let us know!
-Saelon

[LookingForward12]

I just can't believe that it continues to spread! Legs, feet have bumps and hives all over....feet started yesterday. Hands are swollen and covered with red bumps now. Upper torso is completely red, like sunburn. And did you ask if it itched? Or feels like everything that comes in contact with my skin feels like I've been rolling in fiberglass?

On a lighter note....we packed up the RV and headed to the lake for two days- the change of scenery might do some good. I can walk the dog at night when it's cool.....if the anemia doesn't drag me down. :)

Happy Easter and Passover to everyone!

[Dee1956]

So sorry for what you are going through.  I can't believe your doctor did not give you anything for the rash.  Although with the way others have been treated by various doctors on here I guess I should not be surprised
As Micheal mentioned before ice does seem to help somewhat.  I kept wet washcloths in the freezer, the cold seemed to numb the itching. Atarax worked for some.  I am so glad that your derm is helping you and as others have suggested if it gets any worse please go to an ER

[Advocate1955]

Sorry to hear that your rash continues to progress even after discontinuing Incivek.  I hope it starts to improve soon.  Keep us posted.
Advocate1955

[working dog]

i think your rash will start to ease up soon on its own......maybe 1 or 2 weeks more and i'll bet the blisters begin to go away..i also think you'll have it to the end of tx ...better the rash and be cured at the end....i guess no one really knows the saturation point of these drugs..but i think you got there....good luck...billy

[LookingForward12]

For some reason he doesn't think it's severe unless I have one of the above, TENS, DRESS, orSJS -all of which derm ruled out. My doctor thinks I also need to have large, weeping blisters. He doesn't see my small puss, fluidly things as blisters.
I am monitoring everything closely for change or progression

Thanks for info pooh.

[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.

[LookingForward12]

Back from the doctor. Blood drawn...shot number 13 under my skin. He still seems to be in some denial about the severity of this rash. I did express my unhappiness over the sense of his lack of urgency in the matter.Ah well, I'll give it this next week and see what happens with no Incivek in me for over a week. It should begin to clear in two weeks or so, I'm hoping.
Could detect no big change after the Kenalog shot. In fact the rash continues to spread and is making its way down the bottom half of my lef to the top of my foot.
My labs this week were interesting WBC holding at 2.4. Platelets up to 145 from last weeks 122. But the shocker was that my hgb has dropped to 9.9 from 11.6 last week. I thought being off the Incivek for five days would have habit holding better. So, Procrit shot today....will have labs drawn again on tuesday to see what's what with all that.
Another interesting result...last week my eosinophils were at 11....this week had risen to 34. That is what is used to measure whether or not you are having an allergic reaction to something,normal range is 1-10 on this test.

So onward and upward....still on SOC.

[Advocate1955]

Here's hoping the injection helps quickly and you get to continue with SOC.
Advocate1955

[orphanedhawk]

I hope you let all your frustration about this horrible situation out on that doctor of yours.
It drives me crazy when they  put their egos ahead of their patient's best interests.
He really does need to be told off, in my opinion. He's lucky you don't sue him.

[pooh55811]

I am wondering if your derm. doc knows your head is itching. Mine ordered clobetesol soln. for the scalp and it worked wonders. The bumps are gone from my head and it no longer itches. Of course, that injection may take care of the problem since it is systemic.

[LookingForward12]

I know michaell....my hair is falling out in clumps already.... Not from scratching so much but I do know that the rash is on my scalp.  So I will do my best not to dig at it .....don't want to exacerbate the issue. Not sure I want to have a Mia Farrow haircut before this is over.

[micheall]

I lasted 10 weeks on Incevek when I got the rash over 85% of my body.I saw the dr right away and he wanted to admit me into the hospital.I said no and wanted to get back home to treat the rash ,stay on hep tx, and take care of myself.He did not advise me to stop hep tx.One thing not to do is try not to scratch your head.Use the ice packs.I scratched my head and now I wake up with hair all over my pillow 4 weeks after clearing the rash,and I loose a lot after showering.

[TexSunflwr]

I'm sorry to hear that your rash is worse, and that you are suffering so. I hope the Kenalog works quickly. Take care!

[stormy456]

Un-be-lievable.  

I'm so  incredibly sorry you have to go through this, and am relieved that finally the dermatologist is paying attention.  There is good reason to believe that your rash will be helped by the steroid shot, and the lack of INC in your body.  At this stage of the game, maybe a relaxing stay in the hospital while someone takes care of your rash 24/7 might not be so terrible.  

[BoceprevirGal]

That sounds scarey, stay on top of things, any strange signs, and just go right to the E.R.!

[working dog]

i wouldn't count on your rash going away after the incivek...some of the large blisters might but the rash could stay for a while....even after tx ...mine did..it was nasty...4 months post tx i still get rashes easy but its not bad at all...no creams helped ..nothing worked... as tx went on by week 16 i started really feeling the interferon...i think i should have reduced it.....good luck...your going to clear the virus......hang in there...billy

[flcyclist]

So sorry to see you going through this tough time.  I seriously hope this resolves so you can continue tx on SOC and move on.  As pooh mentioned, the corticosteroids shouldn't be used with incivek, but I'm not aware of any contraindications with Inf or Riba.  

Your tx doctor will likely gage his/her decision on whether to dose reduce or stop  the remaining meds on how you respond to the Kenlog.  Hopefully, this will give you quick relief and calm things down.  If not, I'd suspect your doc may suggest to stop the Riba and/or Inf until the rash subsides, then resume again.  Following are a few case studies that stopped the Riba for a short time then continued for the remainder of tx.  Good luck to you.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886494/

http://hepatitiscnewdrugs.blogspot.com/2012/03/iincivek-help-recognizing-rash.html

[LookingForward12]

Thanks so much for the comments so far. Pooh, that excerpt is the exact excerpt I am going to force my doctor to read tomorrow....or I will read it to him. Or maybe just take the piece of paper and....well, you get the picture.

I have just been slathered head to toe with my topical cream, Desoximetasone, and am such a bright red I could be used as a lighthouse beacon.

I feel a little strange with a funny taste in my mouth. I guess I can attribute that to the shot.
I just hope I don't end up in the hospital over this.