Tuesday, November 22, 2011

Not Very Helpful: Medical Sites On BI 201335 And Bad Rashes, But Good Ideas From Real Patients Suffering Like Me!

Basically, all I have learned is that they have no answer to the severity of my particular rash, and such severity has caused 4% of patients to discontinue treatment. Not very helpful. Man, this is really wearing me to the bone! Thank God for fellow patients in other Protease Inhibitors treatment with bad rashes. Maybe something they suggested below might just work.

Here is the list: Prednisone, Zertec, Elocon steroid cream, Atarax, Triamcinolone Acetonide Cream, Solumedrol
You Would Think There Would Be An Answer Readily Available!
Here are some possible treatments recommended by patients with similar side effects with other Hep C Protease Inhibitors that I need to investigate:


The only thing that did stop the itching was a pill called Atarax.  Its not a over the counter drug and your doctor has to write a prescription.  The itching was so bad I wanted to stop tx until I started the Atarax and it was the only thing that worked.  


triamcinolone acetonide cream usp. this is my rx, It is 1lb, and I have 6 refills


finally getting the rash under control with the solumedrol


Some parts looked like eczema.  Other parts like my neck just went a uniform angry red and I had to put ice packs on day and night to make the burning bearable. I got really wore out and fed up inspecting it every day and seeing one part die down just to see another part start to flare up. It was a total bummer. Lasted the whole month of July, then gradually the inflammation died down.  I had to treat with Elocon steroid cream the whole time.   


 I had some of the common riba rash issues during tx, but Lidex cream and Zertec antihistimine cleared it up in a few days. Wish I had that treatment earlier, because the itching was hellish! 


At that point, my dermatologist told me this was one of the most extreme allergic reactions she had ever seen.  The rash had converged, if you will, into one large continuous red area that covered, as she said, 90% of my body.  The term she used was confluent.  If you didn't touch it, it looked just as a really bad sunburn would.  There were no longer any indivdual bumps, they had all joined together at this point.  It caused extreme chills and fever and was hot to the touch, as an extremely bad sunburn would be.  I was always cold and taking a shower was excrutiating.  It zapped my strength and the itching was like nothing I've ever experienced before. 

Derm  prescribed Prednisone with a taper schedule of 21 days, however, my study doctor allowed me to stay on all meds for an additional day or two to see if the prednisone would work.  He was very clear that if the prednisone didn't clear it up quickly, I had to completely come off of the study, including SOC drugs. 



THIS IS WHERE I WILL NOT GO:


 But this rash is soo bad I hardly recognize myself. I'm covered fromhead to toe. I bath,shower 10 times a day, have tried every lotion, potion and perscription pill known to man. I lay in bed with up to six bags of ice at a time. I have never experienced so much pain  in all my life. It has now traveled to myface as well as other places too sensitive to discuss. I AM DONE! 12 weeks of torture.


For three weeks the rash kept increasing in area and intensity of pain.  I was panicking about what was going on.  The Hep Service nurse said it is common to have itch and rash so I kept on taking the treatment.   I finally couldn't take it any more so I stopped after taking with my family doctor and the Hep nurse.  After I stopped, I talked with a  dermatologist, and the Hep Specialist who said I was having an adverse reaction to the medication and it was a good thing that I stopped as it could have become life threatening.   It took about 10 days for the rash to clear but I still feel itchy at night.  Hopefully that will stop as well.  The side effects I was having until week 15 were not that bad to manage but the rash was too much.  Now I am waiting to see if the treatment cleared the virus.  The Hep specialist is doubtful but I am keeping up hope.


And something more...



Skin Care:
The dry skin from the interferon and the Riba-rash can be potentially very big sides from treatment.  It seems to affect fair skinned people the most.  Many describe the feeling as being like little bugs crawling all over your body.  Your skin is also dry and very sensitive from the interferon.  Freyja is sure that the Princess from the Princess and the Pea must have been on interferon treatment!
Your skin is your largest organ, and skin integrity is very important to your overall health.  Spend time on it, do some preventative maintenance on it - before it gets bad.   Your skin will heal slower due to low platelet counts and lower white blood cell counts (WBCs) which can make fighting infections more difficult and slow the healing process. The human body is an incredibly complex entity, when you are on interferon, your body is told that the a number one task is to fight viral infections. Unfortunately this leaves you open to bacterial and fungal infections, so use common sense.   also see Infection
Winter is also a drying season, run a humidifier, take warm, not hot showers, don't take baths (soaking can be very drying and irritate your skin), tap water contains a lot of chlorine.  Chlorine is a bleaching and color oxidizer which dries and strips your hair and skin of natural oils and color during a hot shower or bath.   Chlorine also absorbs into your skin through your pores.  This can aggravate sinuses, irritate eyes, and cause rashes.  Try to get a Chlorine filter for your shower head.
When showering, try to use a mild non-perfumed bath soap or gel.  Deodorant soaps may contain chemicals that could be hard on your delicate skin.  Use a soft cloth, no hard rubbing or scraping!  Do not pick at your blemishes!
Try to put only soft natural fibers next to your skin.  If you wear a bra (not occasionally but every day), get an all cotton one to reduce the irritation from the elastic.  Victoria's Secret has a wonderful line of soft stretch bras, or get an all cotton sports bra.  Carefully cut out those scratchy plastic tags in the back of your clothing.  Do not violently rip them out with your teeth as Lacey and Freyja did, it will leave holes in the back of your clothes.
Here is an overview on three approaches to skin care while on combo:
Over the counter:  To help preserve your skin integrity use a good lotion on your skin every day, am and p.m.-especially when getting out of the shower.   This stuff is excellent! Call your pharmacy and ask if they carry Aveeno lotion (made with colloidal oatmeal), if not, they can order it for you. Does not require a prescription.  Good to keep the itching at bay, good overall moisturizing lotion to use everywhere before dry patches, cracks and sores form.  Bag Balm (also known as Udder Cream) is also a good moisturizer (if you can stand the smell!). Eucerin Lotion is also inexpensive and great for dry skin.
For the face, I like PX Prescriptives-Flight Cream - "Instant Help for Dehydrated Skin" for the "Mummy Skin" on your face (your face will be as soft as a baby's butt, but your wallet will be hurtin'-$36 for a 1.7 Fl. oz tube that lasts about 2 months). Full of aloe, eucalyptus , and other great stuff, can slap it over makeup-sinks right in, no smearing.
If you start to get the "Riba-Rash" (small blister like eruptions that itch like hell-look like flea bites and leave oozing sores when scratched) get a hydrocortisone cream or Benadryl or Gold Bond lotion-they seem to help somewhat.  Downside: If you've got it bad, they usually don't last more than 4-5 hours at best.  Not enough for a good nights sleep.   Hot showers seem to aggravate them.
Homeopathic: Calendula lotion (made from Marigold flowers) helps sooth skin, aides in healing.  Here is a link I wrote about it with a place to get it on the web:http://my.webmd.com/roundtable_message/221527.
Prescription: If all else does not provide you with consistent relief, and you are tearing your skin up- then ask your doctor to  prescribe a good antihistamine.  You are having a severe allergic reaction to the Ribavirin, it's not uncommon at all.  I use Zyrtec, it goes right to the skin, does not make me drowsy. I’ve also heard good things about Claritin (also by Schering) and Allegra.  Also, ask your doctor forFluocinonide Cream USP 0.05, even doctors use it for their cracked skin from all the hand washing.
Freyja gets Elocon from her primary care physician. Can you guess who sells it? If you guessed Schering you get 100 points!
If you must scratch your itches, Pier One has excellent bamboo back scratcher for about .80-get many and put them around your house, they work much better than steak knives or screwdrivers!  Scratch gently!  Do not tear or rip your skin.
Lotion applicator- apply lotion to your back, if you don't have someone to do it for you, order a lotion applicator from a senior catalog -try Dr. Leonards-1-800-785-0880 - ask for #921 its $5.99.



 Info About Boehringer Ingelheim 201335


 The side effects attributed to BI 201335 were jaundice (no severe cases) and rash (severe cases–0.7 to 5.8%) and were found to be dose dependent. 
The PegIFN sparing treatment was well tolerated. Investigators reported that the most common adverse events observed in the study were mild gastro-intestinal effects (diarrhea, nausea, vomiting), rash or photosensitivity. 


Skin rash or photosensitivity reactions (mostly mild-to-moderate): 33%, 40%, and 59%, respectively; 1.3%, 0.7%, and 6%, respectively, developed severe rash. 4% of patients discontinued treatment prematurely due to adverse events (rash, photosensitivity, or jaundice) in the 2 once-daily groups, compared with 24% in the twice-daily group.


The most common side effect was rash and it was observed in 59% of the patients who received the 400 mg dose. 


The company reported potential side effects from the two oral compounds including itchiness, rash, photosensitivity, jaundice, nausea, vomiting and diarrhea.


Weakness, itching, rash, hypersensitivity to sun exposure, yellowing of the skin and eyes, nausea, vomiting and diarrhea were the most common side effects in the study, occurring in more than 25 percent of patients. Between 6 percent and 12 percent of volunteers have discontinued treatment because of side effects, with most dropouts occurring among those receiving once-daily BI 201335, three-times daily BI 207127 plus ribavirin. 


Adverse Effects with Protease Inhibitors

 A sudden and severe cutaneous[outer skin]–mucous[inner skin]hypersensitivity reaction occurred, characterized by a diffuse, maculo[blemish-]papular[pimples]-orticarioid[irritation] rash accompanied by intense itching...  During the subsequent week of intensive care, including fluid-electrolyte management, steroid-albumin administration, and erythrocyte transfusion, the skin rash evolved into a desquamative phase with extensive epidermal detachment, whereas a normalization of all liver–kidney–myelopoietic parameters became almost complete 16 days after HAART interruption, and did not show relapses during the subsequent follow-up... In [treatment group 1] 1 individual withdrew from the study with rash...in [treatment group 2] 2 participants withdrew from the study, 2 due to rash...

 Severe rash associated with blistering, moist desquamation or ulceration has been reported in less than 1% of patients treated with STOCRIN. The incidence of erythema multiforme or Stevens-Johnson Syndrome was 0.14%. STOCRIN should be discontinued in patients developing severe rash associated with blistering, desquamation, mucosal involvement or fever... Rashes are usually mild-to-moderate maculopapular skin eruptions that occur within the first two weeks of initiating therapy with STOCRIN...

Rash
Rashes often appear as a side effect of antiretroviral treatment. These may be itchy but are usually harmless and short-lived. However, severe rashes can occur with nevirapine, and more rarely with some other drugs. Any rash occurring during the first few weeks of treatment should be reported to a doctor immediately, as should any rash accompanied by fever, blistering, facial swelling or aches. A rash occurring with abacavir may indicate a very dangerous hypersensitivity reaction, as described later in this page.
Tips for coping with rashes include:
  • Avoiding hot showers or baths
  • Using milder toiletries and laundry detergents
  • Wearing cool fibres such as cotton, and avoiding wool
  • Humidifying the air
  • Trying moisturizers/emollients or calamine lotion
Antihistamine tablets can sooth rashes and are generally available without a prescription. However, because these may interact with antiretroviral medications, patients should check with their doctors before using them. More severe skin problems may be treated with steroids.

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