try diproline a steroidal ointment. my itching was unbearable and this was the only thing that worked. best luck
LOVED the Tender petals...I laughed until my sides ached! A good laugh is an incredible thing. My heart goes out to you who are so miserable with bad sides...I almost died on two occasions from them, so Dr. has pulled treatment. My viral load is about 5.5 million at this point, but most liver enzymes are normal...I have discovered that Perleche (red, painful cracks at the corner of the mouth) are a fungus. Dermatologist finally gave me a anti-fungal, which has worked overnight. I also have been given a pain medication which is great. It is fentanyl, a narcotic,
but I don't need it too often. I have a terrible codeine allergy. The fentanyl is called Actiq, and is a rasberry creme flavored sucker. Only problem is you need utensils to break into the package, but as long as you know it is okay. Is anyone from Washington State?
Sofia, So sorry to hear that the riba is getting you down. It takes quite awhile for the Procrit to kick in, but you should start feeling better soon. I had the same symptoms; heart pounding, out of breath when walking, etc, and it started in the third week of tx. As soon as the Procrit kicked in and the shots were stopped, it would take about 3 weeks for the RBCs to plummet again. It kept happening, the Procrit roller coaster, until I could convince my doctor to keep me on a "maintenance dose" of 20,000 or 30,000 units when the RBCs came up a bit, to keep from tanking again.
In month 5 of my Pegasys tx, the absolute neutrophils and white blood cells dropped too, so I had to start GCSF shots (Neupogen) to bring them up. Apparently those shots kick in right away, but work for only a short time, so I have to get them twice a week. Ain't it fun?
Don't know why some people can maintain blood counts and others drop. It would be interesting to hear different theories on that- perhaps bone density, which might affect bone marrow and production of cells?? Someone suggested recently that older kidneys have a harder time flushing out the poisons.......
Hope your last 13 weeks go smoothly and the Procrit starts working soon.
Thanks for your response.
Taking 40,000IU procrit. Doc put me on iron supplements as well as mega woman vitamin from GNC. Says it's safe using daily amount for those not at end stage liver disease, or close to it. The mega woman is loaded with vitamin B as well as other energy producing vitamins and herbs. Hopefully this will turn symptoms around.
I have also read, (can't remember where at the moment) that for those of us on long term procrit, at some point iron in daily doses, becomes necessary.
You might want to ask your doc about it if your energy is still decreased even with the epo.
Take care and have a very speedy 17 weeks!
DS
Thanks for the information on rashes.
I too am heading toward the home stretch with 13 more weeks to go on pegasys!
The itching is just starting to get to me, so I appreciate all the information on combating this latest annoyance!
Was wondering what symtoms are you experiencing that the doc is having you stay on procrit for the rest of tx, and what G-CSF is? I am experiencing very painful legs, very heavy chest with burning from my chest to the solar plexus when I try to exert myself. And I mean just getting up from the couch to the kitchen takes a lot of exertion. It also takes a little bit for me to get my breathing back to normal.
Been on procrit for over 4 weeks with a rise in hemoglobs 9.5, but symptoms are not improving.
Was wondering if this is or was the same for you or anyone else on tx. Don't want to cut back to 4 from 5 ribas (1a), but we are not sure if there might be lasting repercussions from letting the fatigue and pain, go on for so many weeks.
Is this just syptomatic of the home stretch due to a build-up of riba???
Wishing you all great health, and to those on treatment,
a speedy pace to the finish line!!
DS
The last I heard about Amanda was that her load has started to come down though perhaps not as dramatically as she and Jodi would like. Amanda's taking daily infergen injections now but according to Jodi it is still early in this approach so the jury is till out. I expect that Jodi will post soon and let us know how Amanda is doing. Mike
I'm glad the cortisone cream did the job for you. I tried everything to get rid of that rash. I also had it in the forest area down south around the mighty oak. I was like Regmel and got rid of mine with epson salt. My only problem is that the salt dries the total area that came in contacct with the epson salt. So after I finished bathing in the salt I clean myself off with Doves moisteurizing soap and then finally rubbed Cortaid cream all over to prevent chaffing. God bless all of you. I wish I would have know about this websight while I was getting the tx.
I hadn't laughed all day. I was laughing so hard, my kids thought something else was wrong with dad.---Thanks!!
Indiana, your image of crotch grabbing baseball players doing the chicken dance was much too kind. Imagine, if you will, an old dog scooting it's bare butt across 2 miles of rough pavement, or lying on the floor scratching with two paws, for hours at a time. I'm just really glad that I live alone!
Gee, guys, doesn't everyone call them tender petals??
if the hydrocortisone stops working for you might want to ask about desonide. I had to move to something stronger to keep my south lawn at peace at that seems to have done the trick. On the other hand, its by rx and may not be appropriate for flower gardens. Best wishes, keep that countdown going..
Anyone else note that we are getting 8 new threads a day?
Also, for all of you newbies or semi-newbies, there is a site set up by our very own Commdude on Yahoo groups where you can post and read (and sing!) lots of the Friday Night Fight songs. There is also a place to post and view photos of members. To read the songs, no membership required, but to see and post photos, you have to join our little group. The site is www.groups.yahoo.com/group/hepsongs/ Maybe willing will make it a clickable link.
<a href="http://www.groups.yahoo.com/group/hepsongs/">Here</a> is a clickable link to the yahoo group.
If you can't jump in the ocean use epsom salts. It really works. It will clear up the rash in 1 to 2 days.
Newb, that description was a hoot!! Indiana is one of the few here (men, that is) who would have the nerve to respond, and in typical Indiana fashio, of course!
whybabe, Travelmom posts once a week or so. Last time she posted, Amanda was on daily infergen. I'm not sure how it is working so far. Anybody else?
Thanks for the wonderful chuckle!
"tender petals of the south lawn" :) :) "one big tree" :) :)
A much needed OUT LOUD laugh!
(And newb, I can relate.....had the southern rash at the beginning of tx and have thankfully not had any since).
ambush :)
Sorry to butt in, but has anyone (long term posters)heard about Amanda's condition (Travelmom's girl). Shebee, Mike, anyone???
Deb
Dry skin can also be caused by not enough fluids. Drink until your teeth float. I drank almost 2 gallons of fluids a day and used a **** load of Aveeno lotion.
God Bless,
Deb
Petals of the south lawn.....almost fell out of my chair from laughing. THANKS!
Thanks for the tip i will try. the rash for me is on my legs and itch itch itch.
Elizabeth
HAHAHAHAHAHAHA......Tender petals of the south lawn??...HAHAHAHA
Now THAT is a whole new term for me.
Rashes and skin problems were my worst side on my tx. While I do have a "south lawn" mine is doesn't have petals but rather one big tree. My rashes never went there but pretty much stayed in my "North Forty" areas. I don't have a lot of experience with what you can actually safely use on the "petals" but I do know you have to be more careful than we "loggers" do. I say whatever works for you is good.
I was able to hold down most of the worst effects of my rashes for a long time with OTC stuff until I got near the end. After about week 35 nothing seemed to help and it got REALLY bad. I finally ended up at the dermatologist and he was baffled as to what to do also. Since most of the rashes are caused by the meds from the "inside" there is little that any topical stuff can really do if you get it bad. I suggexted some stuff from the "Hepatitis A-Z site" and ended up using Zyrtec pills and Fluocinonide cream to FINALLY end my agony.
Use the OTC stuff as long as you can but don't be afraid to ask for some stronger stuff if it gets bad later on.
The visual I get of you trying to scratch that itch without really scratchin it in front of others is priceless. I think of Baseball players and the "Chicken Dance"!
Thanks for the laugh...........