hair loss, sores - please feel free to use for other questions

Hi everyone,

I am on week 36 of Pegasys/Rebetol treatment. I have been loosing hair since about week 18 and now it's becoming really noticeable. I used to have a lot of hair (may be even too much) and now my hair is becoming too thin. The main thing that I am scared of is that it's becoming totally straight. It used to be very curly. I am interested to hear if anybody had the straightenning problem as well. I know a lot of people are loosing hair, but I never heard anybody saying that their hair is getting straight. Will the curls come back after treatment?  I also have a sore in the corner of my mouth (very attractive ????) and I can not seem to get rid of it. Any suggestions on what I should use? My doctor said to take vitamins and I already take them anyway.

Thank you for your input.

Foreign girl.

[lizzee]

HI THERE,
I NEVER EXPERIENCED THE SORES. ALTHOUGH THERE ARE PEOPLE ON THIS BOARD WHO DID...
I JUST WANTED TO TELL YOU MY HAIR WAS VERY CURLY TOO.  WHILE I WAS ON TX, IT FELL OUT AND BECAME STRAIGHT.
VERY, VERY, STRAIGHT. LIKE STRAW ALSO. YUCK!
ITS FINALLY CURLY AGAIN AND HAS  BODY TO IT.
I DON'T FEEL LIKE A SCARECROW  ANYMORE.
KEEP UP THE BATTLE,
BE WELL,
LIZE  ;O)

[mikesimon]

Yes I have the same thing. My hair was very curly. I couldn't put a comb through it. It was like a soft afro. Curls everywhere. No it's poker STRAIGHT. I mean it is so lifeless and drab. But I have been on tx pretty steady for the last 3 years. When I did take a break my hair started to come in curly again. I didn't stay off tx long so it didn't have a chance to return to normal and I don't know if it would have. Now it's hard to imagine it ever returning to curly but perhaps it will. So I know what you're going through and I know it's a drag. Mike

[Galen]

I've seen hair go back to what it was before tx.  Mine got straighter and thinner too, as did my eyebrows.  I'm on week 42 and haven't noticed so much loss in the past couple of months.  The sore in the corner of your mouth is probably some sort of yeast infection.  Try a topical anti-fungal and eat yogurt every day.  It helps a lot.

[regmel]

My hair is thin to start with and I haven't been on tx long enough to have lost any but I do notice it is getting very dry.  I have found a great hair conditioner that really conditions and detangles for easy comb through. It's made by philosophy and called "Grace perfumed hair conditioner".  They sell the product line at Nordstroms but I could only find the conditioner on line at philosophy.com. I only need to use a little bit so the stuff lasts forever. It's worth the $22.00. Also I have noticed since week 2 I have had alot of new hair growth. It's probably just in it's growing stage but I'm hoping the tx is having the oppisite affect on me. I do recommend the Philosophy conditioner though, It's great stuff.

[Martee]

I looked up philosophy.com as you suggested, but there is more than one conditioner (about 4or5)
Can you please tell me exactly which one you're talking about.
Thank you very much,  :)

[regmel]

It called "Grace perfumed deep moisturizing hair conditioner"

[emop]

MOUTH SORES:  If you have a cold sore or similar, I would recommend asking your doctor for ZOVIRAX 400mg (generic for VALTREX)...it works wonders!

[mofo]

I got the mouth sores pretty bad. Dr. wrote a prescription for something called "magic mouthwash". It worked very well. I think it was all gone in two days.

[quak]

Everytime I wash my hair hunk full of hair come out.   Althought I'm lucky that my hair has thinned alot but not very noticable.  I keep my hair short and straight now and still highlight it once every 4 - 5 months. (i used Nixon sp shampoo) As far as the sores I have had one in the corner of my eyes for ever.  They come and go but they are painful.  I went to a dermatagolist and gave me some stuff that really never works.  Hang in there.

Lori

[L.I.girl]

I got the mouth soars and they were the worst of my side effects. Two weeks after I finished treatment, they were gone. Don't get discouraged. I had them like the last 3 or 4 months of treatment on tx on and off. I hated it. Not much worked for me to clear them up. I could not taste anything either. It was truly the pitts.
I had very thick and curly hair before tx. Lost half of it and it also got thin, straight and very fine. I have been off of the treatment since May 20th and it is growing back. I have about 2 inches of growth. Don't worry, it will grow back. I don't know if the texture fully comes back. My doctor says the texture doesn't fully come back but I think it takes a good year to find that out since your hair only grows 1/2 inch a month and that is only after your body gets rid of all of the medication.
I feel really great now and everyone in my office says that the old me is back. I looked pretty pale and very think at the end of the treatment. Took two good months to look normal again. I am thankfull though that so far I am still virus free. I go for a blood test the first week of September and will report back then.
Hang in there all. You can do it. I did, even though there were times I wish I could stop. It gets better, really!!!!

[Galen]

More hair info (since this is what I do, I have always been very interested in the subject :-)  In addition to the growth rate of hair (4-6"/yr) every hair on your head has its own code and timetable.  When a new hair starts growing, it does so for an almost predetermined lenght of time.  Some people can grow hair to their toes and some can barely reach the shoulders before getting nasty looking.  Anyway, it grows, then goes through a rest stage, falls out, and in time is replaced by a new hair.  On tx, the drop rate goes into overdrive and the growth rate slows down.  After tx, it will take quite a while for all those follicles to produce hair as they all go back to their normal individual genetic code.  The two exceptions are hair loss due to normal aging and, in rare cases, when someone actually gets bald spots.  In the case of the later, it may not all come back.  Don't forget ladies, 70% of all women also have age related hair loss starting at the beginning of perimenopause.  Homones play a big part.  In a final insult, thyroid damage can cause hair loss, too - both hyper- and hypo-thyroid.  Not only that, but thyroid problems are also very common in post-menopausal women.  Lucky us, huh?

[kathyf]

Hi Foreign Girl. I had the hairloss, too and it also became very straight. I continued losing hair after finishing treatment for about a month and a half. It just started growing like crazy when it finally did - but still hasn't come back to the thickness it was (I am now in my 5th month post treatment.) The texture is  back to normal, though - it got very wirey and straight, too. As for the mouth sores in the corners of your mouth - I had them, too and they weren't yeast or cold sores. I still think that they were from not drinking enough water but who knows? I didn't use anything to get rid of them, but I used the "magic mouthwash" mentioned above for when my the inside of my mouth became raw and painful. It was a combination of Kaopectate, benedril and something else (something to numb it) and it worked great - ask your Dr. - Mine wrote a perscription and the pharmacy mixed it up for me.

Take care!
Kathy

[Foreign girl]

Thank you very much for your comments and your support!

[fullofhope]

Is the amount of hair loss experienced by patients related in any way to the combinations of drugs used?

[crib]

spot in head

[Marcia2202]

OLD THREAD from 2003

[gr8testcharliebrown]

Im getting verry sad this is harder then i thought.I did the once a week shot for 2 1/2 months when my doctor stopped treatment because my body rejected it and i am stage 4 chrono type1...
I now have been on 3 shots a week for 1month but anm suppose to have it everyday but kfh wont cover it. Shot days are getting harder and harder. my body hurts everywhere .. then one day i dont feel a thing.. But... my hair shure is baddly affected.I had hair to my bottom and my husband cried when he had to cut my hair. I've lost all of the hairs in front and have 2 holes one on each temple... I will not walk out of my house without a hanky on. I've baught some cute ones but it doese not feel pretty and it *****. My children and husband are the greatest but im loosing my strength. I see the tears in my husbands eyes when he comes home from work and im in bed moaning and figity from how bad my body aches and locks up.I try to hide what hurts when their home but they all know.Some days are good and somedays are a nightmare ! My three kids and nephew are not my husbands even though you would never know that by meeting them or seeing them 2gether. Is it going  2 be two much for my man and how do i cope with this ?  please someone help.....

[Bill1954]

Hi,

I like your nickname! It sounds like maybe you’re talking Infergen; and insurance won’t cover daily use, huh? Have you tried to contact their patient assistance program?

http://www.patientassistance.com/profile/valeantpharmaceuticalsinternational-187/

They might be able to help; I wouldn’t pay too much attention to their written limitations about not having insurance, etc. Give them a call and see if they can help.

You probably want to start a new thread, by clicking on the green ‘post a question’ button near the top of this page. This is an old thread, and you might get lost in the crowd here.

Treatment can definitely be tough; there are others in here that are using Infergen as well; perhaps they’ll see your post and give you some advice.

Best of luck to you, and I hope things work out—

Bill

[powerbuilt]

I no what you mean,hardest thing I ever had to do.... One day you feel pretty good then all hell break loose the next...I am trying to take the good with the bad.. hang in there and try to exercise a bit to move them awful meds around in your body, I no its tough but it is a must

[newleaf09]

Just started with the mouth sores recently after 6 mos. of TX.  I feel pretty sure that it is related to low platelets.  How are your platelets?  Got lidocaine mouth rinse from doc and will start another recommended by this group called Biotine.  I doubt if they'll stop if I can't get platelets to a reasonable level.