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Eyelid puffiness, rash from Gleevec

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Dear Sue--

Thanks so much for the info and encouragement--it really helps to know I'm not

the only one. My skin falls off in sheets--especially around my fingernails,

but also on my right arm, especially. Not sure why it should localize to one

side only, but that's the way it goes with my friend, Gleevec. I have also

developed rosacea and that is new for me too since Gleevec, but may just be

because I am 55 and my skin is getting weirder and weirder due to age and

menopausal stuff maybe--I just don't know!? I do know that with the itching and

peeling and swelling, some days I want to just take my skin OFF and put it away

for a while to get some peace and comfort. At least I have not had the blood

blisters like you did--that must have been terribly difficult and awful--I am so

glad it subsided.

Thanks again for the encouraging words. I will look forward to waking up one day

and having nice, normal skin--nothing fancy--just without any symptoms.

On another subject, has anybody gotten anything either Rx or OTC (over the

counter) for their eyelid puffiness? My eyelids are puffy to the point where the

muscles are getting fatigued and I get awful eyelid twitching and spasming of

both upper and lower lids of both eyes--they will spasm shut and I can't open

them at times--it is just totally weird. My sons think it is a great freaky

trick that I can do--they have asked me to do it for their friends, which I did

and they were duly impressed! I was a very popular mom for a while. I was

wondering if maybe some sort of steroid cream or something might help with the

amount of swelling that I have.

Thanks everyone, for all the great posts--I lurk a lot and they have really

helped me survive some days. That is the great thing. I hope I can help

somebody too.

Hugs to all,

Vicki

>

> Hi Vicki

>

> Rashes from Glivec

>

> They are part and parcel of a side effect from glivec

>

> Some people have no skin issues at all or others like myself became the Queen

of Rashes and competitions and one upmanship

> who had the better rash.

>

> I started rashes within the first month of taking glivec (600mg) and continued

on with various types of rashes for just over 2 1/2 years

> and it is only the last six months that the Rashes have completely

disappeared.

>

> I have had (read the list):

>

> Shingles repeatedly (a glivec side effect - if you get shingles get to medicos

asap so that they can get some medication into you asap)

> - hives, welts, different types and size - blistering of skin - very small

blisters

> - the best one - was a blood blister rash - all different sizes (that was the

only one that sent everyone being medicos and

> family into a panic) -

> Every couple of weeks another type of rash

> Amazingly -

> I did not get itchy skin - thank goodness just unsightly at times - good

conversation pieces and I was not sick with them.

> Rashes only on legs, feet and arms - never face, or torso - shingles on

shoulder

> I did not change drugs and I was able to manage the rashes quite easily

>

> I now do not wash with soap but with a sensitive skin lotion

>

> Many people - because of the rashes - which for them have been from head to

foot - thru the hair on face and terribly itchy

> have swapped to another drug - not because glivec has not worked but for the

side effects. Having said that all CML drugs

> have side effects just depends which one you are going to get and in what

severity or maybe so low grade that they do not

> interfere with your quality of life.

>

> I am currently not even a rash Queen or rash Princess - so I am no longer in

the Rash Club.

>

> I one day woke up and thought I have not had a rash for a month then two then

three months - so now 6 months without

> one - that I even forgot that I had rashes.

>

> Suggestion:

> Ensure that you keep your specialist aware of your rashes or any side effects

such as being ill with them or if they suddenly

> start to bleed or seep etc or as importantly your quality of life issues if

they are so bad.

> As stated I had 2 1/2 years of rashes then they just went away - left with as

many others, very fragile skin, intolerant to the sun,

> and going whiter until soon I maybe the ghost who walks.

>

> Sue (Aussie)

>

>

>

>

> __________ Information from ESET NOD32 Antivirus, version of virus signature

database 4937 (20100311) __________

>

> The message was checked by ESET NOD32 Antivirus.

>

> http://www.eset.com

>

>

>

>

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