Re: SSKI working with Slight Side Effects

[Guest guest]

THAT'S WHERE MY ITCHY EYES ARE COMING FROM??!! My sensitivity to the

SSKI! Wow! Zoo, how much do you take? I'm going up to 6 drops, 3

times/day starting today. Don't know if you've read my history, but

I've been on it for a month and it hasn't done anything for my

lumps. I have a bunch more since I started it. Maybe I have to be

on the full dose (6 drops) for a longer period? I've been on 5 drops

for a week, during which I got 2 new lumps. I'm lost. My derm doc

didn't mention an antihistamine; maybe that will help . . . but with

this malaise . . . it might just put me out completely! Seeing the

derm doc on Tuesday . . . will ask about that . . . no idea what his

next step will be, since the SSKI doesn't seem to be doing

anything . . .

Thanks!

M

> Well I finally got desensitized back onto SSKI (Potassium Iodide)

and

> the EN is practically gone. I now just have the bruising from the

> nodes and injections I had been getting for the past few months. I

> tried for almost three years now to have my old dermatologist

> desensitize me back onto the SSKI but he stated he didn't like to

use

> that med anymore. I don't get it. If it works, why not use it?

>

> Anyhow, having slight side effects that I was warned about. Break

> out in just a few hives now and then. Nothing major and they don't

> last very long. My eyes or rather the lids and surrounding have

been

> getting hives as well as itching and just plane driving me nuts.

It

> is getting better. I do have to take an antihistamine daily for

> awhile until my system finally realizes that the SSKI is an okay

> thing and not a bad thing.

>

> My dermatologist does want to biopsy if able. The only biopsy I

had

> was back in 1997 by the other dermatologist. I think with my next

> appointment coming up soon, my doc is going to be quite pleased

that

> I highly requested to go back on the SSKI. Only thing I hate, is

the

> nasty taste in my mouth. But hey, that's what surgerfree hard

candy

> is for isn't it? Slight price to pay for not having a flare up.

>

> Sorry I have not written much these days as well. My lap top is

> rather slow and my PC has a wonderful big error on it and it is

> driving me crazy trying to figure out what happened. Anyhow, going

> on vacation this week (much needed) and hoping the rest will

> completely get my strength back as well.

>

> Wishing all of you Mothers out there a wonderful Mothers Day.

>

> Zoo

>

> >^..^<

[Guest guest]

Hi M,

I am at 6 drops 3 times a day. Back in 1999 this had worked for me.

I'm thinking the combination of the dermatologist injecting with the

steriods to call them down and being put back on the SSKI helped. I

don't have any signs of any new nodes and this is a big relief. I

understand completley about the malaise and am trying to get

intermittant FMLA (medical leave) as needed for the days that I

completely can't drag myself into work. This would allow me to call

off for this reason only and not count against my attendance. It's

hard working when you have no energy, will to get up, hurt and am

running a temp.

If it helps, I was recommended by the allergist who desensitized me

back onto the SSKI to take 1 Loratadine 10mg each day. This is a non-

drowsy over the counter generic form of Clariten. I spent less than

$20 for 60 tablets and you can only take 1 every 24 hours. Check

with your derm doc on what he thinks about that.

Good luck and don't rub the eyes. Try putting on a nice cool wet

wash cloth to help with the burning and itching. works great and

gives a refreshing feeling as well when you are not feeling well.

Zoo

> THAT'S WHERE MY ITCHY EYES ARE COMING FROM??!! My sensitivity to

the

> SSKI! Wow! Zoo, how much do you take? I'm going up to 6 drops, 3

> times/day starting today. Don't know if you've read my history,

but

> I've been on it for a month and it hasn't done anything for my

> lumps. I have a bunch more since I started it. Maybe I have to be

> on the full dose (6 drops) for a longer period? I've been on 5

drops

> for a week, during which I got 2 new lumps. I'm lost. My derm doc

> didn't mention an antihistamine; maybe that will help . . . but

with

> this malaise . . . it might just put me out completely! Seeing the

> derm doc on Tuesday . . . will ask about that . . . no idea what

his

> next step will be, since the SSKI doesn't seem to be doing

> anything . . .

>

> Thanks!

> M

>

[Guest guest]

Dear Zoo and M,

Gee, You sound 100% happier, Zoo! I know what you mean. Getting a

remission is a wonderful feeling! SSKI is probably the mildest of the

drugs used for EN, even though you still need to be careful about your

thyroid when using it. On this group it seems that SSKI is one of

those meds that either works or doesn't. The doctors will usually

advise stopping it after a while if no good results come of it. For

some of us it is just like magic. I've never tried it myself, because

so far I go into remission without meds. I am still doing well--still

wearing the anti-embolism stocking and even wear it with

shorts....long enough to hide the tops. It just looks like a white

support stocking. I wonder if people think I have varicose veins in

one leg? Personally I don't even think anyone notices. I have found

that most times people are more concerned about how THEY look than how

OTHERS look. Hahaha.

Love,

PS:Thanks for the tip on itchy eyes, Zoo. Good luck at the doctors, M.

Keep us posted on your progress.

[Guest guest]

Thanks, Zoo, all great advice. I hope I don't have to have

injections =( That doesn't sound fun at all! You're lucky to have

FMLA. I haven't required it since I work part time, the malaise

doesn't hit me till later in the morning after I've been there a

while, then I just force myself to tough it out for a couple

hours . . . and since I've been there less than a year, I don't

qualify . . . I'm not even sure I get a fever, although it feels like

it sometimes . . . I just have these stupid lumps that keep

multiplying and hurt . . . and I don't even know why I have them.

But yes, cool cloths on the eyes do help . . . might try the

antihisamine, will ask the derm doc.

Thanks again,

M =)

> > THAT'S WHERE MY ITCHY EYES ARE COMING FROM??!! My sensitivity to

> the

> > SSKI! Wow! Zoo, how much do you take? I'm going up to 6 drops,

3

> > times/day starting today. Don't know if you've read my history,

> but

> > I've been on it for a month and it hasn't done anything for my

> > lumps. I have a bunch more since I started it. Maybe I have to

be

> > on the full dose (6 drops) for a longer period? I've been on 5

> drops

> > for a week, during which I got 2 new lumps. I'm lost. My derm

doc

> > didn't mention an antihistamine; maybe that will help . . . but

> with

> > this malaise . . . it might just put me out completely! Seeing

the

> > derm doc on Tuesday . . . will ask about that . . . no idea what

> his

> > next step will be, since the SSKI doesn't seem to be doing

> > anything . . .

> >

> > Thanks!

> > M

> >