[SPAM]Re: Interferon and long term effects

[Guest guest]

Jackie, I was not aware that tx with

interferon could cause rheumatoid arthritis. Or maybe I did read it, but

ignored it since I already have RA and it didn’t pertain to me.

I believe I knew that it could cause

existing RA to sometimes get worse, but as I said, I didn’t realize it

would in fact cause it to occur in someone with no prior history.

I feel deeply for you and your medical

issues. It sure sucks being sick and I never appreciated it until I

became ill 2 years ago.

You mention that it took you over 23 years

to get disability benefits!? You certainly win the prize for

determination! And I’m confused about paying a firm to assist you

in the process. I often wondered how that worked. If someone hires

an attorney to help file, what is the usual fee associated with this? What

a crime that someone who is disabled has to pay to obtain what is rightfully

due them – and considering that the payments aren’t a hell of a lot

to begin with, how can you afford it?

NY State’s short term disability

pays a MAXIMUM of $170 a week!! Are they kidding?? Unemployment

pays $405 – not much, but sure beats disability. On $170 a week,

you’re supposed to pay your living expenses and medical expenses………

From:

Hepatitis C

[mailto:Hepatitis C ] On

Behalf Of Jackie on

Sent: Saturday, October 13, 2007

4:52 PM

To:

Hepatitis C

Subject: [sPAM]Re:

Interferon and long term effects

Hi

Well I have the long term side effects that everyone talks about. I have

developed Sarcoidosis in my eyes ( guess thats better than in my lungs), and my

Rheumatoid Markers are 3 times normal along with my Sedimentation rate. I also

had some myoclonal thing going on but it hasnt been checked in a long time so I

dont know if that has resolved itself or not.

The thing one has to weigh is the risk of INF and Riba vs the benefits of

it. My liver was very very sick, stage 3-4 with early cirrhosis and grade

3 inflammation so if I hadnt treated when I did, I would probably be on a list

for transplant. So while these other problems are really a hastle and nearly

drive me nuts, they are not as dangerous to my continued living but the hep c

was. The Sarcoid in my eye has caused 2 surgeries but since the second

one 2 years ago, it has not redeveloped the membrane that was taking away my

sight in my right eye. It is not in my lungs so far and from what I have

read and learned, it hopefully will not go there. I suppose if I relaped

and had to retreat, it could start there but so far, Im in the clear 4 1/2

years almost. I have had labs showing that I was undetectible at week 12

and we think I was probably clear by week 2 or 3, so I have been clear now 5

years.

My father had that myoclonal thing too, they did a bone marrow biopsy and it

showed that he did not have myeloma, thank God, but the protein gummed up his

kidneys that caused him to have to go on dialysis 2 years ago. He

recently passed away from all of this. I was born with only one kidney so

I am concerned about this myself but I guess watching is the only thing I can

do at this point. They put my father on high dose steroids to see if it

would eliminate that protein but all it did was to eat up all my fathers muscle

tissue in his legs and he could no longer stand for the past 1 1/2 years.. it

was horrible..

so you should keep a close watch on your labs... but the treatment for the

protein is to take high dose steroids which doing that could cause the virus to

start replicating again... so we're stuck between that rock and hard spot.

As far as your depression, you 'may' need both an ssri for the seretonin AND

something like wellbutrin for the dopamine as both are brain chemicals that can

be affected by interferon tx.

I know what you mean about the body pain... I took Norco

for 3 years for the pain but my doc decided that I needed to change because of

the low dose of tylenol in the norco.

So she switched me to Morphine which has worked fairly well. On a 1 to 10

pain scale, I can get my pain down to a 4 or 5 which is 'almost' tolerable. The

only time I feel painfree is while IM in hot water,, so the hot tub is my best

friend these days. Im in it several times every day. So I would suggest

that soaking in either a hot tub or your bathtub filled with hot water might

help you more. But you will need pain meds too, or at least I do, I could

NOT get out of bed without them and I can't get comfortable to even sleep

without them. Prior to pain meds, my husband would tell me that I'd just lay

there and roll around moving and spent most of the night just groaning... sleep

was impossible so I ended up taking restoril for that,, now I dont have to take

that,, thank God. I really believe the less stuff we take, the better it

is for our livers. And taking Norco

even with the lower doses of tylenol, over a long period of time can still

cause liver damage. So Morphine or dilaudid are two other options that

dont have tylenol in them and are more liver friendly as some of it clears

through the kidneys.

What is our long term prognosis? I havent a clue to be honest. I

feel that all we can do is to live the best life we can now,, and let tomorrow

worry about tomorrow.

As far as getting SSDI, well it seems that if you dont have cirrhosis of the

liver, they wont give it to you for hep c. THEY THINK that hep c is a

silent disease with no symptoms... ha! I'd like to see them deal with it

for one week, they'd surely change their minds! But they WILL give it to

you for depression. I did not know that when I filed for mine and they denied

me 3 times, it took going to the Administrative law judge and having HIM read

my reports from all the docs to finally get it. It took over 23 years to

get it. The judge wanted to know WHY they kept denying me and taking the

word of the state doc who'd never seen me over the words and recommendation of

the docs who had. He gave it to me for 18 months and then they tried to

take it away again.... they tried to send me to another one of THEIR docs over

an hours drive from my home etc,, they threatened me with denial etc, so I went

to a local atty who specializes in ssdi and I followed his recommendation to

the letter. I did NOT go and see their doc because as he said, they have

NO responsibility to even read your previous health records, all they do is

look at you and say you look fine... so I wrote them a letter like he suggested

and enclosed a copy of the biopsy I'd had 30 days prior when I had my

[Guest guest]

I’ve had shingles twice………..do

you feel that this is also something associated with HCV??

From:

Hepatitis C

[mailto:Hepatitis C ] On

Behalf Of Jackie on

Sent: Saturday, October 13, 2007

5:11 PM

To:

Hepatitis C

Subject: [sPAM]Re:

Interferon and long term effects

ps,, I

also have shingles too,, arggggg

Jackie on

<redjaxjm > wrote:

Hi

[Guest guest]

I honestly dont know,, but it could be.. I broke out in shingles BEFORE I found out that I had hepDorothy <dorv@...> wrote: I’ve had shingles twice………..do you feel that this is also something associated with HCV?? From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie on Sent: Saturday, October 13, 2007 5:11 PM Hepatitis C Subject: [sPAM]Re: Interferon and long

term effects ps,, I also have shingles too,, arggggg Jackie on <redjaxjm > wrote: Hi Jackie

[Guest guest]

Oh Lord, I meant 2 years,, not 23, haha... if that were the case, they'd owe me more than the national deficit,, lol,Well there are companies, I used ALSUP, its like Bender and Bender.. they review your case and if they think you have a good case, they take you on.. they do all the paperwork and take care of everything. When you get awarded, THEN they take their payment out of your back payment. IF they are unable to get you awarded, you are charged nothing... so you have nothing to lose .. I was very very happy with Alsup.. you can call the 800 directory and get their number and call them and just talk with them.. they refused to let them get away with denying me something that I had paid in for so many years... Yep, our government and I hate talking politics, but our government will give freely to illegals but to Americans who have paid into the system for years,, well if they can find any way to deny you, they do... its wrong... I dont know how NY gets

away with that low of disability,, but when you get awarded for SSDI,, its based upon YOUR salary, there is NO top figure. I certainly get more than 157 a week, but its not nearly the amount I made when I worked. I think tho that you may be speaking about state ssdi and not national.. I had good benefits at AMR, I had short and long term dis as a paid benefit as an employee, so when I went to file for my ssdi, they put me in touch with alsup.I sure wish you well,, I wouldnt want anyone to have to go through what I did in order to get mine... I mean, Calif even sent me to a shrink for a psyche eval and even HE SAID I would not be able to work and they still denied me... what a bunch of hooey... but dont give upDorothy <dorv@...> wrote: Jackie, I was not aware that tx with interferon could cause rheumatoid arthritis. Or maybe I did read it, but ignored it since I already have RA and it didn’t pertain to me. I believe I knew that it could cause existing RA to sometimes get worse, but as I said, I didn’t realize it would in fact cause

it to occur in someone with no prior history. I feel deeply for you and your medical issues. It sure sucks being sick and I never appreciated it until I became ill 2 years ago. You mention that it took you over 23 years to get disability benefits!? You certainly win the prize for determination! And I’m confused about paying a

firm to assist you in the process. I often wondered how that worked. If someone hires an attorney to help file, what is the usual fee associated with this? What a crime that someone who is disabled has to pay to obtain what is rightfully due them – and considering that the payments aren’t a hell of a lot to begin with, how can you afford it? NY State’s short term disability pays a MAXIMUM of $170 a week!! Are they kidding?? Unemployment pays $405 – not much, but sure beats disability. On $170 a week, you’re supposed to pay your living expenses and medical expenses……… From: Hepatitis C [mailto:Hepatitis C ] On Behalf Of Jackie on Sent: Saturday, October 13, 2007 4:52 PM To:

Hepatitis C Subject: [sPAM]Re: Interferon and long term effects Hi Well I have the long term side effects that everyone talks about. I have developed Sarcoidosis in my eyes ( guess thats better than in my lungs), and my Rheumatoid Markers are 3 times normal along with my Sedimentation rate. I also had some myoclonal thing going on but it hasnt been checked in a long time so I dont know if that has resolved itself or not. The thing one has to weigh is the risk of INF and Riba vs the benefits of it. My liver was very very sick, stage 3-4

with early cirrhosis and grade 3 inflammation so if I hadnt treated when I did, I would probably be on a list for transplant. So while these other problems are really a hastle and nearly drive me nuts, they are not as dangerous to my continued living but the hep c was. The Sarcoid in my eye has caused 2 surgeries but since the second one 2 years ago, it has not redeveloped the membrane that was taking away my sight in my right eye. It is not in my lungs so far and from what I have read and learned, it hopefully will not go there. I suppose if I relaped and had to retreat, it could start there but so far, Im in the clear 4 1/2 years almost. I have had labs showing that I was undetectible at week 12 and we think I was probably clear by week 2 or 3, so I have been clear now 5 years. My father had that myoclonal thing too, they did a bone marrow biopsy and it showed that he did not have myeloma, thank God, but the protein gummed up his kidneys that

caused him to have to go on dialysis 2 years ago. He recently passed away from all of this. I was born with only one kidney so I am concerned about this myself but I guess watching is the only thing I can do at this point. They put my father on high dose steroids to see if it would eliminate that protein but all it did was to eat up all my fathers muscle tissue in his legs and he could no longer stand for the past 1 1/2 years.. it was horrible.. so you should keep a close watch on your labs... but the treatment for the protein is to take high dose steroids which doing that could cause the virus to start replicating again... so we're stuck between that rock and hard spot. As far as your depression, you 'may' need both an ssri for the seretonin AND something like wellbutrin for the dopamine as both are brain chemicals that can be affected by interferon tx. I know what you mean about the body pain... I took Norco for 3 years for the

pain but my doc decided that I needed to change because of the low dose of tylenol in the norco. So she switched me to Morphine which has worked fairly well. On a 1 to 10 pain scale, I can get my pain down to a 4 or 5 which is 'almost' tolerable. The only time I feel painfree is while IM in hot water,, so the hot tub is my best friend these days. Im in it several times every day. So I would suggest that soaking in either a hot tub or your bathtub filled with hot water might help you more. But you will need pain meds too, or at least I do, I could NOT get out of bed without them and I can't get comfortable to even sleep without them. Prior to pain meds, my husband would tell me that I'd just lay there and roll around moving and spent most of the night just groaning... sleep was impossible so I ended up taking restoril for that,, now I dont have to take that,, thank God. I really believe the less stuff we take, the better

it is for our livers. And taking Norco even with the lower doses of tylenol, over a long period of time can still cause liver damage. So Morphine or dilaudid are two other options that dont have tylenol in them and are more liver friendly as some of it clears through the kidneys. What is our long term prognosis? I havent a clue to be honest. I feel that all we can do is to live the best life we can now,, and let tomorrow worry about tomorrow. As far as getting SSDI, well it seems that if you dont have cirrhosis of the liver, they wont give it to you for hep c. THEY THINK that hep c is a silent disease with no symptoms... ha! I'd like to see them deal with it for one week, they'd surely change their minds! But they WILL give it to you for depression. I did not know that when I filed for mine and they denied me 3 times, it took going to the Administrative law judge and having HIM read my reports from

all the docs to finally get it. It took over 23 years to get it. The judge wanted to know WHY they kept denying me and taking the word of the state doc who'd never seen me over the words and recommendation of the docs who had. He gave it to me for 18 months and then they tried to take it away again.... they tried to send me to another one of THEIR docs over an hours drive from my home etc,, they threatened me with denial etc, so I went to a local atty who specializes in ssdi and I followed his recommendation to the letter. I did NOT go and see their doc because as he said, they have NO responsibility to even read your previous health records, all they do is look at you and say you look fine... so I wrote them a letter like he suggested and enclosed a copy of the biopsy I'd had 30 days prior when I had my Jackie

[Guest guest]

Hi, Jackie. I just started receiving my dssi here in Florida. I used

some local attorneys who only work on dssi, and no other type case. I

was accepted by SS the first time after only 2 months, probably a

record (lol). The attorneys normally charge 25% and try to get their

fee from the government. At any rate, because they didn't have to do

much (as I filled it all out with my wife) they only charge me $750.,

which was great, leaving me with around $17k, & I have my monthly

payments put into my bank. Not all stories are negative, tho I was

warned that that could well be the case. I had heard and found out

that an applicant for HCV must strongly discuss the mental sides of

the disease. They don't really seem to want to hear all about your

side affects. Mainly, the mental and the real physical, such as can't

drive, total fatigue, sleep deprivation, inability to carry weight,

walking and talking difficulties, etc. Good luck to all applying!

It's certainly worth the fight, and we damned sure desearve it.

> Jackie, I was not aware that tx with interferon could cause

rheumatoid arthritis. Or maybe I did read it, but ignored it since I

already have RA and it didn't pertain to me.

>

> I believe I knew that it could cause existing RA to sometimes get

worse, but as I said, I didn't realize it would in fact cause it to

occur in someone with no prior history.

>

> I feel deeply for you and your medical issues. It sure sucks

being sick and I never appreciated it until I became ill 2 years ago.

>

> You mention that it took you over 23 years to get disability

benefits!? You certainly win the prize for determination! And I'm

confused about paying a firm to assist you in the process. I often

wondered how that worked. If someone hires an attorney to help file,

what is the usual fee associated with this? What a crime that

someone who is disabled has to pay to obtain what is rightfully due

them – and considering that the payments aren't a hell of a lot to

begin with, how can you afford it?

>

> NY State's short term disability pays a MAXIMUM of $170 a week!!

Are they kidding?? Unemployment pays $405 – not much, but sure beats

disability. On $170 a week, you're supposed to pay your living

expenses and medical expenses………

[Guest guest]

yep, I agree,, we damn sure deserve it,, Im so glad you got your so much easier than I did,, you and Liz got it the first time,, I know there are others who did so to but most of us have to fight like heck to get it.. stinks too,, you are lucky that you got to keep yours,,, thats great!Rick Kipp <rickkipp@...> wrote: Hi, Jackie. I just started receiving my dssi here in Florida. I used some local attorneys who only work on dssi, and no other type case. I was accepted by SS the first time after only 2 months, probably a record (lol).

The attorneys normally charge 25% and try to get their fee from the government. At any rate, because they didn't have to do much (as I filled it all out with my wife) they only charge me $750., which was great, leaving me with around $17k, & I have my monthly payments put into my bank. Not all stories are negative, tho I was warned that that could well be the case. I had heard and found out that an applicant for HCV must strongly discuss the mental sides of the disease. They don't really seem to want to hear all about your side affects. Mainly, the mental and the real physical, such as can't drive, total fatigue, sleep deprivation, inability to carry weight, walking and talking difficulties, etc. Good luck to all applying! It's certainly worth the fight, and we damned sure desearve it. > Jackie, I was not aware that tx with interferon could cause rheumatoid arthritis. Or maybe I did read it, but ignored it since I already have RA and it didn't pertain to me. > > I believe I knew that it could cause existing RA to sometimes get worse, but as I said, I didn't realize it would in fact cause it to occur in someone with no prior history. > > I feel deeply for you and your medical issues. It sure sucks being sick and I never appreciated it until I became ill 2 years ago. > > You mention that it took you over 23 years to get disability benefits!? You certainly win the prize for determination! And I'm confused about paying a firm to assist you in the process. I often wondered how that worked. If someone hires an attorney to help file, what is the usual fee associated with this? What a crime that someone who is disabled has to

pay to obtain what is rightfully due them – and considering that the payments aren't a hell of a lot to begin with, how can you afford it? > > NY State's short term disability pays a MAXIMUM of $170 a week!! Are they kidding?? Unemployment pays $405 – not much, but sure beats disability. On $170 a week, you're supposed to pay your living expenses and medical expenses……… Jackie