Re: Numbness in my feet and Kineret?

[Guest guest]

In a message dated 4/27/2004 2:50:46 PM Eastern Daylight Time,

fran@... writes:

.. My home town is Fort Lauderdale; I remember--35 years ago--people referring

to Naples as " the Fort Lauderdale

Hey ,

I'll be down there in two weeks. My sister lives in Lake Worth and my mother

in Delray. I am renting a condo there next January and February in Boca

Raton and my husband wants to look at houses to move somewhere around those

areas.

Do you find the humidity bothers your PA more then in other areas?

JANET

[Guest guest]

Fran,

You may just want to mention the numbness you your feet to your

primary, or Pulmonologist/Cardiologist. I know what you mean,

steriods we tried a pack a few months ago, I stopped them early, it

was only one dose pack but I am constantly thirsty, and it only made

it 10 times worse. I'm glad you don't have diabetes, and glad your

husband has his under control for the most part. Everyone cheats.

LoL! I think you had mentioned plantar faciatis (i know it's spelled

wrong-i'm running on 4 hours sleep for the past two nights it's been

the same, not sleeping well lately)When I was 16, I ruptured a

tendon in my right ankle, I also had a major bout of plantar

fasciatis. Doctor said you have feet of a 40 yr old woman. I was

like gee doc thanks. Anywho, my actual pain of PA had begun to

affect me by that time. My psoriasis actually started at about 12

yrs old. I'm now 25, I live in ville FL. As far as it being

under control, It's getting better. I was diagnosed finally at 21.

After switching Rheumy's. I had extremely elevated Liver enzymes for

about 8 months, not to mention sed rate and white count ect. The doc

was concerned about it so I had to have a bone scan, to confirm it

was just because the PA was active. There is a chemical that is

found in bone, and your liver called Alkaline Phospase, not sure on

the spelling, anyway, if there is errosion of the bone it can cause

your liver enzyme to be extremely high,what they call a false

result, because the bone errosion can cause it to be high in the

blood, rather than there actually being a problem with the liver.

Currently I am on Enbrel 50mg a week, sulfasalizine 2000mg a day,

vioxx 10mg,daily and 1mcg of follic acid. Been on this combo since

the middle of Jan. 04! When I was seen in March, early March my

levels had begun to drop (in my labs that is) So I go back on May

10th, I will have more blood drawn and we shall see what they say

then. I am hoping the blood test will say that it is going into what

the doctor calls " remission " . we all know remission doesn't last

forever. but it's better than it being active. My pain levels have

gone from 10+ to about a 2 or 3 most days. I think it's controlled

to a point, although weather and outside factors still affect me. I

hope you get some relief soon.

Keli

[Guest guest]

Dear Keli,

Thanks for writing. I’m always amazed at how young so many people are with

this disease. It must have been rough having psoriasis at the age of 12. I

think mine started about that time, but I only had 2 spots on my arm and was

told it was a skin fungus that just never went away. Over the years those

spots stayed just the same until I was about 30 and they started spreading

and turning really red. (I’ve been told I have the guttate form.) It doesn

’t bother me too much except my arms and legs don’t look too great. I never

had it on my legs until the past year or so, so that’s another way to know

mine is pretty far away from remission.

I think it’s great that Enbrel works for you. To take your pain from a 10

to a 2 is incredible. You can’t get strong pain medication to even do that,

at least I can’t. I only managed to get 4 shots of Enbrel before the side

effects went crazy, but I did think it was starting to help me. With Humira

I only got in 2 shots and I could tell after the first day of the first

shot, I felt better. I think that makes it even harder, since I know it

would have changed my life if I only could have tolerated it. I actually

had about 3 days on Humira when I felt like my old self and it was

incredible. I haven’t had that much energy in over 5 years and I didn’t

even want to go to sleep since the pain decrease was so extreme. I hated to

miss a minute of nothing really hurting. So I know these drugs are going to

be wonderful and great for so many people.

The predinsone makes me thirsty too, but so do the water pills I’m on for

the congestive heart failure. Sometimes I think I might be drinking too much

water since I’m trying to reduce the edema but the thirst can’t be ignored.

I’m also worried the predinsone could be starting to give me an ulcer. That

’s another one I hate to mention to my doctor because it means more tests.

I’m on Nexium twice a day to hopefully stop that from occluding, but I think

I’m losing the battle. The predinsone also makes you gain weight from

excess water plus it just really increases my appetite. So after being on

it for almost 2 years I’ve added about 50 lbs to my weight and that is the

last thing I need for my asthma or my arthritis. The problem is if I

decrease my food intake I immediately have intense stomach pains. They are

not the simple little stomachache; they are the type that just stops you

from moving. I can sure see how people think they are having a heart attack

and it can be a GI attack. Mine shoots up my chest into my jaw and settles

u under my right eye of all places, so I think I have a nerve that is

involved as well. It hit me at 3AM last night and I took a large amount of

Mylanta (which is like instant relief…for a few moments) but I ran out. My

poor husband made it to a 24-hour drug store and got me some more. I don’t

know what I would do without him since I can’t drive in that state and I

haven’t driven in over 3 years due to my pain medication. I guess this has

been about the 7th time this has hit in the past year. I notice I can’t eat

citrus anymore or anything acidic. So right now I’m trying to eat small

meals more often and sticking to plain lettuce. I eat a normal meal at

dinner, but if I wait too long I’m in trouble later. It’s really getting

to the point where I hate to tell my poor family doctor anything else is

wrong. Since he started treating me, I’ve developed congestive heart

failure, asthma, edema in my legs and lungs, chronic chest infections,

constant burning red skin from the erythromelalgia, and IBS. I’m afraid the

poor guy is going to run from the office screaming the next time I see

him…lol.

Well Keli, thanks again for writing and making realize I’m not alone as long

as I have this group and all the great people who belong to it. I’ll keep

hoping and praying you are going into remission. Let me know on May 10th

what your results will be. You deserve a break just for being so young and

dealing with all of this. Take care and keep in touch. Sincerely, Fran

from Florida.

[ ] Re: Numbness in my feet and Kineret?

Fran,

You may just want to mention the numbness you your feet to your

primary, or Pulmonologist/Cardiologist. I know what you mean,

steriods we tried a pack a few months ago, I stopped them early, it

was only one dose pack but I am constantly thirsty, and it only made

it 10 times worse. I'm glad you don't have diabetes, and glad your

husband has his under control for the most part. Everyone cheats.

LoL! I think you had mentioned plantar faciatis (i know it's spelled

wrong-i'm running on 4 hours sleep for the past two nights it's been

the same, not sleeping well lately)When I was 16, I ruptured a

tendon in my right ankle, I also had a major bout of plantar

fasciatis. Doctor said you have feet of a 40 yr old woman. I was

like gee doc thanks. Anywho, my actual pain of PA had begun to

affect me by that time. My psoriasis actually started at about 12

yrs old. I'm now 25, I live in ville FL. As far as it being

under control, It's getting better. I was diagnosed finally at 21.

After switching Rheumy's. I had extremely elevated Liver enzymes for

about 8 months, not to mention sed rate and white count ect. The doc

was concerned about it so I had to have a bone scan, to confirm it

was just because the PA was active. There is a chemical that is

found in bone, and your liver called Alkaline Phospase, not sure on

the spelling, anyway, if there is errosion of the bone it can cause

your liver enzyme to be extremely high,what they call a false

result, because the bone errosion can cause it to be high in the

blood, rather than there actually being a problem with the liver.

Currently I am on Enbrel 50mg a week, sulfasalizine 2000mg a day,

vioxx 10mg,daily and 1mcg of follic acid. Been on this combo since

the middle of Jan. 04! When I was seen in March, early March my

levels had begun to drop (in my labs that is) So I go back on May

10th, I will have more blood drawn and we shall see what they say

then. I am hoping the blood test will say that it is going into what

the doctor calls " remission " . we all know remission doesn't last

forever. but it's better than it being active. My pain levels have

gone from 10+ to about a 2 or 3 most days. I think it's controlled

to a point, although weather and outside factors still affect me. I

hope you get some relief soon.

Keli

[Guest guest]

Fran,

My P never was too bad except the fact that my scalp was filled with

it, on my ears, inside my ears, behind my ears. I have dealt with

several spots on my back, stomach, my hips. My big problem was

always the pain before. I have been lucky in that the worst P was

where no one could really see it. bad for me,in on sort just because

I never thought to bring it up when I went to the doctor. Sometimes

thought it was my fault but now know differently. I know it would

itch and burn and sometimes bleed. But I did the whole creams and

ointments. I just think I could be so much worse off. I feel for you

very badly. I know all my meds are killing me, the cost that is.

This is for one month the copays that is. I made a list yesterday.

For Allergies, Zrytec D $45, Singulair $20, Nasocort AQ $20. Nexium

for acid reflux, $45, Migraines Atenolol $8, Imitrex $20. PA, Enbrel

$45, Vioxx $45, Sulfasalizine $8,Folic Acid $8 all totaling $254 a

month not including when and if I get sick or if I have a doctors

appt. The money I have to spend for health ins and copays far

outways what I can afford to live on. I'm sure you too know what I

mean. Lucky for me I don't really have anything " serious " . At least

not like CHF. You will be in my prayers. Good luck and God bless,

Keli

> Dear Keli,

>

> Thanks for writing. I'm always amazed at how young so many people

are with

> this disease. It must have been rough having psoriasis at the age

of 12. I

> think mine started about that time, but I only had 2 spots on my

arm and was

> told it was a skin fungus that just never went away. Over the

years those

> spots stayed just the same until I was about 30 and they started

spreading

> and turning really red. (I've been told I have the guttate

form.) It doesn

> 't bother me too much except my arms and legs don't look too

great. I never

> had it on my legs until the past year or so, so that's another way

to know

> mine is pretty far away from remission.

>

> I think it's great that Enbrel works for you. To take your pain

from a 10

> to a 2 is incredible. You can't get strong pain medication to

even do that,

> at least I can't. I only managed to get 4 shots of Enbrel before

the side

> effects went crazy, but I did think it was starting to help me.

With Humira

> I only got in 2 shots and I could tell after the first day of the

first

> shot, I felt better. I think that makes it even harder, since I

know it

> would have changed my life if I only could have tolerated it. I

actually

> had about 3 days on Humira when I felt like my old self and it was

> incredible. I haven't had that much energy in over 5 years and I

didn't

> even want to go to sleep since the pain decrease was so extreme.

I hated to

> miss a minute of nothing really hurting. So I know these drugs

are going to

> be wonderful and great for so many people.

>

> The predinsone makes me thirsty too, but so do the water pills I'm

on for

> the congestive heart failure. Sometimes I think I might be

drinking too much

> water since I'm trying to reduce the edema but the thirst can't be

ignored.

> I'm also worried the predinsone could be starting to give me an

ulcer. That

> 's another one I hate to mention to my doctor because it means

more tests.

> I'm on Nexium twice a day to hopefully stop that from occluding,

but I think

> I'm losing the battle. The predinsone also makes you gain weight

from

> excess water plus it just really increases my appetite. So after

being on

> it for almost 2 years I've added about 50 lbs to my weight and

that is the

> last thing I need for my asthma or my arthritis. The problem is

if I

> decrease my food intake I immediately have intense stomach pains.

They are

> not the simple little stomachache; they are the type that just

stops you

> from moving. I can sure see how people think they are having a

heart attack

> and it can be a GI attack. Mine shoots up my chest into my jaw

and settles

> u under my right eye of all places, so I think I have a nerve that

is

> involved as well. It hit me at 3AM last night and I took a large

amount of

> Mylanta (which is like instant relief…for a few moments) but I ran

out. My

> poor husband made it to a 24-hour drug store and got me some

more. I don't

> know what I would do without him since I can't drive in that state

and I

> haven't driven in over 3 years due to my pain medication. I guess

this has

> been about the 7th time this has hit in the past year. I notice I

can't eat

> citrus anymore or anything acidic. So right now I'm trying to eat

small

> meals more often and sticking to plain lettuce. I eat a normal

meal at

> dinner, but if I wait too long I'm in trouble later. It's really

getting

> to the point where I hate to tell my poor family doctor anything

else is

> wrong. Since he started treating me, I've developed congestive

heart

> failure, asthma, edema in my legs and lungs, chronic chest

infections,

> constant burning red skin from the erythromelalgia, and IBS. I'm

afraid the

> poor guy is going to run from the office screaming the next time I

see

> him…lol.

>

> Well Keli, thanks again for writing and making realize I'm not

alone as long

> as I have this group and all the great people who belong to it.

I'll keep

> hoping and praying you are going into remission. Let me know on

May 10th

> what your results will be. You deserve a break just for being so

young and

> dealing with all of this. Take care and keep in touch.

Sincerely, Fran

> from Florida.

>

> [ ] Re: Numbness in my feet and Kineret?

>

> Fran,

> You may just want to mention the numbness you your feet to your

> primary, or Pulmonologist/Cardiologist. I know what you mean,

> steriods we tried a pack a few months ago, I stopped them early, it

> was only one dose pack but I am constantly thirsty, and it only

made

> it 10 times worse. I'm glad you don't have diabetes, and glad your

> husband has his under control for the most part. Everyone cheats.

> LoL! I think you had mentioned plantar faciatis (i know it's

spelled

> wrong-i'm running on 4 hours sleep for the past two nights it's

been

> the same, not sleeping well lately)When I was 16, I ruptured a

> tendon in my right ankle, I also had a major bout of plantar

> fasciatis. Doctor said you have feet of a 40 yr old woman. I was

> like gee doc thanks. Anywho, my actual pain of PA had begun to

> affect me by that time. My psoriasis actually started at about 12

> yrs old. I'm now 25, I live in ville FL. As far as it being

> under control, It's getting better. I was diagnosed finally at 21.

> After switching Rheumy's. I had extremely elevated Liver enzymes

for

> about 8 months, not to mention sed rate and white count ect. The

doc

> was concerned about it so I had to have a bone scan, to confirm it

> was just because the PA was active. There is a chemical that is

> found in bone, and your liver called Alkaline Phospase, not sure on

> the spelling, anyway, if there is errosion of the bone it can cause

> your liver enzyme to be extremely high,what they call a false

> result, because the bone errosion can cause it to be high in the

> blood, rather than there actually being a problem with the liver.

> Currently I am on Enbrel 50mg a week, sulfasalizine 2000mg a day,

> vioxx 10mg,daily and 1mcg of follic acid. Been on this combo since

> the middle of Jan. 04! When I was seen in March, early March my

> levels had begun to drop (in my labs that is) So I go back on May

> 10th, I will have more blood drawn and we shall see what they say

> then. I am hoping the blood test will say that it is going into

what

> the doctor calls " remission " . we all know remission doesn't last

> forever. but it's better than it being active. My pain levels have

> gone from 10+ to about a 2 or 3 most days. I think it's controlled

> to a point, although weather and outside factors still affect me. I

> hope you get some relief soon.

>

> Keli

[Guest guest]

Dear Keli, Sorry it took me so long to write back. It’s been a crazy few

days here. I’m not set up with oxygen at home to use at night. Last night

I thought it helped me but today I’m having a really hard time again. I

decided to try it today and I’ll see if it makes any difference. My oxygen

level dropped really low in the night and they were concerned about my heart

or my lungs not working while I was sleeping. (Not a bad way to go, but I’m

not quite ready yet…lol)

I sure understand how frustrated you can be on your medication and the

costs. My husband and I are in a small group at work for our insurance

since we are business owners and our premiums are sky high. For one month a

family of 3 costs us over $1700 a month and they still don’t cover

everything. I do have the right to choose my own doctor, but that’s about

it. Our prescription co-pays are high like yours and on some medications

they just refuse to fill them. On all the injectable drugs, they went

under my major medical plan so I had to pay 30%, With Humira and Enbrel that

30% was close to $300 a month. I guess in a way I should be glad I don’t

have to pay that, but I sure wish they had helped me more than hurt me. My

youngest daughter suffers from really bad migraines and our doctor has

prescribed more than “what they consider normal” so they refuse to pay for

more than 6 pills a month, yet she is allowed to take 6 pills in a day.

Every time we pick up the 6 pills, if it has been less than 30 days it’s

over $135.00. When you are in the middle of a migraine and they are the

only thing that helps, you don’t have a choice if you have the money. She

tries so hard to keep it close to $35, which is our copy on expensive drugs.

I know for a fact, this wouldn’t be a big deal if this were a cheap drug.

I have no idea what my monthly costs are…I just know they are really high.

But you don’t’ have much of a choice if you need to breath or need to get

away from the pain for a short while.

I think your psoriasis on the scalp sounds miserable. I think you are

really brave to put up with it. I’m lucky mine isn’t that bad. My legs

have gotten worse since this latest episode, but mainly they are just red

dots all over my legs and arms. The stories on here I read about seem so

much worse.

Keli, thanks so much for writing me. Knowing I’m not alone helps me deal

with all this much easier. Take care and hopefully when I write next things

will be much better. I know the new lung doctor I’m going too is highly

recommended. So I still have hope. Thanks again, Fran

---Original Message-----

From: Keli [mailto:krhoden78@...]

Sent: Thursday, April 29, 2004 12:13 PM

Subject: [ ] Re: Numbness in my feet and Kineret?

Fran,

My P never was too bad except the fact that my scalp was filled with

it, on my ears, inside my ears, behind my ears. I have dealt with

several spots on my back, stomach, my hips. My big problem was

always the pain before. I have been lucky in that the worst P was

where no one could really see it. bad for me,in on sort just because

I never thought to bring it up when I went to the doctor. Sometimes

thought it was my fault but now know differently. I know it would

itch and burn and sometimes bleed. But I did the whole creams and

ointments. I just think I could be so much worse off. I feel for you

very badly. I know all my meds are killing me, the cost that is.

This is for one month the copays that is. I made a list yesterday.

For Allergies, Zrytec D $45, Singulair $20, Nasocort AQ $20. Nexium

for acid reflux, $45, Migraines Atenolol $8, Imitrex $20. PA, Enbrel

$45, Vioxx $45, Sulfasalizine $8,Folic Acid $8 all totaling $254 a

month not including when and if I get sick or if I have a doctors

appt. The money I have to spend for health ins and copays far

outways what I can afford to live on. I'm sure you too know what I

mean. Lucky for me I don't really have anything " serious " . At least

not like CHF. You will be in my prayers. Good luck and God bless,

Keli