Checking In

[Guest guest]

Glad to hear that you are getting a little relief. Hope that appointment is

very soon.

I like your prayers/warm hugs theory. You can always get those here without

an appointment.

----- Original Message -----

From: " Kim " <kim@...>

" " <egroups>

Sent: Wednesday, September 06, 2000 2:49 AM

Subject: [ ] checking in

> Hooray! For whatever reason, tonight the neck pain eased up enough that I

got 3 hours of sleep!!!!!!! It awakened me again at 12:00 and so I'm up

again. This time the pain wasn't *quite as bad as it has been. I'm just so

glad it finally eased enough that I got some sleep! Maybe the steroid inj.

worked, maybe it was all the prayers and warm hugs, or maybe it was just " my

time. " Nah, I like the prayers/warm hugs theory! Anyway, just wanted to

share the good news.

>

> The ortho nurse called at 4:30 and said she was having no luck getting me

in with their " preferred " neuro-surgeon this week, so she was waiting to

hear back from Dr. (my shoulder ortho) to see what he suggests or

what else he can do, and he was in surgery all day Tuesday. With any luck,

I should know something about an appointment by tomorrow (Wednesday.) How I

feel at this moment though, I *could* wait until next week if I had to,

without going totally in sane! LOL!

>

> Anyway, I'll check back later.

[Guest guest]

Kim,

Glad you had a little relief whatever was responsible!! Hopefully you are

on your way to recovery with the injection.

a

----- Original Message -----

From: Kim <kim@...>

<egroups>

Sent: Wednesday, September 06, 2000 3:49 AM

Subject: [ ] checking in

>

> Hooray! For whatever reason, tonight the neck pain eased up enough that I

got 3 hours of sleep!!!!!!! It awakened me again at 12:00 and so I'm up

again. This time the pain wasn't *quite as bad as it has been. I'm just so

glad it finally eased enough that I got some sleep! Maybe the steroid inj.

worked, maybe it was all the prayers and warm hugs, or maybe it was just " my

time. " Nah, I like the prayers/warm hugs theory! Anyway, just wanted to

share the good news.

>

> The ortho nurse called at 4:30 and said she was having no luck getting me

in with their " preferred " neuro-surgeon this week, so she was waiting to

hear back from Dr. (my shoulder ortho) to see what he suggests or

what else he can do, and he was in surgery all day Tuesday. With any luck,

I should know something about an appointment by tomorrow (Wednesday.) How I

feel at this moment though, I *could* wait until next week if I had to,

without going totally in sane! LOL!

>

> Anyway, I'll check back later.

>

[Guest guest]

On Sat, 10 Apr 2004 23:28:58 -0000, Martha wrote:

>Hiya,

>

>It's been quite a long time since I've been to this site, so I'm

>checking in.

>

>I have PPMS and have been on LDN--first 3.0, now 4.5mg--since August

>of last year. I've seen a progression in symptoms--more numbness and

>wobbliness, less time I can be on my feet before I get spaghetti legs.

>I must be in the one to two percent of MSers on LDN who show

>progression. I'm hesitant to stop taking it for fear I'll get worse

>quicker.

>

People like us with PPMS do not get much at all from LDN. If we had

the figures we would find that it is a lot more than one or two

percent that continue to show progression. I not even sure that LDN

helps to slow progression but I know it definitely hasn't stopped

mine.

Steve

[Guest guest]

On Sat, 10 Apr 2004 17:50:36 -0700 (PDT), you wrote:

>This post is bothersome. Are there any people on this board who are PPMS and

HAVE seen any beneficial results? It would seem not worth it to even try it, if

someone with PPMS is not going to benefit from it.

>Thanks for any input.

>Arlene

>

Yes, I saw some benefit for a few months when I first took LDN but

then I started to get worse again. So, it is obvious to me that the

LDN did not stop my progression.

Steve

[Guest guest]

Steve,

Do you take anything else with LDN? I mean; vitamins, minerals and

other supplements... Did you ever try to take LDN regularly with some

antioxidant i.e. Alpha Lipoic Acid?

Ciao,

Max

>

> >This post is bothersome. Are there any people on this board who

are PPMS and HAVE seen any beneficial results? It would seem not

worth it to even try it, if someone with PPMS is not going to benefit

from it.

> >Thanks for any input.

> >Arlene

> >

> Yes, I saw some benefit for a few months when I first took LDN but

> then I started to get worse again. So, it is obvious to me that the

> LDN did not stop my progression.

>

> Steve

[Guest guest]

On Sun, 11 Apr 2004 11:18:52 -0000, you wrote:

>Steve,

>

>Do you take anything else with LDN? I mean; vitamins, minerals and

>other supplements... Did you ever try to take LDN regularly with some

>antioxidant i.e. Alpha Lipoic Acid?

>

>Ciao,

>Max

>

Max,

Last year I took ALA for a while but it made no difference at all. I

take a mineral supplements every day. My current vitamins are B12, D3,

C and E. I started LDN in October 2002 so I have had plenty of time to

experiment and have tried taking various doses at various times with

various supplements. I have records of the whole period that include

all my supplements and my walking step counts. Detailed analysis of

the relationship between supplements and my walking abilities has

shown that very few supplements are beneficial. The most beneficial

supplement is selenium. Vit E shows a negative relationship so I'll

probably give it up soon.

Steve

[Guest guest]

>

> Do you take anything else with LDN? I mean; vitamins, minerals and

> other supplements... Did you ever try to take LDN regularly with some

> antioxidant i.e. Alpha Lipoic Acid?

>

With a raw food diet, I shouldn't need anything extra, but for

insurance I take alpha lipoic acid, an EM brew, and Vitamin C (all

antioxidants), MSM, Udo's Oils for omegas, evening primrose oil,

Vita-MIneral Green (a whole food), chlorella for mercury detox,

digestive enzymes, and systemic enzymes to eliminate critters. I also

eat sea vegetables for minerals.

Sorry, this if off-topic, but it would be irresponsible of me not to

spread the word. Here are raw diet links to people who've reversed

symptoms:

http://www.rawfoodsupport.com/read.php?f=1 & i=28713 & t=28713

http://www.rawfoodsupport.com/read.php?f=1 & i=35916 & t=35916

http://www.rawfoodsupport.com/read.php?f=1 & i=77439 & t=77439#reply_77439

http://matthewgrace.homestead.com/bio.html

http://www.rawpower.info/pr2003.cfm

[Guest guest]

hi julie

in answer to your question, my IgE before starting xolair was 720-

something. it took about five months before seeing ANY improvement,

and now, 10 months into xolair, i think i've leveled off, so to

speak, in terms of effectiveness.

i, like you, gained weight with the steroids (both the on and off

again prednisone and the high doses of ICS - flovent part of advair)

and regardless of how healthy i ate, i still gained weight. once the

xolair took effect, i reduced to only using the advair 500 twice a

day. it seemed within amonth of that, the weight literally melted

off. the only assumption i can come up with is that with the

constant flucuation of steroids, my body and its metabolism had no

idea what to do. i just finished a few weeks of pred, so i'm afraid

to see what the scale will say.

feel good!

heather

--- In , " " <cox58asthma@y...>

wrote:

>

>

> Hi everybody,

>

> I had my second Xolair shot yesterday. I have them every 2 weeks.

>

> Just wondering if how high your IgE count was before you started

> Xoliar has anything to do with how long it takes for you to see

any

> effects? Does anyone know?

>

> Might be interesting to compare beginning IgE counts and how long

> before any improvement was noticed.

>

> Mine was 1247. I haven't really noticed any difference yet, except

> maybe my nose isn't so stuffy all the time. I did feel better for

a

> few days after I recieved the 1st shot, but don't know if that was

> from the Pred dose being upped or Xoliar. My Dr lowered the Pred

> dose from 60mg to 40mg this time, to see how that goes, and if OK

> when I go in 2 weeks for my next shot, she'll lower it again. So

I

> guess if I can get off the Pred that will be an improvement seen

> from the Xolair, because I haven't been able to get off it

> otherwise. Put on 4 lbs in the last 2 weeks, and I'm really

> watching what I eat too. I've put on 20 lbs since this started in

> August, and what is really so fustrating is that I eat a low fat,

> low calorie, no sugar , no treats, no good stuff diet to try to

keep

> the weight down. If I don't get off the pred soon I'm going to be

a

> great naturally padded Santa for Christmas. Ah Well!!

>

> Addy,

> I think our heat bothered me when we first turned it on too. We

put

> in new allergy filters and that seemed to help. Hope it does for

> you.

>

> Hope everyone that's been under the weather gets feeling better

soon!

>

> Have a great weekend and a happy Thanksgiving!

>

>

[Guest guest]

,

That's great news about the weight. Maybe it will melt away as

quick as it came, when I get off the pred. From what I've read it

seems like the inhaled steroids like what is in Advair aren't

supposed to have as bad side effects as oral steroids, so maybe it

doesn't effect your weight so bad. I take Advair 500 also.

Have a happy thanksgiving.

-

-- In , " heather " <heaven1975@y...>

wrote:

>

>

> hi julie

> in answer to your question, my IgE before starting xolair was 720-

> something. it took about five months before seeing ANY

improvement,

> and now, 10 months into xolair, i think i've leveled off, so to

> speak, in terms of effectiveness.

>

> i, like you, gained weight with the steroids (both the on and off

> again prednisone and the high doses of ICS - flovent part of

advair)

> and regardless of how healthy i ate, i still gained weight. once

the

> xolair took effect, i reduced to only using the advair 500 twice a

> day. it seemed within amonth of that, the weight literally melted

> off. the only assumption i can come up with is that with the

> constant flucuation of steroids, my body and its metabolism had no

> idea what to do. i just finished a few weeks of pred, so i'm

afraid

> to see what the scale will say.

>

> feel good!

> heather

>

>

> >

> >

> > Hi everybody,

> >

> > I had my second Xolair shot yesterday. I have them every 2

weeks.

> >

> > Just wondering if how high your IgE count was before you started

> > Xoliar has anything to do with how long it takes for you to see

> any

> > effects? Does anyone know?

> >

> > Might be interesting to compare beginning IgE counts and how

long

> > before any improvement was noticed.

> >

> > Mine was 1247. I haven't really noticed any difference yet,

except

> > maybe my nose isn't so stuffy all the time. I did feel better

for

> a

> > few days after I recieved the 1st shot, but don't know if that

was

> > from the Pred dose being upped or Xoliar. My Dr lowered the

Pred

> > dose from 60mg to 40mg this time, to see how that goes, and if

OK

> > when I go in 2 weeks for my next shot, she'll lower it again.

So

> I

> > guess if I can get off the Pred that will be an improvement seen

> > from the Xolair, because I haven't been able to get off it

> > otherwise. Put on 4 lbs in the last 2 weeks, and I'm really

> > watching what I eat too. I've put on 20 lbs since this started

in

> > August, and what is really so fustrating is that I eat a low

fat,

> > low calorie, no sugar , no treats, no good stuff diet to try to

> keep

> > the weight down. If I don't get off the pred soon I'm going to

be

> a

> > great naturally padded Santa for Christmas. Ah Well!!

> >

> > Addy,

> > I think our heat bothered me when we first turned it on too. We

> put

> > in new allergy filters and that seemed to help. Hope it does

for

> > you.

> >

> > Hope everyone that's been under the weather gets feeling better

> soon!

> >

> > Have a great weekend and a happy Thanksgiving!

> >

> >

[Guest guest]

, I am so happy for you!!! What a nightmare you must have

lived before Xolair. I am still waiting for my insurance company to

approve. I already know I am a good candidate for it. I take allergy

shots and they help me. I just wish there was something to do about

fragrances. Sharon in Westminster

[Guest guest]

Thank you Sharon.

Life before Xolair really was horrible for me. I've been on social security

disability going on four years now. I could barely walk up stairs, I had to

stop half way or was practically fainting by the time I got to the top.

Something as simple as reading a story to my children was near impossible.

I'd gone into respiratory arrest TWICE in my sleep at home. Had countless

911 calls and ER trips and hospital stays. My last one was in May of 2005

and I spent 6 days in ICU.

I couldn't go anywhere without packing my nebulizer in the trunk, if we were

taking a trip, we had to map out hospitals along the route... it was just

scary. I've literally tried just about every asthma/allergy med out there

at one time or another. I was terrified to be alone in the house with my

children because before I met my fiancee, I was a single mom and I hated the

idea of a middle of the night 911 call. I had to teach them both at very

young ages to call 911 and my daughter has known how to inject me with an

epi-pen since she was 5 years old.

I've been on prednisone for seven years, and I was taking 60mg per day for

the last 2 years straight. And STILL flaring up on that dose. I just

started weaning off at the end of October. I've been taking Xolair since

April of 2005, and I noticed an improvement by October. A HUGE improvement.

So good luck with your approval, I'll say a prayer that you get it. I'm

living proof that it really is a life changing medication. I'm one of the

lucky ones. My insurance company approved me 100%. I don't even have a

copay. My doctor's office does the injections and I wait 30 minutes after

each set. I get my blood pressure and temperature taken before the

injection and right before I leave and that's it. I used to have to wait

two hours, but after 6 months, they cut my wait down. I hope it goes as

well for you.

Best of luck, breathe easy.

~

P.S. I know what you mean about the fragrances. I still have a problem with

that. I have to cover my face if I'm walking through Filene's or Macy's. I

wish they'd pass a law prohibiting the spraying of all that junk in the air.

-------Original Message-------

From: sharon blizzard

Date: 01/21/06 10:14:23

Subject: [ ] Re: checking in

, I am so happy for you!!! What a nightmare you must have

lived before Xolair. I am still waiting for my insurance company to

approve. I already know I am a good candidate for it. I take allergy

shots and they help me. I just wish there was something to do about

fragrances. Sharon in Westminster

[Guest guest]

Hi :

As an RN, I understand a little more than most people. When I wanted to

decrease my hormone replacement therapy, I had terrible mood swings. I asked to

wean myself off and the medical assistant in the doctor's office said it wasn't

possible. But as an RN, I knew differently. I weaned myself very slowly,

halving one pill a week for 3-4 weeks, then two pills a week, etc. By the end

of several months, I was at the dose where I wanted to be and I had absolutely

no mood swings.

I'm not suggesting you do as I do because I think with a medicine like

Prednisone, you need to work with your doctor. But if you are having withdrawal

problems, you need to contact your doctor and go even slower. Doctors tend to

make changes too rapidly, in my way of thinking.

Good luck.

Carol Corley

Currier wrote:

Coming off of the prednisone is really scary. I'm experiencing horrifying

mood shifts despite being on an antidepressant and anti-anxiety meds. I

seem to have no appetite, almost constant nausea and bowel trouble as well.

I have to remind myself to eat three meals a day and sometimes have to take

a phenergan before hand so that my meals won't come back up on me if the

nausea is bad. I'm also going through terrible muscle and joint aches.

Seems like every time I drop the dose 24-48 hours later I wake up so sore I

feel like I've gotten the flu. Even my SKIN seems to hurt some days!

[Guest guest]

Well, my computer crashed and is in the shop so I have been going to

the library but its not easy to devote the same amount of time that you

can at home.

I am officially due next week! Things have happened that led me to

believe he would come sooner but no baby yet! I have my 39th week

check-up on Tuesday. Your prayers and good thoughts are appreciated.

[Guest guest]

I’ll pray for you and your baby.

God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of

Sent: Sunday, September 03, 2006

12:22 PM

Rheumatoid Arthritis

Subject:

Checking In

Well, my computer crashed and is in the shop so I have

been going to

the library but its not easy to devote the same amount of time that you

can at home.

I am officially due next week! Things have happened that led me to

believe he would come sooner but no baby yet! I have my 39th week

check-up on Tuesday. Your prayers and good thoughts are appreciated.

[Guest guest]

Glad to hear the good news, Sharon! Thanks for sharing it.

Sierra

>

> Went to the Dr today. I'm still in remission...4 months now! I am

still having some tendonitis in a shoulder from a fall so he injected

it with cortisone. Last time it worked wornders on the tendonitis.

>

> I'm only taking 220 mg naprosen am and pm, and 7 mtx tabs once a

week. A year ago I had to have my wedding ring cut off because it was

so tight it was damaging the tendons. Amazing. Hope everyone is doing

well

>

> Sharon in Phoenix

>