Re: What a week

March 16, 2003

terri....... I know what you mean......

I don't know how te weather is in St. Louis but here we had 65 degrees

yesterday and above 70 today and it makes you feel young again....

I thought scraping your knees was the point of roller skating?

I got it backwards... I find my self too old to grow up.

I hope you have every week as good or better from now on. : )

love jerry

June 5, 2005

Hi Lawrence,

I'm sorry you have gone through so much! I get the recurring pa

relief vs. anemia. I know it is important to watch for bleeds.

oddly, since starting enbrel my hemoglobin has been higher. it does

make me wonder if they are correct for me and I get the anemia from

the autoimmune diseases and not just a bleed.

I am still exhausted with a higher red cell blood count though.....go

figure..

hang in,

marti

> So, it looks like my week from hell is finally over. Basically,

the search for some level of relief has taken me 400 miles and much

lost time, but I seem to have found a little. Here's the story:

>

> On March 4th I had a septoplasty done to aid in my sleep and

theoretically cause more healthful sleep. In order to prevent the

risk of infection, I went off my Humira 5 weeks in advance of the

surgery. I went back on it 2 weeks after the surgery. On March17th

I had an epidural done to ease the discomfort of some spinal stenosis

that had developed (Also related to my PA).

>

> As a result of going of the Humira for the surgery, I developed

some increased PA symptomology and lots more pain. But I resigned

myself to a level of patience, allowing the Humira to kick back in.

At my next rheumetologist appointment, I had some standard issue lab-

work done. I was called 2 days later and told my hemoglobin was low,

and actually, they had been watching it because it had been trending

downward for a few months.

>

> So off to the family practitioner.... again....

>

> Blood work with his office determined my hemoglobin was indeed low

and my iron very very low. So time to see the gastroenteritis... Oh,

and by the way- stop taking your Voltarin, it's probably giving you

an ulcer.

>

> A colonoscopy and endoscopy later, no idea where I'm losing blood.

More tests on the stomach to come.... Meantime, pain becoming

debilitating. So now, its time to go back to my rheumetologist...

That got me nowhere, so off to the Medical University of SC- down in

ton, some 100 miles from Columbia. 4:45 appointment, and I

hit traffic on I-26, so at 4:00 I call, letting them know I may a bit

late. 5:15 I arrive, and the rheumetology clinic is closed- guess I

should've gotten on the road earlier. Reschedule for a week later.

>

> Back to ton, still in a lot of pain- hoping to get some

relief. After a few consultations, we decide the only option left is

to increase the Humira dosing to every week. No new meds, no new

idea, and no pain meds. " If we get the PA under control, the pain

will be alleviated. " Is the ongoing theme. I certainly agree with

that notion, except we've been trying to get the PA under control

again for months now...

>

> This past Thurs, the pain became too much- so off to the doc-in-a-

box I run to get something, anything to ease the pain. A little

Tylox helps me get through the day- until I can get to the doctor

that did my epidural two months ago for a pain management

consultation. Finally, on Friday, she writes me a script for

Duragesic (fentanyl)... Saturday morning I apply my first patch- by

Saturday night, finally some comfort! Woooeeee!

>

> ---------------------------------

> Discover

> Have fun online with music videos, cool games, IM & more. Check it

out!

>

June 14, 2005

In a message dated 6/5/2005 4:04:37 P.M. Eastern Standard Time,

mlw402@... writes:

I get the recurring pa

relief vs. anemia. I know it is important to watch for bleeds.

oddly, since starting enbrel my hemoglobin has been higher. it does

make me wonder if they are correct for me and I get the anemia from

the autoimmune diseases and not just a bleed

sorry I am responding so late, but you might want to be checked for

pernicious anemia...its an autoimmune disease that makes the lining of your

stomach

unable to produce the chemical needed to absorb B12. Without B12, you can't

absorb iron. It's easily treated with B12 injections. Hope that helps.

June 16, 2005

hiya i have p/a and also was diagnosed a few years ago

with pernicious anemia aparantly they can both be

connected i get monthly injections of b12 which helps

kell x

__________________________________________________

July 30, 2006

Great . Just keep trying. It is hard but you can do it. I'm glad you are back to posting again. Remember to take it one day at a time. Worry about tomorrow when tomorrow gets here.

I also bought some blueberries, some low carb spaghetti and low carb spaghetti sauce. Oh yeah and some no sugar added peanut butter. So I am trying. I know I need to get back into exercising again, but I am just going to take one minute at a time right now. I'm sooooo stressed right now. Just have to keep taking deep breaths. I'm trying really hard to hold it together emotionally, but it is sooooooo hard. Well, just wanted to let you all know what is going on with me.

from MO.

July 31, 2006

Breathe . It will be ok. Tackle one thing at a time. Can you walk to anything? I know it maybe hard. BUT reasearch and see if you can walk to a bus line of some sort. I miss living in the city area. Being rural you cant live without a car. How about walking the track to get some stress out of you?

NH... Mom to Abby Liz 10/94 Anne 7/99

November 5, 2006

Hi Ray its good to here from you keep taking things easy for a few

more weeks yet I only started driving last week adn that was 5 weeks

after my surgery.

As for diet I have a diet sheet that I will e-mail that was given to

me by Carolyn from a hospital in the US (look out for an e-mail fron

.brown150@ntlworld,com) People hear have found it a great help.

Pippa x (England)

>

> Hi to all fellow achalasians and their friends and families. It is

now

> nine days since my surgery.So far everything seems to be ok, but I

> should have listened to ,one my wife and others here about taking

> things easy. I suppose being a typical male ,I thought that I was

ten

> feet tall and indestructable.Two days out of hospital and of I go

for a

> drive and a walk......wrong thing to do. I have been so tired

> since ,thus being no feed back from me on here.

> Eating seems to be fine, or I should say drink of soups and jelly

is

> fine.Haven't yet ventured on to anything more solid. Any advice as

to

> when it maybe ok to say try a soft pasta or something

similar.Should I

> avaoid dairy products? I see some have been instructed to take

various

> medications post surgery, I have been fortunate to have not needed

> any.Is this normal?

> I once again would like to thank the people here that have helped

me so

> far.

> Thanks and regards Ray

>

November 5, 2006

Ray,

U can take luke warm milk , curd./

Take soft solids for 10 days after surgery..

Then u can start soft bread n other more

Foods...after 3 weeks ,u can take normal foods..this is same as advised to Bimal

after surgery on 26th..

Plz check with your dr.as most have been advised for some medicines for 5 to 10

days...

Mukesh

What a week

Hi to all fellow achalasians and their friends and families. It is now

nine days since my surgery.So far everything seems to be ok, but I

should have listened to ,one my wife and others here about taking

things easy. I suppose being a typical male ,I thought that I was ten

feet tall and indestructable.Two days out of hospital and of I go for a

drive and a walk......wrong thing to do. I have been so tired

since ,thus being no feed back from me on here.

Eating seems to be fine, or I should say drink of soups and jelly is

fine.Haven't yet ventured on to anything more solid. Any advice as to

when it maybe ok to say try a soft pasta or something similar.Should I

avaoid dairy products? I see some have been instructed to take various

medications post surgery, I have been fortunate to have not needed

any.Is this normal?

I once again would like to thank the people here that have helped me so

far.

Thanks and regards Ray

November 5, 2006

Ray-Glad your wanting to go and out venture but do take it slow.As

far as your diet goes,didnt your Dr give you some type of guide

lineto follow? I cAN tell you that is on soft mushy stuff now

about 9 days later. He can have

potaoes,gravy,jellos,puddings,soups,pumpkin pie,ice

cream,oatmeal,even french fries,mac n cheese etc... Anything soft

and mushy like.Dr Rice said no bread,meat,caffeine,rice for a while.

Just try a lil a the time and see how it goes.As of now can

eat all those things and it seems to be going down wellwith out

pushing it down with force.In the begining he wanted to and DR Rice

said he needed to really focus on his swallowing and kinda learn how

to all over.I think things depend on the person as what you can

tolerate.They started on jellos and puddings at the

hospital,did they not do that for you?Just start out very slowly. i

wish you all the best in your new swallowing!! Take care and take it

slow! You will be up and at em in no time-just rest for now.

Tonia

-- In achalasia , " rayzor581 " <rayzor97@...> wrote:

>

> Hi to all fellow achalasians and their friends and families. It is

now

> nine days since my surgery.So far everything seems to be ok, but I

> should have listened to ,one my wife and others here about taking

> things easy. I suppose being a typical male ,I thought that I was

ten

> feet tall and indestructable.Two days out of hospital and of I go

for a

> drive and a walk......wrong thing to do. I have been so tired

> since ,thus being no feed back from me on here.

> Eating seems to be fine, or I should say drink of soups and jelly

is

> fine.Haven't yet ventured on to anything more solid. Any advice as

to

> when it maybe ok to say try a soft pasta or something

similar.Should I

> avaoid dairy products? I see some have been instructed to take

various

> medications post surgery, I have been fortunate to have not needed

> any.Is this normal?

> I once again would like to thank the people here that have helped

me so

> far.

> Thanks and regards Ray

>

November 5, 2006

Hi Tonia, yes my Dr. did give me advice on what to eat and not to eat. I was

wanting to get some advice from the people who have been there and done that

,that know what we are going through and have experienced what foods are

tollerable. Thankyou for your advice,it is much appreciated.

Thanks and Regards Ray.

>From: " toniasdogsandi " <toniasdogsandi@...>

>Reply-achalasia

>achalasia

>Subject: Re: What a week

>Date: Sun, 05 Nov 2006 13:41:00 -0000

>

>Ray-Glad your wanting to go and out venture but do take it slow.As

>far as your diet goes,didnt your Dr give you some type of guide

>lineto follow? I cAN tell you that is on soft mushy stuff now

>about 9 days later. He can have

>potaoes,gravy,jellos,puddings,soups,pumpkin pie,ice

>cream,oatmeal,even french fries,mac n cheese etc... Anything soft

>and mushy like.Dr Rice said no bread,meat,caffeine,rice for a while.

>Just try a lil a the time and see how it goes.As of now can

>eat all those things and it seems to be going down wellwith out

>pushing it down with force.In the begining he wanted to and DR Rice

>said he needed to really focus on his swallowing and kinda learn how

>to all over.I think things depend on the person as what you can

>tolerate.They started on jellos and puddings at the

>hospital,did they not do that for you?Just start out very slowly. i

>wish you all the best in your new swallowing!! Take care and take it

>slow! You will be up and at em in no time-just rest for now.

>

>Tonia

>

>-- In achalasia , " rayzor581 " <rayzor97@...> wrote:

> >

> > Hi to all fellow achalasians and their friends and families. It is

>now

> > nine days since my surgery.So far everything seems to be ok, but I

> > should have listened to ,one my wife and others here about taking

> > things easy. I suppose being a typical male ,I thought that I was

>ten

> > feet tall and indestructable.Two days out of hospital and of I go

>for a

> > drive and a walk......wrong thing to do. I have been so tired

> > since ,thus being no feed back from me on here.

> > Eating seems to be fine, or I should say drink of soups and jelly

>is

> > fine.Haven't yet ventured on to anything more solid. Any advice as

>to

> > when it maybe ok to say try a soft pasta or something

>similar.Should I

> > avaoid dairy products? I see some have been instructed to take

>various

> > medications post surgery, I have been fortunate to have not needed

> > any.Is this normal?

> > I once again would like to thank the people here that have helped

>me so

> > far.

> > Thanks and regards Ray

> >

>

_________________________________________________________________

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November 5, 2006

Dear Ray,

I'm so glad you doing ok. Just take it it one day at a time as I am

and everything will be Ok.

Thanks

Manny on Long Island

> > >

> > > Hi to all fellow achalasians and their friends and families. It

is

> >now

> > > nine days since my surgery.So far everything seems to be ok,

but I

> > > should have listened to ,one my wife and others here about

taking

> > > things easy. I suppose being a typical male ,I thought that I

was

> >ten

> > > feet tall and indestructable.Two days out of hospital and of I

go

> >for a

> > > drive and a walk......wrong thing to do. I have been so tired

> > > since ,thus being no feed back from me on here.

> > > Eating seems to be fine, or I should say drink of soups and

jelly

> >is

> > > fine.Haven't yet ventured on to anything more solid. Any advice

as

> >to

> > > when it maybe ok to say try a soft pasta or something

> >similar.Should I

> > > avaoid dairy products? I see some have been instructed to take

> >various

> > > medications post surgery, I have been fortunate to have not

needed

> > > any.Is this normal?

> > > I once again would like to thank the people here that have

helped

> >me so

> > > far.

> > > Thanks and regards Ray

> > >

> >

>

> _________________________________________________________________

> Advertisement: Meet Sexy Singles Today @ Lavalife - Click here

> http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Flavalife9%2Eninemsn%

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>

December 5, 2009

That’s great with the hits you’re getting, it just shows

with over 30,000 views, people are now very much researching into LDN so please

folks do help us help you by filling in this database if you haven’t already www.ldndatabase.com It doesn’t matter

where you’re from, it’s the information in it that is of vital international

importance.

Thanks again!

Jayne

Jayne Crocker

Chairperson

www.LDNNow.com

tel: +44 (0) 7877 492 669

Dr Steele, ITV's This Morning supporting LDN

From: LDN_4_Pets

[mailto:LDN_4_Pets ] On Behalf Of Donnelly

Sent: 05 December 2009 03:36

low dose naltrexone

Subject: [LDN_4_Pets] What a week

Hi

All

What

a week, the UK petition the ish petition and Jacinta's news WOW

The

database has had 30,562 visitors and still only 372 entries of the 100,000

people on LDN. The 372 is great and 372 thank you's to you all. Now its

nearly 1 year since we set this database up at www.ldndatabase.com so lets start getting

it filled up. If you are new to this group please take the 2 minutes to put

your details in. If you are a member of any other forums or LDN groups can you

please ask people there to add their name to the database. This will give so

many people in the future so much knowledge about how we are getting on with

LDN and help save lives and the quality of life for others.

so if you would like to see anymore questions added or changed please let me

know before I send the links.

Here's

to a great Christmas

www.ldndatabase.com

May 30, 2010

Mike

Were you aware of your diabetes before this admission?

If so, were you monitoring your levels and taking insulins?

I have been on steroids for 4 years and am on a very slow taper--1 mg. per

month.

My blood sugar is all over the place and as a prednisone diabetic, I allow a few

units for prednisone every time

I use my short acting insulin.

For some reason, long acting insulin makes me feel awful.

I have an excellent endo at Mayo Rochester who helped me to straighten all of

this out.

The long term goal for me is to get to 5mg and return there so they can help me

to get off of prednisone.

You need to monitor your sugars and keep track of them. I take mine before I

eat and then two hours later. Yes, 8x per day at least. I record what I eat

and also my activity level and the time I take the prednisone. In my case, I

find a 70 bump in my level from the prednisone alone and this is best noted at

lunch.

It is tricky and I have to be careful. I can not take pill forms of insulin and

often I feel sort of like I am in lactic acidosis which is sometimes preventable

with being totally hydrated but then prednisone has it's hand in the

sodium/potassium/hydration issue.

Do you see a good endocrinologist who is familiar with long term prednisone use

and it's attendant consequences such as diabetes and Cushings? If you don't

have one closeby, try to see a good one at the closest large medical center.

Ashleigh

________________________________

From: Mikey <mike.dmcbride@...>

Sent: Sun, May 30, 2010 8:22:15 AM

Subject: [ ] What a week

Saturday night one week ago I went to the ER as my nebs were not cutting into an

attack. Early Sunday the doc told me he recommended inpatient...my first admit

for asthma. As they were doing some blood work the doc came in and asked how

long I'd been diabetic. SURPRISE! Between the untreatted disease and the

steroids my sugars peaked at 550. Now down to the mid/upper 100's. At a follow

up with my doc on Friday he asked if the pulmo who gives me the Xolair has any

other tricks up his sleeve. He questions the efficacy of the Xolair at this

point. I went more than 6 months almost symptom free. Now i am back in the ER

about every 3 months or so with symptoms increasing.

2 questions:

1. Can/Does Xolair stop being as effective and need an increase in the amount

needed? I am wondering if I can develop a tolerance to the med.

2. OT: Any other diabetics here? How do you balance Prednisone and what it

does to blood sugars?

Thanks in advance.

Mike

May 30, 2010

Hi Mike. Sorry you are having all these problems. I can't answer the

xolair question so I will leave that to someone else.

I was just diag. last Oct. and only been on prednisone once since I found

out I am diabetic(type 2 not insulin, just oral pill)

My sugar levels did go up, althought not as much as yours...I was only on

the pred for the 10 days. my dr. didnt do anything different while I was on

the pred. but I belong to a diab. group and they suggested I talk to

him and have my diabetes meds (januvia) adjusted while on the pred. at this

point I had two days left so I didnt bother to call. I just cut my carbs

even lower and it help some. Are you on meds or insulin? Ask your dr. if

you should adjust your meds while on prednisone. The diabetes group I

belong to is very helpful if you are incline to join another group. I am

beginning to think I have more groups and friends in them then I do in my

actual life,lol. anyway let me know if you want their name, I think it is

just diabetes at though. good luck and let me know how you are

doing.

For now I am keeping my BG levels down some by oral meds, watching what and

how much I eat, and exercise although I need to do this one more.

take care. jean

On Sun, May 30, 2010 at 9:22 AM, Mikey <mike.dmcbride@...> wrote:

>

> Saturday night one week ago I went to the ER as my nebs were not cutting

> into an attack. Early Sunday the doc told me he recommended inpatient...my

> first admit for asthma. As they were doing some blood work the doc came in

> and asked how long I'd been diabetic. SURPRISE! Between the untreatted

> disease and the steroids my sugars peaked at 550. Now down to the mid/upper

> 100's. At a follow up with my doc on Friday he asked if the pulmo who gives

> me the Xolair has any other tricks up his sleeve. He questions the efficacy

> of the Xolair at this point. I went more than 6 months almost symptom free.

> Now i am back in the ER about every 3 months or so with symptoms increasing.

>

> 2 questions:

>

> 1. Can/Does Xolair stop being as effective and need an increase in the

> amount needed? I am wondering if I can develop a tolerance to the med.

>

> 2. OT: Any other diabetics here? How do you balance Prednisone and what it

> does to blood sugars?

>

> Thanks in advance.

>

> Mike

>

May 30, 2010

Thanks Ashleigh,

I have a long family history of diabetes but i had nver been diagnosed with it.

It was expected but I did not know it had arrived. I am on 20mg Pred for 2 more

days and then 10 mg for 4 days. We'll see how long I can go without it.

Usually about 6weeks.

I measure my sugar no less than 5x per day. i am currently on a sliding scale

dose of short acting insulin and 30u of a long lasting. I actually feel better

than I have in a very long time. My pulmonologist and internist have worked

togther in the past and should play nice with each other this time as well.

There is not an endrocrinologist in the area where I live. I will need to look

in Anchorage. Thanks!

Mike McBride

O God do not leave me. I have done nothing good in your sight, but according to

your goodness, let me now make a beginning of good. - Abba Arsenius

________________________________

From: Leigh McCall-Alton <mccallalton@...>

Sent: Sun, May 30, 2010 7:13:29 AM

Subject: Re: [ ] What a week

Mike

Were you aware of your diabetes before this admission?

If so, were you monitoring your levels and taking insulins?

I have been on steroids for 4 years and am on a very slow taper--1 mg. per

month.

My blood sugar is all over the place and as a prednisone diabetic, I allow a few

units for prednisone every time

I use my short acting insulin.

For some reason, long acting insulin makes me feel awful.

I have an excellent endo at Mayo Rochester who helped me to straighten all of

this out.

The long term goal for me is to get to 5mg and return there so they can help me

to get off of prednisone.

You need to monitor your sugars and keep track of them. I take mine before I eat

and then two hours later. Yes, 8x per day at least. I record what I eat and also

my activity level and the time I take the prednisone. In my case, I find a 70

bump in my level from the prednisone alone and this is best noted at lunch.

It is tricky and I have to be careful. I can not take pill forms of insulin and

often I feel sort of like I am in lactic acidosis which is sometimes preventable

with being totally hydrated but then prednisone has it's hand in the

sodium/potassium/hydration issue.

Do you see a good endocrinologist who is familiar with long term prednisone use

and it's attendant consequences such as diabetes and Cushings? If you don't have

one closeby, try to see a good one at the closest large medical center.

Ashleigh

________________________________

May 31, 2010

Hi Mike,

Sorry to hear about an ER visit. I'm currently admitted for 6th round of

pnuemonia since March, and so I'm in for testing and IV antibiotics.

I've heard alot about the effects of prednisone on blood sugar, but I'm

surprised you had that bad of a flare up while on the Xolair.

Curious to see what Doug says.

I hope you feel better soon, hear you having great weather!

Darcy

>

> Saturday night one week ago I went to the ER as my nebs were not cutting into

an attack. Early Sunday the doc told me he recommended inpatient...my first

admit for asthma. As they were doing some blood work the doc came in and asked

how long I'd been diabetic. SURPRISE! Between the untreatted disease and the

steroids my sugars peaked at 550. Now down to the mid/upper 100's. At a follow

up with my doc on Friday he asked if the pulmo who gives me the Xolair has any

other tricks up his sleeve. He questions the efficacy of the Xolair at this

point. I went more than 6 months almost symptom free. Now i am back in the ER

about every 3 months or so with symptoms increasing.

>

> 2 questions:

>

> 1. Can/Does Xolair stop being as effective and need an increase in the amount

needed? I am wondering if I can develop a tolerance to the med.

>

> 2. OT: Any other diabetics here? How do you balance Prednisone and what it

does to blood sugars?

>

> Thanks in advance.

>

> Mike

>

May 31, 2010

>

> Thanks Ashleigh,

>

> I have a long family history of diabetes but i had nver been diagnosed with

it. It was expected but I did not know it had arrived. I am on 20mg Pred for 2

more days and then 10 mg for 4 days. We'll see how long I can go without it.

Usually about 6weeks.

>

> I measure my sugar no less than 5x per day. i am currently on a sliding scale

dose of short acting insulin and 30u of a long lasting. I actually feel better

than I have in a very long time. My pulmonologist and internist have worked

togther in the past and should play nice with each other this time as well.

There is not an endrocrinologist in the area where I live. I will need to look

in Anchorage. Thanks!

> Mike McBride

>

Mike,

Many years on evil candy were responsible for my diabetes. No one in my family

has ever been diabetic that I know of. My dad must have had a cast iron

pancreas because he was addicted to sugar. It was his staple food and he never

was diabetic. No one in my family ever had to take as much steroids as I have.

Now, 5 years since Xolair took away my need for evil candy, I am STILL

diabetic. I have it under control with diet and pill. I WAS walking 30 minutes

every day till I developed Diabetic Neuropathy in my feet EVEN with a 6.4 A1C.

grrrrr!

I asked my doctor why I had foot pain even though my Diabetes was under control.

She said: " Yes your sugars are good however, you are STILL a diabetic. " I am

taking 150 mg of Lyrica and Metanx twice daily. It helps, but not as good as I

would like.

Not only was evil candy responsible for giving me diabetes, I had pre mature

cataracts, (My eye adventure stories are long and this is not an eye support

group) and spinal stenosis in my neck so bad that I have had 2 fusion surgeries,

one with a metal plate.

Yes, I am off steroids thanks to Xolair but irreversible damage has been done.

Thanks for letting me vent

Doug

Group founder

June 1, 2010

1. I had a similar situation this year and found out what I was dealing with was

not asthma but COPD. You need a full workup from your Pulmo. In my case, I knew

I had a great deal of scarring from having had asthma and many bouts of

pneumonia back in the dark ages. What was new was that I now have Dynamic Airway

Collapse because the repeated long-term use of corticosteroids has softened the

cartilage in my esophagus. So no more evil candy for me.

2. I've had diabetes for many years directly due to evil candy. I had a consult

with an endocrinologist (before all this), and we made a contingency plan to

deal with evil candy episodes. I highly recommend that you see one just to get

you started on a good program. My diabetes went unchecked for a long time

because they kept saying " it's just the prednisone " . My blood sugar was in the

800's and I risked permanent kidney damage.

There are two different types of insulin they can treat you with nowadays.

Fast-acting insulin to respond to your immediate intake of sugar, and

long-acting insulin to regulate your daily intake. Along with those, there are a

vast number of pills they can try before getting to the insulin stage. Doctors

used to think that once you were on insulin, you had to stay on it forever. In

fact, they can give you short bursts for situations like prednisone or

gestational diabetes, and you can stop it when you don't need it anymore.

At any rate, it's worth consulting an endocrinologist.

Best Wishes,

--Kitty