Re: did i do the right thing?

[Guest guest]

,

Not sure what to advise you on the IV's, perhaps someone else will have

better advice there. I do have one thing for you to consider. Could

you have perhaps become a " human barometer " ? Before you think I'm

crazy, let me explain. I live just north of you, in Calgary, and I

definitely react badly to barometric changes. I also took a bit of a

downturn a couple of weeks ago and I definitely had a big setback

starting last Tuesday, which sounds like about the time you did. We had

a drop in temperatures a couple of weeks back, then had a major weather

change here on Tuesday, going from warm, dry conditions to cold and

rainy overnight (this poopy weather is still hanging in here - YUCK!).

If the weather reports I heard out of Spokane are right, you also

experienced a similar weather change, at least in terms of some sort of

weather front moving through. So, maybe take note of changing weather

conditions in your area and see if you react to them. I find whenever a

front moves through here, I have more pain, stiffness, fatigue, etc. I

can often forecast the start of a blizzard to within the hour of onset

just by observing how my fingers start to stiffen and ache -- when they

hurt right up to the tips, snow is about to start. I've even woken up

at night hurting all over to discover that it's started to snow. Not

much fun, except my kids seem to be entertained by my mystical talents.

The barometer is pretty unstable this time of year, in fact, Dr. Brown

found that September was one of the " trouble " months for rheumatic

patients. While this doesn't offer much to help you feel better, just

knowing that it can happen sometimes helps. Since I defintely react to

barometer changes, I watch the forecasts and don't plan much when big

changes are in store. If I don't react, great, but if I do, then I just

try to get more rest and pray for sun. Hope you start feeling better

soon and I really hope to see some sun again SOON!

Hugs,

a Peden

Fain wrote:

>...But two weeks ago, I began to get really, really tired. Then hands, wrists,

arms, feet and legs began to bother me. Then the crescendo three days ago when

I not only could not type or write because of the pain but could not lift

anything without having to use two hands. That is how bad the pain was. This

does not feel like it is in my muscles but in the bones. Cry at the drop of a

hat. Now - back in May, Dr. Sininott decided to UP my five days IV's to every

three months instead of every six. My herxes - and I read here that with

scleraderma, herxes are not as common as with RA - usually begin anywhere from

two weeks to four weeks after the five days of clindy. Four weeks ago, I

finished my five days of clindys here in Montana by a local doctor who could not

do the scheduled every six hours but had to do them with only four and a half

hours between. That worried me. My question is, I have never, ever had

problems like this before. If I sit downn for any length of time, I have a real

problem getting the limbs going again. (I think I sound like your RAers) and

shuffle until they are okay again. I am sort of coming out of this - at least

the difficult lifting a glass of water part. I was due to have an IV (the every

two weeks one now instead of monthly) Friday but passed it off until this

Tuesday. If this is herx - I didn't need to add more but to back off. If this

is flare - I needed to added more. So help me out here, gang. I have done so

very, very well and now this set back. Really scarey here. Thanks for the

help, friends. Love,

>

[Guest guest]

Doctor Sinnott gives TWO ivs a day. One early morning and then

another at least six hours later, for FIVE days. Because of the expense of my

traveling from Montana to Iowa every three months since he has boosted me up

to every three months from every six months, I found an elderly doctor here in

Billings who is willing to do the one in between my trips to Iowa. (I hope

this makes sense - as this way I have the five day iv's every six months each

place) But this elderly doctor does not work long hours and the best I can do

is four to five hours apart, depending on how long he will be there that

particular day. Dr. Sinnott also boosted my solitary iv's from once a month

to every two weeks. When I last saw Dr. Sinnott in May, he had just come from

a convention and (and Earl had just passed away from scleraderma). He said

even though I was coming along well, that scleraderma is just so difficult

that he wanted to make sure we stay ahead of it and booted up my treatment. I

think this was not a flare I went through but a herx from having these every

three months instead of six. I am coming out of it slowly and each day

getting better but still needing a lot of sleep. I used the ascorbid acid

twice and it sure did help with the pain. I think I took too much, however,

as we had 16 people here for Labor Day and a lot of that time I was locked in

the bathroom. :>( But the price was worth the lessening of the pain and I

will do it again if it comes back like that. Does this all make sense now? I

assumed that the five day protocol meant that EVERYBODY was getting iv's twice

daily on the five days. Just hope my liver does not shut down. Thank God for

water and Thystlyn. Love,

Adlard wrote:

>

> Hi ,

>

> Sorry you're feeling so bad.

>

> > But two weeks ago, I began to get really, really tired. Then hands,

> > wrists, arms, feet and legs began to bother me. Then the crescendo

> > three days ago when I not only could not type or write because of the

> > pain but could not lift anything without having to use two hands. That

> > is how bad the pain was. This does not feel like it is in my muscles

> > but in the bones. Cry at the drop of a hat. Now - back in May, Dr.

> > Sininott decided to UP my five days IV's to every three months instead

> > of every six. My herxes - and I read here that with scleraderma, herxes

> > are not as common as with RA - usually begin anywhere from two weeks to

> > four weeks after the five days of clindy. Four weeks ago, I finished

> > my five days of clindys here in Montana by a local doctor who could not

> > do the scheduled every six hours but had to do them with only four and a

> > half hours between. That worried me.

>

> I'm confused. Dr. Sinnott wants you to have 5 days of IVs every three

> months instead of every six. Nothing wrong with that and Dr. Sinnott

> really knows what he's doing.

>

> But why is your Montana doctor giving you IVs every four and a half hours?

> Or every six hours? The five day protocol is only one IV per day, 300mg

> the first two days, 600mg the next two days, 900mg the last day or rest of

> the week.

>

> No wonder you feel bad if you've had an IV every four and a half hours for

> five days straight. Or have I read something incorrectly in what you said?

>

> Chris.

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Re Dr.Sinnott and IV's,

I have a copy of the tapes from the last Road Back Foundation Physicians Conf

held in Los Angeles in March.In them Dr Sinnott says he " settled on a dose

which I utilize now,which is 900 mgms given twice a day for 5 days. " If

anyone wants a copy of these tapes I assume they are listed on their site

roadback.org

Hugs,

Lin

[Guest guest]

Hi ,

Sorry you're feeling so bad.

> But two weeks ago, I began to get really, really tired. Then hands,

> wrists, arms, feet and legs began to bother me. Then the crescendo

> three days ago when I not only could not type or write because of the

> pain but could not lift anything without having to use two hands. That

> is how bad the pain was. This does not feel like it is in my muscles

> but in the bones. Cry at the drop of a hat. Now - back in May, Dr.

> Sininott decided to UP my five days IV's to every three months instead

> of every six. My herxes - and I read here that with scleraderma, herxes

> are not as common as with RA - usually begin anywhere from two weeks to

> four weeks after the five days of clindy. Four weeks ago, I finished

> my five days of clindys here in Montana by a local doctor who could not

> do the scheduled every six hours but had to do them with only four and a

> half hours between. That worried me.

I'm confused. Dr. Sinnott wants you to have 5 days of IVs every three

months instead of every six. Nothing wrong with that and Dr. Sinnott

really knows what he's doing.

But why is your Montana doctor giving you IVs every four and a half hours?

Or every six hours? The five day protocol is only one IV per day, 300mg

the first two days, 600mg the next two days, 900mg the last day or rest of

the week.

No wonder you feel bad if you've had an IV every four and a half hours for

five days straight. Or have I read something incorrectly in what you said?

Chris.

[Guest guest]

Hi ,

On Thu, 7 Sep 2000, Fain wrote:

> think this was not a flare I went through but a herx from having these every

> three months instead of six. I am coming out of it slowly and each day

I'm sure you're right - that sure is a lot of clindamycin. Hope you cope

with it OK and soon feel better.

Chris.

[Guest guest]

Hi Heidi. I agree - this disease does suck! I personally believe that

honesty is the best policy and if this " dream job " really wants you to

work with them, they will understand and work with your RA, too. I

wish I was well enough to go back to work ........Doreen

[Guest guest]

Heidi and group

I isn't it your buisness if your out on STD. What exactly is STD. Is

it what I think it is.

Clora

[Guest guest]

Clora,

STD is short term disability. This could effect how an employer looks

at someone applying for a job.

This could also effect pre-existing conditions for insurance. Some

insurance companies will not cover you on what was existing before you

joined a group insurance at work, or private coverage.

Shirley

[Guest guest]

Heidi

The other company did not need to be informed but it is professional

courtsey to tell them. You also should of had the option for them to contact

your current employer or not STD is usually paid by and insurance and not

actually by the company. They are just the holder of the policy.

Heidi M

On Thu, Jul 24, 2008 at 9:06 AM, CLORA <clora4jesus@...> wrote:

> Heidi and group

> I isn't it your buisness if your out on STD. What exactly is STD. Is

> it what I think it is.

> Clora

>

>

>