update and some questions

[Guest guest]

Hi ,

I lost about forty pounds of water in just a couple weeks, but that was just after a pregnancy which involved severe edema. While on prednisone, I also gained 10 pounds in just a few days. All of this was prior to DASHing, though. I also experience restless leg syndrome at night (typically between 10:00 pm and 1:00 am) - Spiro seemed to reduce that. Inspra doesn't help like Spiro did, but I have noticed the symptoms get worse after heavy salt days.

Update and some questions

I was livid the other night to find out that possibly my Altase wasgiving me all of the complications. Can you you imagine in one weekof no Altase I have gone from 241 lbs - 223 ... Can anyone really lose18 pounds in one week due to water weight --- coworkers and familyhave even noticed the sizable difference. If I miss one day of Spiro... I am on 200md per day ... I will actually gain 5-6 lbs that day. I really thought I was losing my mind --- Still experiencing some issues, wanted your thoughts on it --At about 10pm - 1am while resting and watching TV both hands and legswill get spasms of sorts. Not incredibly painful, but odd --- anyoneelse get nightspasms?I also at times try to go to sleep at midnight or 1am when I am trullytired and my heart feels like it is going to jump out of my chest ...I actually have to get out of bed and put my mind on something else,empty my bladder, and drink another full glass of water --- anyonewith these carzy night jitters and restlessnes?Lastly anyone know any specialist/experts with PA in the CentralFlorida area?Hope all are well and thanks for all the info --- this group is greatTampa, Florida

[Guest guest]

Please contact Dr. Arun Ganguly in Tampa VA. One of my former colleages and a real expert.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Hi ,

I lost about forty pounds of water in just a couple weeks, but that was just

after a pregnancy which involved severe edema. While on prednisone, I also

gained 10 pounds in just a few days. All of this was prior to DASHing, though.

I also experience restless leg syndrome at night (typically between 10:00 pm and

1:00 am) - Spiro seemed to reduce that. Inspra doesn't help like Spiro did, but

I have noticed the symptoms get worse after heavy salt days.

Sorry just kind of butting in.....but " I also experience restless leg syndrome

at night (typically between 10:00 pm and 1:00 am) - Spiro seemed to reduce

that. " this sometimes is a symptom of sleep apnea. It is my observation that a

large number of " us " suffer from sleep apnea. Have you been tested for SA?

<><May we all be DASHing!!!><>

Randy

[Guest guest]

In a message dated 7/5/05 9:01:01 AM, sheltonlayne@... writes:

Hi ,

I lost about forty pounds of water in just a couple weeks, but that was just after a pregnancy which involved severe edema.  While on prednisone, I also gained 10 pounds in just a few days.  All of this was prior to DASHing, though.  I also experience restless leg syndrome at night (typically between 10:00 pm and 1:00 am) - Spiro seemed to reduce that.  Inspra doesn't help like Spiro did, but I have noticed the symptoms get worse after heavy salt days.

Sorry just kind of butting in.....but "I also experience restless leg syndrome at night (typically between 10:00 pm and 1:00 am) - Spiro seemed to reduce that."  this sometimes is a symptom of sleep apnea.  It is my observation that a large number of "us" suffer from sleep apnea.  Have you been tested for SA?

<><May we all be DASHing!!!><>

Randy

[Guest guest]

Never been tested for it, but I don't have any of the other textbook symptoms (snoring, daytime sleepiness, etc.). My husband had sleep apnea and was treated for it, so I'm fairly familiar with it.

Re: Update and some questions

Hi ,I lost about forty pounds of water in just a couple weeks, but that was just after a pregnancy which involved severe edema. While on prednisone, I also gained 10 pounds in just a few days. All of this was prior to DASHing, though. I also experience restless leg syndrome at night (typically between 10:00 pm and 1:00 am) - Spiro seemed to reduce that. Inspra doesn't help like Spiro did, but I have noticed the symptoms get worse after heavy salt days.Sorry just kind of butting in.....but "I also experience restless leg syndrome at night (typically between 10:00 pm and 1:00 am) - Spiro seemed to reduce that." this sometimes is a symptom of sleep apnea. It is my observation that a large number of "us" suffer from sleep apnea. Have you been tested for SA?<><May we all be DASHing!!!><>Randy

[Guest guest]

For the enbrel payment just log on to enbrel.com and complete the

application-only 4 or 5 questions and real easy and quick to do.  They will

email you a couple of numbers for your pharmacist to use and then mail you a

permanent card and other enbrel info.  They have a couple of different payment

plans.  The one I use is for people with insurance but high deductibles.  I

just picked up my 3rd  script of the year yesterday  and have paid nothing so

far this year.  AS for prednisone for me it is a great drug.  I take a very

low dose with the enbrel and it helps tremendously.  The only side effect has

been weight gain (and I had a problem with that before I even started pred.) and

the ability to function normally.  At higher doses it does make me jittery,

cranky and causes sleep problems.  I have been on it off and on for about 7

years and been taking it full time for about a year now.  I weighted the

options between functioning and not

functioning a decided that I would rather take my chances with side effects 

and be able to  function now.  My doctor said not to worry about them on the

low dose that I take.  I do still try to come off of it from time to time but

never am successful for very long.  Hope you are feeling better and that the

enbrel works as well for you as it has for me.  linda

From: matygirl3 <matygirl3@...>

Subject: [ ] update and some questions

Date: Wednesday, March 10, 2010, 11:51 PM

 

This is my 3rd month on Simponi for RA and it has done nothing for me.

Not even a bit. So my doctors visit was today and we will be trying Enbrel next

month. They filled out all the paper work to start on it. I know there were

several of you that posted about getting help paying for it. I'll be looking

that up. I do have insurance but if I remember correctly I still have a high

monthly cost so I will be looking for info on that.

I've also read that some of you have posted your sed rate as over 100. The

doctor said something interesting to me today. I asked him the exact amount

mine was and he said that my normal is around 20 but that it was very high this

time. So I asked again what the number was this time and he said it was more

than double and very high for me at 45. So I was wondering if the sed rate is

different on everyone? I thought there was a normal level and high level but he

made it sound like lows and highs are different for different people.

I also got put on 2 weeks of prednisone. I have to take 2 tablets a day for 7

days and then 1 tablet for the last 7 days of 10MG. Is that normal? Cause I

felt wierd, loopy, not myself today after taking my first dose. I have never

wanted to try prednisone but gave in because of the pain and swelling.

He also prescribe Lyrica for fibromyalgia and pain and hopefully to help with

sleep. After reading all the side effects I'm wondering if I should take it or

not. Is anyone taking Lyrica? Has anyone had problems taking it?

I am hoping that my next set of drugs will help because I've been in lots of

pain for a year now. Any thoughts on my questions would be appreciated.

Although I don't post much I do read everyones posts that is why I am finally

breaking down and trying prednisone.

Thanks in advance to all of you,

Maty

[Guest guest]

Thanks for the info. The doctors office said they would send in the

prescription for enbrel and I will wait to see what they come up with, I guess.

Maybe I'll call to see what I can do.

As for prednisone, I just took my first dose and took it in the evening. It

took me around 4hrs to get over the dizziness, loopy feelings. I will probably

take that again in the evenings after I have my dinner and have no other plans

for the night. Since I will be taking it for 2 weeks only, I will tuff it out.

I've also had the weight gain problem. This since I started on Simponi. I've

gained 5lbs in 3 months. Not bad but when you consider that most of us are

already not at our target weight. Now I have to lose those 5lbs and the rest I

can't seem to lose. Why can't they invent a bed you lay on and it just melts

the fat away? LOL

Maty

>

> For the enbrel payment just log on to enbrel.com and complete the

application-only 4 or 5 questions and real easy and quick to do.  They will

email you a couple of numbers for your pharmacist to use and then mail you a

permanent card and other enbrel info.  They have a couple of different payment

plans.  The one I use is for people with insurance but high deductibles.  I

just picked up my 3rd  script of the year yesterday  and have paid nothing so

far this year.  AS for prednisone for me it is a great drug.  I take a very

low dose with the enbrel and it helps tremendously.  The only side effect has

been weight gain (and I had a problem with that before I even started pred.) and

the ability to function normally.  At higher doses it does make me jittery,

cranky and causes sleep problems.  I have been on it off and on for about 7

years and been taking it full time for about a year now.  I weighted the

options between functioning and not

> functioning a decided that I would rather take my chances with side effects 

and be able to  function now.  My doctor said not to worry about them on the

low dose that I take.  I do still try to come off of it from time to time but

never am successful for very long.  Hope you are feeling better and that the

enbrel works as well for you as it has for me.  linda

>

[Guest guest]

Maty,

I do not take lyrica, I did however take neurontin,( in the same family) and

stopped because of the side effects.  The one side effect that I have heard

universally with lyrica, is over indulging in alcohol has had some end up

unconscious in the ER ( we are talking a whole bottle of wine etc)...so be very

careful if you normally can have 1 drink and drive, think twice.

Normal sed rate for women is 10-20., with that said people sort of settle into a

certain range when they are healthy, mine not in a flair is around 45.....when

mine hits 90 plus its indicitve of  " flare " .  The only problem is that sed rate

is not specific.  If you have sprained your ankle from a fall and have

inflammation, whammo your sed rate will be elevated.  Pred has always worked

quickly for me in the past, the problem I would get into would be with a quick

wean, my symptoms would be worse then when I initially went on the pred.  I hope

that you start feeling better...

 Debra

________________________________

[Guest guest]

I am getting ready to take my third dose of Simponi. I got relief right away

after the second dose but it wore offin less than 2 weeks.  I can't take the

immuran as I get really sick.  So this weekend I am trying Arava.  Anyone with

pearls of wisdom for Arava?  I hear your pain and wonder if I don't need some

steroid intervention.  My hands are swollen and painful and I work full time. 

Good luck on Enbrel

Dale Ellen

[Guest guest]

HI Maty,

I'm new to the group. Have had Ra it seems like for ever. I am 52 now. I tried

simponi and had terrible results. I don't think the drug company has it tweeked

quite right and also I think they should go to two shots a month. My doctor said

that I was not the only one giving him back bad feedback.

Have you tried Humara with Arava. I got years of great relief. I believe deeply

in my doctor he is really one of the best this side of the Mississippi I'm told.

The simpossi card will pay your deductable for how ever many times you have

ordered.

I have taken Trazadone for sleep for over 13 years. I have had no side effects.

It helps me sleep deeper through pain. Doesn't do anything for your Fibro.

I do think sed rates are different for everyone.

I hope you get some relief.

Pj

>

> This is my 3rd month on Simponi for RA and it has done nothing for me. Not

even a bit. So my doctors visit was today and we will be trying Enbrel next

month. They filled out all the paper work to start on it. I know there were

several of you that posted about getting help paying for it. I'll be looking

that up. I do have insurance but if I remember correctly I still have a high

monthly cost so I will be looking for info on that.

>

> I've also read that some of you have posted your sed rate as over 100. The

doctor said something interesting to me today. I asked him the exact amount

mine was and he said that my normal is around 20 but that it was very high this

time. So I asked again what the number was this time and he said it was more

than double and very high for me at 45. So I was wondering if the sed rate is

different on everyone? I thought there was a normal level and high level but he

made it sound like lows and highs are different for different people.

>

> I also got put on 2 weeks of prednisone. I have to take 2 tablets a day for 7

days and then 1 tablet for the last 7 days of 10MG. Is that normal? Cause I

felt wierd, loopy, not myself today after taking my first dose. I have never

wanted to try prednisone but gave in because of the pain and swelling.

>

> He also prescribe Lyrica for fibromyalgia and pain and hopefully to help with

sleep. After reading all the side effects I'm wondering if I should take it or

not. Is anyone taking Lyrica? Has anyone had problems taking it?

>

> I am hoping that my next set of drugs will help because I've been in lots of

pain for a year now. Any thoughts on my questions would be appreciated.

Although I don't post much I do read everyones posts that is why I am finally

breaking down and trying prednisone.

>

> Thanks in advance to all of you,

> Maty

>