Re: Weight Loss...Meds....Methotrexate, Others?

[Guest guest]

Hi Hollie,

Not sure where you read that info. The nausea I've read about, which if

it continues and is constant enough I suppose it could cause weight

loss, but anorexia is one I haven't seen. My guess is that someone

with enough nausea to caus weight loss, wouldn't likely stay stay on

the drugs very long.

Weight gain has been my experience, though I wouldn't just attribute it

to the drugs. Age, lack of mobility and many other things are just as

likely suspects.

Stay Well,

[Guest guest]

Hi Hollie

My experience has been like Kathy's. When the disease is active I tend

to lose weight. When the drugs calm things down a bit I tend to gain

weight. I take MTX by injection 20 mg / week and haven't had nausea or

weight loss yet.

Best wishes -

>

> I read on the internet, patient responses to side effects of

> Methotrexate. Many reported nausea and weight loss (10 kg quite soon

> after starting. Anorexia was also listed as a side effect.

>

> Have any of you experienced weight loss from any of these PA meds?

>

> In my opinion this would be a great side effect to have.

>

> Thanks,

>

> Hollie

>

> [Editor's Note: For me, weight GAIN has been the outgrowth of these

meds. Kathy F.}

>

[Guest guest]

Don't I WISH?! I did lose 1 pound the first month I was on MTX

because of severe nausea. But I took care of that with Zantac and now

I've gained back that pound plus he brought along a buddy or two the

second month.

Since I started this last long-term flare which finally led to a

proper diagnosis of PA, I have gained about 30 pounds. I only started

on meds the last few months. Most of that gain was in the previous 3

years or so while I was starting with the skin symptoms and increasing

intermittent and roving joint pain.

Is there something about the inflammatory process that causes weight

gain, or at least makes it very difficult to lose?

Until now, I have been very active. Last August (before PA diagnosis

and worst of this flare) I was walking/jogging 6-18 miles per day - I

was working out morning, noon, and evening for about 1 hour each

time. Partly in an effort to lose some of that weight and partly

hoping to someday run a half marathon. I did not lose one single

ounce in a solid month of working out like that - can you believe????

Until May, I was working out 3/4 to one hour per weekday, alternating

aerobic and weight training. No loss of weight. Now I can't work out

at all, not even walking more than about 15-30 minutes. You would

think I would blow up like a balloon but I've only gained a couple of

pounds in the last 4 months.

Nothing makes sense. Neither exercising nor not excercising seems to

budge the scales much. And this weird effect started about the time

this PA was beginning to progress in me.

Makes me very confused...

sherry z

>

> I read on the internet, patient responses to side effects of

> Methotrexate. Many reported nausea and weight loss (10 kg quite soon

> after starting. Anorexia was also listed as a side effect.

>

> Have any of you experienced weight loss from any of these PA meds?

>

> In my opinion this would be a great side effect to have.

>

> Thanks,

>

> Hollie

>

> [Editor's Note: For me, weight GAIN has been the outgrowth of these

meds. Kathy F.}

>

[Guest guest]

What a bummer, I was already counting on weight loss as the main

good thing that would come of this disease. Now I can't find the

internet article where individuals posted about their 10 kgs loss

within a month.

Sherry, I've had a really hard time losing for quite a few years,

chalked it up to menopause and CFS. I started thinking about how

many pounds the fluid and inflammation add...it must be something?

Somehow I've got to conquer this and exercise, how in the heck to

people in wheel chairs stay in shape? My osteoporosis and

cholesteral need exercise, for that I need legs, I'm starting to

look forward to joint replacements.

This long term flare you mention is interesting (I'm new to this).

I guess I'm flaring now since my labs are so bad and my hip has been

eaten up. How can you tell you're in a flare? What happens when

you aren't in a flare?

I only eat 1000 calories a day.

Thanks,

Hollie

> Don't I WISH?! I did lose 1 pound the first month I was on MTX

> because of severe nausea. But I took care of that with Zantac and

now

> I've gained back that pound plus he brought along a buddy or two

the

> second month.

>

> Since I started this last long-term flare which finally led to a

> proper diagnosis of PA, I have gained about 30 pounds. I only

started

> on meds the last few months. Most of that gain was in the

previous 3

> years or so while I was starting with the skin symptoms and

increasing

> intermittent and roving joint pain.

>

> Is there something about the inflammatory process that causes

weight

> gain, or at least makes it very difficult to lose?

>

> Until now, I have been very active. Last August (before PA

diagnosis

> and worst of this flare) I was walking/jogging 6-18 miles per day -

I

> was working out morning, noon, and evening for about 1 hour each

> time. Partly in an effort to lose some of that weight and partly

> hoping to someday run a half marathon. I did not lose one single

> ounce in a solid month of working out like that - can you

believe????

> Until May, I was working out 3/4 to one hour per weekday,

alternating

> aerobic and weight training. No loss of weight. Now I can't work

out

> at all, not even walking more than about 15-30 minutes. You would

> think I would blow up like a balloon but I've only gained a couple

of

> pounds in the last 4 months.

>

> Nothing makes sense. Neither exercising nor not excercising seems

to

> budge the scales much. And this weird effect started about the

time

> this PA was beginning to progress in me.

>

> Makes me very confused...

>

> sherry z

>

[Guest guest]

Holly

I've had good fairly comfortable results doing water exercises in a

pool. Started out trying this during physical therapy, then I started

doing exercises in the local public pool when I can't weight bear.

For me the secret sauce was consistency. It wasn't at 2 or 3 months

that I saw results, it was after that and slowly. Weight that comes

off slow tends not to come back so fast, IME...

My peak was north of 165 lbs ( I'm short, I was quite the pork barrel

), I now vary from 135-145 depending on how active the disease or I

are... A couple times of lazy non-vigilance put me within sight of my

peak, but now it's a pretty solid habit.

Best wishes -

>

> Somehow I've got to conquer this and exercise, how in the heck to

> people in wheel chairs stay in shape? My osteoporosis and

> cholesteral need exercise, for that I need legs, I'm starting to

> look forward to joint replacements.

>

[Guest guest]

I read on the internet, patient responses to side effects of

Methotrexate. Many reported nausea and weight loss (10 kg quite soon

after starting. Anorexia was also listed as a side effect.

Have any of you experienced weight loss from any of these PA meds?

I wish! I lost 20 pounds when I was first diagnosed, but it wasn't

because of any nausea or anything; it was because I was able to be

weaned off the steroids I'd become dependent on for my asthma after

starting the Methotrexate for the P.A. I have severe asthma and

allergies along with the P.A.; I don't know if the Methotrexate

wiped my immune system out enough that the asthma/allergies improved

along with the P.A. or whether it was just coincidental that my new

allergist at the time revamped my whole medication regimen at the

time I started the Methotrexate.....but since being on the

Methotrexate, my allergies and asthma have improved tremendously.

Anyway, that's beside the point; the point is that since that

initial 20 pound weight loss, I have plateaued out and not lost a

single pound despite dieting (and now that I have a new hip,

exercise as well). I am overweight, so I would LOVE to lose more

weight.

Take care, Wanda

[Guest guest]

Hi Hollie...

I understand the wheel chair thing completely... I am a double

amputee, and I have no answer to the exercise question. It's not like

I have legs to run, or walk, or bike ride, or even swim... I do sit-

ups, push-ups, leg-lifts, that's about it... I'm looking around,

investigating, talking to friends and a couple of physical therapists

I know... I'm hoping to find an aerobic activity that people in wheel

chairs, especially amputees can engage in to get their heart rate

going... not sure what to do about it... If I find something, I'll

let ya know... In the mean time, keep up whatever you know to keep

going... email me if you need to... I have a lot of experience in

wheel chairs...

(on a personal note, I finally got my first outing in my electric

chair... All in all it wasn't to bad... The sun shining, a cool

breeze... about 68 degrees... oooooo, how nice... I was freaked every

time I came up on a sloped curb... I was just waitin' for the chair

to roll out of control or to tip over... EEEEEKKK!!! I made it

though...)

gots ta go... my hand is getting sore from typing... damn other

hand... and it hurts like the dickens... see ya'll later...

michael

>

> What a bummer, I was already counting on weight loss as the main

> good thing that would come of this disease. Now I can't find the

> internet article where individuals posted about their 10 kgs loss

> within a month.

>

> Sherry, I've had a really hard time losing for quite a few years,

> chalked it up to menopause and CFS. I started thinking about how

> many pounds the fluid and inflammation add...it must be something?

>

> Somehow I've got to conquer this and exercise, how in the heck to

> people in wheel chairs stay in shape? My osteoporosis and

> cholesteral need exercise, for that I need legs, I'm starting to

> look forward to joint replacements.

>

> This long term flare you mention is interesting (I'm new to this).

> I guess I'm flaring now since my labs are so bad and my hip has been

> eaten up. How can you tell you're in a flare? What happens when

> you aren't in a flare?

>

> I only eat 1000 calories a day.

>

> Thanks,

> Hollie

>

> > Don't I WISH?! I did lose 1 pound the first month I was on MTX

> > because of severe nausea. But I took care of that with Zantac and

> now

> > I've gained back that pound plus he brought along a buddy or two

> the

> > second month.

> >

> > Since I started this last long-term flare which finally led to a

> > proper diagnosis of PA, I have gained about 30 pounds. I only

> started

> > on meds the last few months. Most of that gain was in the

> previous 3

> > years or so while I was starting with the skin symptoms and

> increasing

> > intermittent and roving joint pain.

> >

> > Is there something about the inflammatory process that causes

> weight

> > gain, or at least makes it very difficult to lose?

> >

> > Until now, I have been very active. Last August (before PA

> diagnosis

> > and worst of this flare) I was walking/jogging 6-18 miles per

day -

> I

> > was working out morning, noon, and evening for about 1 hour each

> > time. Partly in an effort to lose some of that weight and partly

> > hoping to someday run a half marathon. I did not lose one single

> > ounce in a solid month of working out like that - can you

> believe????

> > Until May, I was working out 3/4 to one hour per weekday,

> alternating

> > aerobic and weight training. No loss of weight. Now I can't work

> out

> > at all, not even walking more than about 15-30 minutes. You would

> > think I would blow up like a balloon but I've only gained a couple

> of

> > pounds in the last 4 months.

> >

> > Nothing makes sense. Neither exercising nor not excercising seems

> to

> > budge the scales much. And this weird effect started about the

> time

> > this PA was beginning to progress in me.

> >

> > Makes me very confused...

> >

> > sherry z

> >

>

[Guest guest]

Well, I've not the expert on this by a long shot. I'm newly

diagnosed and this is only my second flare that has put me down, and

it is way worse than the first 10 years ago. What I'm calling a

flare started with fingers and soles of feet that looked like raw

meat - peeling, fiery red, excruciatingly painful. Swelling of

several entire fingers and all toes - in fact both entire feet.

Along with horrific tendon and fascia pain in both feet and elbow

tendons. Followed by severe joint pain all over the body. I'm

saying " long term " because it was pretty bad for about 3 months. I

was living on painkillers. I " m in my second month of MTX taken

weekly and I'm much improved. Though still taking painkillers,

aspirin AND Naproxen along with the MTX.

From what I read on here, though, there are multiple different

patterns of what happens to folks. Some people don't have P on

palms and soles, some get eye involvement, some get a breathing

problem from lack of chest expansion due to inflamed rib cartilege,

some get badly swollen and hot and red joints, and on and on.

Hollie, I had also chalked the weight gain up to menopause and

quitting smoking. But I'm getting more and more suspicious that PA

may have played at least some part in it as well. And it never

really made sense because I was exercising faithfully and eating a

very healthy diet of whole grains, grilled fish and chicken, and

fresh fruits and veggies all along.

My rheumy is recommending aquatic exercise, but it is a long way for

me to go. A friend who has RA and I are looking into carpooling,

though. I have not been able to do my normal exercise since April.

Only a little stretching.

I'm curious to see how others will describe a flare.

best regards,

sherry z

[Editor's Note: Sherry, I don't remember where you live, but if an aquatics

program is very far away, you can order a CD or tape from the Arthritis

Foundation on Aquatics for Arthritics. This has a series of exercises you can

perform in a pool. Once you're familiar with the tape, perhaps you and your

friend could convince a nearby hotel with a pool to let your do your exercises

at an hour when few hotel guests use the pool. Many hotels/motels with indoor

pools allow area residents to use pool facilities for a nominal fee, especially

if they have arthritis. It's worth making a few phone calls to hotels in your

area. Kathy F.]

>

> What a bummer, I was already counting on weight loss as the main

> good thing that would come of this disease. Now I can't find the

> internet article where individuals posted about their 10 kgs loss

> within a month.

>

> Sherry, I've had a really hard time losing for quite a few years,

> chalked it up to menopause and CFS. I started thinking about how

> many pounds the fluid and inflammation add...it must be something?

>

> Somehow I've got to conquer this and exercise, how in the heck to

> people in wheel chairs stay in shape? My osteoporosis and

> cholesteral need exercise, for that I need legs, I'm starting to

> look forward to joint replacements.

>

> This long term flare you mention is interesting (I'm new to this).

> I guess I'm flaring now since my labs are so bad and my hip has

been

> eaten up. How can you tell you're in a flare? What happens when

> you aren't in a flare?

>

> I only eat 1000 calories a day.

>

> Thanks,

> Hollie

>

>

[Guest guest]

Sherry,

I started noticing weight gain about 1 year after

having chemo tx., then my left finger swelled up so

big that I couldn't move it, it was straight all the

time. Because everyone was saying that since I had

cancer that every time I had an ache or pain or even a

mole that didn't look right I was running to the

doctor. So I thought I would wait this one out,well my

finger never went down. I worked in a factory then,

and the guy next to me said Sharon you really need to

have that finger looked out. MY husband at the time,

said OH there's nothing wrong with you it's all in

your head. I went to the Dr. anyway. I was Dx. with

gout and she did blood work for RA and Lupus. Both

came back neg. she also made me an apt with a Rheumy

she sent over the xrays of my back from a year before.

Dr. Cohen my Rheumy only took xrays of my hands. He

did lots of blood work, he checked for Lupus again. He

sent me to have tests run to see if I had carpal

tunnel syndrome. That test came back neg. So I went

back to the Dr. who said I had HLA-B27 which is a gene

for PA. He showed me the x rays of my hands the bones

in the fingers at the first joint look like a pencil

in a cup. Which he said was normal for PA. That I had

Ankylosing spondilitis, my hips were so bad from the x

rays my PCP sent over that he didn't need to take

anymore x rays of my hips or back. He said that my

lumbar vertebrae were fused together. How they did it

he didn't know. That between the shoulders they are

fusing also. I asked how he knew about my hips, he had

me turn around so that my back was facing him and

pushed with 2 fingers on the pressure points and I

fell to the floor. All this time I was gaining weight,

from the depression meds and from the meds for gout.

He put me on the sulfa drug and had me come back in 4

weeks. I had gained 20 lbs. in that 4 weeks and the

sulfur drug wasn't helping any, I tried plaquenil, and

Methotrexate (sp) ended up in the hospital with the

last drug. He told me he couldn't do anything else for

me because I had cancer 3 times. I was too high a risk

for other drugs. Put me back on the sulfa drug and

come back in 4 weeks. 4 weeks later 20 more lbs. on

me. The sulfa drug didn't take any of the fluid off

from between my knuckles. He aid well think about

Enbrel and come back in 4 weeks. I went to my PCP

first, she said no way to any of the drugs, that I

would be dead in no time because my immune system was

depleted from chemo. She has Been my Dr. for 14 yrs.

and I trust her, she is the type that will go over

everything with you and spend 2 hours talking to you

if needed. I now weigh 180lbs. Before my health

started to decline I weighed 100 lbs. I am 5'4 " and I

feel like a whale. I didn't gain this much weight when

I was pregnant!!! Then with the shortness of breath

it's hard to walk with the added fat I am too lazy to

try to walk to the mail box! Plus the hips are not too

easy to walk with either.

__________________________________________________

[Guest guest]

Kathy, what a great idea! I would never have thought of that. Thanks,

sherry z

> [Editor's Note: Sherry, I don't remember where you live, but if an

aquatics program is very far away, you can order a CD or tape from the

Arthritis Foundation on Aquatics for Arthritics. This has a series of

exercises you can perform in a pool. Once you're familiar with the

tape, perhaps you and your friend could convince a nearby hotel with a

pool to let your do your exercises at an hour when few hotel guests

use the pool. Many hotels/motels with indoor pools allow area

residents to use pool facilities for a nominal fee, especially if they

have arthritis. It's worth making a few phone calls to hotels in your

area. Kathy F.]

Editor's Note: It's not my original idea. One of our members suggested it

awhile back and I think it's a gem so it's now part of my repetoire. We have a

second home in the mountains near Woodstock (yes, peace, love and rock and roll,

groovy man) and the nearest aquatics program is about 20 miles away. I

contacted a Holiday Inn about 8 miles from there, and they are delighted to let

me use their pool for $12 a month. I opted, instead, to go with the formal

aquatics program further away, but it is good to know that there is pool

availability so close if I want or need it. Hope you meet with similar success.

By all means get the tape from the Arthritis Foundation as there are pool

exercises for many parts of the body that I wouldn't have thought of. Kathy F.]

>

[Guest guest]

my husband is 6'1 " and since he has been on MTX & Remicaid has lost close to

45lbs... he is only 146lbs and can't seem to gain an oz!!!!!

[Guest guest]

The thing is water aerobics aren't weight bearing so how can they help

fend off osteoporosis? With my CFS (or whatever it is) if I got

dressed, went to a pool, did the water exercises, got out, dried my

hair, put on make up to look half way decent....that would use up all

my energy for the whole day and I might relapse from the exertion the

next day.

Being a guy, , you wouldn't have to worry about your hair or make

up, so a bit easier for you.

Thanks,

Hollie

[Editor's Note: Hollie, you are wrong about aquatics not being weight bearing.

Many aquatics exercises ARE weight bearing and even those that are not help to

increase your overall fitness and that can help prevent you from falling - a

major osteo risk factor. Here's an article I think you may find of interest:

" An aquatic environment provides a safe and relaxed environment for individuals

who have osteoporosis. It is important for individuals to become involved in

exercise that provides both weight-bearing and resistance exercises (National

Osteoporosis Foundation, 1998). These exercises can occur in an aquatic setting.

A weight-bearing, water-based exercise program can allow an individual an

opportunity to improve levels of functional fitness (flexibility, coordination,

agility, strength/endurance, and cardiorespiratory endurance) (Bravo, Gauthier,

Roy, Payette, & Gaulin, 1997). However, such exercises have not shown the

ability to increase bone mass. Nevertheless, by increasing functional fitness,

they can help prevent falls, which is one of the leading causes of bone

fractures in individuals with osteoporosis. Some examples of weight-bearing

exercises in the water include:

walking (forward, backward, side stepping, crossover stepping, stiff leg, lunge

walking, marching, and jogging),

jumping (straight jumps, tuck jumps, jumping jacks),

cross-country ski movement.

The shallower the water, the greater the impact imposed on the bones.

Resistance exercises can be performed in the water using a variety of buoyant

objects such as floating barbells, flutter boards, pull buoys, and " noodles "

(long noodle-like piece of foam). These objects can be pushed down in the water

in a variety of ways to perform exercises for various muscle groups.

Objects such as webbed gloves, hand paddles, and fins also increase the

resistance on the muscles. Using surgical tubing in the water to create

resistance is another source that can enhance muscular development (Lepore,

Gayle, & s, 1998).

Swimming is an activity that does not require weight bearing. It can however,

increase an individual’s cardiovascular endurance, muscular endurance, and

overall fitness level.

It is necessary that an individual with osteoporosis consult with a physician,

adapted physical activity consultant, physical therapist, or occupational

therapist before beginning an aquatic-based exercise program. The specialists

would be able to design a program that would meet individual needs based on an

individual’s physical abilities.

References

Bravo, G., Gauthier, P., Roy, P.M., Payette, H., & Gaulin, P. (1997). A

weight-bearing, water-based exercise program for osteopenic women: its impact on

bone, functional fitness, and well-being. Archives of Physical Medicine and

Rehabilitation, 78(12), 1375-80.

Lepore, M., Gayle, G. W., & s, S. (1998). Adapted Aquatics Programming: A

Professional Guide. Champaign, IL: Human Kinetics. "

Kathy F.]

> Holly

> I've had good fairly comfortable results doing water exercises in a

> pool. Started out trying this during physical therapy, then I started

> doing exercises in the local public pool when I can't weight bear.

>

> For me the secret sauce was consistency. It wasn't at 2 or 3 months

> that I saw results, it was after that and slowly. Weight that comes

> off slow tends not to come back so fast, IME...

>

> My peak was north of 165 lbs ( I'm short, I was quite the pork barrel

> ), I now vary from 135-145 depending on how active the disease or I

> are... A couple times of lazy non-vigilance put me within sight of my

> peak, but now it's a pretty solid habit.

>

> Best wishes -

[Guest guest]

The men I know who are in wheel chairs are very buff and good

looking. Now that my legs are going I'm wondering what they are

doing and I'm going to ask them. I assume they are doing weights

and lots of upper body work, maybe with special equipment. I'll let

you know when I find out.

I know another guy who has terrible back problems and can't get much

exercise yet he's totally buff (and good looking). I can call him

to see what he's doing. I hope it's not just good genetics.

Thanks,

Hollie

> Hi Hollie...

> I understand the wheel chair thing completely... I am a double

> amputee, and I have no answer to the exercise question. It's not

like

> I have legs to run, or walk, or bike ride, or even swim... I do

sit-

> ups, push-ups, leg-lifts, that's about it... I'm looking around,

> investigating, talking to friends and a couple of physical

therapists

> I know... I'm hoping to find an aerobic activity that people in

wheel

> chairs, especially amputees can engage in to get their heart rate

> going... not sure what to do about it... If I find something, I'll

> let ya know... In the mean time, keep up whatever you know to keep

> going... email me if you need to... I have a lot of experience in

> wheel chairs...

> (on a personal note, I finally got my first outing in my electric

> chair... All in all it wasn't to bad... The sun shining, a cool

> breeze... about 68 degrees... oooooo, how nice... I was freaked

every

> time I came up on a sloped curb... I was just waitin' for the

chair

> to roll out of control or to tip over... EEEEEKKK!!! I made it

> though...)

>

> gots ta go... my hand is getting sore from typing... damn other

> hand... and it hurts like the dickens... see ya'll later...

>

> michael

>

[Guest guest]

Sharon, you've really been through too much!

Those depression meds really pile on the weight and prevent loss.

I'm taking an old fashioned one, Doxepin, and keep it to a bare

minimum or I swell up like a balloon. Everything I've read about

the SSRIs indicates they also cause weight gain. It looks like many

of the meds for PA and the other meds you take also cause weight

gain. Maybe happy but fat isn't so bad?

I notice some of you know all about the genes for PA, HLA-B27. Is

it complicated to get a gene test?

Thanks,

Hollie

> Sherry,

> I started noticing weight gain about 1 year after

> having chemo tx., then my left finger swelled up so

> big that I couldn't move it, it was straight all the

> time. Because everyone was saying that since I had

> cancer that every time I had an ache or pain or even a

> mole that didn't look right I was running to the

> doctor. So I thought I would wait this one out,well my

> finger never went down. I worked in a factory then,

> and the guy next to me said Sharon you really need to

> have that finger looked out. MY husband at the time,

> said OH there's nothing wrong with you it's all in

> your head. I went to the Dr. anyway. I was Dx. with

> gout and she did blood work for RA and Lupus. Both

> came back neg. she also made me an apt with a Rheumy

> she sent over the xrays of my back from a year before.

> Dr. Cohen my Rheumy only took xrays of my hands. He

> did lots of blood work, he checked for Lupus again. He

> sent me to have tests run to see if I had carpal

> tunnel syndrome. That test came back neg. So I went

> back to the Dr. who said I had HLA-B27 which is a gene

> for PA. He showed me the x rays of my hands the bones

> in the fingers at the first joint look like a pencil

> in a cup. Which he said was normal for PA. That I had

> Ankylosing spondilitis, my hips were so bad from the x

> rays my PCP sent over that he didn't need to take

> anymore x rays of my hips or back. He said that my

> lumbar vertebrae were fused together. How they did it

> he didn't know. That between the shoulders they are

> fusing also. I asked how he knew about my hips, he had

> me turn around so that my back was facing him and

> pushed with 2 fingers on the pressure points and I

> fell to the floor. All this time I was gaining weight,

> from the depression meds and from the meds for gout.

> He put me on the sulfa drug and had me come back in 4

> weeks. I had gained 20 lbs. in that 4 weeks and the

> sulfur drug wasn't helping any, I tried plaquenil, and

> Methotrexate (sp) ended up in the hospital with the

> last drug. He told me he couldn't do anything else for

> me because I had cancer 3 times. I was too high a risk

> for other drugs. Put me back on the sulfa drug and

> come back in 4 weeks. 4 weeks later 20 more lbs. on

> me. The sulfa drug didn't take any of the fluid off

> from between my knuckles. He aid well think about

> Enbrel and come back in 4 weeks. I went to my PCP

> first, she said no way to any of the drugs, that I

> would be dead in no time because my immune system was

> depleted from chemo. She has Been my Dr. for 14 yrs.

> and I trust her, she is the type that will go over

> everything with you and spend 2 hours talking to you

> if needed. I now weigh 180lbs. Before my health

> started to decline I weighed 100 lbs. I am 5'4 " and I

> feel like a whale. I didn't gain this much weight when

> I was pregnant!!! Then with the shortness of breath

> it's hard to walk with the added fat I am too lazy to

> try to walk to the mail box! Plus the hips are not too

> easy to walk with either.

>

> __________________________________________________

>

[Guest guest]

This is interesting and hopeful. Is he cutting back on calories

eaten? Is it due to nausea? Is he doing much exercise?

Please tell...

Hollie

> my husband is 6'1 " and since he has been on MTX & Remicaid has lost

close to 45lbs... he is only 146lbs and can't seem to gain an oz!!!!!

>

[Guest guest]

Same with me, I lost 45 pounds since on Metho, I can eat anything. My wife gets

very frustrated watching me eat, she can eat one pound of food and gain 3. Bob

B

angela albright <angelaonruby@...> wrote: my husband is 6'1 " and

since he has been on MTX & Remicaid has lost close to 45lbs... he is only 146lbs

and can't seem to gain an oz!!!!!

[Guest guest]

Holly - Kathy beat me to it with a great reference article. No, I

don't have to worry about my makeup and hair, but I did have fatigue -

and still do most days, but less so with the program of exercise and

stretching.

I hope you can find something that works for you! -

> The thing is water aerobics aren't weight bearing so how can they help

> fend off osteoporosis? With my CFS (or whatever it is) if I got

> dressed, went to a pool, did the water exercises, got out, dried my

> hair, put on make up to look half way decent....that would use up all

> my energy for the whole day and I might relapse from the exertion the

> next day.

>

> Being a guy, , you wouldn't have to worry about your hair or make

> up, so a bit easier for you.

>

> Thanks,

>

> Hollie

> [Editor's Note: Hollie, you are wrong about aquatics not being

weight bearing. Many aquatics exercises ARE weight bearing and even

those that are not help to increase your overall fitness and that can

help prevent you from falling - a major osteo risk factor. Here's an

article I think you may find of interest:...

[Guest guest]

I lost ~35 lbs when I started on sulfasalazine. Have

kept it off for about a year, now. I just wasn't

hungry, at all. I was taking 3000 mg/day, 1/2 in the

morning, 1/2 at night.

[Guest guest]

Hollie - my derm included a test for HLA-B27 in my initial bloodwork.

I test negative for it, by the way. It is not the only gene marker

linked to PA. There are many others. My rheumy has not done any

further testing since she has diagnosed the PA based on clinical

findings anyway, so what would be the point.

> I notice some of you know all about the genes for PA, HLA-B27. Is

> it complicated to get a gene test?

>

[Guest guest]

Hollie - I agree about the exercise being virtually the only thing I

would accomplish. I figure that by the time I drive there and do the

stuff and drive back, that will be about it for the day. But here's

what I've decided - everything else will just have to go undone. I

think that if I don't get some exercise I will be in much worse shape

pretty quickly. And it's not like I'm getting a whole done as it is.

Just going to the grocery wipes me out, but I'll let a friend pick up

groceries for me and I'll spend my energy on some exercise. I really

am sure that regular exercise is very important to overall health and

needs to be a top priority.

I'll let you know how it goes.

sherry z

>

> The thing is water aerobics aren't weight bearing so how can they

help

> fend off osteoporosis? With my CFS (or whatever it is) if I got

> dressed, went to a pool, did the water exercises, got out, dried my

> hair, put on make up to look half way decent....that would use up all

> my energy for the whole day and I might relapse from the exertion the

> next day.

[Guest guest]

Glad to hear some stories of weight loss on some of these meds...hope

I'll be one of the lucky ones that lose weight! Geez...35 pounds, I'd

be in heaven.

When my husband lost 13 pounds during hip replacement surgery he was

determined to keep it off. He weighs himself EVERY DAY and if even 1

pound up, he cuts back on food. I guess that's how to keep it off.

Hollie

> I lost ~35 lbs when I started on sulfasalazine. Have

> kept it off for about a year, now. I just wasn't

> hungry, at all. I was taking 3000 mg/day, 1/2 in the

> morning, 1/2 at night.

>

[Guest guest]

Hollie,

It is a simple test to take they just draw blood from

you and test for the gene,something else I just wanted

to tell you, my sister is in this group also. She had

blood work done and her gene is HLA-cw6 also for PA.

She is a paranoid skitzo on seroquel for that, and

none of the meds for PA can be taken while on

Seroquel.She lives with me also,along with my Dad who

is in a wheelchair and senile. I guess you could say

the only sane one here is my 14 yr old son!!!!!

Happy and fat that's what Kathy(my sis) and I both

say. She has gained weight since seroquel. Our skinny

days are gone!!! We sit and laugh about it,all we can

do. We are not giving up!!! Hopefully they will come

out with a drug we can both take! Sharon

__________________________________________________

[Guest guest]

Sharon, I have been waiting for that med a loooong time, it must be

coming soon!

Hollie

> Happy and fat that's what Kathy(my sis) and I both

> say. She has gained weight since seroquel. Our skinny

> days are gone!!! We sit and laugh about it,all we can

> do. We are not giving up!!! Hopefully they will come

> out with a drug we can both take! Sharon

[Guest guest]

About the gene testing.....I haven't had one either, my dx was made on clinical

observation, xrays and lack of other positive blood test results. I didn't

care, I finally had a real diagnosis and was ok with that. At the time, my

insurance would not have paid for the testing because I was beyond

child-bearing. However, upon changing doctors this summer, my new PCP asked me

why it had not been done. He told me that I simply have to be HLA B27 positive,

he's 99% sure without the test....then came his thought provoking

question..... " Don't your kids deserve to know? .... If your test is positive and

your child begins to experience early symptoms of this disease, you'll make

sure they get an early diagnosis and start aggressive treatment to limit their

damage. " So, it's not for me, but for my kids that he is seeking insurance

approval to pay for my gene testing. Either way, he plans to do the testing

with my next physical.

Sheri

---------------------------------

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[Guest guest]

Congratulations Sheri, you've found a real keeper of a doc! -