Re: New here & started MTX

[Guest guest]

JP,

First of all, with so many family members with the disease, you are a great

research

subject. If you'd like to help future generations please contact a major

university research

center. Not all genes involed with this disease have been identified. You

might be able to

have blood samples shipped to them at their expense.

Secondly, I'm so sad to hear bout your mother and hope that some therapy will

found to

help her. My mother has Lymphedema too and that in itself can make it hard to

get

around.

JP, I'm a 46 year old female. Now I realize I've had RA for 21 years but never

bad until 5

years ago. I woke up in July of 03 unable to bend my ankles or neck. I was in

pain but no

doctor was able to diagnose me (that's another story) until this Jan. What I

want to tell you

is that along with this flare in 03 came masculinization. Within a couple of

months I

started to bald-male pattern. I also noticed whiskers, a couple and my mustache

was

getting a little bit thicker. I kept asking to have my hormones checked but all

looked okay

until just last week an endocrinologist ordered a DHEA-s and it was sky-high.

Now I'm

being worked up for Cushing's syndrome, pituatary and adrenal dysfunction.

I suspect that perhaps a hormonal imbalance might have been what kicked the RA

into

active mode 5 years ago. It is interesting that you have problems as well.

Feel free to e-

mail me if you'd like to chat.

Take care and I hope we can get to the bottom of this one day,

>

> I have been a lurker for quite some time..... I am a 45 year old female

> with a fairly new diagnosis of RA.... (October 2007). I also have

> bilateral leg Lymphedema (primary), thyroid condition, Graves Disease

> and Fibromyalgia.

>

> At the same time I was diagnosed with RA, I was diagnosed with AGHD

> (Adult Growth Hormone Deficiency) and in February 2008, diagnosed with

> Adrenal Dysfunction.

>

> Yes, I still continue to work, though it is difficult..... I have cut

> down to part-time now and wonder how long I can even manage this.....

>

> I didn't start any treatment for my RA when diagnosed as I had just

> started the daily injections for my AGHD. One of the side-effects of

> the medication for that causes joints aches and swelling. Didn't want

> to start MTX and this med at the same time as it would be difficult to

> know which med was responsible for which side-effect, if any.....

>

> I started my MTX injections last week - 2 shots so far.... (I already do

> daily injections for the AGHD and I do my own weekly allergy injections,

> so just figured I'd avoid the stomach troubles from MTX pills - AND I'm

> allergic to corn which they use in the pills as part of the

> filler/binders).

>

> My first shot was okay.... as for my 2nd shot this past Wednesday, I

> woke up Thursday morning with a headache and it is now Saturday - still

> have this headache. I have been taking Tylenol Extra Strength for it

> fairly regularly, but it just won't abate.

>

> Is this typical of MTX?????

>

> I should also mention that my RA is hereditary in our family.... my

> Mother is fairly crippled with it as she went many long years with NO

> treatment due to no money to pay for medications. Only recently since

> moving to Ontario, Canada has she been on different biologics.... She's

> been on Prednisone 5mg daily and Arava 20mg daily for 3-4 years, but

> this past 10-11 months, has tried Enbrel with no improvement... Now on

> Humira for 6 weeks and still not much happening.....

>

> My Mother's sister has RA and my Mother's Aunt have RA.....

>

> I wonder what the chances either of my 2 sons (or 4 grandchildren) will

> have..... Myself and my 2 sons father both have RA..... with the

> hereditary factor on my side, it really makes me wonder.....

>

> Thanks for listening :-)

>

> JP

>

[Guest guest]

Hi JP,

I misread your post. YOU have the lympedema! Have you tried acupuncture? My

friend

had a terrible case in her arm after a mastectomy. No doctor could help her and

finally

she went to Chinese acupuncture therapist.. After a couple of months it

resolved, never to

return.

Good luck,

>

> I have been a lurker for quite some time..... I am a 45 year old female

> with a fairly new diagnosis of RA.... (October 2007). I also have

> bilateral leg Lymphedema (primary), thyroid condition, Graves Disease

> and Fibromyalgia.

>

> At the same time I was diagnosed with RA, I was diagnosed with AGHD

> (Adult Growth Hormone Deficiency) and in February 2008, diagnosed with

> Adrenal Dysfunction.

>

> Yes, I still continue to work, though it is difficult..... I have cut

> down to part-time now and wonder how long I can even manage this.....

>

> I didn't start any treatment for my RA when diagnosed as I had just

> started the daily injections for my AGHD. One of the side-effects of

> the medication for that causes joints aches and swelling. Didn't want

> to start MTX and this med at the same time as it would be difficult to

> know which med was responsible for which side-effect, if any.....

>

> I started my MTX injections last week - 2 shots so far.... (I already do

> daily injections for the AGHD and I do my own weekly allergy injections,

> so just figured I'd avoid the stomach troubles from MTX pills - AND I'm

> allergic to corn which they use in the pills as part of the

> filler/binders).

>

> My first shot was okay.... as for my 2nd shot this past Wednesday, I

> woke up Thursday morning with a headache and it is now Saturday - still

> have this headache. I have been taking Tylenol Extra Strength for it

> fairly regularly, but it just won't abate.

>

> Is this typical of MTX?????

>

> I should also mention that my RA is hereditary in our family.... my

> Mother is fairly crippled with it as she went many long years with NO

> treatment due to no money to pay for medications. Only recently since

> moving to Ontario, Canada has she been on different biologics.... She's

> been on Prednisone 5mg daily and Arava 20mg daily for 3-4 years, but

> this past 10-11 months, has tried Enbrel with no improvement... Now on

> Humira for 6 weeks and still not much happening.....

>

> My Mother's sister has RA and my Mother's Aunt have RA.....

>

> I wonder what the chances either of my 2 sons (or 4 grandchildren) will

> have..... Myself and my 2 sons father both have RA..... with the

> hereditary factor on my side, it really makes me wonder.....

>

> Thanks for listening :-)

>

> JP

>

[Guest guest]

Hi ,

I have PRIMARY Lymphedema - meaning I was born with it. Lymphedema

following breast cancers/mastectomy is secondary, though the risk is

still the same.

They advise AGAINST acupuncture. All one needs is a portal of entry

into the skin for a complication to set in.... in other words, a

cellulitis. God knows, I've had far too many of these which landed

me in hospital. A few times, my body went septic. I know that

acupuncture worked for your friend, but I'd be leery as a person with

LE and with the recommendations put out my the various Lymphedema

organizations.....

I would be interested though in a research study which concentrates

on the hereditary factors involved. My Mother and I both are already

in other types of study groups. Mom is in one that basically follows

the progress of Humira. I am in one that follows a newly diagnosed

person...

We are in Ontario... I wonder where I'd look into this further???

Thanks for the replies :-)

JP

> >

> > I have been a lurker for quite some time..... I am a 45 year old

female

> > with a fairly new diagnosis of RA.... (October 2007). I also have

> > bilateral leg Lymphedema (primary), thyroid condition, Graves

Disease

> > and Fibromyalgia.

> >

> > At the same time I was diagnosed with RA, I was diagnosed with

AGHD

> > (Adult Growth Hormone Deficiency) and in February 2008, diagnosed

with

> > Adrenal Dysfunction.

> >

> > Yes, I still continue to work, though it is difficult..... I have

cut

> > down to part-time now and wonder how long I can even manage

this.....

> >

> > I didn't start any treatment for my RA when diagnosed as I had

just

> > started the daily injections for my AGHD. One of the side-

effects of

> > the medication for that causes joints aches and swelling. Didn't

want

> > to start MTX and this med at the same time as it would be

difficult to

> > know which med was responsible for which side-effect, if any.....

> >

> > I started my MTX injections last week - 2 shots so far.... (I

already do

> > daily injections for the AGHD and I do my own weekly allergy

injections,

> > so just figured I'd avoid the stomach troubles from MTX pills -

AND I'm

> > allergic to corn which they use in the pills as part of the

> > filler/binders).

> >

> > My first shot was okay.... as for my 2nd shot this past

Wednesday, I

> > woke up Thursday morning with a headache and it is now Saturday -

still

> > have this headache. I have been taking Tylenol Extra Strength

for it

> > fairly regularly, but it just won't abate.

> >

> > Is this typical of MTX?????

> >

> > I should also mention that my RA is hereditary in our family....

my

> > Mother is fairly crippled with it as she went many long years

with NO

> > treatment due to no money to pay for medications. Only recently

since

> > moving to Ontario, Canada has she been on different

biologics.... She's

> > been on Prednisone 5mg daily and Arava 20mg daily for 3-4 years,

but

> > this past 10-11 months, has tried Enbrel with no improvement...

Now on

> > Humira for 6 weeks and still not much happening.....

> >

> > My Mother's sister has RA and my Mother's Aunt have RA.....

> >

> > I wonder what the chances either of my 2 sons (or 4

grandchildren) will

> > have..... Myself and my 2 sons father both have RA..... with the

> > hereditary factor on my side, it really makes me wonder.....

> >

> > Thanks for listening :-)

> >

> > JP

> >

>

[Guest guest]

Hi JP,

How interesting. I never knew of primary lymphedema. So then you had to cope

with that

as a child? Thanks for the heads up about acupuncture as a treatment for

lymphedema!

I'm not sure about Canada but there is a doctor in Houston. She is really an

expert on

Scleroderma and started the Scleroderma registry there to look for common

genetics in

family memebers. Her name is Dr. Maureen Mayes and I'm sure you can look up her

office

and ask about similar studies for RA. She wrote a wonderful book on Scleroderma

and

seems like a really dedicated physician/researcher.

take care,

> > >

> > > I have been a lurker for quite some time..... I am a 45 year old

> female

> > > with a fairly new diagnosis of RA.... (October 2007). I also have

> > > bilateral leg Lymphedema (primary), thyroid condition, Graves

> Disease

> > > and Fibromyalgia.

> > >

> > > At the same time I was diagnosed with RA, I was diagnosed with

> AGHD

> > > (Adult Growth Hormone Deficiency) and in February 2008, diagnosed

> with

> > > Adrenal Dysfunction.

> > >

> > > Yes, I still continue to work, though it is difficult..... I have

> cut

> > > down to part-time now and wonder how long I can even manage

> this.....

> > >

> > > I didn't start any treatment for my RA when diagnosed as I had

> just

> > > started the daily injections for my AGHD. One of the side-

> effects of

> > > the medication for that causes joints aches and swelling. Didn't

> want

> > > to start MTX and this med at the same time as it would be

> difficult to

> > > know which med was responsible for which side-effect, if any.....

> > >

> > > I started my MTX injections last week - 2 shots so far.... (I

> already do

> > > daily injections for the AGHD and I do my own weekly allergy

> injections,

> > > so just figured I'd avoid the stomach troubles from MTX pills -

> AND I'm

> > > allergic to corn which they use in the pills as part of the

> > > filler/binders).

> > >

> > > My first shot was okay.... as for my 2nd shot this past

> Wednesday, I

> > > woke up Thursday morning with a headache and it is now Saturday -

> still

> > > have this headache. I have been taking Tylenol Extra Strength

> for it

> > > fairly regularly, but it just won't abate.

> > >

> > > Is this typical of MTX?????

> > >

> > > I should also mention that my RA is hereditary in our family....

> my

> > > Mother is fairly crippled with it as she went many long years

> with NO

> > > treatment due to no money to pay for medications. Only recently

> since

> > > moving to Ontario, Canada has she been on different

> biologics.... She's

> > > been on Prednisone 5mg daily and Arava 20mg daily for 3-4 years,

> but

> > > this past 10-11 months, has tried Enbrel with no improvement...

> Now on

> > > Humira for 6 weeks and still not much happening.....

> > >

> > > My Mother's sister has RA and my Mother's Aunt have RA.....

> > >

> > > I wonder what the chances either of my 2 sons (or 4

> grandchildren) will

> > > have..... Myself and my 2 sons father both have RA..... with the

> > > hereditary factor on my side, it really makes me wonder.....

> > >

> > > Thanks for listening :-)

> > >

> > > JP

> > >

> >

>