Re: ette/hair loss

[Guest guest]

That was me posting about hair loss. I was on mtx for a year with no

side effects, then started with some hair loss. My rheumy doubled my

folic acid prescription so we'll see if that helps. I'm not too

worried about it though. My mom was on mtx for over 10 years and had

hair loss for a good portion of that time, she never went bald. Just

thinner hair. She went off mtx after starting enbrel, but that was

years and years ago. She just got put back on it in order to start

Remicade soon (for cost reasons because she is going on disability).

Once I started Humira I really wanted off mtx but that was just after

two studies showed much better results when on a biological if also

on mtx. My rheumy is awesome (my mom thinks he's great and she

should know, she's had dozens of rheumys in the last 20 years) and he

said mtx is a very well tolerated drug and I should not worry. Is

there any study showing the link with cancer?

I'm glad that what you are taking now is working for you. It's good

you are watching the disease and are willing to consider stronger

stuff if the disease progresses. I only wish my mom had all these

options when she first got RA. If she had, she would not be as

disfigured as she is today.

Jennie

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Jennie,

>

> I have heard that MTX can actually cause cancer, long term. My

doctor told

> me this. Also enbrel, and the drugs like it, lower the immune

system, that

> is why when on it you have to watch for any infection as our system

can't

> fight them. I am hoping to continue with the antibiotic therapy as

it seems

> to be ok for me. My only deformity is on my thumb. If I ever see

things

> worsening, I will have to try something else. Also, enbrel has

been known

> to cause lymphoma in some folks. I know all drugs have side

effects but I

> am trying my best to keep them an a minimum.

>

> Best of health,

> ette

>

> P.S. I don't know much about the above drugs, but they do scare me.

> Someone just posted about hair loss on MTX, too, and the nausea

[Guest guest]

My rheumy gave me a choice between Enbrel and Humira. He said that

Remicade works best along with mtx. Since my body apparently doesn't

like mtx, Enbrel or Humira would be better choices. Of course they may

work better along with mtx, but Enbrel by itself is working very well

for me. I certainly hope it continues to work.

Sue

On Tuesday, July 27, 2004, at 03:53 PM, xponder70 wrote:

>

> Once I started Humira I really wanted off mtx but that was just after

> two studies showed much better results when on a biological if also

> on mtx.

>

[Guest guest]

Jennie,

Do your drugs help with the stiffness and pain as well as helping to stop

disfigurement?

Thanks,

ette

>

[Guest guest]

ette,

My understanding is that if you stop the stiffness (swelling) you

will prevent the disfigurement. The MTX and Humira keep the swelling

away. I am trying to get off the prednisone, weaning off now. I

take the folic acid to reduce MTX side effects, and I have no side

effects from the Humira at all. I think of Humira is a protein that

is counteracting another protein my body makes too much of, therefore

I am healthier with it than without it. I don't think of it as a

drug the way I think of MTX or prednsione. Just my $0.02.

Jennie

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Jennie,

>

> Do your drugs help with the stiffness and pain as well as helping

to stop

> disfigurement?

>

> Thanks,

> ette

> >

[Guest guest]

Jennie,

Can you take enbrel or humira (what is the difference) alone without MTX?

Are people helped by taking it alone? I don't like the swelling in my hands

and feet - it's been painful. A hand surgeon wanted to do surgery on all my

fingers to loosen them. I will think about adding a small amount of enbrel

or humira together with my antibiotics. I will ask the doctor in September

if that can be done.

Thanks again for writing,

ette

P.S. I will be on vacation starting on Saturday for a week. Should I let

the list know? I don't want to have a problem subscribing again.

[Guest guest]

Yes, you can take Enbrel or Humira without mtx, but the success rate

is lower. There are differences in the two drugs that I don't fully

understand, but from a patient standpoint the difference is in the

frequency and way you do the shot. Enbrel is twice a week and you

have to mix it yourself. It takes quite a while, I have watched my

mom do it. They are now letting Enbrel patients take it less

frequently by injecting two syringes at once, but my mom tried this

and it didn't last until the next injection so she went back to twice

per week. Humira is injected once every other week (two times per

month) and it comes in a prefilled syringe. It takes less than 5

minutes for the whole process and is very easy.

Surgery is very painful, expensive and time consuming. My mom has

had many surgeries on hands and feet, and made me promise I would

never let them operate on me for RA. She's had pins put in, bones

fused, other attempts at damage repair, and she does not feel a

single one benefitted her.

As for vacation, you don't need to unsubcribe. If you don't want to

receive emails, you can come to the site and turn email notification

off and then turn it back on when you return.

Have a nice vacation,

Jennie

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Jennie,

>

> Can you take enbrel or humira (what is the difference) alone

without MTX?

> Are people helped by taking it alone? I don't like the swelling in

my hands

> and feet - it's been painful. A hand surgeon wanted to do surgery

on all my

> fingers to loosen them. I will think about adding a small amount

of enbrel

> or humira together with my antibiotics. I will ask the doctor in

September

> if that can be done.

>

> Thanks again for writing,

> ette

>

> P.S. I will be on vacation starting on Saturday for a week.

Should I let

> the list know? I don't want to have a problem subscribing again.