Re: My Wifes Battle

January 10, 2010

Phil, I'm sorry to hear about your wife's struggle.

Some rheumatologists use Arava (leflunomide) as a substitute for methotrexate.

Has she seen only one rheumatologist? Has she been to the Hospital for

Special Surgery? They have a very strong rheumatology department.

http://www.hss.edu/

Not an MD

On Sun, Jan 10, 2010 at 7:40 AM, phl300 <phl300@...> wrote:

> Hello All, I have been a member of this group for a relatively short period

of time. My wife 39 yr's years old has been battleing sero-neg RA for 2 years

now. The rumy at this point has to switch the meds once again. Here is the

history. First was Humera, this didn't really work for 3 months. Switched to

Embrel with MTX. The MTX made her through up everything 4 days out of the week.

We tried both oral and sub-q MTX. She no longer can take the MTX at all. Is

there any substitute for MTX is my first question. Anyway we tried embrel next.

That seemed to be working well untill we thought she had lymphoma. Stopped all

treatment untill biopsy showed neg for lymphoma. Went back to Embrel and now has

not been helping much. Anyone with a similar story? Any ideas? Sorry to spill my

guts but this disease is killing her slowly and hurts me to watch. It has been a

very hard last 2 years. I would appreciate any comments... Thank you......Phil

W. LI NY

January 10, 2010

Hi Phil:

Â Â Â Â I feel so bad about your wife,s struggle with RA.Â It is one ugly

disease.Â I wish I had some answers to your questions.Â What I personally know

about these meds. is what works for one, might not work for the next person.Â

It is all trial and error.Â Perhaps your wife should seek out another Rheumy

for his/her opinion.Â It is truly hard to see someone you love suffer day in

and day out.Â

Â Â Â Â I wish you wife some pain free days ahead.Â It is so hard for the RA

patient to have this ugly disease, and very hard to cope with it each day.Â God

Bless the both of you.Â She is lucky to have a caring, loving husband.

Â

Hugs,

Â

Barbara

From: phl300 <phl300@...>

Subject: [ ] My Wifes Battle

Date: Sunday, January 10, 2010, 8:40 AM

Â

Hello All, I have been a member of this group for a relatively short period of

time. My wife 39 yr's years old has been battleing sero-neg RA for 2 years now.

The rumy at this point has to switch the meds once again. Here is the history.

First was Humera, this didn't really work for 3 months. Switched to Embrel with

MTX. The MTX made her through up everything 4 days out of the week. We tried

both oral and sub-q MTX. She no longer can take the MTX at all. Is there any

substitute for MTX is my first question. Anyway we tried embrel next. That

seemed to be working well untill we thought she had lymphoma. Stopped all

treatment untill biopsy showed neg for lymphoma. Went back to Embrel and now has

not been helping much. Anyone with a similar story? Any ideas? Sorry to spill my

guts but this disease is killing her slowly and hurts me to watch. It has been a

very hard last 2 years. I would appreciate any comments... Thank you......Phil

W. LI NY

January 10, 2010

Phil,

I am sorry to hear about you and your wife's struggles. I have had severe RA and

osteoarthritis since 2000 and have tried many different combinations of drugs.

The first thing I would like to say is this: My husband and I married in 2002.

Every other week, he was the one who gave me my Humira shots. Most of the time,

he is very supportive of me (there are some days he struggles also with me

having this disease). If it weren't for him, I am not sure I would make it. It

takes a very special person, such as yourself, to help those of us with this

disease to make it through each and every day. Please continue to support your

wife - this is a lifetime disease and a daily struggle - but also take a little

time for yourself. You are very special as well as your wife.

Regarding the medications, I believe that Humira and Enbrel are in the same

" category " of drugs. I am not a physician so this is something you need to talk

to your arthritis doctor about. All I know is this: When Humira was not working

for me, I asked my arthritis dr. about Enbrel and he stated that they were in

the same " category " so if one was not working, the other would not work. He

switched me to Remicade; I was on that for 2 years and it did not work.

Finally, he switched me to Orencia. I have been on this for 2 years now and it

works mostly. I am able to at least function - there is still pain and I am on

pain killers daily.

RA, when active, is a disease that will destroy joints. My RA, now, is not as

active. I just have to live with the pain of a little RA activity as well as

the damage which has been done in the past.

Please ask your doctor questions - if you are not satisfied, maybe you need to

find another doctor. (I have changed doctors - mainly because of insurance

reasons - but have found an excellent RA doctor).

Please continue to be a part of this group - is great in finding

information and everyone here is very supportive.

Blessings to you both - keep being supportive throughout the years,

Joanne

> From: phl300 <phl300@...>

> Subject: [ ] My Wifes Battle

>

> Date: Sunday, January 10, 2010, 7:40 AM

> Hello All, I have been a

> member of this group for a relatively short period of time.

> My wife 39 yr's years old has been battleing sero-neg RA for

> 2 years now. The rumy at this point has to switch the meds

> once again. Here is the history. First was Humera, this

> didn't really work for 3 months. Switched to Embrel with

> MTX. The MTX made her through up everything 4 days out of

> the week. We tried both oral and sub-q MTX. She no longer

> can take the MTX at all. Is there any substitute for MTX is

> my first question. Anyway we tried embrel next. That seemed

> to be working well untill we thought she had lymphoma.

> Stopped all treatment untill biopsy showed neg for lymphoma.

> Went back to Embrel and now has not been helping much.

> Anyone with a similar story? Any ideas? Sorry to spill my

> guts but this disease is killing her slowly and hurts me to

> watch. It has been a very hard last 2 years. I would

> appreciate any comments... Thank you......Phil W. LI NY

>

> ------------------------------------

>

January 10, 2010

Phil, My heart goes out to you and your wife. Lori was taking Humira Pen (one

shot every 2 weeks), prednisone and Methotrexate. At first the MTX was in pill

form, but it was doing a number on her stomach. She also had Gastroparesis.

then she went to the injectables. but that didn't seem to change anything. So

she went back to the pill form.

She just starting taking the Arava to get off the MTX. And she was still taking

the prednisone. I think it was actually helping, but she wasn't on it that

long.

During her time with the MTX, even a small change in the number of pills (say 6

versus 7) really affected her stomach. Same with the prednisone. Also, she

hated the MTX. It took a huge toll on her system. Tuesday was MTX night. it

wasn't until SAT that the nausea and fatigue would subside. She never tried

embrel, since she seemed to respond well with Humira. However, her rumy told us

that it would take anywhere from 3 to 6 months for the Humira to really kick in.

Like anything else, I'm sure different doctor's

opinions/advice/knowledge/treatment plans etc. varies - regardless of the

patient. So, as far as advice to you. Just keep doing what your doing in terms

of becoming as knowledgeable as you can. Lori's research was extensive. You'd

think she was preparing for a thesis paper. Hang in there and don't give up.

There are people that you never even met that are thinking about you and hoping

things work out for the best.

Taras

Lori

www.stitchingqueen.multiply.com

From: phl300

Sent: Sunday, January 10, 2010 8:40 AM