RE: Really need advice re elderly Mom w/ RA diagnosis

[Guest guest]

Hi Betsy,

I am on this list because of my mom.

She is 85 and had problems with Methotrexate too. She was like a zombie.

Next came Arava - another disaster.

Her gastroenterologist suggested Enbrel so the medication wouldn't enter her

stomach but her rheumatologist decided on Orencia because fewer of her

patients had trouble with it.

She went on Orencia in November and has had no problem with it. In addition

to Orencia, she has now started Sulfasalazine (in addition to Orencia) and

we have gradually been working up to the full dosage and so far so good.

After the disaster with Methotrexate and Arava, we now start on 1/2 doses

for a few days and then work our way up. We have found it easier to deal

with problems that way.

Some of the pain meds mads her sleep all the time. She is now on Darvocet

(1/2 dose) and if she needs it 2 Tylenol Arthritis at mid-day.

My mom was on prednisone for years. Don't know what part it played, if any,

but she is the first in her family to be diabetic and have gastroparesis.

She is no longer on prednisone.

This list has been a big help too. She just went to the rheumatologist

today and her range of motion is greatly improved so I guess we are moving

forward.

I think the solution is out there, just don't give up.

Sue

[ ] Really need advice re elderly Mom w/ RA diagnosis

My mother was diagnosed with RA last summer at the age of 88.

So far she has not tolerated any meds:

1) Plaquinal - bright red rash head to toe with all her skin sloughing off

2) Methotrexate - GI problems plus mental status changes

3) Mycophenolate - Initially she was on 1gm per day and doing well, then

her doctor increased the dose to 2gm per day and she didn't tolerate it

(same problems as with MTX); he didn't want to go back to 1gm because he

didn't think she had benefited much - (although she felt pretty decent)

4) Imuran - elevated liver function tests plus a flare up - which is where

we are right now.

Prednisone 15-20 seems to be the least we can go.

Now the doctor is talking about trying the biologic Remicade.

HELP - I need input and advice! At 89, I just want her to be the best she

can be for the few remaining years she has. We are not looking for a

miracle.....

Thanks in advance for your comments/advice.

Betsy

[Guest guest]

Sue, Thanks so much for your reply. I really appreciate you telling me about

your Mom's experiences.

I did quite a bit of research after reading your post, because I wanted to

understand the difference between Orencia and Remicade. It seems like Orencia

might make more sense, even though her Rheumatologist wants to start with

Remicade; the only thing is that he hasn't checked a TNF-alpha, so I will ask

him to check that before making a decision about which to start. (Addendum: He

decided today to not start the biologics.)

So, a bit of background: When we first met the doctor here where I live, Mom

was on Mycophenolate which had been prescribed by a doctor in California (where

Mom has been living for six months each year near my Sister). So when Mom came

home last spring we went to the doctor here (whom we didn't know before) who

immediately doubled the dose (which she didn't tolerate). Then things spiraled

down to the point that I wrote to the list. Today we saw him and he decided to

go back on the original 1/2 dose of Mycophenolate since Mom had been doing

fairly well on it. So we went backward a step for now, which I hope is a good

thing.

Mom is really having GI issues (she swears the RA was caused by a GI virus, and

who am I to nay-say as she has always been in tune with her body), so I asked

about Sulfasalazine, but he was unwilling to prescribe it.

I tried to ask intelligent questions today and be very specific. Let's keep our

fingers crossed !!

Thanks again,

Betsy