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Rheumatoid Arthritis

The TVClubHouse: General Discussions ARCHIVES: 2005 Dec. ~ 2006 Feb.: Health Center: Rheumatoid Arthritis users admin

Author Message
Jan
Moderator

08-01-2000

Monday, September 26, 2005 - 3:21 pm   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
My Mom has just been diagnosed with RA. She is in a lot of pain, so much so that she can barely walk or use her arms before she takes painkillers in the AM. She is also having a lot of trouble sleeping.

Does anyone here have any knowledge of this disease? The doc told Mom there is a new drug called enbrel but it is hugely expensive (over $1000 a month) and has very serious side effects (can cause sepsis or tuberculosis and death in a very small percent of people).

I have been talking to her about a craftmatic bed as she has lots of trouble getting out of bed in the AM. Does anyone have experience with them?

Any help/advice anyone can offer, I will really appreciate. My Mom is not taking this well as she refuses to admit to getting old or having any problems that might say that she is getting old (she is 78:-))

Vee
Member

02-23-2004

Monday, September 26, 2005 - 3:41 pm   Edit Post Move Post Delete Post View Post Send Vee a private message Print Post    
Oh, Jan, I am so sorry to hear about your mother having to deal with this.

My own mother was diagnosed three years ago at age 67. She has had some incredibly rough times largely stemming from going toxic on the medications. Currently, she takes prednisone, which, despite its bad name, is doing very well for her.

My mother does not use a craftmatic bed so I don't have any suggestions about that. She does have a raised commode and a lift chair. The lift chair was prescribed by the RA physician. These things have been very helpful especially when she is in a flare. Thankfully, she has been stabilized for over a year now.

I hope that your mother's condition gets stabilized very soon and that she doesn't ever have a flare again. Sometimes that happens.

Landi
Member

07-29-2002

Monday, September 26, 2005 - 4:00 pm   Edit Post Move Post Delete Post View Post Send Landi a private message Print Post    
i was diagnosed with arthritis at 27. jan, PM me, and i'll talk to you. i've been on celebrex, vioxx, and now enbrel.

Jan
Moderator

08-01-2000

Tuesday, September 27, 2005 - 1:03 pm   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
Thanks for your messages Vee and Landi.

Vee, I feel better just hearing that RA 'Flares" as this will give her hope that it also goes into remission. I didn't know that. I know that my Mom is afraid of prednisone as, once when it was prescribed for me , she was really against my taking it. Is your Mom on it permanently?

Landi, thanks for the PM offer. I took you up on it :-)

Vee
Member

02-23-2004

Tuesday, September 27, 2005 - 7:09 pm   Edit Post Move Post Delete Post View Post Send Vee a private message Print Post    
Yes, my mother is on prednisone permanently and is very happy to be on it. Her life was nearly intolerable without it. Apparently, prednisone is the "gold standard" for RA; although, sadly, it can be problematic.

Vioxx caused her to go toxic. No one knew what was going on. She finally went to Boston to check with specialists there and that's when she learned that it was her medication and not the disease that was killing her. She lost most of her hair, a lot of weight, and had breathing difficulties.

Shortly after she was placed on prednisone, her hair came back and her health returned almost as quickly as it had gone. She considers the prednisone a Godsend.

Best wishes to your mom as she makes decisions about her medical care. Hope that she is feeling much better very soon.

Landi
Member

07-29-2002

Tuesday, September 27, 2005 - 7:23 pm   Edit Post Move Post Delete Post View Post Send Landi a private message Print Post    
i did really well on celebrex and vioxx. but i have heart disease in my family, so i was immediately removed from them. i get the enbrel shot once a week, and am off prednisone at this time. it makes me a big puffy mess. vee, has she ever tried injectable gold? it's so expensive and kaiser won't cover it anymore. i did okay on that.

Vee
Member

02-23-2004

Tuesday, September 27, 2005 - 7:40 pm   Edit Post Move Post Delete Post View Post Send Vee a private message Print Post    
Hi, landi.

No, she has not tried injectable gold, but we have heard of it.

I know many people who do get puffy and miserable with the prednisone. Amazingly, it does not affect my mother that way despite the fact that she has many allergies so it surprises me that she tolerates it well.

She was offered the Enbrel, but decided not to mess with what is working. She is a bit nervous after the scare with the Vioxx.

landi, is your RA in remission or do you suffer flares from time to time?



Jan
Moderator

08-01-2000

Wednesday, September 28, 2005 - 1:45 pm   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
I was talking to a retired nurse about this the other night, Vee, and she warned me that prednisone, like any steroid, leaches calcium from bones and has to be used carefully. Since my Mom has osteoporosis and has already had two broken bones due to it, I don't think she would be a candidate for prednisone?

As for gold, or enbrel, it's the cost as she is not on a prescription plan. I checked into getting the drugs cheaper in canada but for 25 mg of 1x4 enbrel it is almost $800 USD even here :-(

I have emailed her to ask what drug she was prescribed. She didn't mention the name when I was talking to her - other than to say the doc advised it would be a month before it took effect!!!

I am glad your Mom is doing so well, though :-):-) I hope I have that kind of good news to say about my Mom soon.

Vee
Member

02-23-2004

Sunday, October 02, 2005 - 6:15 am   Edit Post Move Post Delete Post View Post Send Vee a private message Print Post    
Yes, that is true, Jan, but my mother takes Fosomax to counteract that.

Actually, my 96 year-old grandmother also is on prednisone for a geriatric type of arthritis...not RA...and she is doing well, but also must take Fosomax and my nana also has osteoporosis.

I am not pushing prednisone by any means, just saying that it is the only thing that works for my mother.

Also, I see that there are new calcium-building drugs coming out all the time. Fosomax must be taken every week, but there are newer ones that can be taken once a month.

Jan
Moderator

08-01-2000

Tuesday, October 25, 2005 - 10:30 am   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
Just an update. My Mom had tried 2 different prescription drugs since diagnosis with no effect.

As well, she drinks an over the counter liquid that contains all the health food treatments for arthritis (Glucosamine, chondroitin sulfate, and MSM ie methylsulfonylmethane) that she says is definitely working.

Last week her RA specialists removed some thick liquid from her elbow, put her on Methotrexate, and said she could take ibuprofen with it.

The next day she said she felt like she was reborn. She can now stand up straight again. She feels well again. She can walk and work without pain.

She thinks the RA has gone into remission.

My fingers are crossed!!

Thanks for your interest and advice :-):-)

Babyruth
Member

07-19-2001

Tuesday, October 25, 2005 - 1:10 pm   Edit Post Move Post Delete Post View Post Send Babyruth a private message Print Post    
Yay, Jan!
I don't know how I missed this thread up til now. I'm glad to hear your Mom is feeling so much better!

My Mom has RA...it attacked her in her mid fifties and hasn't really responded to any medications as yet. She's been on daily prednisone for 20 years, and it's the only thing that's kept her going.

My partner Ms Sweetpea has RA...it attacked her in her late twenties and she suffered a great deal while the metho held it off only a little. Since starting Enbrel a few years ago when it first came out, she's been reborn! She's an exercise freak now and totally puts me to shame. Her joints have a lot of damage, but she exercises within her limits and does great.

Keep us posted on your Mom, ok? :-)

Landi
Member

07-29-2002

Tuesday, October 25, 2005 - 1:17 pm   Edit Post Move Post Delete Post View Post Send Landi a private message Print Post    
my doctor recommended i get an exercise program and to do something indoors since being outside makes my joints so cold. so he recommended this gym with really good trainers and i had a training session last night. the trainer is actually one of the nurse practitioners from kaiser where i go. a mixture of cardio and strength training with low weights and not huge reps. so i'm supposed to go 3 times a week.

when i went there last night both elbows and knees were aching bad. it was 6:30 at night and the chill had set in. we've had some real bad fog the last few days and i feel like they are ice! the place was nice and warm, but not hot. the exercises actually made me feel better than not doing anything at all! and then there was the wonderful hot tub afterwards!

i've been 4 weeks on enbrel and am really starting to notice a difference.

babyruth, does sweetpea do her own shots? i go in once a week and they choose a different thigh to put it in. they use the pre-done syringes. i don't know if i could give my own shots.


Jan
Moderator

08-01-2000

Tuesday, October 25, 2005 - 3:17 pm   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
Unfortunately my Mom could never afford the Enbrel (no drug plan as she owned her own business) so I am really glad the Metho worked!!

She used to exercise, Landi, but I must ask her if she is going to go back. I know that is so important. She said the doc gave her some she could do in bed before she gets up.

B'Ruth, actually my Mom wasn't diagnosed until this year at age 78 - and many have told me that is really really old to be diagnosed!

Has Sweetpea tried the Glucosamine, chondroitin sulfate, and MSM ie methylsulfonylmethane mixtures that most over the counter places sell?? My Mom said the liquid (not the pills ) really helped her. She gets it at Cosco. Also the fact that the doc gave her a prescription for 400mg ibuprofen. She really thinks the ibuprofen helps (and my Mom hates taking pills!)

Landi
Member

07-29-2002

Wednesday, October 26, 2005 - 9:50 am   Edit Post Move Post Delete Post View Post Send Landi a private message Print Post    
i take the 800mg motrin when it's really bad. don't forget to take the ibuprofen with something in the stomach or you end up with ulcers or bleeding. just a little food - an apple, 10 crackers, that kind of thing.

Jan
Moderator

08-01-2000

Wednesday, October 26, 2005 - 12:34 pm   Edit Post Move Post Delete Post View Post Send Jan a private message Print Post    
yeah, Mom does that. She's been taking 800mg ibuprophen for a few years (when needed) for neuropathy in her legs.