Re: my mother Rhonda

[Guest guest]

Hi Rhonda:

How great of you to come here for your Mom! This is a

wonderful group with a lot of support and information,

and I am sure you will find good help here.

I have had RA for 7 years, and currently am on

Methotrrexate, Enbrel (a biologic I inject twice a

week), an anti-inflammatory, and a pain medication.

I also have fibro, and take other meds for that, and

OA, high blood pressure, and asthma. I take a lot of

meds, but they keep me going, and give me the quality

of life I want.

It seems clear that your mom's RA is completely out of

control, and I am sorry that she is in so much pain.

For the doctor to have only had her on Ibuprofen and

Prednisone alone for so many years was not doing her

any favors, it was only masking the RA. The disease

process itself was not controlled by these drugs, and

from your description it appears that it has advanced

in her body. What she needed to have been on all

these years is a DMARD, a disease modifying drug, of

which Methotrexate is one, and at least she is on

that.

The Prednisone causes problems with blood pressure and

sugar levels, and you should have these things checked

out, but at your mom's advanced age, I don't know if

she will ever be able to get off Prednisone totally.

You are right, 20 mg. down to 5 mg. was a big jump,

and bound to set off a flare, which it has. Pred

needs to be tapered down slowly, say from 20 to 17.5,

to 15, to 12.5, to 10, etc. you get the idea.

Anyway, the doctors should be doing a lot of blood

work to see where her RA is at right now, work on the

pain, and perhaps either add something to the Mtx, or

try another medication if the Mtx is not helping.

This takes time, as most medications need to reach a

certain level in our systems before they begin to

work.

The Prenisone will help with her pain and

inflammation, but eventually should be tapered down to

where she is comfortable on a lower doseage. At her

advanced age, I don't think she will ever be able to

get off of the Prednisone, and if it makes her more

comfortable, I don't think I would push it. Whatever

will give her a good quality of life is what you need

to find.

I am glad that you are there to watch over her and

make sure the doctors do their best. You need to be

proactive for your mom, as she is unable to be at this

time, and talk to the doctors, find out all you can

about her medications, doses, etc., and what are her

options as far as medications for her RA are

concerned.

She might have other medical issues as well that need

to be addressed at the same time. Be your mom's

advocate in getting her the best care you can -

doctors do respond better to those who are better

informed, and don't just sit back and let things

happen, you need to really get in there and take your

place as your mom's watchdog, you and your sister's in

law too.

Anytime you need to ask anymore questions, just put

them in the subject line with ASAP or HELP, something

that will get our attention more quickly, and someone

here will be able to help you, I am sure. We are here

to support family members of those with RA, as well as

the patients, and are glad that you found us. Take

care and let us know what is happening with your mom -

Kathe in CA

__________________________________________________

[Guest guest]

--Hi Rhonda,

Kathe has pretty much said it all. One thing. If they have your

mother on a long term morphine (MS Contin), and it is not working for

her then 1 they need to up the dosage and 2 she needs to have an

immediate release Morphine ordered to take if she has what they call

breakthrough pain. This is how they will monitor her pain relief..if

she uses the immediate release more...then they need to up the MS

contin...if she doesn't have a lot of pain in betweeen then the MSC

seems to be working for her. Personally I wouldn't leave there

without a Rx for the instant Morphine...in case it gets worse in the

first few days home!Even taking her home can make the pain worse! And

you are going to want to have something to give her that is going to

work on that pain now...not over the next 12 hours!!! And when was

her last bone scan?? Osteoporosis can cause very intense

pain...unbearable without major pain meds. Could this be part of her

problems..that she had undiagnosed severe osteoporosis as well as

untreated RA????....just some questions to ask the DOC. ANd we are

here for ya.....come back with all your questions. Everyone here is

really nice, and while we are all in the same boat....we all have had

diferent experiences ....and can give a lot of good advice!!!Good

luck, and Kathe is right.... you really have to be a watch dog for

you mother....it doesn't matter if those nurses/Dr like you... they

need to respect you and know that you are going to be asking them the

hard questions....like why didn't you do this!! or that! Then your

mothers care will get better....believe me!! they need to know that

you are going to be coming down the hall and want answers to your

questions right now!!!!.....hope we helped! jenna

com, Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi Rhonda:

>

> How great of you to come here for your Mom! This is a

> wonderful group with a lot of support and information,

> and I am sure you will find good help here.

>

> I have had RA for 7 years, and currently am on

> Methotrrexate, Enbrel (a biologic I inject twice a

> week), an anti-inflammatory, and a pain medication.

> I also have fibro, and take other meds for that, and

> OA, high blood pressure, and asthma. I take a lot of

> meds, but they keep me going, and give me the quality

> of life I want.

>

> It seems clear that your mom's RA is completely out of

> control, and I am sorry that she is in so much pain.

> For the doctor to have only had her on Ibuprofen and

> Prednisone alone for so many years was not doing her

> any favors, it was only masking the RA. The disease

> process itself was not controlled by these drugs, and

> from your description it appears that it has advanced

> in her body. What she needed to have been on all

> these years is a DMARD, a disease modifying drug, of

> which Methotrexate is one, and at least she is on

> that.

> The Prednisone causes problems with blood pressure and

> sugar levels, and you should have these things checked

> out, but at your mom's advanced age, I don't know if

> she will ever be able to get off Prednisone totally.

> You are right, 20 mg. down to 5 mg. was a big jump,

> and bound to set off a flare, which it has. Pred

> needs to be tapered down slowly, say from 20 to 17.5,

> to 15, to 12.5, to 10, etc. you get the idea.

>

> Anyway, the doctors should be doing a lot of blood

> work to see where her RA is at right now, work on the

> pain, and perhaps either add something to the Mtx, or

> try another medication if the Mtx is not helping.

> This takes time, as most medications need to reach a

> certain level in our systems before they begin to

> work.

> The Prenisone will help with her pain and

> inflammation, but eventually should be tapered down to

> where she is comfortable on a lower doseage. At her

> advanced age, I don't think she will ever be able to

> get off of the Prednisone, and if it makes her more

> comfortable, I don't think I would push it. Whatever

> will give her a good quality of life is what you need

> to find.

>

> I am glad that you are there to watch over her and

> make sure the doctors do their best. You need to be

> proactive for your mom, as she is unable to be at this

> time, and talk to the doctors, find out all you can

> about her medications, doses, etc., and what are her

> options as far as medications for her RA are

> concerned.

> She might have other medical issues as well that need

> to be addressed at the same time. Be your mom's

> advocate in getting her the best care you can -

> doctors do respond better to those who are better

> informed, and don't just sit back and let things

> happen, you need to really get in there and take your

> place as your mom's watchdog, you and your sister's in

> law too.

>

> Anytime you need to ask anymore questions, just put

> them in the subject line with ASAP or HELP, something

> that will get our attention more quickly, and someone

> here will be able to help you, I am sure. We are here

> to support family members of those with RA, as well as

> the patients, and are glad that you found us. Take

> care and let us know what is happening with your mom -

>

> Kathe in CA

>

>

>

> __________________________________________________

>