RE: new- but not Semalee (long)

[Guest guest]

Hi Semalee:

Welcome back! I remember your name! We do understand

and are here to support you. I am so sorry that

Remicade seems to be loosing it's affect on your RA.

Why is it that you don't want to try and increase the

frequency, if your doctor feels it will be more

benefit to you? I know that it is a very strong RA

medication, and the infusions cannot be very easy, so

from that standpoint, I do understand the reluctance.

I am currently on Enbrel, Methotrexate, Mobic, and

take Ultram for pain. It is a scary thing to think

that the Enbrel will possibly stop helping, and I will

be searching for another med to take it's place. As

we progress up that medication ladder to the newer

biologics, it gets scarier, because they are new, and

the information as far as what happens in the long

term by using these medications is just not out there.

I like that about Enbrel, at least it has some

history, and has been used now for many years by many

people with RA. Have you looked into Orencia or

Rituximab, those new meds just out. We have one

member named , who is on Orencia, and so far she

is having good results.

You are right about your husband's being afraid and

scared for what is happening to you, my husband says

he feels the same way. It is very hard for me not to

be able to fix problems, and fix things for those they

love, and this is not anything they can fix, and it is

hard for them to deal with that. They love us and see

us in pain, and dealing with limitations, and it hurts

them, so often they kind of withdraw. I am happy that

you have your sister who is more understanding of your

pain, but it's hard when the rest of your family tends

to dismiss it. I think that, for them as well, it is

scary as it is something that could have or may have

happen to them as well. RA can be genetic.

As far as activity, and feeling that you are holding

people back, have you thought about getting a scooter?

There are many on this board who have them or

wheelchairs, and have discovered how much they were

missing by not purchasing these aids. It could be

something for you to think about. I know, at 31, a

handicapped placard and a scooter is not what you

thought your life would be, but, unfortunately, it is,

and you have to make the best of it. I am 52, older

than you, and it is hard for me to believe I have

these limitations, have to use a cane once in a while,

and have a handicapped placard, but it is what it is,

and I have learned to adjust, adapt, and make the best

of it.

Anyway, I am going long on this, so will stop now.

Take care -

Kathe in CA

Semalee writes:

I ended up on MTX, Ibuprofen Folic Acid of course, and

> Remicade. My current> dose is 6.5 MG/KG every 8

weeks, but the last 2-3> times he as recommended

> increasing the frequency. I keep saying no. The

Remicade seems to be failing. This scares> me to

death. As my> hands continue to swell my emotional

state is going> down the tubes.>

>

> the rest of my family husband included seem to just

dismiss it. I > know with my husband > that is his

defense mechanism because it scares him > possibly

more than me. It takes me a good 30 minutes to get my

> feet going again after > sitting.

>

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__________________________________________________

[Guest guest]

" Welcome back! I remember your name! We do understand

and are here to support you. I am so sorry that

Remicade seems to be loosing it's affect on your RA.

Why is it that you don't want to try and increase the

frequency, if your doctor feels it will be more

benefit to you? I know that it is a very strong RA

medication, and the infusions cannot be very easy, so

from that standpoint, I do understand the reluctance. "

Thank you so much Kathe!

Your encouragement means a lot! I just feel like I am in a constant

balancing act with the Remicade. I keep thinking back to when we decided to

go this next step and my doctor said he didn't want to go over certain

amounts (he is very conservative), but that protocols would allow him to go

to other amounts. I am now in the middle of that, he didn't want me to go

over 5mg/kg and I am at 6.5mg/kg, so I am very hesitant to go further. I

may go ahead and let him do the shots in my hands next time around, though,

cause it is pretty frustrating to me that this time I am still not able to

fully close my hands. I was also hesitant to do it because most times after

my infusion I feel almost like new again. I will NEVER forget my first

infusion. I went in and could barely get my hands closed at all, and my

feet were in constant pain. My goal on my goal sheet was to be able to open

my own water bottle! THAT DAY I was able to open a water bottle. I

literally watched the swelling go down in my hands. It was awesome. So, I

was hoping that would happen this time too, but unfortunately it didn't. :-(

Love and Peace,

Semalee

List mom to:

HS-WAHM

My Blog:

http://jellodoesntnail.blogspot.com

" A meaningful life will not be found in the next job or the next car. The

way you get meaning in your life is to devote yourself to helping others and

creating something that gives you purpose. "

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