Re: A hello and exercise question (Kathy)

[Guest guest]

Hi Kathy-

My name is Keri and I have had Stills for 5 years. I too was on Enbrel and it

just wasn't working for me. I didn't have fevers, but I was having pain and

unable to decrease my Prednisone. I did get down to 4mg while on Enbrel, but I

was not a functioning person. I was in so much pain and in bed 5 days out of

the week. So I talked to my Rheumy about Remicade and I wish I would of

discussed it with him sooner. Because I feel so good. I am down to 9mg on

prednisone and decreasing 1mg a week. I am feeling great. I was very fatigued

when I first started the infusions, but now after the infusions I feel fine.

I just recently went up a vile on the Remicade, becuz for some reason it wasn't

lasting the full 8 weeks. At 6 weeks or so I can feel that I am starting to

need it. Pain, fatigue, etc... So I am going in on Monday and they are upping

the dosage. I am hoping it will last the 8weeks. If not I have the option of

going every 6 weeks.

Anyway, EVERYONE is different. I have heard great things about Remicade and

then I have heard a couple not so good stories about it. Actually here on the

website there is a individual that had an allergic reaction and was

hospitalized. Scary.. but like I said everyone is different. Hopefully you

will get alot of feed back from this support group. I asked for good/bad

experiences, I wanted to hear it all. But in the end I made the decision to go

ahead and I am SOOOO GLAD that I did.

Good Luck to you and keep us updated.

Love and Support,

Keri in CA

Re: A hello and exercise question

Dear Ones,

I worry about any type of therapy. I know that it has it's benefits if

geared to the individual. But most people do not understand our problems. I

think, as a civilized people, we want to comply with authority figures, perhaps

pushing us further than our better judgement tells us.

My pain management doctor suggested water therapy - but I opted for the

hot tub for myself. I can get into the hot water (I set it at 98 degrees so

that I can stay in it as long as I want) and have immediate relief. Then I can

move around in it, (no swimming laps of course) getting the benefits of the

water's resistance without taxing my sore muscles & joints.

Kind regards,

Pat

Austin, TX

[Guest guest]

Hi Keri---thanks for the feedback. I hope I have as much luck with Remicade as

you. I'll let you know.

Kathy

Re: A hello and exercise question

Dear Ones,

I worry about any type of therapy. I know that it has it's benefits if

geared to the individual. But most people do not understand our problems. I

think, as a civilized people, we want to comply with authority figures,

perhaps

pushing us further than our better judgement tells us.

My pain management doctor suggested water therapy - but I opted for the

hot tub for myself. I can get into the hot water (I set it at 98 degrees so

that I can stay in it as long as I want) and have immediate relief. Then I

can

move around in it, (no swimming laps of course) getting the benefits of the

water's resistance without taxing my sore muscles & joints.

Kind regards,

Pat

Austin, TX