Re: Rapid Decline, Permanent Deformity

[Guest guest]

Dear - Having RA means living with a disease that is as unpredictable as it is aggressive. Those bunions are probably just nodules which will go away with other treatment. If being on a TNF blocker isnt working then I would strongly suggest trying Rituxan which is a B-Cell Blocker. You have a course of treatment, one infusion of an hour or two once a week for a few weeks then it should be working for 6-9months. I have not had a Remicade infusion since the middle of september because of a tooth extraction. I will be trying the Rituxan now that my body has reset itself in essence. Remember that RA is smart. If it can adapt and find a way around your TNF blocker it will. Apparently it has. Also over using your joints in anyway can cause a severe zone flare in places. If picking up your child from under the armpits with your hands, it could cause an aggravation of the flare. Trying Prednisone low dose (1mg) a day along with other supportive therapy can help also. Be sure to get help with your child from family whenever you are having a bad day as not to cause more damage!! Remember also to splint and immobilize the flared area if you can, use ice for swelling and heat for joint achiness. Hope you feel better soon. Deborah

On Jan 19, 2008 9:44 AM, <catdelouise@...> wrote:

Hi All, I have had RA for 5 years and have taken Humira for about 4 and now it has stopped working for me. Not only that, my RA is attacking me so aggressively that I now have permanent damage and deformity with the worst part being that it looks like I have bunions coming out of my first fingers on both hands This is especially scary because a month ago my hands did not look like this!!! I don't understand this rapid damage, when in the beginning I was undiagnosed for 6 months with no permanent damage. This is very hard to wrap my mind around as I believed due to the new classes of drugs for RA that I would never have permanent damage or deformity. Also as a woman, I think it is tough from a vanity standpoint. I would like to hear from others out there who have experienced this and if anyone has had this happen so quickly. Until I find something that works for me, what am I going to look like next month or next week?I have a 16 month old so resting my joints is not much of an option. I want to be a normal mom to him; be able to lift him and play with him. Also, MTX is not desireable to me since I am still of childbearing years. Thanks and love,

[Guest guest]

Deborah,

I read your post to my husband and he said that it was better advice than a

doctor can give me! Indeed, I wish I had a Rheumatologist as knowledgeable

as you!

I am hot on the Rituxan trail. I have a professional friendship with a

Rheumatologist in the pharma industry who recommended this treatment to

me. I hope I can name my own treatment!

You are, of course, right about what I am doing with my child, but I am his

mommy and he still needs to be picked up by me, although I have cut back on

it a lot.

I wanted to post the results of my X-rays for your opinion as well, Dr. Deborah!

My left hand was a little worse so I will just post that to save my hands:

Impression: Left Hand: Periarticular ostepenia.

Comment: There is periarticular (situated around a joint) osteopenia present

at themetacarpophalangeal (knuckle) and interphalangeal joints. Mild

degenerative charge of the first metacarpopjalangeal joint is present. There is

no soft tissye calcification or bony erosion. Joint spaces are otherwise

preserved.

I had to google a lot to understand this!

Thanks so much!

>

> > Hi All,

> >

> > I have had RA for 5 years and have taken Humira for about 4 and now

> > it has stopped working for me. Not only that, my RA is attacking me

> > so aggressively that I now have permanent damage and deformity with

> > the worst part being that it looks like I have bunions coming out of

> > my first fingers on both hands

> >

> > This is especially scary because a month ago my hands did not look

> > like this!!! I don't understand this rapid damage, when in the

> > beginning I was undiagnosed for 6 months with no permanent damage.

> >

> > This is very hard to wrap my mind around as I believed due to the new

> > classes of drugs for RA that I would never have permanent damage or

> > deformity. Also as a woman, I think it is tough from a vanity

> > standpoint.

> >

> > I would like to hear from others out there who have experienced this

> > and if anyone has had this happen so quickly. Until I find something

> > that works for me, what am I going to look like next month or next

> > week?

> >

> > I have a 16 month old so resting my joints is not much of an option.

> > I want to be a normal mom to him; be able to lift him and play with

> > him. Also, MTX is not desireable to me since I am still of

> > childbearing years.

> >

> > Thanks and love,

> >

> >

> >

> >

> >

>