Re: Humira--Need info and support

[Guest guest]

How did you know you had lupus? What should I be watching for?

Does it depend on the dosage how quickly it might affect me with lupus?

I'vwe been told I should watch for lupus in general but never sure exactly

what symptoms....

THANKS for your help!!

On Mon, 11 Apr 2011, Clay Keene wrote:

> Hi Liz,

>

> I was on humira for two months only. It did an amazing job, but I developed

drug induced lupus on it. The DIL cleared up after I stopped the drug. And the

short dose of humira kept my symptoms in remission for three months with no

meds. But ultimately the arthritis came back. Now I'm on a half dose (25mg) of

enbrel every week. Which works for me for the most part. Wishing you good luck!

>

>

>

> (Sent from my mobile)

>

> On Apr 11, 2011, at 6:52 PM, Liz_K <juliette@...> wrote:

>

>> Hello.

>> As those of you who have been with me on this list for the past years know

>> I have a primary Dx of Reiter's and Psoratic Arthritis. I later learned I

>> also have sjogren's and Chronic fatigue syndrome.

>>

>> For the past 14 years or so I have been on methotrexate combined with

>> various other drugs. For four years I was on Remicaid which did help alot

>> and I did well with. Then it seemed like

>> Glucosomine/Chondrotin was doing well for me with less risk than these

>> crazy high power drugs. I was using that for about 4 years but then that

>> seemed to lose effectiveness.

>>

>> I then began using plaquenil...then was a period I wasn't using that till

>> the dr was sure my eyes weren't being affected. Every other month liver

>> enzymes were checked. In January 2011 the results were higher than the dr

>> liked so he readjusted my dosage from 20 mg once a week (always have had

>> pill==no shots) to 16.

>>

>> In the next two months my right hand became affected in a negative way.

>> The left hand esp the middle finger had become deformed before but the

>> right was ok. Now the right middle finger is bent and the whole hand and

>> wrist is twisted. Various other joints are affected too.

>>

>> The sjogrens is also worse. My eyes are very dry. About 2 months ago my

>> dog scratched my cornea by accident and since then the eye dr has had

>> opportunity to observe that part more closely. He just informed me that I

>> need to start using eye drops or my eye dryness will lead to inflammation

>> and infection.

>>

>> Bottom line: RE: the Reiters though.. The dr sat down and discussed with

>> me in detail the options I have available. It has been so long since I was

>> on the remi that the dr is afraid I will exhibit an allergic reaction to

>> it...that would be very negative.... So based on all factors he wants to

>> put me on Humira.

>>

>> I have already had the TB test and have to get chest xray. He has to put

>> the paperwork through to get medicaid to pay for it. I have to learn to

>> give the injections. ly I am very scared about this turn of events.

>> Lymphoma is in my family genetics---and that is something I am very

>> vulnerable to with Humira. Lung infections are a thing to watch out for

>> too and I have the tendency for those. But what else can I do...

>>

>> Any info you have about your own experience or knowledge of Humira..I'd

>> really appreciate your sharing.

>>

>> Thanks! I think of you all and hope all is going well for you.

>>

>> Liz Kilpatrick

>> On the banks of the Mighty Mississippi River, Davenport,IA

>> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>> (A)PERSON with big dreams is more powerful than one with all the

>> facts! *H. Brown,Jr.**************************************

>> LIFE isn't about waiting for the storm to pass. It's about learning

>> how to dance in the rain! *Vivian Greene*************************

>> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>> EMAIL: juliette@... WEBSITE: http://members.tripod.com/~LizK

>> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>>

>

>

>

[Guest guest]

For me it was picked up immediately by blood tests. My ANA was strongly positive

with a " speckled pattern " which indicated drug induced lupus.

(Sent from my mobile)

On Apr 12, 2011, at 1:27 PM, Kilpatrick <juliette@...>

wrote:

>

> How did you know you had lupus? What should I be watching for?

>

> Does it depend on the dosage how quickly it might affect me with lupus?

> I'vwe been told I should watch for lupus in general but never sure exactly

> what symptoms....

>

> THANKS for your help!!

>

> On Mon, 11 Apr 2011, Clay Keene wrote:

>

> > Hi Liz,

> >

> > I was on humira for two months only. It did an amazing job, but I developed

drug induced lupus on it. The DIL cleared up after I stopped the drug. And the

short dose of humira kept my symptoms in remission for three months with no

meds. But ultimately the arthritis came back. Now I'm on a half dose (25mg) of

enbrel every week. Which works for me for the most part. Wishing you good luck!

> >

> >

> >

> > (Sent from my mobile)

> >

> > On Apr 11, 2011, at 6:52 PM, Liz_K <juliette@...> wrote:

> >

> >> Hello.

> >> As those of you who have been with me on this list for the past years know

> >> I have a primary Dx of Reiter's and Psoratic Arthritis. I later learned I

> >> also have sjogren's and Chronic fatigue syndrome.

> >>

> >> For the past 14 years or so I have been on methotrexate combined with

> >> various other drugs. For four years I was on Remicaid which did help alot

> >> and I did well with. Then it seemed like

> >> Glucosomine/Chondrotin was doing well for me with less risk than these

> >> crazy high power drugs. I was using that for about 4 years but then that

> >> seemed to lose effectiveness.

> >>

> >> I then began using plaquenil...then was a period I wasn't using that till

> >> the dr was sure my eyes weren't being affected. Every other month liver

> >> enzymes were checked. In January 2011 the results were higher than the dr

> >> liked so he readjusted my dosage from 20 mg once a week (always have had

> >> pill==no shots) to 16.

> >>

> >> In the next two months my right hand became affected in a negative way.

> >> The left hand esp the middle finger had become deformed before but the

> >> right was ok. Now the right middle finger is bent and the whole hand and

> >> wrist is twisted. Various other joints are affected too.

> >>

> >> The sjogrens is also worse. My eyes are very dry. About 2 months ago my

> >> dog scratched my cornea by accident and since then the eye dr has had

> >> opportunity to observe that part more closely. He just informed me that I

> >> need to start using eye drops or my eye dryness will lead to inflammation

> >> and infection.

> >>

> >> Bottom line: RE: the Reiters though.. The dr sat down and discussed with

> >> me in detail the options I have available. It has been so long since I was

> >> on the remi that the dr is afraid I will exhibit an allergic reaction to

> >> it...that would be very negative.... So based on all factors he wants to

> >> put me on Humira.

> >>

> >> I have already had the TB test and have to get chest xray. He has to put

> >> the paperwork through to get medicaid to pay for it. I have to learn to

> >> give the injections. ly I am very scared about this turn of events.

> >> Lymphoma is in my family genetics---and that is something I am very

> >> vulnerable to with Humira. Lung infections are a thing to watch out for

> >> too and I have the tendency for those. But what else can I do...

> >>

> >> Any info you have about your own experience or knowledge of Humira..I'd

> >> really appreciate your sharing.

> >>

> >> Thanks! I think of you all and hope all is going well for you.

> >>

> >> Liz Kilpatrick

> >> On the banks of the Mighty Mississippi River, Davenport,IA

> >> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >> (A)PERSON with big dreams is more powerful than one with all the

> >> facts! *H. Brown,Jr.**************************************

> >> LIFE isn't about waiting for the storm to pass. It's about learning

> >> how to dance in the rain! *Vivian Greene*************************

> >> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >> EMAIL: juliette@... WEBSITE: http://members.tripod.com/~LizK

> >> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> >>

> >

> >

> >