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This sounds a lot like humira or enbrel.. I have not heard any commercials yet

for it though.

Joy

keptoz <keptoz@...> wrote:

Has anyone tried this drug? My Rheumy is thinking of switching me to it, but

its new & that makes me a little nervous.

I've been taking Enbrel & it works, but I've been getting hives from it.

Honestly, I don't mind since it helps my pain so much, but my Dr is worried that

at some point I may have a more severe allergic reaction. I wasn't 100% clear on

the explanation from her, but she said it doesn't have any of the added proteins

that can cause the reaction & otherwise its the same basic drug as Enbrel. Its

also only injected once a month which is a plus for me.

If anyone has heard about or had any experience with it, I'd love to hear about

it.

Thanks.

------------------------------------

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  • 2 weeks later...
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I'm curious:  several of you are getting this drug but I thought the FDA had

approved it only for plaque psoriasis.  Are docs prescribing it for PsA, too? 

And, if so, will insurance companies cover it for that?  Or am I getting it

mixed up with another drug. 

 Joanna Hoelscher

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Guest guest

The drug you are thinking of is ustekinumub, which is for plaque psoriasis.

Simponi is golimumab and is approved for rheumatoid arthritis, ankalosing

spondlytis and psoriatic arthritis and was approved by the FDA about a

month ago.

Anne

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  • 3 months later...

-

I started Simponi on Monday. Sounds like we're going to find out how it works

together. I've been doing pretty well with Enbrel and methotrexate, so for me

it's a matter of maintaining a good level of health.

The folks at my rheumys office told me that it would probably help my psoriasis.

That, along with the convenience of once a month injections, caused me to switch

from Enbrel. After reading the literature that came with the Simponi I think

that it's possible to get off methotrexate as well, but I'm not dropping that

until I see how things are working.

Rob Glover

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  • 2 weeks later...

Hi - my curiosity got the better of me as I had not heard of Simponi

before either. Here is their website:

http://www.simponi.com/simponi/index.html I've not taken it before, but I am

always wanting to hear about new meds. Please let us know how you do with it.

Why are you having to stop the Humira? Just curious.....Doreen :)

Hey all,

My doctor is taking me off Humira and putting me on Simponi I have never

heard of it and wondered if anyone else is on this med and if it has helped

them? I am alos on Relafan, metho, and folic acid of course..

Thanks for any input and praying for pain free days for all..

/fl

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Hi ,

I've never heard of Simponi, either. Let us know how it works. Is it

by injection, infusion, or what?

Sue

On Sep 13, 2009, at 12:38 AM, wndy_crss wrote:

> Hey all,

> My doctor is taking me off Humira and putting me on Simponi I have

> never heard of it and wondered if anyone else is on this med and if

> it has helped them? I am alos on Relafan, metho, and folic acid of

> course..

> Thanks for any input and praying for pain free days for all..

> /fl

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Good morning ,

I was just wondering why you are going off Humira, and how long you've been

taking it.

I ask because I too have been self-injecting Humira once every 2 weeks since

March 2008.  It still seems to be working but not like it was. I see

my rheumatologist this afternoon and I have no idea what is going to happen.  I

have mixed feelings about taking Humira more often, like once every 10 days or

once a week but I also don't want to switch medications. 

So far the side effects of Humira have been...bearable....I guess....except for

the costchrondritis....(I sometimes take a Voltaran if that starts to

appear)....but Humira has definately not put my RA into remission or slowed it

down, but I don't believe there is a medication that will.  I've tried almost

everything over the last 20 years and the pain has never and will never go

away.  ( sorry I got started on my pity party )......

Is Simponi a new medication?  I haven't heard of it....keep us posted on how

things go.

Take care,

(musiclvr3237)

From: wndy_crss <wndy_crss@...>

Subject: [ ] Simponi

Date: Sunday, September 13, 2009, 12:38 AM

 

Hey all,

My doctor is taking me off Humira and putting me on Simponi I have never heard

of it and wondered if anyone else is on this med and if it has helped them? I am

alos on Relafan, metho, and folic acid of course..

Thanks for any input and praying for pain free days for all..

/fl

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Since I do not suffer from RA I cannot claim to have tried this drug but I can

tell you that we have done quite a lot of market research about it and it is

being well received by rheumatologists and specialist RA nurses here in UK. As I

understand it, it will be a once a month injection using an autoinjector which

is a bit easier than a syringe and less frequent than the other self-injection

biologics. I know remicade/infliximab is less frequent but it is an infusion and

I'm sure most people would prefer a quick injection to a couple of hours getting

an infusion. It probably also has an effect on the cost although that is not a

consideration for NHS patients in UK, it probably is for people in other

countries.

Simponi is not yet licensed in Europe but has a license in USA. I expect it is a

good drug as it is the latest development in this class of drug. Good luck with

it whatever you decide to do!

.

>

> Has anyone tried this drug? My Rheumy is thinking of switching me to it, but

its new & that makes me a little nervous.

>

> I've been taking Enbrel & it works, but I've been getting hives from it.

Honestly, I don't mind since it helps my pain so much, but my Dr is worried that

at some point I may have a more severe allergic reaction. I wasn't 100% clear on

the explanation from her, but she said it doesn't have any of the added proteins

that can cause the reaction & otherwise its the same basic drug as Enbrel. Its

also only injected once a month which is a plus for me.

>

> If anyone has heard about or had any experience with it, I'd love to hear

about it.

>

> Thanks.

>

>

>

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  • 1 month later...

Ang,

I am on Simponi but have only taken one dose. I agree, there is

absolutely NO burning which is great. It did not make me nauseated

but I was very tired, not sure though if that was from the PsA or the

drug. When my second dose was due I was sick and still am so I am 3

weeks overdue on taking it.

Rae

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  • 1 month later...
  • 2 weeks later...

After taking my 1st dose of Simponi I was able to make a fist for the first time

in almost a year. I took MTX, Enbrel, Humira and Orencia with little or no

results. I am completely off of steroids for the first time in almost 8 years.

This drug has been amazing for me. I take it without MTX. I'm a week late for my

injection and my fingers are starting to swell. My pharmacy's supposed to get my

med in tomorrow so I can't wait to do my next injection. I'm still having a lot

of pain my back, shoulder and hip. I had some joint injections but it made it

worse. I'm hoping that with continued use of Simponi the larger joints will get

better and I'll be able to get off the pain meds.

leslie

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  • 2 months later...

I contacted the Healthwell Foundation for help with Humira and got a lot of

help from them. They help RA patients only, I think. Here's a number to call

to get started: 1.800.675.8416 I hope it will help you with the copay,

that's what they're for.

Dennis in eastexas

On Wed, Feb 17, 2010 at 8:13 AM, COLLEEN MCPHERSON <cmcpherson@...

> wrote:

>

>

> I also was on MTX and Humria weekly for 6 years when it stopped working. I

> have taken 3 injections of Simponi and I feel it has really helped. I've

> continued with injectable MTX as well. My problem is the $1750 cost of

> Simponi. My insurance caps at $1500 annually so there is no way I can get it

> through my insurance. I'm on my second foundation trying to get some help

> with the cost. Try a few more injections and hopefully it will help you as

> well.

> Conniekay

>

>

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Hi Dennis!

You said these guys help with RA patients - it's not a drug specific agency?

Thanks!

in SC

Sent from my iPhone

On Feb 17, 2010, at 9:16 PM, Dennis W <betnden@...> wrote:

I contacted the Healthwell Foundation for help with Humira and got a lot of

help from them. They help RA patients only, I think. Here's a number to call

to get started: 1.800.675.8416 I hope it will help you with the copay,

that's what they're for.

Dennis in eastexas

On Wed, Feb 17, 2010 at 8:13 AM, COLLEEN MCPHERSON <cmcpherson@...

wrote:

I also was on MTX and Humria weekly for 6 years when it stopped working. I

have taken 3 injections of Simponi and I feel it has really helped. I've

continued with injectable MTX as well. My problem is the $1750 cost of

Simponi. My insurance caps at $1500 annually so there is no way I can get it

through my insurance. I'm on my second foundation trying to get some help

with the cost. Try a few more injections and hopefully it will help you as

well.

Conniekay

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Hi,

Did you try the Simponi One copay program through Centocor (the drug

manufacturer)? I have one of their co-pay cards, and pay nothing for the

first 6 months, and $5 a month for the next six months. Their number is

1-877-697-4676. At least that would get you through for a while!

Patty

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, the card I got from them says:

Healthwell Foundation

Copay Assistance Card

Rheumatiod Arthritis.

That tells me that it's disease specific, not drug specific. I was given an

amount based on my income (SSDI) and would pay for about a year's supply.

Unfortunately the Humira didn't work and I had to stop it, so I guess I have

the money to use thru April, 2010.

Dennis in eastexas

On Wed, Feb 17, 2010 at 8:34 PM, <ltdavis_jrdavis@...>wrote:

>

>

> Hi Dennis!

> You said these guys help with RA patients - it's not a drug specific

> agency? Thanks!

> in SC

>

> Sent from my iPhone

>

>

> On Feb 17, 2010, at 9:16 PM, Dennis W <betnden@...<betnden%40gmail.com>>

> wrote:

>

> I contacted the Healthwell Foundation for help with Humira and got a lot of

> help from them. They help RA patients only, I think. Here's a number to

> call

> to get started: 1.800.675.8416 I hope it will help you with the copay,

> that's what they're for.

>

> Dennis in eastexas

>

> On Wed, Feb 17, 2010 at 8:13 AM, COLLEEN MCPHERSON <

> cmcpherson@... <cmcpherson%40bellsouth.net>

> wrote:

>

> I also was on MTX and Humria weekly for 6 years when it stopped working. I

> have taken 3 injections of Simponi and I feel it has really helped. I've

> continued with injectable MTX as well. My problem is the $1750 cost of

> Simponi. My insurance caps at $1500 annually so there is no way I can get

> it

> through my insurance. I'm on my second foundation trying to get some help

> with the cost. Try a few more injections and hopefully it will help you as

> well.

> Conniekay

>

>

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  • 7 months later...

I've had a lot of success with Simponi. It's working for me far better than

Humira. I've also had repeat infections when I was on Remicade and have had

no problems with Simponi.

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Dear ,

Thanks so much for responding. You are the only email I have seen about

Simponi and I guess it¹s due to it being so new. How soon did you feel

better? My doctor told me it works quicker than the other drugs, so I guess

I¹m going to just take a chance and pray for the best. Thanks again for the

info.

Take care and stay well, Fran

\

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Swelling went down within the first month and continued to improve over a

period of 6 to 7 months. The swelling in my hands and wrists is so much

better. I've been using it for a little more than a year. I am just

beginning to see it help the P a bit. Mine always gets worse during the

winter months and usually starts showing up in early Sept. and no signs of

it getting worse yet so I'm hoping that's a good sign.

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I also tried simponi for several months. It worked very well for my joints and

fatigue. The down side for me was that I had constant bacterial and fungal

infections in the female region. Then a bout with a severe sinus infection

which led to ear infections that eventually got so bad my eardrums ruptured and

bled. It took a month of antibiotics and high dose prednisone to cure it and

longer to restore my hearing. My rheumy pet insisting it wasn't from simponi

even though my other docs said it absolutely was! He convinced me go start it up

again. Within a week the yeast and bacteria started back up along with terrible

abdominal pain which they found to be a major Step B infection (never even heard

of it before this). After that I flat out told my rheumy I was stopping simponi

and put my foot down. No infections since....

Ang~

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  • 1 month later...

For me the effects of Simponi kept getting better and lasting longer during

the month, the longer I took it. I think it topped out after about 7 to 8

months. It helps the inflammation but I still need to use other drugs to

help. I use 5mg of prednisone, Celebrex and azathioprine.

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I had my first injection of Simponi on Nov. 2nd and was told to stay on all

other meds because they didn't want me to flare up while the Simponi was taking

effect, so I still take Sulfasalzine and Doxycycline as I was taking it before.

I was told that the doctor would monitor me and adjust medications after I had a

few doses of the Simponi. I have done so much better since taking the first

dose. I can't wait for me second!

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  • 5 weeks later...

Hi,

I've been on Simponi for a year. The first 3 months or so I had a really

bad headache the day after injecting, but that stopped. Other than that, I

think it controls my RA very well. I have not had a flare in a long time.

(Of course I probably just jinxed myself by saying that.) I also take

Arava, Minocycline, Voltaren, & fish oil. Best wishes,

Patty

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thanks patty!It has been 5 days since my injection....it seems to be working

take care

rob

>

> Hi,

>

> I've been on Simponi for a year. The first 3 months or so I had a really

> bad headache the day after injecting, but that stopped. Other than that, I

> think it controls my RA very well. I have not had a flare in a long time.

> (Of course I probably just jinxed myself by saying that.) I also take

> Arava, Minocycline, Voltaren, & fish oil. Best wishes,

>

> Patty

>

>

>

>

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  • 3 weeks later...

Are there any Simponi users out there? I"ve been doing so good, arthritis-wise, on Simponi for the last year. However, for the last 4 months, within 36 to 48 hours of taking my shot (which is monthly), I've either come down with a cold or a GI type bug. I took my shot this past Saturday night, and by monday afternoon I was running a fever and had gotten a cold. So that makes 5 months in a row. 2 weeks ago I started feeling like my blood pressure was elevated, and it was. 150-160s over 100's, which is not good. I had to go on an additional blood pressure med (I was already on one for the last year). Now I read in the prescribing information that Simponi can cause elevation in blood pressure.

Anyone else on the group have these kinds of problems with Simponi? I see my rheumatologist on Monday to talk about all this.

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