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#506315 - 09/07/14 05:28 PM Simponi?
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Has anyone had any good results whilst taking Simponi?
I have been on Anti Tnf medication for around 10 years now, with some good results over 8 of them.
I started on Remicade around 10 years ago. After around 5 years on Remicade, the benefits decreased. I then started Humira, had 3 good years on that. Over the last 2 years the benefits from Humira have decreased.
I'm going to start Simponi in around 3 weeks time, hoping for some decent pain control.
Anyone else tried a few different Anti Tnf medications?
Thanks.


Edited by Boroboy (09/07/14 05:29 PM)

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#506325 - 09/08/14 01:43 PM Re: Simponi? [Re: Boroboy]
millford Offline
Member

Registered: 01/18/11
Posts: 35
Loc: Copenhagen, Denmark
I'm on my fourth biologic in two years. Humira was the first one, and was wonderful from day one. The rest I've had little, or no success with. Simponi didn't do anything for me, but as we know that's no indicator it won't work for the next guy. I certainly hope it will for you. Fingers crossed (those that aren't crooked and swollen wink )

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#506326 - 09/08/14 02:51 PM Re: Simponi? [Re: millford]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Millford,
Thanks for posting.
With my experience with biologics, they took beteen 6-12 weeks to work. Before I experienced any pain relief, then over time, became less effective. Talking about Remicade & Humira. Humira for me now, seems not to be helping at all. Well I have taken it for around 5 years.
I was quite happy plodding along with nsaids for pain control, until they totally wrecked my stomach. Then started on Remicade.
I have had times in the past, where I suffered from low pain days. It's been that long now, I cant remeber.
I hope you find some future pain relief.
Cheers.

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#506328 - 09/08/14 03:59 PM Re: Simponi? [Re: Boroboy]
fonzy Offline
Master_Sergeant_AS_Kicker

Registered: 11/08/08
Posts: 640
Loc: ontario canada
I tried Enbrel...didnt work Humira...worked for a year. Now i am on Simponi and it worked about an hour after i injected it.I am still on Simponi and pain is reduced big time.I just have a little acke in my lower back.I have been on Simponi for 3 years now.

Hope it works this well for you my friend.
_________________________


Happy Trails To You Until We Meet Again





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#506329 - 09/08/14 04:48 PM Re: Simponi? [Re: fonzy]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Fonzy,
Thanks for your reply.
I'm really pleased Simponi is still working for you. I really don't know why it has took me 2 years to make my mind up to come off Humira, as its not been working well for a long while. Still time for change.
Hoping for some low pain days ahead.
Like the dog. I have a staffi cross, my second staff. She keeps me active.




Edited by Boroboy (09/08/14 04:50 PM)

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#506600 - 09/22/14 12:26 AM Re: Simponi? [Re: Boroboy]
j28 Offline
New_Member

Registered: 01/13/14
Posts: 7
Loc: toronto
Simponi started working for me immediately and by the 3rd month I was pain free. Now after my 8th dose I'm feeling a little bit of a flare up. I hope its temporary but if not I may need to switch to another biologic. Simponi was my first one.

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#506602 - 09/22/14 05:12 AM Re: Simponi? [Re: Boroboy]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 430
I am getting great results with Simponi and have no side effects except for some tiredness a day or two after injecting. I do still flare when I get ill and then I take extra steroids to kick out the flare. Prior to Simponi, I tried Enbrel, Humira and Remicade. Humira did nothing for me. I did get some pain relief on Enbrel and Remicade but I was always sick with infection and had all over hives. I think I developed antibodies to Enbrel and Remicade. Hope you get great success on Simponi.

Shari
_________________________
Meds leflunomide 20 mg, sulfasalazine, Prednisone 10-20 mg and methylprednisolone dose pack, gabapentin, Tylenol 3 , ketoprofen and gabapentin compounded cream

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#506660 - 09/24/14 08:17 AM Re: Simponi? [Re: j28]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
J28,
I hope Simponi keeps working for yourself. I should of tried changing to another Anti Tnf around a year ago. As Humira is certainly not working for me now. I've been on it for around 5 years. So done well really.

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#506661 - 09/24/14 08:22 AM Re: Simponi? [Re: Winter]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Shari,
Thanks for your reply.
Pleased your getting along well with Simponi, long may it last. I think Remicade worked for me better than Humira initially. Humira not working for me at all now.
I've struggled mainly with my ribs and back now for around 6 months. After changing my car. Struggling with my seat. Use my car for work quite a lot.
I'm starting Simponi in a couple of days time. Has now been a month since my last Humira shot.
My fingers are crossed for some low pain days ahead.

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#506790 - 09/29/14 04:11 AM Re: Simponi? [Re: Boroboy]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Update.
Have started on Simponi. Will give it a few months, then I will post back with the results.

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#506842 - 10/01/14 09:54 PM Re: Simponi? [Re: Boroboy]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 430
Hope you are getting positive results on Simponi.
_________________________
Meds leflunomide 20 mg, sulfasalazine, Prednisone 10-20 mg and methylprednisolone dose pack, gabapentin, Tylenol 3 , ketoprofen and gabapentin compounded cream

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#506853 - 10/02/14 03:11 PM Re: Simponi? [Re: Winter]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Winter,
Not as yet, but it has been less than a week. Have a virus at the moment, so that's not helping. With the other two Anti Tnfs I have tried. They seemed to take around 4-12 weeks, before I felt any positive results.
Thanks for asking.

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#506991 - 10/09/14 08:00 PM Re: Simponi? [Re: Boroboy]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 430
Sorry you have a bug. I am finding that LDN is helping keep me more healthy but now that I typed that, I will probably be doomed.

Hope you get some relief from your illness and AS real soon.

Shari
_________________________
Meds leflunomide 20 mg, sulfasalazine, Prednisone 10-20 mg and methylprednisolone dose pack, gabapentin, Tylenol 3 , ketoprofen and gabapentin compounded cream

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#507014 - 10/10/14 05:29 PM Re: Simponi? [Re: Winter]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Shari,
I asked my G.P about LDN a number of years ago, but she wouldn't prescribed it for me. I do live in the U.K, can be a battle at times. When it comes to medication & treatments.
I don't think taking anti tnf meds for the last 10 years as helped me on the virus front. Still not missed a days work in 5 years. I tend to go in, no matter how bad I'm feeling crazy There again, I only work part time. If my health was better, would like to work more. I tend to know my limitatiions these days with work. I do feel lucky, to be able to work.
Hope LDN keeps working for you.

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#507021 - 10/11/14 06:53 AM Re: Simponi? [Re: Boroboy]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 430
Thanks for the kind words. You sound like a hard worker. I work prn in a nursing home and have been on biologics for 10 years. I gave my body a break from biologics for a couple years due to illness and had a hell of a time getting the disease managed again.

Have you visited the LDN boards? You should be able to find a doc to prescribe you LDN on there. LDN is inexpensive and is well tolerated. It has been a game changer for me. Prior to LDN, I was taking a lot of antibiotics and had a lot more pain and fatigue.

Hope you are feeling better.

Shari
_________________________
Meds leflunomide 20 mg, sulfasalazine, Prednisone 10-20 mg and methylprednisolone dose pack, gabapentin, Tylenol 3 , ketoprofen and gabapentin compounded cream

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#507047 - 10/13/14 07:52 PM Re: Simponi? [Re: Winter]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Shari,
Thanks for your reply.
I work as an adult disability support worker.
Had a career change a number of years ago, due to me A.S & eye issue.
I also suffer from extreme photophobia within my right eye (long story), probably caused by an iritis flare. Have to wear cat 4 wrap around sunglasses both indoors & out now, all of the time. Have done for around 6 years. Now have a cataract within my right eye.
Regarding ldn. Will probably stick it out a bit longer on Anti Tnf, without ldn. Appreciate the kind thought though.
Many thanks.

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#507083 - 10/14/14 10:19 PM Re: Simponi? [Re: Boroboy]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 430
Your job sounds interesting. I would love a desk job helping the disabled. Many of those jobs here are full-time. Sorry to hear about your eye issue and having to wear the wrap all the time. Does that help the pain and or sensitivity? I never experienced iritis. Hope you start getting more pain relief on your biologic. Take care.

Shari
_________________________
Meds leflunomide 20 mg, sulfasalazine, Prednisone 10-20 mg and methylprednisolone dose pack, gabapentin, Tylenol 3 , ketoprofen and gabapentin compounded cream

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#507153 - 10/17/14 04:57 PM Re: Simponi? [Re: Winter]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Originally Posted By: Winter
Your job sounds interesting. I would love a desk job helping the disabled. Many of those jobs here are full-time. Sorry to hear about your eye issue and having to wear the wrap all the time. Does that help the pain and or sensitivity? I never experienced iritis. Hope you start getting more pain relief on your biologic. Take care.

Shari

Shari,
My job is mainly community based. Supporting adults with learning/physical difficulities within their homes, out & about within the community. A career change, to be honest. Job I can manage & enjoy. Can be challenging at times.
Yes I wear the glasses, reduces the pain/glare from light.
My pain levels seem a little batter, hard to tell putting up with a virus still. It's going around. Neither does it help being on a biologic.

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#508331 - 01/01/15 03:41 PM Re: Simponi? [Re: Boroboy]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
One thing I've wondered is what's the big deal with SIMPONI and why is it different from HUMIRA. They are, after all, both fully-human anti-TNF monoclonal antibodies.

I got an answer. Golimumab (SIMPONI) is more stable both in buffered solution and in the human body than adalimumab (HUMIRA). It has a 3.3-fold higher affinity for TNF-alpha and thus has a stronger effect and works at lower serum and tissue concentrations. Thus, it does actually appear to be a superior product. Interestingly, both drugs have terminal elimination half-lives of about two weeks. But because golimumab has higher affinity, it probably keeps working until the next injection in 30 days while adalimumab doesn't and needs dosing every two weeks.

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#509405 - 02/19/15 06:18 AM Re: Simponi? [Re: Boroboy]
firmhead Offline
New_Member

Registered: 11/21/05
Posts: 6
Hello everyone,

I was managing my As with nsaids and sulfasalazine for almost 5+years till now. I still had pain, sometimes significantly much but now after a recent flare which resulted in swollen toes and eye inflammation my doc is going to give simponi to me in 2 weeks time. Read about this changing people's lives so hoping for the same. May be after this, I can play football with my 5 year old son!


Edited by firmhead (02/19/15 06:19 AM)

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#510264 - 04/09/15 01:36 PM Re: Simponi? [Re: Boroboy]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4478
Loc: NE Oklahoma
MikeGinnyMD, that's interesting about Simponi--since I never really got any relief after 2 weeks into the dose, then gave up after 8-9 months. (But I did like their auto-injector--very painless, even though I usually used the pre-filled syringes.) I was really skeptical of Cimzia after having so much trouble with Simponi, given that both were monthly doses. Yet Cimzia DOES last me a whole month (two shots at same time). Just shows that everyone is different. If one doesn't work, just move on to another. Cimzia is my 5th one.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cosentyx (6th biologic) starting soon.
Epidural Steroid Injections x7; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x8

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#510468 - 04/21/15 08:52 AM Re: Simponi? [Re: Boroboy]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
If the simponi is a superior drug compared to say humira, as some of these posts describe, I hope that the insurance companies will start approving biologics past remicade, humira, and embrel. that's all my insurance company will allow now, so i was fortunate that my rheumy and i decided to start with humira and fortunate that thus far it works well.

maybe in time they will relax their approvals. i know its all about money. and know peole can petition, but nice when people don't have to take that extra step.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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