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#277571 - 03/19/17 01:04 PM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1607
Loc: MS
Ken, that's good to hear!
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#277578 - 03/20/17 03:37 AM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1496
Loc: Minnesota
Wonder if my Rhuem has figured out a new treatment plan that will work for others. I see her in two weeks. Would not be surprised to hear her say that she is going to do a paper on it.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#277696 - 04/05/17 11:56 AM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1496
Loc: Minnesota
Saw my Rhuem today. Things are going great with this Enbrel/Otezla schedule. CRP was only 7.5 which is the lowest I've been in several years. So we will do bloodwork in three months and then She her again in October.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#277697 - 04/06/17 06:53 AM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
tbd Offline
Registered Visitor

Registered: 09/04/13
Posts: 53
Glad to hear you got a good va doc. My va doc is horrible. When I could afford a civy doc, I had a great one. She ended up putting me on humira and arava at the same time. That worked really well for me. My psoriasis was decimated. Just had a small bit clinging to my scalp. Now that I am back at the va they won't give me arava. The humira is doing a pretty good job tho.

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#277698 - 04/06/17 09:15 AM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1496
Loc: Minnesota
Yeah the Minneapolis VAMC is the flag ship of the VA and the largest VAMC. Heck they could teach mighty Mayo a thing or two IMO. They have a very direct link to the area Medical schools. Many of the specialty clinic Dr's I see are also teaching at the schools. Then there is the "we are the 3rd largest research hospital in the US" thing and they are the largest Hospital in the Upper Midwest. So yeah, I am really lucky to have them.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#277699 - 04/06/17 09:29 AM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
Banana Online
Registered Visitor

Registered: 07/23/06
Posts: 6425
Loc: New York
Arava is really cheap, there is a generic. Why won't they give it to you? It has helped me a lot too. I stopped it a year ago, am back on it and again it is tweeking my treatment.

Maybe you can ask dr to write prescription and pay it out of pocket. I paid $18 for three months.
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#277702 - 04/06/17 09:32 AM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
tbd Offline
Registered Visitor

Registered: 09/04/13
Posts: 53
The problem is my VA Rheumatologist. Even tho I am 20% service connected for PsA my Rheumatologist says I don't have it. I'm forced to get any treatment I recieve from dermatology. Derm cant prescribe arava, thankfully they kept me on the humira or I'd have nothing.

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#277703 - 04/07/17 04:38 AM Re: Otezla AND Enbrel? Yes..... [Re: tbd]
Banana Online
Registered Visitor

Registered: 07/23/06
Posts: 6425
Loc: New York
Very Sorry. That sucks.
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#277705 - 04/07/17 06:25 AM Re: Otezla AND Enbrel? Yes..... [Re: tbd]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1496
Loc: Minnesota
Originally Posted By: tbd
The problem is my VA Rheumatologist. Even tho I am 20% service connected for PsA my Rheumatologist says I don't have it. I'm forced to get any treatment I recieve from dermatology. Derm cant prescribe arava, thankfully they kept me on the humira or I'd have nothing.


You need to start contacting groups such as a Veterans Service Officer, DAV or Congress/Senator. The VA has you SC for PsA then they must treat you for it.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#277707 - 04/07/17 07:22 PM Re: Otezla AND Enbrel? Yes..... [Re: Ken Delano]
tbd Offline
Registered Visitor

Registered: 09/04/13
Posts: 53
I will talk to a patient advocate this week. Thanks. Trying not to take over your thread. How is otezla treating you. I was on otezla for 6 months and didn't notice much change. I tried sulfasalazine for about a year and most of my ibs issues started to vanish. I went from pooping 5 or so times a day to 2. Humira has kept this trend. It's is hardly a problem now.

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