Spondylitis Association of America
Posted By: cipher AS to PsA - 04/24/19 09:23 PM
About eighteen years ago I was diagnosed with AS. I was treated by a local rheumatologist for a number of years and when my insurance changed, I went to the VA because the drugs are much less expensive. After being treated there for eight years though, I was told that I didn't have AS after all and the drugs were withdrawn. At my last visit the rheum there told me I had an auto immune disease but she didn't know what it was. It was about a 350 mile round-trip to the VA every three months so I'm thinking maybe this was a positive. (I was paying for my lodging when I went to the VA hospital and found out on my last visit that there's a Travel and Lodging group which will provide a hotel room if you travel very far. SMDH) So, I went back to the rheumatologist here in town. After testing and looking at my symptoms he decided on a Dx of psoriatic arthritis. Now the symptoms fit - low back pain and SI joint involvement without the ankylosing part, fingers and feet swelling, painful joints and those ridges and pits in my fingernails. My left knee persistently swelled and my Dr suggested a synovectomy and the biopsy done afterwards showed PVNS. I'm kinda curious if anyone else here had had the PVNS Dx.

At my last visit with the Doc here in town he explained why he made the change in my diagnosis and it made sense. During the visit he mentioned that the medication is a bit pricey. I asked him to explain "pricey" and he said it's about $60,000 a year. Yikes! So now I'm more or less in limbo until I find out about help with the drug costs. I'm retired on Social Security.
Posted By: Ken Delano Re: AS to PsA - 04/25/19 10:58 AM
My Rhuem decided about 12 years ago that I have both AS and PsA. I'm very lucky to have the VA system. I added up the med costs a few years back. $60k was right about what I figure I would have to pay if I was buying the meds myself. The VA is able to buy the meds for a significantly lower price. Even at that it's still allot.
Posted By: SouthernMoss Re: AS to PsA - 04/25/19 02:41 PM
Can you go back to the VA with your new PsA diagnosis and see if they concur? If so, would they take up treatment again?

There have been some discussions here in the past about biologics and Medicare. I know Medicare Part D doesn't allow participation in the drug manufacturer's co-pay plans for injected biologics. But if your income is low enough, you might still qualify for one of their other assistance programs.

If I'm not mistaken, the infused biologics (like Remicade and Simponi Aria) may be covered by Medicare Part B and by some of the Medicare Supplements. Here's a recent thread where Medicare and Medicare Supplement coverage was discussed. There have been other discussions too that can be found with a search.
Posted By: Caturday Re: AS to PsA - 05/01/19 03:36 AM
I am diagnosed with PsA and AS but i go through blue cross blue shield which has been great for me thus far... approved for humira and cosentyx!
Posted By: cipher Re: AS to PsA - 05/27/19 04:00 PM
My local rheumatologist sent current information to the VA hospital where I was being seen. The message I got given to me by the nurse was that the VA decided that I have no AS, no PsA. I don't qualify for help with the cost of the medications and currently don't have drug coverage.
Posted By: WhiteCell Re: AS to PsA - 05/30/19 03:51 AM
Contact your local congressman's office and ask for their assistance in dealing with the VA. They frequently have existing relationships with decision makers in government agencies who can facilitate. Good luck.
Posted By: Ken Delano Re: AS to PsA - 05/30/19 10:43 AM
cipher have you filed a claim through one of the Service Organizations or a County VSO? If not, contact either the DAV, PVA or Purple Heart. Have them represent you.
Posted By: RAHMBA Re: AS to PsA - 05/31/19 12:33 AM
This page makes writing your congressman SUPER easy.


Type your zip code and all your ejected officials pop up. Click who you want to write and the text box opens up to send your letter.

Hope this helps.
Posted By: BigDaddio Re: AS to PsA - 05/31/19 01:29 AM
Did you see a rheumatologist at the VA, or another type of provider? What clinical justification did the VA provide for denying a DX of psoriatic arthritis? Also, please talk to your local VA about the VA MISSION Act which becomes effective June 6th. Your medical issues combined with the distance you travel to the VA should make you eligible under the Act for care outside the VA...at the VA's expense. It's possible under this initiative you could see a civilian rheumy closer to home who will DX and treat the condition properly. More info can also be found by visiting the VA website and do a search for "mission act" (starting on the 6th I think there's supposed to be a link on the va.gov front page). This Act updates and expands the ability for Veterans to be seen in the community through the VA.
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