31 posts shown.
Sorry if this is a bit off-topic.
After years of dealing with doctors and hospital visits, I’ve finally run into the one thing I wasn't prepared for: pure administrative chaos. ☕
I could really use some advice on how to handle this, because right now, my only thought is to head down to the Social Security Administration office and file a formal complaint.
Here’s the deal. I’m being treated at Cedars-Sinai, and when they discharged me last week, they gave me internal referrals for some follow-up tests I need before my next check-up. Part of that involves heading over to UCLA Medical Center for allergy testing, and that’s where everything went sideways.
The internal referrals didn't have a standard serial number—just an electronic referral code. The clerk at the front desk sent me straight back to Cedars, claiming she couldn't admit me without a specific barcode. So, I went back to my administrator at Cedars, who basically told me she needed to "look into it" and insisted all the data was already in the digital system. I tried UCLA again this morning, and once again, they refused to take me because they apparently can't read their specific electronic format. After I practically begged and insisted, they finally agreed to draw my blood, but they told me I still have to bring them the physical referral later.
Now, the administrator at Cedars claims she can't issue a different version, my insurance provider refuses to step in—saying hospitals should just coordinate with each other—and I’m stuck spinning my wheels.
What am I even supposed to do? I have to get these results to my specialist by March 17th, regardless of how much paperwork I'm missing. 🤔
Kyle Vaughn8 said:oh, man. 🙂
but I get it—it’s always like that in the US, they just overcomplicate everything for no reason.
even though things aren't exactly perfect over here either—my doctor is a total neurotic, honestly. the second I started the meds, he was already acting dissatisfied. according to him, it isn't working quite right, even though there isn't anything else we can try. but for now, we're just stuck with the idea that it's not working... although who knows, could be anything, really 🙄 so good luck with that. it just drags me down into a depression.
things aren't exactly ideal here, either.
I know exactly how this feels. I was on Enbrel for five months, but my doctor finally pulled the plug last week because I started dealing with some really weird side effects. The drug itself actually worked—it pretty much wiped out my pain, almost 100%—but clearly, it was messing with other parts of my body too. So, now I'm back at square one, looking for something else that might actually agree with me.🍿
Kyle Vaughn8 said:honestly, that's probably the only way to go. thanks. 🙂
stopping my meds right now would be pretty stupid—at least while they’re still working, right? because if I stop, who knows if they'll even work anymore later on.
so I guess I need to start with a doctor first—find someone who actually knows their stuff—and hopefully they'll know what the next steps should be.
and I'm assuming I won't have to redo all those tests and scans once I've already cleared them all back home.
plus, maybe that drug will be more widely available in America in a few years anyway. 🤷
I suspect you'll end up having to redo all those tests from scratch. That's just how the system works here.🤦
With all this push for better access to biologics, I worry we'll all end up footing the bill ourselves. Between the government being a mess and the healthcare system struggling, we'll be digging deep into our pockets just to stay afloat...🕺
Kyle Vaughn8 said:I mean, I get it—pay in America is rough.
But the thing is, if you're living stateside long-term while still paying for insurance back home, it’s basically unsustainable in my book—I mean, those monthly premiums are almost like an entire paycheck.
Now, Remicade is probably the best bet for Crohn's, but I've heard that if you miss doses for a bit, it just stops working.
And hopefully, there's some way to switch over to Medicare and actually get coverage for it. 🤷
wanderingsailor52, no problem. 😉
The real nightmare is biologics—they just bring complications. You lose all your freedom to move around. 🙂
I wonder if they'll ever actually make them cheaper.
Why don't you just stay on your current therapy there while simultaneously hunting around for doctors here? Then, after maybe 6 to 12 months of searching, once they make a decision and if you get approved, you can finally make the switch over here.
Kyle Vaughn8 said:wanderingsailor52, thanks so much for the reply
Well, it'd be about a ten-hour drive for me to get my treatment. If I move down south and live in Savannah, I'm not working at the moment—that's why I'm thinking about relocating, assuming I find a job down there.
And I honestly don't know if it makes sense—paying for expensive health insurance out here while earning a salary back home? Does anyone even do that? 🤷
By the way, I'm currently on an eight-week cycle.
And to start off, I could probably just stick to traveling back for treatment every two months like you suggested.
Luckily I'm not *that* far away—I'm in Iowa, right? 😁 Though it’s still quite a trek; with my slow driving, it could easily turn into a 12-hour trip.
And yeah, Remicade is via infusion.
Personally, I’d suggest sticking with your current doctor and staying on the same regimen. If you start seeing new specialists elsewhere, there's always a chance they might try to switch you over to a different biologic altogether.
As for the money side of things, I don't know what insurance costs you'd face, but let's face it—salaries around here aren't exactly making anyone rich. 😁
wanderingsailor52 said:I just started biologic therapy recently, so maybe I can be of some help.
In the US, you can only get biologics through Medicare (correct me if I'm wrong), and the cost is covered by the hospital systems. When my specialist offered me BT, he asked if I wanted to self-administer it every two weeks or come into the clinic every six months for a two-hour session.
I'm on Humira. I inject it myself every two weeks, and I just "request" my next supply over the phone a week before I need to apply it. I think there are about 13 of us on BT in my county, and nationwide, I'm not sure, maybe around 1,000 if I recall correctly.
I was diagnosed with RA five years ago, so when I was 33, following knee surgery from a sports injury. I'm 38 now.
Over those five years, I tried sulfasalazine, which was a total bust, and ended up on a mix of methotrexate, Arava, and Decortin, along with the usual painkillers—mostly ibuprofen granules and Advil.
I stayed on that last combination for quite a while and it actually worked best for me, but whatever.
For your BT to be approved, the doctor has to submit a request, which first goes to a hospital board and then to a Medicare commission.
You have to run a whole series of tests—I assume you already know this—which all need to be attached to the application.
Basically, you have to meet these criteria: http://www.reumatologija.org/Preporu...nk=RA_HRD_2013
I guess as long as you don't show that necessary lack of response to standard treatment, the therapy won't do much. When the doctor submits the request, they basically use a calculator to crunch all these different factors and indicators; everything has to line up and show results that are worse than the recommended threshold.
But if you have the full documentation to satisfy the guidelines from the American Rheumatology Association, I don't see any reason why you couldn't get approved. It shouldn't matter where you're being treated. But that's just my opinion... 😢
I could ask my doctor about your situation; he’s an amazing guy and we have a really good relationship.
I'm seeing him at the end of January.
TapaTalk
It’s more or less exactly as you described, though some people fall under hospital coverage while others go through Medicare.
Either way, if someone wants to move onto biologics, they really need to find a doctor here in the States who will monitor them for a bit (at least six months), review all their previous records, and build a case that biological therapy is medically necessary.
Otherwise, they can just keep seeing their current doctor and continue receiving treatment there like they always have.
Charles Gomez2 said:mellowskipper3, if you don't mind me asking, what condition were you managing while you were on methotrexate for all those years?
I’ve been living with RA for about ten years now, but I still find myself lurking in this thread, hoping against hope that I'll one day feel better too. 😁 I try to keep up with all the advice and suggestions here, just searching for that one thing I haven't tried yet that might actually make a difference.
mellowskipper3 said:I'm pretty sure it is a cytostatic. I'll dig into it tonight and let you know for sure.
Now I'm actually more confused than when we started. 🤷
I spent some time digging through Wikipedia, and none of them are listed as cytostatics. Their chemical structures look pretty similar, though Salazopyrin has sulfur in its makeup while methotrexate doesn't.
That question really got me thinking. I was on methotrexate for seven years before switching over to Salazopyrin, which I've been taking for two now. I have an appointment with my doctor next week, so I'll definitely bring it up and ask...
Charles Gomez2 said:Does anyone have any updates to share?
I’m still taking Sulfasalazine (Salazopyrin), but nothing seems to be changing... I was wondering if anyone knows if this medication is considered a cytostatic drug or not, since I know Methotrexate is used for arthritis too...
I'm pretty sure it is a cytostatic. I'll dig into it tonight and let you know for sure.
Jason James3 said:ESR is 2 (normal range 4-24)
CRP is 0.3 (normal range 0.0 to 5.0)
white blood cell count is fine
fibrinogen is fine
Hemoglobin is fine
Iron is high at 36
Rheumatoid factor is 0.10 (normal range 0.0 to 14)
Waaler Rose - negative
AST is 400...
Does anyone know what a normal AST value is? And what does it mean if it’s elevated?
Check out this thread; there might be an explanation there already. If not, just ask.
An elevated AST titer usually points to a past strep infection. Honestly, honey, you definitely don't have arthritis since all your other results, including the rheumatoid factor, look good. Your AST is likely up because of that Escherichia coli you mentioned earlier. So, just try to relax. 🙂
wiredotter12 said:Before my urethral swab came back positive for Klebsiella pneumoniae and Enterococcus faecalis, my internist gave me this diagnosis:
- Arthritis reactive in remission &
- Polyarthralgiae
I'm not sure if that's still the official status, 🤷but I finished my 10-day course of Ciprofloxacin 500mg and I'm currently just taking one 500mg tablet of Salazopyrin daily.
The swelling in my knees and joints is down about 30-40%. It hasn't vanished, though. I'll need another swab to confirm if the Ciprofloxacin actually killed off the bacteria.
So far, my blood work, urine tests, CRP, and stool samples have all come back normal.
Do you have any suggestions for further testing? Maybe seeing an immunologist or an infectious disease specialist?
Since they told you the condition is supposedly in remission, it sounds like the polyarthralgia is the main thing bothering you now. If the pain gets unbearable, some over-the-counter pain meds might help; Salazopyrin is mostly there just to keep the underlying disease quiet.
As for the swollen knees, it's possible you've got some fluid buildup in there...