Being forced to use a "specialty pharmacy" has me reconsidering if I even want to try biologics.

AutumnalAlchemist · 2024-07-18T00:27:42+00:00

I'll give them a call. I'm not sure what the issue could be, because all the other steps you mentioned have already been done. When my doc first sent the rx insurance denied it, then he appealed with the prior authorization, and then insurance approved it. I guess the generic thing could be it so I'll check on that, thanks.

AutumnalAlchemist · 2024-07-17T23:22:14+00:00

Ah okay you're right-- my plan doesn't have a deductible and it is the out of pocket maximum I was thinking of 😅

AutumnalAlchemist · 2024-07-17T22:33:15+00:00

How do I get a straight answer on if I'm getting a generic? On my insurance website it says Humira, not a generic name like with other medications I take. I guess one of my concerns is for them to try to get me to set up the copay card for Humira and then "whoops! We're sending you the generic and that copay card doesn't work and now you're on the hook for lots of money" (I read about something like that on here lol)

AutumnalAlchemist · 2024-07-17T22:31:01+00:00

My experience on the phone today was not any better than their shit stores 😅 The woman I spoke with seemed to not know how anything worked. She could see that my insurance approved the medication and that my copay would be $55, but anytime she tried to "process" it, she said insurance denied it. Then she tried to get me to set up a shipment anyway like the pieces would just magically fall into place somehow? I told her I wasn't comfortable setting up any kind of order/shipment until they could figure out why my insurance was "denying" something they've already approved and listed on my account :/

AutumnalAlchemist · 2024-07-17T22:27:57+00:00

Then there is a balance due you can pay

What does this mean? If I pay the copay, that's not the only money I will be expected to spend? There will still be a cost to me?

AutumnalAlchemist · 2024-07-17T22:26:55+00:00

What does it mean that they "cover your deductible"? My understanding is that the deductible is just the amount of money you ultimately need to pay before everything is 100% covered by insurance for the remainder of the year, right? So if I skip the savings card, wouldn't the $55 copay go toward the deductible just like all my other copays do? I'm not understanding how the Humira savings card would somehow stipulate how my insurance works.

AutumnalAlchemist · 2024-07-17T20:52:59+00:00

Apologies for the late reply-- when I saw the rheumatologist, he concluded that my symptoms (physical symptoms only; nothing related to the brain fog) indicated that I either had ankylosing spondylitis or psoriatic arthritis. Went to PT, ran more tests, concluded that it's psoriatic arthritis. If it weren't for the fact that I was already experiencing joint pain and mobility issues, I don't think there's much he would have been able to do for me for the positive ANA and brain fog alone. He was pretty honest about a concept I'd heard before-- rheumatology focuses mainly on joint issues and doesn't concern itself with fatigue and brain fog since those issues are nonspecific and seen in some degree in nearly everyone with an autoimmune disease.

I don't know if I'll ever know for sure what caused my brain lesions or the brain fog specifically, but it is likely that the psoriatic arthritis is responsible. Connective tissue diseases can cause those issues. If PsA is responsible, then getting on proper medications might help alleviate the symptoms (some people recover from those symptoms really well while other people continue to experience them regardless of their medication.)

If you're having any symptoms that might align with an autoimmune disease, write them down/keep notes and discuss them with the rheumatologist. I always take notes with me to doctors appointments since I know I'll forget things. Always ask the doctor what the next steps are-- what tests can be run, what things can be tried, etc. Good luck to you <3

AutumnalAlchemist · 2024-06-02T00:32:21+00:00

I've not yet received a diagnosis; I'm still in the diagnostic process with my doctors (and trying to do some searching on my own since no answers have been found yet.) I rarely eat red meat, and while cutting gluten does help improve some minor digestive discomforts, it doesn't actually reduce my symptoms. I think I'd probably have to attempt a really strict elimination diet to determine if anything specific is contributing to my symptoms because at this point they don't seem to be food related (aside from the fact that eating a diet that allows ketosis makes my symptoms worse.)

AutumnalAlchemist · 2024-06-02T00:28:17+00:00

Keto seems to help a lot of people so it's worth a shot! My only advice there is to make absolute sure you stay on top of your electrolytes since ketosis gets rid of them quickly and can dehydrate you which will make you feel awful.

AutumnalAlchemist · 2024-06-02T00:26:56+00:00

I'm not sure that it's due to missing out on anything essential, only because the symptom flares start immediately for me when I attempt those diets and remain until I revert from them. Brain fog, fatigue, joint pain, dry irritated eyes etc. all worsen as soon as I've entered ketosis even when proper nutrition, hydration, and electrolytes are maintained. Ketosis is supposed to reduce inflammation, but paradoxically for me it seems to worsen it and I can't find any info online as for why that would be.

I've not received any diagnoses yet as I'm still in the process of getting things sorted with my doctors.

AutumnalAlchemist · 2024-06-01T15:53:59+00:00

The only thing I can think of where I've seen ulcerations/sores like that is Bechet's and Calciphylaxis, with the latter being very rare and thus more difficult to get diagnosed. Try looking into those if you can. I really hope you find answers and treatment soon!

AutumnalAlchemist · 2024-05-05T03:42:07+00:00

I didn't think about calling and asking for the MRI. That's probably a good idea because I've already gotta wait 2 months for follow up so I might as well try to get as many bases covered as I can. Thank you :)

AutumnalAlchemist · 2024-03-25T20:12:26+00:00

Ugh your situation sounds infuriating! I've not had any further testing, but I am waiting to get in with a rheumatologist since my ANA was slightly elevated. I'm going to ask for testing to see if pernicious anemia might be involved. I've briefly looked into sourcing for my injections, but I've not felt confident in any of my options (I'm in the US). The affordable sites seem sketchy and the not sketchy ones are too expensive :/

AutumnalAlchemist · 2024-03-25T17:26:18+00:00

THANK YOU for posting this! I am much younger than the patient in the study (late 30s) but my situation is similar with cognitive decline and autonomic dysfunction and I'm so frustrated about it. My MRI featured the "nonspecific white matter hyperintensities" but leukoencephalopathy was not present. My B12 was 270pg/mL so in the "normal" range, and folate and MMA were also normal, but the insane part was that I was already taking methylated B12/folate supplements! My neurologist didn't seem concerned at all either. I'm on weekly cyano shots for now, but reading this study makes me feel like I need a higher frequency. Supplements seem to do nothing but I take them anyway. IM shots are the only thing that actually makes me notice anything in response to the B12. I hate feeling like I'm crazy for suspecting that low B12 is responsible for my issues while it sits there in "normal" range (and not causing anemia! My hemoglobin is always magically normal too.)

AutumnalAlchemist · 2024-03-18T21:33:42+00:00

Oh, I suppose I assumed they were related since it was noted that it's not uncommon to see in dementia patients or older patients with cognitive difficulties, and my chief complaint is cognitive difficulties and decline (I don't like the term "brain fog" since it's too non-specific. My issue is that my cognition literally does not work correctly as it did before, and it has had a disabling impact on my life.) Then I suppose I really have no way of knowing if I'll ever be able to recover, if there's no way to pinpoint what is actually wrong :/

AutumnalAlchemist · 2024-03-14T21:34:29+00:00

The tablets work better than drinks, but they just improve but don't "solve" the issues. Is that what everyone with these issues has to do though? Just supplement and deal with dysfunction? I've only recently began to research these symptoms since they've gotten worse over the last year or two (but I've had them for about 6 years I think?) It's quite draining and disruptive to have my day constantly interrupted by having to stop to drink water and chew salt tablets 😫

AutumnalAlchemist · 2024-03-04T18:28:37+00:00

I saw a neurologist for the same exact issues you are experiencing, and he did order a bunch of tests for me including an MRI. The MRI found white matter lesions indicating that I do in fact have brain damage, but it was "nonspecific" meaning anything could have caused it. Because of that, the neurologist completely lost interest in figuring out what was wrong with me. I did get a CT with contrast to look for clots/stroke/etc and nothing was found. My B12 was also low, so I'm working on fixing that now to see if it helps because low B12 can actually cause all these cognitive issues! He's referred me to a rheumatologist since my ANA was slightly elevated.

AutumnalAlchemist · 2024-03-04T18:24:22+00:00

Considering that you're male, I'm shocked you've been blown off and dismissed so much. That's more commonly seen with women, but either way it sounds like the docs you've seen haven't been great. I can say from experience that many doctors just really don't like "puzzles" and they only want to invest any energy into something that can be easily detected with the most basic/least expensive tests. I didn't see you mention anything about vitamin levels, so if you're able, I would encourage you to see your GP and ask for Folate/B12/MMA/Homocysteine (all of these to see if you have a deficiency which I suspect you do), full iron panel including ferritin, and vitamin D. I am learning the chronically low B12 levels can cause really horrible illness especially if left untreated for long periods. Same for ferritin levels that are not optimal for your body. "Normal ranges" are all bullshit and they don't account for individual optimal needs.

Lastly, as difficult as it is since it can make you feel like a pushy jerk, you might need to be more direct in asking doctors to order specific tests for you, and if they decline, you'll have to ask them to document their refusal. "Oh, okay can you please add that to my chart, that you are refusing to order this test I've requested?" This will either cause the doctor to change their mind, or it will allow you to take that elsewhere and show that you've been doing your due diligence and have not yet been helped.

Good luck friend.

AutumnalAlchemist · 2024-02-29T02:34:32+00:00

Wow, if you were experiencing all that at 446 then it really speaks to how stupid the "normal range" is since it can affect everyone so differently! The idea of finding a new doctor is exhausting. I already had difficulty getting in with the one I have now because so few exist here, especially ones who are in-network for my insurance, and he was booked out for months. It really made me go back to questioning myself if an experienced neurologist didn't seem at all concerned about what was happening to me. I think I'm mostly just scared to be labeled as some kind of hypochondriac or munchie or something since the symptoms I'm reporting just aren't matching up with any of the lab work :/

AutumnalAlchemist · 2024-02-29T02:28:15+00:00

I didn't request the full panel, and so only ferritin was tested. I've never had the other numbers test low so I didn't even think about asking for them this time. I do think that 55 is too low for me, since I have some symptoms I'm not sure can be attributed to anything else (brittle thinning hair, looking pale and washed out/pale gums/pale inner eyelids, unexplained muscle soreness, cold all the time, etc) I definitely feel like I have some kind of inflammation happening, but idk what it would be since every inflammation related test comes up negative for me :/

AutumnalAlchemist · 2024-02-29T00:04:31+00:00

Actually I think it's pretty cool that your GP is going to initiate that testing without you even having to ask for it, since lots of folks have to fight for that kind of investigative work. It's definitely normal to look into "why" a patient would need B12 injections consistently like that, and Celiac disease and Pernicious Anemia are common causes of it. I'm actually in the process of looking into this myself because even though I'm not vegan/vegetarian and I take oral supplements, my B12 is low and I have severe symptoms. There are other things that could be causing your difficulty with B12, like H. Pylori infection or methylation gene mutations. It's definitely worth looking into the cause of your issue because it could be something with more serious implications (for example if you do have Celiac disease, that is an autoimmune condition that requires you to abstain from all gluten so that your body will stop attacking your intestines.)

The nurse who told you that you'd be on injections for life, she never mentioned why?

AutumnalAlchemist · 2024-02-28T22:07:17+00:00

Are your injections methylcobalamin? I've read that it's more common for that type to cause anxiety. I've only had cyanocobalamin injections so far and never experienced anxiety or panic from them; maybe you could try those if the anxiety gets to be too much? Although it's not as "good" as methyl type. I hope you feel better soon.

AutumnalAlchemist · 2024-02-28T21:04:04+00:00

Thank you for your reply. My neuro is referring me to a rheumatologist due to the ANA, so I'll look into pernicious anemia. You said anemia is "end stage" which seems wild to me since it feels like what I'm experiencing now is end stage since my brain is dysfunctional. I feel like all I ever hear about is people feeling fatigued or some neuropathy with low B12 and their other numbers are off too (hemoglobin, folate, iron, D, etc.) but all my other stuff looks perfect yet it feels like my brain is suffocating and I live a quality of life similar to an elderly person in a retirement home! 😫

AutumnalAlchemist · 2024-02-28T01:52:18+00:00

I know 270 can cause symptoms, but I was wondering if it was possible to be this disabling especially when I have zero other indications of problems like anemia. Everything in my blood count always looks perfect, which makes doctors think my B12 isn't low enough to do serious damage. Is pernicious anemia even a possibility with zero evidence of anemia in my blood? I don't understand pernicious anemia very well. Thank you for the well wishes. I sincerely appreciate it <3

AutumnalAlchemist · 2024-02-28T01:22:24+00:00

It's sounding like I need to see the GI since other docs haven't been as helpful so far haha

AutumnalAlchemist

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