Fast Forward

Today, I had my 38th infusion of Simponi Aria in my final visit to the only rheumatology clinic I have ever visited. Doctors are retiring and I have been working on transferring for a few months. Apparently this isn't the only one closing around here, so patients are scrambling, as are staff. It was a skeleton crew and a much more sad experience than I expected. It brought me back here to this neglected blog.

So, I will update. This medication is working for me. My mother-in-law has also started taking it but not seeing the same results I have. It doesn't exactly come across as a success to say both hands are gnarled to the point that I frequently drop things. You name it, I have dropped it. My toes, particularly on my right foot, have been a significant persistent source of pain and the digit twisting is now visible. But my labs have been steady on SA without MTX. Since 2018, I researched and found reliable local medical marijuana that has been so effective that my blood inflammation lab is down to numbers not seen in years. (High CBD,  about 1:1.5 THC ratio, microdosing. I also quit smoking over 2 years ago using a 1:1 MMJ for 2 weeks.) I also have had several sessions and am continuing with some longer term goals with a person who is skilled in a variety of alternative therapies. So far, my sessions have included massage, dry needling, accupunture, and guasha. I am seeing some slow improvement with those therapies as well - less dropping (still too much, but less). Tomorrow is my next biweekly appointment.

I see a PA at the new clinic next week. It's different but also the same as when I first sought treatment where it ended today. I am insured, I am in control of my therapy, but I am still a chronic patient with severe Rheumatoid Arthritis. I am still a mom, though thankfully spread less thin these days so I am able to rest better. (I haven't even touched on how the pandemic has affected my life - suffice it to say I am immune compromised and vaccinated and my household masks everywhere.) Different, the same.

Been a while .. for a couple of things.

I knew it had been a while, I did not realize it had been nearly two and a half years. (Tap, tap, tap) Is this thing on?

Long story short, I never resumed the Humira and I rejected every suggestion Dr. Z made for another biologic for a long time. I grew weary of the weekly methotrexate shots and decided to try pills again all the time instead of just every so often. Choking those down made me want to sleep through Wednesdays altogether just to avoid it. (I didn't do that - sleep through an entire day - because I have way too many responsibilities. Since my last post, my daughter was hospitalized for DKA, I help a little at the dance studio where my daughter attends, my grandmother moved here and relied on me for everything until she passed away last month, and my other daughter is a high school senior this year. That's why it's been so long since I sat down to blog.) So, last fall, I caught a little cold and stopped methotrexate. Spoiler Alert: I never restarted it. I would visit the doctor and tell her I was worried about restarting it because I knew there were germs being spread in the house, between people I was around a lot. She'd look down her nose at me and tell me to get back on it. I wasn't missing it, not one bit.

Let me backtrack just a little. One day, I was calling Medtronic to inquire about my daughter's pump supply order, and I got to chatting with the representative about shots. She has RA, too. She hated methotrexate, too. She had a nasty immune/infection response to Humira, too. She even had the same food triggers as me. She told me about Symponi Aria, an every other month infusion. It is a step off Remicade, which is similar to the clinical trial drug I did all those years ago. It was working really well for her. And she got off methotrexate. SOLD! I talked to the doctor about it (I was still taking methotrexate at that point), and she sent me home with paperwork about it, the office had Big Pharma send me the financial aid stuff (because, you know, even people with insurance can't afford any of this crap ... except methotrexate). I didn't read any of it (see above about life and being busy), I just went with it as soon as I felt well enough to do it. By the time I had my first infusion, I'd been off methotrexate nearly six months, but my doctor wasn't fully aware of that until my second infusion. (For the record, I DID tell the nurse doing the first infusion. When I did confess to Dr. Z, she just shook her head and said, "I know why you hate it. Everybody does. Just stay off it.") I've now had 3. For the most part, it's working okay.

One weird thing, though. When I took Humira, I developed a very uncomfortable swelling on my underwear line, like down there, you know. Pretty sure it was a lymph node. Hurt like a son-of-a-bitch. When I talked to Dr. Z, it pissed me off that she dismissed it as "probably just an infected hair from shaving". It kept getting bigger with every Humira shot (which was every two weeks). It went away when I stopped taking Humira. Not a coincidence. Not an infected hair. A few days after my first Symponi infusion, I panicked a little because THE SAME SPOT began to swell and be tender. I coated it religiously in healing salve and it was almost healed when I got the second (booster) infusion four weeks later. Then it got bigger again. More healing salve. It was a good long time (about 6/7 weeks) before this most recent one, and it is nearly gone, not quite. I'll (try to) report back on that (in case I actually have any readers).

This stuff seems to work pretty well for me, especially immediately after the infusion. I sleep like a rock that first night (and I am always in need of good sleep). The pain in my hands is never fully gone, but it was like a damned miracle for what had become constant shoulder pain. Morning stiffness in the weeks right before my third infusion has been a bit more lingering than it was in the past. But, that's par for the course, right? I mean, I have rheumatism, for fuck's sake. I feel like, partly because I have had such major things happening in my life and have stayed insanely busy (and thus, exhausted), I can't accurately judge the relief of this med just yet. So, I'm going to give it a go for a while, take the gawd-awful laundry list of risks that go with it. Suck it up. And if I were the praying type, I'd be praying like hell that I never, ever, ever have to try methotrexate again. Man, I hate that shit.

I hate MTX.

I have been doing acupuncture therapy for allergy elimination for the better part of a year now. (If you are interested in that, Google "NAET" or "Nambudripad's Allergy Elimination Therapy".) The emotional and physical changes from that have been very noticeable. I am the third of four in my family who has successfully used this therapy (each for different reasons). My latest bloodwork shows that the inflammation level in my body is the lowest it has been in 5 years. So, I asked my doctor about the possibility of getting off Methotrexate - which is what I REALLY want to happen. She told me she did not recommend that because if I get off of it and then go into a flare and try to start it again, it may not be effective. She has never said this before. She KNEW I have wanted to stop that medicine from the get-go. Anybody have any experience with stopping and restarting it? I'd love to see some commentary on that.

All that said, I took a cold just before Christmas. It might have even been a flu strain, but I never went to the doctor because the fever was low-grade. (It sure FELT like the flu the first few days.) I know it takes me a longer time than most people to recover from an illness, so I stopped Methotrexate as soon as it began. The fever was gone after about 4 days, but the lingering cough and mucous production continues (though it does seem to get better each day and is almost cleared up now). I have not restarted the Methotrexate because I do not want it to interfere with recovering from this cold-whatever-it-is. I almost restarted it last night because I really am feeling a lot better but thought, no, I do not want to relapse. I woke this morning with a very congested head, so I'm confident not restarting was the right choice. So, I've been without the Methotrexate for 3 weeks now, and have had no noticeable change in inflammation or pain levels (even with some HORRIBLE cold and wet weather). I'm tempted to just not restart it even after I'm completely well from this cold.

The difference between us

One major difference in "just anybody's achy joints" and mine is that, "just anybody" can typically attribute their joint pain and/or stiffness to some activity. I can't do much in the way of activity that would cause that pain because my mobility is limited by the irreparable damage that this disease has already done. My joints don't all hurt all the time, but at least a few hurt all the time. Then there are nights like last night when no position could be found to keep me asleep for more than a few minutes without some joint - be it a knee, a shoulder, an elbow, a wrist, an ankle, or even digits - would scream out, "I don't think so! Try again!" And, there are mornings like this morning when, no matter how badly I want to get out of bed, my legs ache, sting, throb and burn so badly that I have to psyche myself up just to test my feet on the floor, hoping they will not resist carrying me into the next room. I feel like my body has done a triathlon, but the most active thing I did yesterday was a trip to a small grocery store where my child helped me carry out three bags of groceries. That should hardly warrant pain at all, and certainly not pain like this. Usually my mornings are better than my evenings, but apparently not always, and especially when they follow such a restless night.

Then, there's the weather. I guess that is something I have in common with "just anybody".  The humidity here is ridiculous. It's been cooler than usual for summertime, which I guess has its perks. The less rain and more heat, the better I do - so I tend to look forward to summertime because I do feel more mobile. This summer is killing me, though. Sure, it's nice to sit on the porch and enjoy a cool breeze, but when that is all I can do 'round here, it's a little more bitter than sweet.

Immunosuppressants

After fighting a losing battle against what started out as a simple head cold, three weeks and daily headaches, lungs and head nearly over-flowing with mucous, and pure exhaustion later, I went to the primary care physician. She diagnosed me with walking pneumonia. I am due to take both Humira and Methotrexate tomorrow, but my RA doc's office says not to take them until I am well. Thank goodness she didn't hospitalize me. Fingers crossed missing these meds (and being this sick) does not throw me into a flare. I have had 2 days in the past week that felt flarish - one evening in particular was pretty brutal. If this is what I'm trading RA pain for (a really really suppressed immune system), I'm not impressed. Being this sick for this long and not having a very promising recovery time SUCKS.

self-injection

I cannot physically do the Humira self-injection myself. It sucked getting it by the nurse. It also sucked even more when my husband just did it. It does seem to be helping with pain, though. (I was warned it could take much longer to see any positive result.) It's a huge dose, so I don't think a syringe is going to be any easier. I've bruised both times (but nothing compared to the ones still all over my lower legs from last week's fall), and it makes my heart pound hard and slow for a few minutes, and my vision blurs momentarily. This has happened both times, and both of those things could be a reaction to the shock and brief (<1 minute), intense, stinging pain of the shot itself. sigh.

Thank goodness I have Part D.

As someone on Medicare, I got to venture into the crazy world of Part D this past winter. Today, I received my first "Smart Summary" from the private healthcare insurer I chose to administer my Medicare Advantage Plan (which I pay for in addition to the Medicare Extra Help benefit I was awarded because we are poor enough to qualify). It was a 3 page, pastel-colored mailing with pie charts and breakdowns, laid out like a newsletter. It even has an index. Fancy. It covers a single month, January. Yes, I know it's March, but - clearly - these things take time. I picked up two prescriptions in January. They were both 90 day fills, which is the way I've been buying my prescriptions (online) for the past few years, however I had to use my local in-network pharmacy because I needed them too quickly to get set up with the preferred online pharmacy. I hate Walmart, so I'll just leave it at that.  Back to my fancy mail ... The first page has a pie chart explaining how much this plan should mean to me: what I paid ($5.20), what the MEH benefit paid ($22.99), what the insurance company paid ($1.47), and the insurance company discounts ($64.20), and this is equated to the Average Retail Price. In other words, $93.86 is what I would have paid without my savior, my insurance company.  Nevermind that last year, when I ordered those exact same prescriptions (online) and paid for them completely out of my pocket, I paid about $30. Remember, in addition to the Medicare premium I paid for January (about $100) and the $29 insurance premium I paid to save me money on prescriptions, I paid $5.20 at the pharmacy, and they paid One Dollar and Forty Seven Cents. Page 2 of this fancy newsletter breaks that down two more times, I guess to make sure I could see how beneficial it is for me to have this coverage. The remaining pages explain other helpful information, definitions of things like "total drug costs" (which was broken down no less than 4 times in the first couple of pages), and specifically a note that they currently are not making changes to their prescription coverage list that may or may not affect these two drugs I take (thanks for the heads up, because I'm not sure I could afford them without my beloved Part D).

end sarcasm

My insurance company that paid LESS THAN I DID for my prescriptions! This wasteful and offensive mailing is a picture perfect example of why the profit needs to be taken completely out of the healthcare system. Poof, gone. Like Canada. The insurance industry is corrupt and it's A SCAM, folks! While I *have* to pay for this because I asked for some help affording treatment for my chronic autoimmune disease (help I paid for all those years I could and did work), every bit of my diabetic 7-year-old's CRAZY EXPENSIVE healthcare maintenance is paid for by yours truly because she has a chronic autoimmune disease. Oh, and the drugs my doctor recommends that I should be taking ... not covered (and not affordable, which is why I asked for help in the first place). Fancy that. Universal Coverage For All. The End.