The ol’ Humiradventure has been kind of on the back burner for the last month due to more pressing health issues. That goes for Trexin as well. I had to abruptly quit all my RA drugs while I was on antibiotics fighting that icky strep infection in my foot. I’m glad that I haven’t really flared up a lot but would like to get the hell back on Humira and Methotrexate before my next punishing flare up. I’ve used the prednisone a few times as well as the prescription strength ibuprofen my Rheumatologist gave me to hold me while I was off the other stuff. Hasn’t been that bad, but it always comes out of nowhere so I feel like I’ve sufficiently tested the waters.
Mostly I’ve been okay, but my wrists continue to be my main problem joints as far as pain and swelling. Sometimes it overlaps with tendonitis which is no fun at all. A big part of why I’ve been okay is probably because I haven’t been working and getting wiped out every day. I’m sure that’s on the way 😉
The Doctor who’s taking care of my foot said I should be able to get back on my meds in one more week. I just hope they still work.
I’m still highly concerned about my insurance and the future thereof. All I can do is sit and wait like everyone else. I talked to my Internist about my worries regarding this when I saw him yesterday. He said that most of my meds are relatively cheap and there are patient assistance programs available from the drug companies for those that are not. He said I may have to do less appointments for a while but the jist of what he told me is to not panic and do not just give up on my meds. Insurance or not, I really like all my current Doctors and would like to keep seeing them.
I just got everything finally straightened out with treating my various physical and mental health problems after several frantic years. I’m not losing it without a fight.
May your team win-
Truly I am. The response to my Gofundme page has been amazing. Since Saturday I’ve gotten three quarters of the way to my goal. It’s really incredible the way friends and family have stepped up to help me through this difficult time.
I saw the Foot Surgeon Monday and she said I’m looking at about another month of recovery and healing. I’m chomping at the bit to go back to work but it’ll have to wait a few more weeks while my foot heals up where the abcess was drained.
I’m really touched that so many people thought of me. Even with my insurance this still ended up costing me a pretty penny and I’m overjoyed that I don’t really need to agonize about much outside of getting better.
I’m still off my RA meds while I’m finishing up the antibiotics, so all I can do about that is ibuprofen and the occasional prednisone. Even the prednisone I’m being sparing with as it can inhibit healing. Thankfully I haven’t been flaring up too much lately. That, and my darling Shannon has been so amazing and accommodating throughout this process. I’ll be alright, just gotta stay focused and be patient.
To everyone who donated or shared the link, thank you so very much from the bottom of my heart.
PS: One more share for luck:
I’m in a pretty pleasant mood right now. Not long ago I got off the phone with CVS Caremark Specialty Pharmacy. Seems that my Prior Authorization paperwork for Humira has been officially approved. I’ve gotten everything set up with shipping and should have my first shipment Tuesday afternoon. So yeah, happy dance and whatnot.
I’m feeling a bit more relaxed about Christmas and my lack of much shopping ability this year. I’m going to do something for the ones I love, it just may be a bit basic. Anyhow, getting the business with Humira sorted out is a major load off my mind. I’m trying to STFU, chill and enjoy the season and one of my major stressors is now all good.
Not much else is happening, having a bit of inflammation still as I’m only on a starting dose of methotrexate and haven’t gotten to the therapeutic range yet. Doing much better still than I was a few weeks ago. I’m staying off the prednisone and haven’t had any in two weeks.
Not much else to report, except that I may have something up my sleeve writing-wise.
We shall see.
Be well –
As much of a handle I’ve gotten on things, I find a lot of the same issues plaguing me. I’m worried about losing affordable insurance now that the ACA is on the chopping block. I’m not saying I’m a huge fan of obamacare, but I got the best possible deal out of it personally. I have a tax credit that allows me to get a silver plan with zero deductible and killer drug coverage.
It has been the recurring struggle of my life, staying insured as a person with less than perfect health both physically and mentally. I have been really nervous lately about what’s going to happen to myself and the ten million or so others who bought coverage through the marketplace. Nothing right away, but Florida is really tight with Medicaid so I’m not sure what I’ll do.
I’m really scared because joint damage can occur in the early years of RA if left unmedicated. Aside from squirreling away DMARDS for the gaps there’s not a whole lot I can do. There are patient assistance programs available but all that stuff takes time.
There are other issues recurring but the prospect of losing my insurance is the paramount concern right now. I need to have some kind of plan to make sure I at least have my psych drugs so I can focus on getting the other meds without losing my head. Fortunately I have at least a few months of backup of my psych drugs because I’m used to shit going bad and I stay vigilant with my crazy.
That’s all for now. I’m nervous and in pain. C’est la vie.
My Doctor is apparently a pretty determined fellow. He’s tossed me two more sample pens and has reinitiated the process of getting the med approved by Florida Blue. I guess doctors take it kind of personally when insurance companies tell them what they can and can’t do. I’m just ecstatic that I’m going back on the stuff as it has proven itself more than worthy. My Mom picked up the pens today while I was at work and will be by with them in a few minutes.
After a painful ten days without today is officially Humira day 🙂 Maybe now I can leave alone what’s left of my prednisone reserve for a rainy day. I must dash now as I have to prepare to shoot myself up with some primo biotechnology. Toodles!
Gratefully yours –
I’m fresh from my latest appointment with some cautious optimism. My Doctor basically confirmed what I already knew, that I was getting some swelling and inflammation since Humira was stopped. He seems pretty confident that he can get it pushed through now. We shall see I guess.
He told me not to bother with the Plaquenil, said it was the insurance company’s call, not his. He actually said ‘I didn’t prescribe it because I was sure that it wouldn’t work. ‘. Well then. He said if I’m still hurting when I see him again he’ll switch the Arava with something else but he wants to give it a bit more time to work before he writes it off.
In the meantime, he told me that I can do short bursts of prednisone as needed. He just told me to avoid taking it regularly. Still useful to have in a bad flare.
So let’s recap: Plaquenil is not needed, Arava has a bit more time to prove itself and the well established Humira should be restored within a week if all goes well.
I’m not trying to be a complainy-pants. I’m grateful for the fact that I’m finally being treated, even if there is quite a bit of trial and error. Still taking ibuprofen when I start throbbing, but trying to keep the dose low.
Morning stiffness has been a bigger issue since the Humira got cut off as well. I’m really hoping that it gets processed this time because I was feeling freaking awesome there for a bit and would like to re-capture it.
I’m going to sign off now, but I do so with an air of optimism and hope.
Fare thee well-
I have today off from work as well as tomorrow. This fortunately coincided perfectly with today being Humira day. I haven’t noticed much in the way of ill effects, outside of one thing. After the first round I woke up the following day feeling REALLY strange. I can’t really describe it beyond that.
I just got home from about a two and a half hour bus trek to acquire this week’s Humira Pen from the Rheumatologist’s fridge. Did my shot on the left side of my belly with no trouble. It did sting a bit, but that’s only noteworthy because generally speaking I barely feel it.
I’m feeling some definite relief from my current meds (Arava and Humira ). I’ve not needed prednisone since I was in Alaska. Since I started the injections I haven’t been taking ibuprofen at all which is great for me, one less thing stressing my liver. I’ve been watching the news about obamacare with some nervous agitation. My plan appears to be safe for now but my premium is probably going up. I’m glad my plan is as good as it is. It’s so worth it not having an HMO.
As I mentioned, I haven’t noticed any real issue with the Humira, though it could take a long time to really kick in. I dunno, I’m pretty resilient when it comes to putting up with medications and side effects as a general rule. A few meds have really rubbed me the wrong way but most I used without issue. I’m not really worried, as long as I stay vigilant with blood work I’m all good.
The thing that concerns me now is avoiding getting sick or infected. The drugs I take for RA are immune suppressants so there is an increased risk for fungal and or opportunistic infections. I’ve already gotten a flu shot and am going to ask my Doctor about the pneumonia vaccine. Last year I wasn’t on anything for RA and I got a respiratory infection that lasted six weeks and made me miss my Sister’s wedding.
Anyhow, not hurting too badly and enjoying life today. I’m not trying to be paranoid about getting sick, just being realistic and taking precautions.
Chance favors the prepared mind and all.
Back at my old job on the beach. My brief foray into other employment was lousy and fairly non-lucrative. I’m just lucky I texted my old boss when I did. This kid at my work was my main competitor for bussing shifts and he serves now. I just happened to come back to my beach job just in time to swiftly grab the lion’s share of the daytime shifts. Honestly that’s the only reason I left in the first place was that I wasn’t making the money. I had a bit of a hypomanic depressive episode while I was away from the beach and I’m glad to be back up to par.
I’m not sure what is happening with Humira still save for it being in the appeal stage. I’m going to keep getting sample pens until I get cut off because why not? I’m doing my injection some time tomorrow afternoon and I will see what my Rheumatologist might know about this in a few weeks.
My pain level has been relatively low since starting the Humira. Some flaring up day to day is perfectly normal as my hands are crazy busy all day, but the pain hasn’t been lingering after work much lately. The combination of Arava and Humira is effective enough that I haven’t been taking much else for a while.
As far as morning stiffness it’s usually fairly brief but intense. I’m doing alright as far as my hands, but my feet have been giving me some hell lately. My metatarsals in both ankles have been pretty sore, especially when I climb stairs or walk uphill. People think RA is all about the hands but it has effects on the entire body including the feet.
I’m bumming a ride to my Rheumatologist’s office tomorrow from my best friend Matt. I have not seen a whole lot of him lately and am looking forward to catching up with him. Nothing says ‘Let’s Hang out ‘ like picking up a round of injectable biotechnology. Whatever. I laughed.
Aside from that, I’m calm lately. Calmer than I’ve been in ages. Things are relatively good right now. I don’t miss Facebook, that’s for sure. I no longer care about all the fuss. I have my books, my music, my sewing and some freaking peace of mind. Sweet, that.
I have the next two days to do whatever the hell my heart desires. I mean, I gotta do up my shot but that’s quick and easy. I think I’m going to surprise my Man with some sort of tasteful dinner. Yes, we eat more than tacos and burritos and quesadillas. Honest. I’m thinking maybe a really killer stir-fry. I’m doing this. Oh ja.
Until we meet again,
Humira has been officially denied. Gotta try and fail more old-school DMARDs before they(Florida Blue ) are willing to pay for it. Which leads to the most likely next options : methotrexate(most likely ) sulfasalazine (less likely ), plaquenil (less likely and not used a lot due to messing with vision.
I’m not surprised, but whatever… those are the breaks. Methotrexate plus my other med Arava is supposed to be a kickass combination. It’s just that it’s a chemotherapy drug and pretty much wipes you out the next day but oh freaking well heh heh heh.
I’m just going to have to have a dedicated day off each week to recover from the Trex. That is if my Doctor uses it. I have no idea what his plan is. It just irks me that the Humira got denied because I was feeling some relief after two injections. But still, I kind of won because I got a Scot free month of a super expensive medication.
So, moving on ah s’pose. I had my meds adjusted recently and am feeling better for it. Bit more of the Wellbutrin and recommendations to follow up with my Psychologist. Alrighty then.
In my twenties my big problem was Mania and impulsive behavior and all that stereotypical bipolar stuff. I’ve been on a maintenance dose of Risperdal for a few years now and it appears to be holding. Except for… depression. That still burns pretty hard. It’s better since I started the Wellbutrin but still somewhat troubling.
Tonight I’m just kicking back before my work week begins. I leave you now to resume this.
That’s pretty much the story of the now for Thom. Trying to get a Prior Authorization pushed through before my next injection is due. I’m just hoping that my Rheumatologist has a way with words. Essentially the insurance company is sending him paperwork asking him to explain why it has to be humira and not something else. I’m already on Leflunomide (Arava) and my Doctor doesn’t seem to be much of a fan of the old school DMARD drugs. My big worry is that the Insurance is going to dictate that I have to try and fail with methotrexate first. Humira and biologics in general are a bit scary with the potential side effects but I’m not really hot on the idea of using chemo drugs, regardless of dose level.
That said, things are going reasonably well. It’s kind of crunch time getting the next Humira Pens by my dose date but I have some help with navigating this process. AbbVie (company that makes Humira ) sent a Nurse Ambassador to my house today to walk me through getting insurance stuff pushed through and getting the Patient Assistance program rolling. I’m already confident that I have the subcutaneous injection thing down but she will be coming by again next week when this is hopefully sorted to make sure. I’ve never used a specialty pharmacy or anything before so having this lady around is pretty helpful. If the insurance people drag ass I may have to see about getting a sample pen for my dose next week.
I just hope this doesn’t end up being fruitless. I’m not crazy about the idea of trying a bunch of ancient meds before they let my Doctor freaking use what he wants.
Insurance is a special kind of fuckery, eh?