After 9 long painful months of following my insurances request to use DMARDS, I finally failed enough of them to be approved for Humira. The kicker is, the doctor told me not to fill my prescription yet until they are sure its safe for me to take it. I have been ill and off work since early July with a multitude of issues, I feel like an old clunker as soon as we get one thing fixed something else breaks down. I have never looked so forward to having a needle in my life but for now I will look at my new prescription while swallowing my plaquenil.
How frustrating, Easternlady. Did your doctor tell you what specifically s/he is concerned about for your safety?
Yes Janeatiu its very frustrating. Its kind of a long story but will try to do the short to the point version. Early this summer I developed pneumonia (common for me) I didn't respond to the treatments as I usually have previously. I was hospitalized for a bit and eventually they had to physically drain the fluid from my lungs. My lung x-rays didn't look so good even after my pneumonia was considered cleared up, but after further testing they showed up to be ok, I didn't feel better and upon further investigations it showed my pneumonia either came back or had still been there. During this time I had two separate heart "episodes" and was once again hospitalized. Eventually the pneumonia cleared up but I was still left with shortage of breath, wheezing, coughing, unexplained fevers, extreme fatigue and a pain in my left shoulder blade the doctor thought was a pulled muscle. A few weeks later I had a horrible crushing pain just below my sternum, the ER docs did several tests and due to my previous history said I was having lung spasms and that my heart was ok. I continued to have attacks of that pain but since I knew what it was, I wasn't so concerned about it. I get a call from my docs office that he wanted to see me, I go in and he tells me my liver enzymes are out of whack, so we do more blood work. Again they are out of whack so then I get an ultra sound. I just recently got my results back from that and it shows my liver is inflamed and enlarged and also my gallbladder is inflamed and has gallstones. Now they believe those attacks I am taking is from my gallbladder and I am being referred to a surgeon. While the specialist was checking me out last week she noticed the swelling on the right side of my neck and asked about it. I told her its been there for several months ( long before I got sick) and my family doc said it was TMJ. She appeared to be quite concerned while measuring it with her tape and then said she don't believe its TMJ and I am getting a CT Scan on the 17th of this month. I know I sound like the biggest hypochondriac, I have never known anyone to have so many different things wrong at the same time. I now believe there is a common denominator and am hoping they soon find out what it is so I can get back to my life, even my PsA life is much better than this one
Oh, BUMMER, Easternlady! But you know, I’m thinking there is a common denominator here too. Inflammation. And what could have caused that, I wonder?
Still, better safe … I hope your docs clear you for Humira soon.
Easternlady, I am sorry you are dealing with so much at once. I understand your frustration. There are certainly no judgements here. I do not think you sound like a hypochondriac. Many of us have struggled with getting a diagnosis or having issues dismissed only to have those issues persist. But it is a process. While we are acutely aware of any issue we are having, the doctors often need more to observe what is happening with us over time, to establish trends, to work through protocols. I know it is frustrating. I know it must seem like a step backwards at this point.
Your situation as you describe it is especially complex. You have the added challenges of these other issues and a complex history. It often helps me to take a step back, take a deep breath, and start with some simple questions. First, is progress being made? Well, in your case, Yes. You have just cleared a big hurdle and received approval from your insurance company for Humira. So you now have this new arrow in your quiver to do battle with this illness. But this new tool has the potential to harm you as much as help you. So it seems to me that your doctor is listening to you, is taking into account your unique issues, and in trying to navigate this complex landscape is exercising appropriate caution.
I am starting to learn that I have a tendency to sometimes latch on to a specific solution to the point that I lose sight of the original problem and as a result I ask the wrong questions which drags out the process. For example, if I were in your situation, I might fixate on a biologic and then ask my doctor why can't I start my biologic. While that is a valid question, I am making an unspoken assumption about what that biologic might do for me. I have asked the question so narrowly that the most likely response is a quick explanation as to why I cannot take the biologic at this time. I might interpret that response as there is no solution to my problem. That is certainly discouraging. But my original question did't get to the root issue that I was hoping the biologic would solve, what is currently bothering me. So I am learning to ask myself what am I expecting. What issues are troubling me most? How is the issue affecting me? I then ask the question in a larger context. For example, I might say I am having a lot of neck pain & not getting much sleep and was really hoping the biologic would offer some relief, so if the biologic is not a current option what is? This, at least, opens up a larger dialog that prompts my doctor to discuss other options. I have to make an effort to do this, especially on my worst days. So definitely talk to your doctor about your larger concerns. You doctor has some plan and should be willing to map that out for you. I know it is tough when you are frustrated and discouraged.
And for what it is worth, you are not an old clunker ... you're a classic ;) I hope you find some relief.
Woah--what a tricky situation. Interesting about the pains in your sternum. That's a really common type of pain for PsA sufferers. Clearly your doctor thinks you have something going on with your gall bladder. For me, though, this pain was from enthesitis which is pretty common for folks like us. Kind of feels like you're being stabbed with a sharp stabby pointy thing, especially when you take a deep breath. You can get it anywhere there are attachment points but my body seems to favor my sternum and my upper back, near my shoulder blade. Yowzer!
Well, good luck getting through all the tests and hopefully you'll get good enough liver tests to allow for the biologic. If it's not one thing...
For what it is worth this old nurse is kind of pleased with the thoroughness of your physicians. It would be easy to assume all of these problems would ease up with a biologic turning down the inflammation. And I do believe that is what will happen but the stakes are too high. If this were cardiac and or pulmonary the bet could cost your life. I know it is frustrating but I am so glad your doctors are good and you are off work. I will say a prayer that with rest and good medical care you will be around for a long time.
You wouldn’t want to take Humira if you SLE or MS. Some of the symptoms can be the same and not worth the risk…
Thank you everyone for your kind words and words of wisdom. I didn't want to mislead anyone to think I was frustrated about not being able to take Humira at this time. What is frustrating to me is still not knowing what is causing my illness, that said I realize that my doctors are doing all they can to find out what is happening with my body and I am grateful for that and will have patience with them and myself while we continue with the tests. PsA has affected my extremities and I had become fairly use to that pain but my core was intact. This past several months the PsA has continued to attack my extremities but now my core feels broken. Its a different life for me going from working full time hours as a cake decorator/baker to struggling to find energy to take a shower, the unknown scares the hell out of me. Getting approved for Humira is a huge victory even if I cant use it right now, its still a victory and it feels good. On the bright side my sister in law came to visit me today and she painted my finger nails with the coolest design, I feel like crap but got rock'n nails!
Don’t worry about winning the war. Just focus on today’s battle. And given your final comment, I would say today’s victory is all yours (with a fantastic assist from your S.I.L).
I feel like crap but got rock’n nails!