Just when I thought I was going to sleep … a rant took over my brain … because this afternoon for the third time this week someone told me that I probably have celiac disease & that it’s probably the source of my RA. And that going gluten-free will make me well. Oooooh-kaaaaay …
I have been told about this connection (usually preceded by “I don’t know if you’ve ever heard this before, but ….”) more times than I can count. And nearly as many times as someone has suggested that dark cherry juice will also be the “solution I need.” At this point I have already had 2 blood tests with negative results. I have absolutely no celiac or early celiac symptoms. And truthfully, my c-reactive protein and ESR numbers are quite low!
Even so, I am now seriously considering spending $300+ on DNA testing and attaching results for that plus the two blood tests to my chest with a safety pin. Just to get people to shut the heck up about “solving” my “problem” when they aren’t qualified or knowledgable.
I just don’t buy celiac disease as a cause for RA. But I do know one person with RA whose inflammation has improved from being gluten-free.
Maybe I will spend 2-3 weeks gluten-free because it certainly can’t hurt. I have been 80-90% gluten-free for a month before – but this was before my symptoms became active. I lost weight and felt terrific, but who knows whether that means it would influence my symptoms.
Or maybe I will just keep doing what I’m doing. It’s working so far and I’m happy. Now all I have to do is fall back to sleep …Read More
Sometimes it pays not to take “no” for an answer. Especially when the “no” comes from one of your medical treatment team.
I have had pretty decent results from the Plaquenil and MTX. But maybe it’s the Type A personality inside me … I’d like even more results and any reduction in long-term damage I can get. So I’ve been preparing to start a biologic drug. First we did the TB skin test and the necessary blood tests — all negative. I researched and made the decision to go with Humira.
And then the rheumatologist said he didn’t think we should submit the paperwork to my health insurance. Once I picked my chin up off the floor (surprised much?), I got my pushy self going. I had a list of why we should move forward with a biologic drug — all the things that would bring me closer to the old normal life. They sure made sense to me.
The reason why we shouldn’t submit? Because my rheumy just didn’t think the health insurance company would approve this medicine for me. My response? We’ll never know unless we try. No one will punish me for trying and getting rejected. And I just have to know where I stand.
He asked me to wait until my next appointment (6 weeks away). And in the meantime his staff would work on the situation with the health insurer. Sounded like a fair plan to me, so I agreed.
Would you believe this? Four weeks later, and it turns out my health insurance doesn’t require pre-approval for Humira! So what would have happened if I hadn’t been that pushy patient? I would have missed out the opportunity to take a medicine that has a lot of potential to help. I don’t know about you, but if I hadn’t pushed I also would have been sorely pissed to find out later that I could have been taking the medicine all along.
So the first shipment of Humira arrives this week. Thank goodness I’m not afraid of needles!
~~ Would appreciate any hints / tips / tricks though ~~Read More
Y’know back in the day … the most intense medication I had in my cabinet was OTC NSAIDs or some cold medicine. There were a lot of vitamins and minerals around the house … and I took them regularly. These days … it’s a whole different story!
One Rx NSAID and two DMARDs later (and Rx vitamin too) I have one more decision to make. My rheumatologist believes in treating this (luscious) RA aggressively and I agree with him. So we are going to add a biologic on top of everything else. But which biologic is now the big question?
I have to consider my health insurance company’s tiered formulary, because a biologic moves out of the Tier 1 drugs I now take. The rheumy suggested one drug that’s in Tier 2 and another that’s in Tier 3. And two more that aren’t in the formulary at all. Picking my battles, I feel like I should start with the Tier 2 drug … considering it’s more likely to be approved.
Tier 2 drug: Humira
Tier 3 drug: Enbrel
Non-formulary: Orencia or Remicade
I’m also looking at some of the practicalities of my life. I’m not needle-phobic although I’ve never had to inject anyone else much less myself. So maybe an injectable would be okay. If I can’t do the injections, then my husband will be another option. Although he swears he could never do it … and I tend to believe him! I also like that Humira is bi-weekly or weekly.
At 45 I still have good veins in hands/arms. So it wouldn’t be hard to do infusions, but why start there yet? I also know that I don’t sit still very well unless I’m completely exhausted. So the idea of sitting for an infusion doesn’t seem like a lot of fun. I’m also a small-business owner and making money depends on my presence. So that’s another nail in the infusion coffin.
I’m really leaning towards Humira, despite all the dire warnings and possibilities of major side effects. There isn’t a single biologic that doesn’t have similar warnings. Additionally, I have read some very positive reviews of how much it has helped RA patients. And the alternative of joint damage just isn’t an option I’m willing to take lightly.
If you were in my shoes (what you know of them), what would you do? Thanks!Read More
They say that nothing is ever simple. And that’s been the story of the last couple of Sundays (my MTX day) for me. Sunday of Week 4 was pretty good … if you don’t count the two feet of snow that fell the day before. Sunday of Week 5 was pretty nasty … but not really because of the MTX.
I’m still finding that the ginger nearly eliminates the nausea. And that MTX makes me a bit more tired than usual.
But the biggest lesson over the last two weeks has been what my limits are. The snowstorms of February 2010 taught me that I may be able to do something I used to do (like shovel snow for an hour), but that the price I will pay is a steep one. And because I work in a business where happy clients are essential to my livelihood, it’s been a challenge to figure out how to reschedule people and not hurt myself even further.
I have had alternating days of great accomplishment and productivity. Followed almost immediately by days of incredible fatigue and frustration. But somehow this still feels like an improvement.
Last summer when the RA hit my life with full force, I had a very simple rule. Do only what is necessary and take it very slow. My main symptom was overwhelming fatigue. I did have some joint pain, but it was 20% of the issue while fatigue was 80%.
Then when I began to take medicines for the RA, the rules changed. The fatigue levels are improving markedly, and actually that is making it harder. I find that I can do more, but that this is making the pain levels go up quite a bit. So, the new rule seems to be do whatever I can one day but don’t forget I will pay for it the next day with exhaustion and discomfort. And if I go really nuts, I WILL be in pain.
My big challenge seems to be finding a balance of accomplishment and recovery. MTX day / Sunday seems to fit well as a recovery day. However, I clearly need more than one recovery day in the week. This is a very new concept for me … and one that will be another part of this luscious journey.Read More