August 23, 2014

Thoughts before an important appointment

On Tuesday I see my rheumatologist again and it's a pretty big deal.  I've failed the first four medications we've tried, though I prefer to say they failed me, and thus have exhausted the category of medications which suppress the immune system.  The next option is a biologic pharmaceutical, which are grown rather than chemically produced.  These are proteins or antibodies which the body normally produces, and will hopefully kick my immune system's ass.

Last week I had a vivid dream that the appointment did not go well.  Dream logic stole in and took my voice, then abruptly transitioned to out in the hall with the appointment over.  The conclusion: two more months of the current unsuccessful med, which sounds like more purgatory than I can take.  It was scary enough to wake me up.

I'm also worried about how long it will take for insurance approval.  Biologics are expensive, around $20,000 per year.  While I meet the criteria on paper, getting actual approval is always more difficult and time consuming.  After that, weekly injections sound easy!

The weekend I've had fatigue so thick that standing feels more like climbing Everest.  Here's hoping that the appointment goes well, I get a new helpful med soon, and can start getting my life back.

1 comment:

  1. Summer, I hope your appointment goes well for you. Be sure to take your list of questions with you and ask about side effects of any medications you will be given as the biologics also do have side effects. My old rheumatologist put me on Remicade but I actually felt terrible on it; after the first infusion I thought I had just contracted the flu, but after the same thing happened after the second infusion I knew that it was the medication. He tried to get me to take steroids prior to the infusions to help mitigate the side effects, but there was no way I was going to pay him that much money for that type of misery with no sizeable benefit. Needless to say, I ended up going to a new doctor.

    I know this isn’t what you want to hear (at least most people don’t), but my rheumatoid arthritis has responded really well to dietary changes. I have no experience with psoriatic arthritis, but if you think about it, something is triggering your autoimmune response with the PA just like I have triggers for my RA, and if you can figure out what that is and avoid it, you will feel so much better. For me I have to avoid the nightshade vegetables (white potatoes, tomatoes, all peppers except black pepper, eggplant and tobacco) and for some reason tapioca, pineapple, and bananas also bother me. I know some people who have had success avoiding dairy. It took me three months avoiding the nightshade vegetables before I saw any measurable results, but at the time I was in so much pain I was willing to try anything. And the diet was soooooooo worth it! I still have symptoms occasionally especially when I don’t get enough sleep or am very stressed, but for the most part I can manage without any DMARD’s.

    Also are you treating your arthritis with food? Ginger and onions are both really great anti-inflammatory foods. When I developed gastroparesis, I had to give up even NSAID’s and was shocked at how well I did without them, until I realized that the ginger I was drinking every day for my stomach was a great anti-inflammatory. I also ate a lot of onions and had to give up high carbohydrate foods because of my digestive issues, and my RA was totally nonexistent for a while until my digestive tract was well enough for me to add carbohydrates back into my diet, then the stiffness and pain came back. This makes me wonder if carbohydrates don’t play a part in the autoimmune response as well.

    I have found that there is no one right thing to do but it takes a whole bunch of things working together to keep me well. I try to get enough sleep, try to stay as stress-free as possible (I know that is not easy!!), watch my diet carefully, get as much exercise as I can, and use medications respectfully.

    I would encourage you to keep a daily journal of your food, activities & symptoms and look for patterns. Some foods don’t bother me immediately so having this listed in one place proved invaluable for me. I think if you can do some things to help yourself, it won’t make you feel so dependent on your doctor. And it seems like your dream is indicating that you might be feeling that way as if everything depends on her and you have no “voice” in the matter. I experienced this with my gastroenterologists so I know how frustrated you can get with health care professionals who get to go home after their work each day and don’t actually have to live with your disease 24/7 like you do.

    Feel free to email me (nwoods70 at gmail dot com) if you would like to talk. I have had RA for 25 years and suffered horribly before finding a diet that helped me so I know how discouraging the whole process can be and all the sacrifices and grieving that goes along with it. There are benefits to the disease too, as it will make you a much more compassionate person and make you appreciate things in life that most people take for granted.

    I’ll be praying for your visit tomorrow that God will give your doctor wisdom, skill, and compassion so she can find a way to help you.
    Nadine in NC


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