One problem that can go hand in hand with several different diseases that are covered under the spectrum of arthritis is Raynaud's Phenomenon. Raynaud's is an over-reaction to the cold. The blood vessels constrict from simple things like being in air conditioning or holding a cold glass of water. The classic signs are the color draining out of the affected hand (or foot, nose, or ear) which turns the area bright white, then turning purple or blue as blood starts to fill in, then red as the blood comes rushing back in. It is painful, prickly, tingly, and causes numbness. There is primary Raynaud’s, in which case there are no other conditions, and there is secondary Raynaud’s- caused by some other disease such as Scleroderma, Mixed Connective Tissue Disease, and also found to be related somehow to Dermatomyositis. Secondary is generally considered to be more severe than primary. The best link that I have found to explain it is The National Heart, Lung, & Blood Institute. Also, The Raynaud's Association is a great place to find support and info.
It was only one year ago this month that my daughter was suffering a great deal from her Raynaud's Phenomenon. Her doctor at the time decided that she was too young for medicine, and that we could control it by keeping her core warm. We would pack her off daily in the winter with two T-shirts, a warm long sleeved shirt, jeans, mittens, and a very heavy winter coat. One would assume that would be enough for a sunny Florida winter, but not the case for my child. It was when she developed frostbite at school that I truly began to panic. This was a life changing disease for her. No longer could my sweet little princess wear her cute little dresses and skirts that she loved so much. Instead, we were piling as much extra clothing on her as possible, but it was never enough. Her school actually made a drill based off of an idea that my hubby had. He would take a sock, fill it with rice, and microwave it for a few seconds to a minute, depending on the size of the sock. The school had several of these socks, and they placed them strategically around the school. Whenever she had a particularly bad episode, they would run for the socks. I worried daily about frostbite, and the possibility of her losing her fingers because she tried to ignore it. The springtime wasn't as severe, but still she continued to have many episodes even when it was 85F outside. And still her doctor didn't think that she needed medication. Our new doctors gave her a prescription for a Calcium Channel Blocker just before the end of December. Even as a child that doesn't like to take medicines, she was afraid of what a cold winter would bring, and she requested it. I can't say that she hasn't had an episode since, but she has certainly had far less. In fact, I have only seen one. Today she can walk around the house in a nightgown or skirt without fear. We can go outside on a cold day without fearing the worst. Yes, she still gets much colder than other people, and she can’t warm back up that well, but it isn’t like it was. For that, I am very grateful. Her current doctors call her case of Raynaud's "significant". They could tell from a mile away that she had problems with it. Medication was the best decision that we could have made for her. Perhaps it wouldn't be the best course for everyone, but for us it has made a huge mountain look like a small hill.
With this time of year also comes bronchitis. I thought that we had her on enough preventatives to keep her under control, but I suppose that wasn’t a very realistic thought. She went to the doctor on Wednesday, but we plan on taking her back tomorrow. To complicate matters even more, she is due for her Remicade infusion on Tuesday! Remicade is an immune suppressor, so if she still has an infection it would be very detrimental. Since we have to drive 2 hours away for it… I’d like her pedi to clear her. This is her current medication list, with the bronchitis meds being the first 6.
Emily’s current meds as of January 30, 2011
Zithromyacin- 200MGs once daily
Singulair- 5MGs daily
Flovent- 44mcgs twice daily
Ventolin- Every 4-6 hours
Veramyst- One squirt each nostril nightly
Benadryl- 1.5 tsps (On request for congestion & cough at night)
Prednisolone- Take 18MG in the morning
Prilosec (Omeprazole) ONE capsule once daily
Meloxicam- 5 MLS (1 tsp) nightly
Nifedipine ER 30MG- One pill once daily
Xyzal- 5MG once nightly
Methotrexate- .5 Sub-Q once weekly
Leucovorin- 1 pill weekly 24 hours after MTX
Miralax- ½ Cap nightlyMulti-Vitamin
Remicade- Once monthly
Solu-Medrol- Once Monthly
17 meds. Now doesn’t that look like a good time? Poor kid takes more medicine in than food or drink, I think. This is what having an autoimmune disease does. And remember folks- she’s only 9. I'll post tomorrow after work about what her pedi says, or Tuesday after her appointment if she is cleared. Keep us in your prayers!
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