Little excitement today

Well, sort of exciting.

I have had this rash on my back for the past week or so. The hubby has said it is getting worse and I need to call my rheumy to make sure it is not an allergic reaction to my last infusion.

I call my dr and talk to the nurse. Told her what was going on and she said she will give the message to my rheumy and he will call me back.

Not even 5 minutes later, he calls me back wanting to see me in an hour. I so didn't want to have an allergic reaction to this medication because I believe it is working. I mean, I did manage to shuck a few dozen ears of corn yesterday and then cut the kernels off the cobs tonight.

I get to my appointment and my rheumy takes a look at my rash. He said it is not a rash of an allergic reaction. Whew! Thank God for that!

However, it looks like a shingles rash. Joy of joys! Just what I need. I is really itchy and it burns. I do not feel any pain however, but my Tramadol ER could be masking that up. At least I know the pain meds are working. last thing I need is to be in even more pain. Between my fibro and RA, I have enough pain to deal with.

My rheumy gives me a prescription for some medication to calm the shingles down. My understanding is it will always be in my body and it could flare. With my immune system soo suppressed between the methotrexate and the Actemra, the shingles decided to rear its ugly head and join the party. So now I have these huge horse pills that I have to take 5 times a day for the next week. As if I needed more pills to take. Grrrrrr. Oh well.

Not feeling so good

So, yesterday was my first Actemra infusion. I have had many infusions before, but this was a new medicine.

I came home from my appointment and went in and laid down in my room. I started to nod off a little and my body started to feel very heavy. It took some effort to life my arms and even keep my eyes open. When Steve came home from work, he came in to check on me. That was when I really noticed I was "heavy". I did get out of bed and was feeling okay otherwise.

Today I have a headache. Nothing bad like the migraines I use to get, but it is still annoying. One of the side effects is a headache though, so no worries there. It did take me a bit to get out of bed today. More so than normal. I figure it is just because of the medication I had yesterday. I have always been tired after having my infusions anyway.

Matt and I ran a couple of errands today and stopped at Subway to get a late lunch. Now, I am back in bed, really sore (my lower back and hips have been hurting me all day), and watching tv. I hope I feel more normal tomorrow. I have to do my food shopping then.

My first Actemra Infusion

After fighting with my insurance for a few weeks, they finally approved the new infusion medication. Today was that appointment. It couldn't have come soon enough. I was a few weeks over due from the last Remicade infusion and that one started to wear off a couple of weeks before my next one was due.

My appointment was for 12:30. I am use to having my appointments at 8:30 in the morning. I tend to sleep through them as well. The Remicade infusions last 3 hours, where the Actemra lasts a little over an hour. Soo much nicer.

I get to the infusion center in the hospital and in my chair and my nurse, Cindy, gets me all hooked up to the IV and starts the saline drip. Normally when Cindy puts the IV needle in my hand, it doesn't hurt, just feels odd while she moves it in my vein. Today it really hurt. It wasn't her fault, it is just my body being stupid. My fibro has been bothering me lately, so I figured that was the reason for the pain.

Cindy goes over the new meds and the process and such. She said that mixing the Actemra was a lot faster than mixing the Remicade. Well, she wishes she never said that. It took about an hour to get the meds. There was a question about the dosage because I lost weight since my last infusion (I am now 173 lbs). Once that gets all figured out, the meds showed up sometime after.

I had my iphone with me as well as a magazine to help pass the time. I read a little and played Candy Crush and solitaire on the phone. I did get tired and wanted to take a little nap, but I knew I wasn't going to be there that long, so I never did.

Once the infusion was over, I had to wait 15 more minutes to make sure I had no reaction. I only had to do this today, because it is a new medicine to me. All the future Actemra infusions I won't have to wait. I had no reactions, but I do have a headache now. I just think I am dehydrated though. I am also super tired, but that is because of the lack of sleep I have been getting. Getting old sucks. Oh well.

Very informative segment on The Doctors TV show

I don't normally watch this show, but a member of the Squeaky Joints group posted this little segment of the show. It is all about Rheumatoid and Osteoarthritis. I found it very wonderful and not telling us about any "cures" for it (like on Dr. Oz). It tells it like it is.

Arthritis segment on The Doctors


Oh and by the way, there is not cure for Rheumatoid Arthritis. But if you are reading this blog, than you probably already knew that.

Finally!

My insurance finally approved my Actemra infusion. Took a couple of weeks. Just made my appointment for Monday. It's later than I would want (at noon instead of early am), but I don't care. I am sooo ready for this. Been so sore recently. I am praying that this is the medicine that works for me and maybe put me into remission. That would be the best day ever.

So frustrated with my insurance company

I got a letter a few weeks ago from my insurance company saying that they have denied the Actemra infusions saying that they are not medically necessary. Of course seeing that in writing, pissed me off big time. I went on a tangent.

Apparently my rheumy knew about it a week or so before me and they have already started the appeal process. They have provided Cigna (my insurance) all my medical info that shows how none of the medicines I have been on work for very long, if at all. It has been about 3 weeks and we still have not herd a nay or yay.

So, right now, I am just on methotrexate and tramadol. I am very sore and very tired all the time. Thankfully the pain medicine does take most of my pain away, just not all of it. It hurts to walk, my hips are always hurting and my fingers are stiff and swollen pretty much all day. The Remicade did do a little for me, because I am hurting more than before when I was on it.

Today's Rheumatologist appointment 7/15

You know when your rheumy calls himself a couple of hours after getting blood work done, that it is bad.

At my appointment we talked about stopping Remicade and starting Actemera. Fine with me. The Remicade has stopped working anyway. When I had the Vetra DA test done, the part of my inflammation that was raised, the Actemera blocks, so it makes sense to go on it. Only issue is, Actemera raises your cholesterol levels.

Last year my total cholesterol was 164. Today it was a little over 200. Ugg. I have been eating better, or so I thought, and exercising more. Walking and working in the garden is what I do for exercise right now. Been thinking of adding gentle yoga into my daily schedule. I had done yoga for years when Matt was younger, but life got busy. You know how it is.

My rheumy also said that my inflammation markers were higher than last time. Like I didn't already know that. I can feel it in all my joints and muscles. Granted the muscle pain is my fibro, but when I am having an RA fare, my fibro likes to kick in too. Double whammy of pain. Fun times.

So, today I got two new pills to take. One to keep my cholesterol down and one to help with my nausea and heart burn. That's a total of ten pills to take on Mondays and 9 pills to take daily the rest of the week Man getting old stinks. Who knew that 36 was old? I am getting sick to my stomach just thinking about this.