Rheumatology Update

On Thursday I saw my favorite Rheumy Dr. R for my monthly check up. Last month I saw her right before my Actemra infusion, this month I saw her after my Actemra infusion. She like me is amazed and what a difference the infusions have on me! Its crazy, in a good way. Speaking of infusions we talked A LOT about them and how we LOVE IT but also how hard it is on me. Its hard because I get them every four weeks and the last week is a slow decline for me meaning- my symptoms get worse and worse as the day comes for my treatment.  We talked about the possibility of changing the length int between treatments and this is what we are going to try... This next treatment will be three weeks from the last, partially because of the holiday and partially because we want to see what will happen. I will then see her four days after my treatment. We think we then move the treatments to every 25 days instead of every 28 to see how that helps. Things that we will need to watch my blood work and track symptoms during these new trials to see if they make in a difference in how I feel. WE know we like the drug but now need to work on the timing of it.

As most people know my veins SUCK and I have an AWFUL time anytime I need my infusion or anytime the ER/hospital needs a IV i have problems. When at the infusion center I talked with the nurse and a patient about what is is like to have port put in.  So, Dr R and I talked about my troubles with IVs and if port would be beneficial. Dr R said that ports can cause lots of problems because of the high risk of infections, possible site for blood clots and you need to make sure you keep it clean. Ports are used A LOT with patients who receive chemo, but have an end in site for their treatment-meaning they are not used for  a LONG time. I unfortunately have no end in site for my treatment and so that is one of the main reasons why Dr R does not want me to get one. She is open to the idea of a pic line.  A picline is different than a port but hard to explain so you click on the link for info. A picline is easier to to take care, can get flushed and changed so that is what we would look into. However, because of past with the PEs and DVTs i will need to talk to hematology and see what Dr L has to say about it and she has the final say. Getting a picline or port kinda of freaks me out and is a nice reminder of how sick I am, however the thought of not getting poked a minimum of three times every time I need an IV sounds nice. They can also use it to get all the blood draws form me as well.

We then also look at all my joints and are so happy that the swelling, warmth and redness goes away and is stable because of infusions. Thank the Lord. Because things are being more stable we address the "damage" that has been done to my joints, which is never any fun. I need a new left knee and hand surgery on both hands. We can not really do any thing with my knee until my foot is healed and I can not have hand surgery until I am off the blood thinners... so we just wait. No Fun.

Due the weather changing and the cold coming we started to discuss the issues I usually have from teh cold and how to address them. Some of those issues are:
- hives from wet rain and extreme cold
- rash coming back and other skin problems
- heart acting up with extreme weather
- stiffer joints in the morning
- Sjogrens being more active with dry mouth and dry eyes

I will go back to see Dr R on the 20th after having my infusion on the 16. Until then I am trying to wear my braces as much as possible, doing what PT exercises I can, relaxing and sleeping..blogging and crafting! I also have more appointments coming up.. I see Cardiology on Monday and Hematology on the 8th and will update you on the heart and blood after I see those doctors. Thanks for the love and support!