Wednesday, June 29, 2016

Happy Almost July!

Hello there!

I thought that I would give a little update, so that my next post doesn’t rival War and Peace [again].

First off, the Patient Representative with my Rheumatologist is still working the case to present to my insurance to request the next Rituxan infusion. I went in last week for a tuberculosis (TB) test, which somehow would help my case (I didn’t even ask why at this point, I just did it).

I’m not too far off the plan for an early June infusion, but am starting to get a little anxious, since I have had a few changes to my symptoms that have made me a little uneasy. I feel that they are most likely due to some recent medication changes (will elaborate in a sec), but nonetheless, I am always wondering what will happen when my last infusion wears off.

The rash on my face is finally gone thanks to my 20 (okay, it's actually 4) different prescription cremes! My amazing Dermatologist has also recommended that I switch from my Triamcinlone (steroid creme) to my Tacrolimus ointment for my DM rash, since it's getting so painful, which can be an indication of thinning skin. Fun stuff. 

Some "educational" photos for fun:

Dermatomyositis rash

Ragged cuticles and nail fold telangiectasias.
Both very common in Dermatomyositis patients.

Gottron's Papules suck.

To refresh your memory, my last rheumatologist appointment was on May 26th. At that time, my labs showed that my red and white blood cell counts were getting low. I was at 4 tablets of Azathioprine, and we decreased to 2. We also added Dapsone to see if it helped my skin rashes. 

First, this is a little embarrassing, but I’ll just come right out with it. Brown urine. 
I drink about 80-100 ounces of water a day, so my urine is typically clear, however I began noticing that in the morning, it was brown. 

On the medication leaflet that I was given with the [new] Dapsone prescription, it said to seek immediate medical attention if this occurred (since it could mean kidney disease), so I messaged Dr. Grandits, who ordered some labs along with my TB testing. 

I had also started to get really tired again, feeling like I needed to take a nap in the afternoon, and heading to lay down in bed after cleaning up after dinner. No Bueno. This is what I had just gotten away from.

After a few messages back and forth with Dr. Grandits, I told her that I just wasn’t feeling comfortable with the Dapsone, and was worried about my counts getting lower. I also don’t really want to get on a drug that will likely be long term that could be dangerous for me, and I don’t want to be tired all the time anymore…
Hi Dr. Grandits,

I’ve been thinking about your message from last night. I talked about it with my husband, who reminded me that I have been getting much more tired in the past month and have been heading into bed very early, which is something that I had gotten away from.

The red blood counts are a little concerning to me. I haven’t had a great feeling about the Dapsone, and the rashes on my back are pretty painful. I think that I would like to just move on.

I know that we had discussed trying the Cyclosporine next, however to avoid possibly having to get off and then get back on the Azathioprine if it doesn’t do the trick, I think that I would really like to skip ahead to door #3 and try the Plaquenil next.

Do you think that this would be okay to do? Does the Plaquenil tend to lower the red or white blood cells counts as well?

Thank you so much for all of your help and guidance through these medication changes.

----- Message -----
Dear Maren,
That is reasonable, the hydroxychloroquine is a more gentle drug in terms of affecting the bone marrow and other organs. 
You can stop the dapsone, no need to taper. I have sent a prescription for the hydroxychloroquine to your pharmacy, start with one tab daily x 2 weeks, then go to 2 tabs daily. 
Let me know how you are doing.
Martha Grandits, M.D. 6/29/2016 11:34 AM

So! I head back in for a checkup and labs towards the end of July. 
Hopefully I will have more information about the Rituxan infusion, my labs will be looking better, and I’ll be feeling less tired and have less skin rashes, too!

Until then, I hope that you are all enjoying the summer. The weather is gorgeous here in MN today!

Thank you for your love and support!

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