Last weekend I ‘developed’ a new issue. Last Saturday morning my left arm started getting a pins and needles sensation and whenever I lifted my arm higher than stomach level, it felt like it was on fire. I have since, been unable to grasp anything in my hand.

At first I thought it might have something to do with my steroid shots (both shots were in my left arm). I mentioned this to my doctor, who seemed to agree with me. That is, until I called his office still complaining about the loss of sensation (well, except for the horrible pins and needles and burning).

So today I had my ‘normal’ labwork done as well as an NCV (carpal tunnel test) and an EMG.

First, the good news, that well, isnt all that good…..My WBC went down 10000. My doctors expected it to drop more, but I still have another week until my next treatment (that is, if I still decide to get it).

I know I dont have carpal tunnel. I guess that is good news…..sorta

What I WAS told is that I have multiple mononeuropathy. This is nerve damage to a nerve group.

The doctor said Mononeuropathy may be disabling and painful. If the cause of the nerve dysfunction can be found and successfully treated, there is a possibility of full recovery. The extent of disability varies from no disability to partial or complete loss of movement or sensation. Nerve pain may be quite uncomfortable and may last for a long time.

Uh, ya think?

What they dont know for sure is if the immonu-suppressent caused this to occur or if my lupus caused this to occur. Both of these are factors.

The scariest part is knowing that lupus (SLE) can attack any part of my body, and is now making time in yet another part.

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Today I had the first of 3 Remicade infusions. Thats what Im told anyway.

Due to an unusually high white blood cell count after having an albumin infusion last week, my doctor thought it would be in my best interest (dont you just love when they say that?) that I halt any further albumin infusions and not begin the Benylsta infusions until we have a handle on my amazingly over reactive white blood cells.

Reminder for those who may have forgotten: When you have lupus, your white blood cells not only attack the stuff they are supposed to, but they attack the healthy cells also. That, is what causes inflammation as well as difficulty getting better.

Thats where Remicade comes in. In my case, my doctors are using it as an immuno-suppressent. They believe that todays treatment will kill off approximately 20000 white blood cells. And while I get asked alot of questions, (some I do not know the answers to) I know that my immune system went nuts after the albumin infusion, and for the most part, made it like I didnt get it.

And that is why I spent all of last week feeling so lousy.

So today, I bit the bullet and said goodbye to most of my immune system. I will have to be careful to stay aware from sick people. And me and my Lysol will become very close friends.

But, when you look at the big picture (another phrase used by my doctor) it will allow the other treatments to ‘take’.

And quite honestly, I dont want to waste my time losing time from work and co-pay money for a treatment that wont work, when there is an alternative.

 

Today was one of those days where you have to decide if its worth it to get out of bed….Despite having a body that felt like it was made of glass shards and a horrible headache, I managed. I got up and took what Im gonna call a shower and drove to work.

And, even tho I cant say that I was as productive as Id like to be, I did manage to complete a few important tasks. Go me, right?

Then, the hammer fell.

Today I met with my rheumatologist and nephrologist to discuss the infusion treatment plan. However, my original treatment plan is moot for the time being. I will not be beginning the Benylsta treatments on Monday. Due to a horribly high WBC, I will be starting the immuno-suppressent therapy instead.

The norm for WBC is between 6000 and 10000 and mine is 35000. Thats the highest its ever been. When I was first diagnosed, they thought I had leukemia because my WBC was so high. And this? No wonder I feel like crap.

I have to say, I feel defeated. Ive been listening to my doctors. Ive completely changed my diet. No salt, no protein….no fun. Ive increased my potassium intake. Ive drank enough orange juice to drown a small cow. All this and my labwork shows NO improvement.

NONE!

Granted, Im not spilling as much protein, but my potassium went even lower. Seriously?

And to boot, I got a steroid shot. Yes, SHOT. And it totally hurt.

 I spent about 20 minutes sitting in that parking lot crying my eyes out. How can I do all that Ive done so far, and NOT have any improvement? My body is betraying me and I cant even put into words how it feels right now.

Yea, yea….thats the joke of the day around here. Fun times…..

Welp, I got my first albumin infusion. It went better than expected (except for maybe this horrible headache)

Of course, when I got there, I was told that I had to have IV potassium since my levels were at 2.7. I was informed that I could be hospitalized for levels that low. Ive struggled with maintaining my potassium levels for years (going back as far as 93). I found out today that this is pretty common for those with kidney disease. I gotta say Im a little shocked, since lupus has only recently started attacking my kidneys. I think Im going to have to go digging thru my medical records to see if there was anything….anything I could have noticed. However, hindsight is 20/20 and I probably had other issues then.

Has anyone ever mentioned how horrible IV potassium is? Its cold and hot at the same time. It burns. Im certainly going to try to get those levels up before my next set of labs. Besides, having an IV in each arm…..not fun.

I was informed that I was approved for  Remicade. Its also an infusion (IV) treatment. Its used to treat a variety of things, including Chrohns disease and arthritis. My doctors are basically using it as an immuno-suppresent. I will have to be careful of who Im around, but in the long run, it should help alot with healing whats wrong with me.

Alot of people dont understand lupus. The easiest way to explain it is – its your body being allergic to itself. Your white blood cells that normally attack just the bad stuff….attack everything, including the healthy tissue and cells. Sometimes this can just cause inflammation, and other times, it can set you into a flare. Either way, the immune system is horribly over-active.

And thats where the immuno-suppresent comes in. By suppressing my immune system, my body will have some time to heal…instead of having all the progress Im making just go down the drain.

And, as someone whos been down the flare-remission-flare-remission road many times, I can tell you…..I am willing to try.