adrenals, MRI #lupus

I went to see the nephrologist on Friday. I was her last appointment so we spent a lot of time talking. The office was really hot, so I spent a lot of time sweating too. She took a complete history. I told her about my high blood pressure and my extreme sensitivity to salt. She thought it was odd that I have such a huge negative reaction to it. I didn’t used to. In fact, Addison’s Disease requires a high salt diet. She also thought it was odd that even though my blood pressure isn’t dangerously high by clinical standards, that I feel so horrible from it. It makes me really dizzy, and causes shortness of breath, heart palpitations, and chest pain. Sometimes I even get irritated or confused. She thought maybe with the Addison’s disease that my body was just accustomed to having low blood pressure most of my life, and anything elevated would feel extremely high to me. She looked at my Doppler ultrasound and the blood flow and size of my kidneys looked normal. My bladder also looked normal (that’s another story). There was no evidence of narrowing arteries.

She seemed really interested in investigating why I’m so sensitive to salt, and why my blood pressure makes me so uncomfortable. She talked about the hydrocortisone I take for my Addison’s, and how anyone on long term steroids could potentially develop high blood pressure. That didn’t really make sense to me since it’s not prednisone, and since I’m taking a dose just to replace the cortisol that my adrenals should be making. I mentioned to her that my neurologist had wondered why no one investigated a pheochromocytoma before, which is an adrenal tumor (90% are noncancerous) that causes too much production of noradrenaline and adrenaline. Since my headaches are still pretty bad and are seemingly influenced by my blood pressure, it would make sense to look for a hormonal cause. She seemed to agree that we should look for it.

She gave me jugs to collect a 24-hour urine sample. I’ve done it before. Nothing makes you feel sexy like keeping your pee in the fridge. I was originally going to do it the night before my first infusion so we wouldn’t have to make a separate trip to LA just for a wee wee test. After thinking about it, and after talking to my rheumatologist, we decided together that it was necessary to investigate my adrenals before I start my first Actemra infusion. We are working on scheduling an MRI, hopefully for this week. The nephrologist doesn’t think there is any reason I should be taking florinef anymore, and to check with my endocrinologist about it. There was a time when I needed florinef, but at this point it may be adding to the problem. I don’t know why when my adrenals produce little/no aldosterone that I would suddenly not need medication for it anymore. It’s all been strange and miserable and I hope they sort it out.

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Benlysta #6

I had my 6th infusion yesterday. It went well, as it usually does, without the aggravation of talking on the phone with the pharmacy like last time.

I’ve probably talked about what an infusion is like before, but I’m just gonna run through what it’s like again.

It’s about an hour’s drive each way from my house to the office where I get my infusions. My rheumatologist’s office is actually in Beverly Hills, which can be interesting in itself. It’s not my cup of tea but I do manage to see some funny things while I’m there. I have to get my infusions in Los Angeles because it’s not something they seem to offer near me, and the doctors in a big city tend to know more and have the latest treatments when it comes to complex and rare diseases. Travelling isn’t a big deal I guess, it’s something I have to do to get the best possible treatments. I sometimes have a hard time with it though. With the Chiari Malformation, my neck gets really stiff and I get a lot of pressure in the back of my head from sitting too much. I do ok dealing with it on the way out there, but on the way back, when I’m almost home, it gets hard to deal with. I’ve tried lying down in the car and it helps the pressure, but it unfortunately gives me a headache. Some trips go really well, and others just give me a headache.

When I get there, we park in the parking garage across the way, run across the street, and take the elevator to the second floor of the building. They usually call me back as soon as I get there. I sit in the doctor’s actual work office, in a recliner (which unfortunately isn’t as comfortable as it sounds) and they wheel the IV cart in. They poke me with a needle and insert the line (the RN is really great at doing this, doesn’t really hurt and I don’t even have a hole in my skin you can see and it’s only been a day, always thankful for someone who can do it well). Before they hook me up to the IV bag, they draw blood through the line. They always draw blood before an infusion to check out how the last infusion is effecting your body. They are checking to see how your liver is handling it, and checking to see if the Benlysta is lowering the lupus activity. After they draw blood, they give me tylenol and claritin, because benlysta can give you headaches(like I need another cause, heh), and the claritin is just an allergy precaution. Then, at last, they hook the line up to the bag, and you’re stuck there for the next 60-90 minutes, depending on how long it takes your bag to empty (definitely make sure you go pee right before they hook you up, ’cause pushing around an IV tree to the bathroom is not a good time, and neither is holding your pee forever). I also recommend bringing some good books, your tablet, ipod, an awesome mom, just something or someone to keep you company while you’re sitting there, or else you’ll just be staring at the wall for a while. Sometimes infusions can make you have a funny taste in your mouth, so it’s good to bring some mints to keep you from having that ‘bleh’ taste in your mouth. I like the Ice Breakers Duo fruity mints. You probably won’t really feel anything while getting your infusion. Sometimes I feel a little warm, but I never know if it’s the treatment or the fact that I’m heat sensitive and my doctor keeps her office at 75-80 degrees F (23-26C)…I tend to hold heat in for whatever reason. I’ll be sitting there in my tank top and my doctor is like “Aren’t you cold?” and I’m like “No, its hot in here.” It partially has to do with sitting in the sun in the car on the way there. Like I said, I hold in heat. It sucks.

Once the bag is empty, they remove the line, and give me a snazzy bandage that doesn’t stick to my skin, it only sticks to itself (like florist’s tape) so I don’t have to worry about the adhesive ripping my skin off.

After the infusion is done I wait a while, and the doctor comes in to have a chat with me so I can catch her up on all the day-to-day things that go on. This time, we were talking about getting me in to see a cardiologist she works with, so I can finally get some answers on why I am having the heart/chest symptoms (see other blogs). She said that I tested positive for an antibody that sometimes attacks the heart (RNP), but that my ultrasound didn’t seem indicative of any sort of inflammation or otherwise negative activity that she could tell, but she also wants to have her cardiologist check it out because it can be tricky to spot. Benlysta doesn’t protect your heart so it would mean switching treatments if something was going on, and I’d really rather not have to do that, some of the other drugs just sound scary. I’m a little anemic, which always seems to be a bit of an issue for me, and I talked to her about it over the phone and I meant to bring it up to her while I was there, but I forgot. It’s hard to remember everything. “Keep a notepad” I know, I know. I get tired of doing that. Plus, I am lucky if I can remember to bring the damned thing with me half the time. Anyway, I did read online that sometimes anemia can cause chest discomfort and heart palpitations, and also cold hands and feet, so it had me curious. I started taking a supplement after I read that, can’t say I feel any better or anything, but it’s only been about a week since I started it.

Back to the infusions, they don’t make me feel weird after. Usually, just tired from riding in the car. Sometimes though I notice when I get an infusion, my throat glands get sore and I get the butterfly rash during the actual infusion. I didn’t seem to get that this time, although I noticed a little gland soreness when I got home. I don’t think my face flushed though.

Something that is important to remember about benlysta is to drink a lot of water before, during and after. It helps ward off the headaches that it causes. Since my ride in the car isn’t just a skip down the road, I tend to¬†subconsciously¬†avoid drinking water so I don’t have to hold my wee-wee all the way home. I don’t mean to do it. But it results in a terrible headache and I have to make a conscious effort to drink water. Last night I ended up with a headache, but it seemed to go away after a bunch of water and lying down. It wasn’t as bad as my chiari headaches, that’s how I know it was the benlysta. Chiari headaches don’t just ‘go away’ per se. Once you get a chiari headache you’re sort of fucked for the rest of the day.

So the day after an infusion, I usually feel somewhat worn out. Not sure if it’s the medicine or the trip or all of it. I make the trip sound bad, but really, it’s not. It’s relatively a quick hour. But it’s still tiring. I got in the car today to pick up my brother from somewhere and I had that “I feel like I was just in the car forever” feeling. I was pretty tired after a few errands, and it could have been leftover, but it could have also been the cardio/shortness of breath issues I’ve been having. Sometimes when I have an episode of that, I’m just suddenly so tired I can’t stand. It’s been happening even when my heart rate is normal (and my bp is always normal no matter what’s going on). It feels really awful to be out somewhere and just be like, “Man, I’m too tired to stand anymore all the sudden.” and it becomes this agonizing wait to sit down.

That’s really it for now. It’s bedtime and my cat is yelling at me.

TTFN