Flu shot, steroids, arthritis. #lupus #addisonsdisease #vasculitis

It’s been a little over a week since I had the flu shot. I’ve been more tired, and I’ve been having some muscle pain. It doesn’t really seem like it made my lupus flare though. I did have some pain in my throat glands yesterday but it was short-lived. I had a headache the day after the shot. All in all it hasn’t been a bad experience. If your doctor wants you to get the flu shot, you probably should. Just don’t get the nasal spray vaccine, and make sure that anyone that lives with you doesn’t get the nasal spray either. People with autoimmune disease can catch the flu from the spray and from being in close contact with anyone that has had the spray.

My endocrinologist said I’m on a high dose of hydrocortisone. At the time of the appointment I wasn’t showing signs of being on too much, but I did find out afterward that I have osteopenia. I really would like to be on the lowest dose possible, but whenever I taper it makes me sick. I had Rituxan infusions over the summer to treat vasculitis in my brain caused by lupus. I had to stress dose 10mg extra of hydrocortisone to deal with the treatments. Ever since then, I haven’t been able to ween off that extra dose without feeling horrible. I tried again this week, 1.25mg at a time, and by the third day I had the shakes at bedtime. I’m not gaining weight from it, I’ve actually been underweight for a while and trying to gain. In total now I take 37.5mg every day. I feel like I’m burning it all up. Aside from plaquenil, I’m not on anything else to treat the lupus itself. My immune system basically behaves as if I have a cold all the time, which is causing extra stress on my body. When I was on Benlysta, I was taking 22.5-27.5mg a day. I would sometimes stress dose on the day of the Benlysta infusion, but I never felt low on cortisol all the time like I did with the Rituxan. I’m not sure if being on the Rituxan or being off the Benlysta is what caused the need for extra cortisol. I hope that if they choose to put me on another immunosuppressant to treat my lupus, my body won’t be so stressed and I can taper down the hydrocortisone again.

Also, as a side note: Around the time of my Rituxan treatments, my pharmacy switched my brand of hydrocortisone from Qualitest to Greenstone Cortef. Most people in the Addison’s support group seem to prefer Greenstone, but I’ve been on Qualitest for at least 7-8 years and it’s what I’m used to. Not all brands are created equal and I had a theory that I wasn’t absorbing the Greenstone, so I asked CVS to switch me back to Qualitest. I haven’t really noticed a difference yet, but I’m more comfortable being on my usual brand. It’s something to keep in mind if your pharmacy suddenly changes your brand and you feel weird.

The kenalog shot is wearing off. For a few days, it seemed like it helped the joint pain in my hands as well as my fevers. Even though it helped the pain, the kenalog didn’t seem to help the stiffness. The aching went away but I was still experiencing my joints getting stuck and losing control. My doctor said that if the kenalog was helpful, I probably have inflammatory arthritis. I feel like I only got partial relief. I have some hypermobility in my hands and I want to ask my doctor if that has any effect on the pain or stiffness, or if it could be a symptom of something else.

I’m on a beta blocker for my heart palpitations. My rheumatologist said it can make the Raynaud’s worse. He was right. My hands and feet are really cold all the time now. It probably doesn’t help the joint pain either. I can’t have a resting heart rate of 116 though. That’s just ridiculous. So for now, I’m just dealing with the cold.

I had “ice pick” headaches last night. They’re like this surge of shooting pain in your head that lasts a couple seconds and then goes away. They’re benign, but later I ended up getting a migraine, and I still have a headache now. I haven’t had the ice pick headaches in a long time. They feel really weird and alarming but they aren’t anything to worry about. I guess last night’s episode was a migraine precursor. That’s new for me so while I’m not worried, it is strange and worth telling my doctor. The pamelor has really helped my headaches. It hasn’t been perfect, but I went from having a migraine every day to lesser daily headaches, sometimes almost no headache, and only getting migraines a few times a week. That’s a big deal considering I’ve been incapacitated by daily migraines for more than a year.

Rheumatologist, Endocrinologist, and some other big words #lupus #addisonsdisease

I’ve been in to see my endocrinologist, and I had some tests run. My thyroid is slightly under active, much to my surprise. If it was going to be anything, I figured it would be over active. We’re just going to watch it for now. My D3 is low, which I wasn’t surprised about, considering I can’t be in the sun.

The hydrocortisone dose I’ve been taking to treat my Addison’s is probably higher than it should be. I haven’t been able to lower it without having pre-crisis symptoms, like vomiting. I gave a urine sample, and also attempted a 24-hour urine sample which wasn’t successful because they only gave me one jug and I filled it after 16 hours. I will probably have to redo that test. They’re looking to see if I in fact need to be on the higher dose of hydrocortisone or if I’m just wasting it, and also measuring magnesium levels. My bone scan came back showing osteopenia which I’m not thrilled about. It’s probably caused by a combination of steroids, low D3, and prilosec/antacid use. I don’t know how they’ll want me to treat it, besides more calcium in my diet. I’ve been taking 4,000IU of vitamin D3 for almost a month, per my rheumatologist. I don’t know how to help my stomach issues while also not effecting the absorption of certain vitamins, and possibly my hydrocortisone. I tried the Bragg apple cider vinegar thing and so far it has only made it worse, so I went back on the prilosec. I’m probably going to make an appointment with a GI doctor.

Yesterday I went to see my rheumatologist. We talked about my chronic fevers. Somehow he knew that they came on in the afternoon, so he must know to be looking for something specific. I got the flu shot. I also got a shot of kenalog (steroid) intramuscular to see if it would help with joint pain. If it does help, he said I probably have inflammatory arthritis. If it doesn’t help, it’s more like a “fibromyalgia” thing.

He talked about having widespread “vasculopathy”, a word I think he coined to explain the spasm-ing and un-spasm-ing (more coined words) of my blood vessels. It’s not ‘sinister’ the same way vasculitis can be, and doesn’t pose the same risk of damage and blood clots like vasculitis.

I got a prescription for a beta blocker from my cardiologist. My resting heart rate was 116 the other day for no reason. I’m taking 50mg metoprolol. It seems like it helps for the most part. I’m still having occasional palpitations.

My rheumatologist said the beta blocker my cardiologist put me on can make Raynaud’s worse. I’m on a pretty low dose so he let it go for now. He talked about how Viagra and Cialis are actually great drugs to treat Raynaud’s, but that insurance won’t cover it because I’m a woman. My toes are numb and blue because they don’t get enough blood flow, but that’s not a good enough reason to get insurance coverage I guess.

Sorry, I left my flaccid penis at home.

Anyhoo.

If the kenalog helps my joint pain, I will probably be put on Methotrexate or something like it. In the mean time I’m just going to pay extra attention to what my joints are doing. I’m not sure if they’ll want to do pills or injections this time. I really don’t need something else to give me stomach trouble.

The effects of flu shot has been OK so far. My arm is sore on and off. I’m tired, I have a bit of a headache, and the chills. My throat glands are sore on and off. Honestly though, I could have all that on a regular day too. So far I don’t feel like death, so I’m happy about that.

Remember that if you or someone you live with has an autoimmune disease, you can’t have the nasal spray flu vaccine. The needle doesn’t hurt anyway, especially if your nurse is good.

Knowing my limitations #lupus

Last Friday, I went to a show for the first time in a few years. I went to see Milo Greene at the Wiltern. The last show I went to was about 4 years ago, and a lot has changed with my body since then, so I didn’t know how I would handle it.

The fact that I tested negative for neuronal antibodies in my recent blood work doesn’t necessarily mean that I’m not still having residual vasculitis in my brain. It’s hard to know how long it would take any damage to heal, if it will even heal at all.

The Wiltern is a small indoor theater, probably the smallest I’ve ever visited aside from local places. It was a nice place. Surprisingly not too crowded. I thought their sound system could use a little tweaking, as it was loud and a bit distorted at times. Other than that, it was a great show. I had seats in the loge, so I didn’t have to fuck around with standing-room-only. There’s no way I could stand for a show. Milo Greene opened for another band but I was really there just to see Milo Greene. I was going to stay for both bands if my body allowed it, but it did not.

Milo Greene was on stage for about 45 minutes. Halfway through their set I could feel the migraine coming. When I’m about to get a really bad migraine, I can’t turn my head, and that was starting to happen. It’s not that I didn’t enjoy myself, because I really did, but I also was realizing that this was the first concert I’d been to since knowing about my lupus and vasculitis. The loudness of the show was definitely having an effect and I knew I couldn’t make it through another band.

I was a little disappointed that I couldn’t stay for the whole show. It was the first normal Friday-night-thing that I had done in a long, long while. At the same time, I didn’t want to remember “getting through” the concert. I wanted to remember enjoying it. Rather than making myself stay, I decided to go buy a T-shirt and go home. It was the right decision. I had gotten to see the band I wanted to see, and decided to hit the road. In a way I was proud for allowing myself to go home rather than putting pressure on myself to stay.

On the way home, my headache actually let up. It probably wouldn’t have if I stayed for the whole show.
For the next two days I had headaches. I’d actually been getting some relief from headaches with the Nortriptyline my neurologist gave me. It’s hard to know, but I wonder if the show triggered an episode of headaches. They were weird headaches. I had a lot of pain at the back of my skull on the left side. My headaches are almost always left-sided, but I had a pulsing in my neck on that side too. It was short-lived, luckily.

I felt pretty fragile before and during the show. I didn’t get too dressed up, since getting ready to go somewhere is pretty exhausting these days. If I spend too much time doing hair or whatever, I won’t have the energy to make it through the event. I wasn’t sure what to expect with my body so I spent the day actually worrying about going rather than looking forward to it. That happens a lot when I make plans. I end up breaking plans a lot of the time because I can’t handle the pressure of wishing I felt well and worrying/knowing that I won’t.

Being at the show was an interesting experience. I guess it was a test to see what I can handle these days. I know the last show I went to I stayed for the whole thing, although I’m sure I left with a headache. It was also interesting to people-watch. I went to the concert with my mom, but I probably wouldn’t have gone with anyone else. She’s the only one that understands my limitations. She probably understands them better than I do. With her presence I was able to comfortably make the decision to go home early. It’s not easy to do that around other people. It’s hard to get people in my age group to understand how hard certain things are for me. Some people my age seem to have a strong need to be overstimulated and I just can’t keep up with the booze, and the loud music, and standing in the pit for 3 hours. I’ve felt bad that I have a hard time with my social life, especially since being sick, but I realized I don’t want to be around people that can’t just chill the fuck out sometimes. In a way it made me feel relieved. It made me feel like I’ve been making good decisions on not being around people that I feel forced to ‘keep up with’. Once you’re in a situation where you’re surrounded by people who are in search of that Friday-night overstimulation, you feel social pressure to force yourself to “have a good time” too. If I push myself too far, if I stay out too late, if I don’t listen to my instinct that “this is too much on my lupus” I will definitely pay for it. People probably think I’m flaky, but it really just comes down to how much pain I’m dealing with, and that there really is never a ‘right time’ for anything.

From the show I took away a good memory, a 2-day headache, a cool t-shirt, and a little reassurance. It was worth it.