Test results #lupus

I went to see my rheumatologist yesterday to discuss the results of my spinal tap and a few other tests. There was no indication of inflammation in my spinal fluid. I also tested negative for Multiple Sclerosis, which was something I was worried about. I tested negative for neuro antibodies. I had tested positive for the neuro antibodies before the Rituxan. This means there is currently no antibody activity in my Central Nervous System. While I am still getting daily migraines, it is no longer caused by antibody-induced vasculitis in my brain. I am no longer in danger of having a stroke or TIA. The cause of my headaches is no longer an emergency

I’m going to see my neurologist on Tuesday to figure out what the current cause of my headaches could be. My rheumatologist believes it could still be vascular-related but he explained it being like Raynaud’s of the brain. He thinks that if my blood vessels constrict and dilate much like the vasospasms that occur in Raynaud’s, then it causes my brain to sometimes be over- and under-oxygenated. Headaches would be the result of over-oxygenation and ‘brain fog’ would be caused by under-oxygenation. He called it ‘vasculopathy’ and said it was nothing to worry about in the way of emergencies. He also said it could be difficult to treat. After I meet with my neurologist and he can give me a new assessment based on my new lab results, my rheumatologist said he would come up with a new ‘game plan’ to treat the rest of my lupus.

My Sed rates were normal. There was no indication of muscle inflammation in my blood. My ANA is still high, which still points to definite lupus activity. My ANA will always be positive, there isn’t anything that can be done about that. I will always be positive for other lupus antibodies as well, the only thing that changes is their level of activity. I still have definite systemic involvement. My ferritin levels were actually normal, which is unusual for me. I’ve been anemic for years. I have changed my diet a little. I stopped eating red meat completely (not that I really ate it anyway). I’ve basically been eating rice, potatoes, vegetables, chicken or fish, cereal and almond milk, fruit and some organic snacks in between meals. Everything is low salt, no preservatives, and organic if I can help it. I don’t eat restaurant food or anything instant or microwaveable. I’m unsure what caused my ferritin levels to become normal, but I’m certainly happy about it. My vitamin D3 is low, which is not surprising, since I cant be in the sun at all. He told me to take 4,000 IU a day.

There are still things to address in the future, like the constant heart palpitations, high blood pressure, the daily headaches, and the overall chronic pain and fatigue that slow me down. The rheumatologist had to take our first couple of appointments to take care of the most important and alarming aspect of my symptoms, which was the vasculitis. I have a neuro appointment on Tuesday, an endocrinology appointment at the end of the month, and I’ll see the rheumatologist again sometime after that to put everything together to figure out what my next course of treatment is. He talked about prednisone, which I’m not thrilled about, being that my adrenals are already underactive, and I already have chronic heart palpitations. The only person that could really answer that question is my endocrinologist. I’m sure I will still need to be on an immunosuppressant of some kind. It wouldn’t surprise me if they actually put me back on an IV drug like Benlysta, since my CNS lupus seems to be a little quieter for now.


Spinal Taps and Google Maps. #Lupus

I had a spinal tap done yesterday. I had one about 5 years ago that went terribly. With that experience, I really wasn’t looking forward to having another one. Luckily, it went differently.

First off, I’m going to say that if you have to have a tap done, get it at a major city hospital where the doctor probably does dozens of them a week. The problem with my first tap was that it was done by a local doctor who didn’t have the confidence to do it, so she fucked it up. I’ve had ongoing weakness in my lower back since then. I don’t know what the hell she did back there, but I barfed afterwards and they had to give me Valium because I had a panic attack.

I was originally scheduled to go next Thursday, but my doctor called the hospital and they were able to squeeze me in yesterday morning. I was happy to get it over with rather than worry about it for a week.

If you’re nervous, and you have Xanax with you, take it before you check in. Once you’re admitted you’re not allowed to take anything. I learned that the hard way, and sat there with heart palpitations. I felt like I was in the waiting room for an eternity.

Some dude at the front desk told my mom she wasn’t allowed to be there with me. I panicked a little on the inside. My mom followed me back just to take my bag for me when it was time. The nurses and doctor didn’t say one word about her being there, and even offered her a chair. One of the nurses handed her some post-procedure information and said “here’s some bathroom reading”.

If you’re a funny nurse, it makes being a patient suck a lot less. Thank you for that, and be proud of it. It’s the little things, y’know?

I’m built like a feather, so I was able to lie down for the procedure. I was on my side, knees pulled up to my chest as far as they could go (apparently, I’m pretty flexible, despite feeling like the Tin Man most of the time). For my first tap, they made me bend over a table, which isn’t unusual, but lying down is much more comfortable. I recommend it, if you can choose. The nurses were really nice and reassured me that it wasn’t going to be as bad as I thought. The doctor came in and prepped my back, and made some jokes about having to do taps on people that weigh 300lbs. He used ultrasound to find the right spot (a technique that was not used the first time) and marked my back with a pen. They first injected the area with Lidocaine to numb it, which is honestly the worst part of the whole deal. It can really burn sometimes but it wasn’t too bad yesterday. This doctor really knew what he was doing. After they do that, the tap needle goes in. They used a pediatric needle, another thing I recommend. It takes longer but is less traumatic in the end. I didn’t feel pain really, but I wasn’t completely numb either, I felt everything that went on. When the needle goes in, you’ll feel a weird pop, it’s hard to describe, but not really painful. Just strange. Sometimes, some people get an electric shock pain that shoots down their leg and makes it kick. It happened to me the first time, but not this time. It can be painful. Somehow they managed to avoid it altogether yesterday. Once the needle is in, you can feel pressure in your lower back, but it wasn’t really painful. It is uncomfortable, though. As the fluid was being collected, I felt some tingling in my lower spine. The doctor had to ask me to relax because I was tensing up, making the fluid take longer to collect in the vials. It took a while anyway, because they used a really small needle, but given the choice, I’ll take the small needle over a big one. There was a point during the procedure where I thought I was going to panic, because reality set in and I remembered how it went the first time. I focused on this picture on the wall and started singing the lyrics to some song in my head. I can’t remember what the picture or song was now, but I managed to somehow talk myself out of the anxiety. I wasn’t able to count because I couldn’t see, but my mom said they took 5 vials that were fatter than your standard blood vials. The nurse said it was nice and clear, which is great news.

After I was done, I thought I’d have to lie on my back for an hour. Since the needle was so small, I was able to get patched up and go right home instead.

The ride home was hard. Traffic was stop-and-go for part of the way. After the adrenaline wore off, reality hit me and I just wanted to cry the whole way home. My back has been pretty sore on and off. I’ve also been having pain and tense muscles in my butt and legs. My neck has been pretty stiff. Spinal taps cause headaches in some people because it can create a small air bubble in your cerebrospinal fluid. Luckily, I haven’t had any major headaches, just small ones.

When I got home, I crashed. I couldn’t stay awake. I slept for about 2 hours. My body doesn’t handle stress well because of my adrenal insufficiency.

I’m not sure how long it will take my back to heal completely, but I have to keep the bandages on it for 2 days and skip showering to keep the puncture site sterile. My muscles are pretty sore. I can’t bend over or lift anything. I have a back brace to wear when the pain gets bad.

I will get the results when I go back to my rheumatologist in a couple weeks. He is looking for the cause of my chronic daily migraines. Even though the SPECT scan showed vasculitis, it didn’t determine the specific cause. The Rituxan does not seem to be helping at all. Once we get the results, we can figure out if the Rituxan was the right move, or if I need another lupus medicine.

I love you Mom.

On the way home from the hospital, I saw a Google Maps car. I’ve never seen one before so I was strangely excited about it.

visit to new rheumatologist #lupus

I spent the day in Los Angeles on Tuesday. I first visited my cardiologist to check in with him about my blood pressure. He raised the dose of bp medication and we’ll go from there. It was a pretty short appointment.

From there I went to see a new rheumatologist. I’ve seen him once before, but I’m hoping he will take me on as a new patient. I brought him up-to-date with my current treatments and problems. He seemed surprised that the Rituxan hasn’t improved anything yet. Even though my SPECT scan shows evidence of severe vasculitis in my brain, he seems to be unsure what the cause is. My other doctor didn’t do a spinal tap, which would ultimately show what’s going on in my brain. My new doctor ordered one, and I’m having it done tomorrow morning. He is looking for lupus activity, but also a couple other things, like a virus or fungal infection. He said that someone with a compromised immune system like mine could be susceptible to infections like that. There was an undertone of irritation from the doctor about how my other doctor has been handing everything. He also talked about doing an experiment with Solu Medrol, likening it to the “Pepsi Challenge”. I would take a gram of Solu Medrol every day for 3 days and if I respond to it, then we’ll know it’s the lupus causing my headaches.

Obviously, I’m not looking forward to getting a spinal tap done. I had a bad one done about 5 years ago. But this time, it won’t be at a local hospital (which may as well be “Bob’s spinal taps, hair care, and tire center”) I’m getting it done at Cedars-Sinai, and it will be guided by ultrasound with a pediatric needle. They were originally going to make me wait until next Thursday to get it done, but the doctor called the hospital to get me in sooner. I’d much rather get it over with than think about it for another week.

I found out my other rheumatologist was billing my insurance for more time than I was at the office, which is one of the reasons why I wanted to switch. Sometimes while I was there for an infusion, I wouldn’t even get to talk to her, and I don’t think it’s good practice for her to bill my insurance as if she spent time with me. Some of my infusions were over in 2 and 1/2 hours, and she billed the insurance for 4 hours. It makes me question the legitimacy of the co-pays I owe. They would never let me pay the co-pays while I was at the office, it was more like a “we’ll send you a bill” kinda thing. And lately, I have an outstanding balance and they are threatening sending me to collections. My information has been given to receive statements a hundred times, but I still haven’t gotten anything, and no one has been willing to explain why. It’s all a bunch of horse shit to me.

Last time I was at her office, she was having a meeting in her tiny waiting room with a couple other ladies about how to attract more “high-end patients”. I was pretty insulted. I didn’t know the Hippocratic Oath stated to “only treat rich sick people” somewhere.

So those two incidents, along with the fact that I’m not doing better and that she seems unwilling to get to the bottom of it, I decided I need to look for care elsewhere. I hope I chose the right path.

My neurologist is giving me nortriptyline for my headaches. I’m not excited about taking it since it’s an antidepressant, but from what I’ve read, it has been really helpful for people with migraines, and also helps people sleep too. I have a migraine almost every day. I sleep for shit, too. Both of these things are keeping me from having a life beyond the couch.

The heart palpitations are still bad, and I have an appointment with my Endocrinologist late September. I’m gonna have him check my thyroid.

Other than that, same old shit. Still in pain, still not sleeping, still have no social life.

That’s it for now, I guess.

2 weeks post-Rituxan #lupus

Well kids, I’m 2 weeks into that magical-yet-guesstimated 3-month time period it supposedly takes for 4 weeks-worth of cancer drug to put Lupus in remission. Is that a run-on sentence?

Anyhoo, I have a really bad headache, as usual. I’m still getting fevers every day. I actually think I’m in a flare of sorts. I’m not due for my “lady’s days” (as Ray Barone lovingly calls it) for at least 10 days, so I don’t think it’s a hormonal flare. Perhaps that’s TMI, but you should all know by now that this is a medical blog, and I spare no personal detail because someone might be able to relate. I’ve been waking about at about 4-5am aching everywhere, especially in my glutes. That’s a big pain spot for me. It’s fun waking up at the crack o’ dawn (literally) because your ass is cramped.

I think the brain fog is letting up a little. I haven’t been my comedic self in a while. I couldn’t find my words for months. I’m not really sure what makes it come and go. I wish I knew, because when it happens I feel like I can’t do anything. I can’t get out of my own way or do things in an order that makes any sense. When I was writing during the brain fog I just felt like it didn’t sound like me, it didn’t come out the way I wanted it to. I took a break from hat-making which is a big hobby of mine. I have a couple blogs I’ve been meaning to write. I’m hoping to have the energy to work on those things in the coming weeks.

I’m getting pretty tired of the fevers. I don’t know how I’m going to get through the summer heat and have a constant fever at the same time. I can’t even sip my coffee in the morning without triggering an episode of the sweats. It’s obnoxious. Its also very irritating to my already-irritated skin. I’ve been alternating between rx-strength ibuprofen (Duexis) and tylenol to help keep them down. They both wear off rather quickly. I do get episodes of the chills too, as anyone with a fever would, and that can be annoying as well. But it’s not as prominent as feeling too hot.

I’ve failed to include Addison’s disease and how I’ve managed it during and after my Rituxan treatment. I think I will write a separate blog about that within the next few days, so long as my brain allows it.

It doesn’t burn when I pee anymore. No one told me Rituxan makes it burn when you pee, so this is me telling you now. If you’re having that problem, it’s still a good idea to get a urine test done just to make sure, but also don’t be alarmed if it’s happening to you. Cystex is a great over-the-counter treatment for the pain. It’s an NSAID, so be careful with it.

I’m going in to the Rheumatologist on Tuesday so they can take blood to see if my white cell count is back up. I’ve stayed out of crowds for the most part, save a few trips to the store. I noticed when I’m out my throat glands get really sore. I attribute it to more of a flare than an immune reaction to being in public, though. It’s almost like my whole body aches along with it. Sometimes I wonder if the vasculitis is effecting more than just my brain.

My headaches have been a bit different lately. I’m noticing a pattern that my nasal passages swell at the same time that my headaches come on, as well as pain in my teeth and neck/back area. It’s kind of weird how I can feel that it’s all interconnected. The gland soreness in my throat goes with it sometimes, too. I’m still treating it with Duexis and Fioricet. Since giving up the Nifedipine, I think the head pounding is less intense, but the pain and frequency are the same they have always been. I’m back to having blue feet without nifedipine, but it wasn’t worth the pain I was in. While on nifedipine I felt like I could tolerate salt a little more, which is important for the Addison’s, and now I’m back to being intolerant of it, which sucks. It has made my diet so strange. I feel like I can’t eat anything that hasn’t been prepared at my house, because food is just so damn salty.

I’m trying really hard not to hurry these next few months, because I know it will only make them drag by slower. I’m not exactly anticipating a remission either, because I don’t want to be disappointed. Would be nice to kick the daily headaches, though.

Jill, professional thumb-twiddler. #lupus

I think the hardest thing about being sick is the waiting. I’m always waiting for something. And whatever it is usually takes an eternity.

The medical board reviewing my spect scan case denied it again, even though my neurologist went in there armed with plenty of evidence that it needs to be done. He was really surprised that it got denied. He even told me he has some evidence that my Adrenal insufficiency (Addison’s) is caused by my lupus. I got a letter in the mail stating that “Lupus is a disease of soft tissue and joints” as their reasoning for deeming it medically unnecessary. Actually, lupus can effect any part of the body, even the brain. There is a form of Lupus called Central Nervous System (CNS) Lupus in which the antibodies attack the brain and spine, and has been suspected in my case more than once. I don’t appreciate the fact that the doctor that reviewed my case and denied it is probably a doctor appointed by the insurance company, and they have absolutely no clue what they’re talking about.

My rheumatologist is going to have to fight with them about it now. I wonder how many months that will take…

In the mean time, I’m worried about everything, and I’m tired of being in pain.

I’ve been frustrated with my current rheumatologist because I sometimes feel like I’m not being heard, and I also feel like we’re not getting anywhere. I went to a different rheumatologist for a second opinion yesterday.

She was nice enough, and really young. She took a full health history, accidentally deleted it on her laptop, and did it all over again, and then the original reappeared for some reason. She insisted that vasculitis can only be diagnosed by spinal tap, and that spect scans are ‘experimental.’ I told her about my Addison’s Disease, and I got a feeling she didn’t know what I was talking about until I said “adrenal insufficiency” and mentioned how I can’t be on prednisone long-term because of it.

I talked to her about my experience with my current rheumatologist and getting the Benlysta infusions, and she asked me why I went to see a doctor so far away from my house (I get my infusions about an hour away), and I told her that the doctors in town were like ‘farmhouse doctors’ that don’t have much knowledge outside of your garden-variety illnesses. I’m exotic and they haven’t been able to help me, and the closer I get to a big city, the more educated and innovative the doctors are, especially at the universities. She was mildy offended by my ‘farmhouse’ comment for some reason. It wasn’t aimed at her. But I didn’t know how else to explain it. Doctors in a smaller city/town just don’t know how to deal with someone like me. I hear a lot of “I don’t know what to do with you”, or “what’s that?” or “we don’t do that type of treatment/test here”. They don’t do Benlysta infusions in my town. The one rheumatologist they have here refused to treat me with anything besides ibuprofen because there “wasn’t enough research”. I wasn’t going to sit around and wait until I was pissing blood to go to a real doctor, and I didn’t care if it was a far drive. I wanted the best treatment as soon as possible so I wouldn’t get organ damage.

Then she suddenly asked me “What about the abuse?” reading off some file on her computer. I was like “what abuse?” And she started talking about physical and sexual abuse. She wasn’t reading the correct file or something, because I’ve never been abused, and even if I was I don’t think I’d put it on a doctor form.

After that nonsense, she told me that she didn’t see anything she could treat me for right now. I had told her I was off the Benlysta, and she talked about Imuran, which I later learned isn’t a typical treatment for lupus. She doesn’t think I have vasculitis and she doesn’t think a spect scan is necessary, and the “maybe it’s your Addison’s/something else is going on” filled the air once again. She wants me to see another rheumatologist, someone who is an expert, and was already suggested to me by my current rheumatologist. I’m just too complicated. Which brings me back to my farmhouse doctor comment. Now I need to “see an expert”. See? Told ya so.

Between the deleting everything on her computer, and reading someone else’s file about abuse, and not being able to help me, it was a weird experience and I’m not going back. The frustrations with my current rheumatologist seem miniscule compared to the frustrations I felt getting a second opinion.

I’m sticking with what the neurologist says, and I’m going to continue to fight for the spect scan. He is a doctor who has a good head on his shoulders and knows so much more about things outside his specialty than any doctor I’ve ever seen. I’ll be sticking with my current rheumatologist. As far as treatment goes, I don’t know what direction that will be going in, it all depends on the spect scan.

I’m still in a lupus flare. I feel like the Tin Man. When Rocky Balboa said “My hair hurts”, he wasn’t kidding. I’m trying to stay positive and stay busy, and most days I do alright. I was pretty pissed yesterday though, as you can imagine.

I need a foggy day beach trip and some pizza, then I’ll be good. In the mean time, it’s The Wonder Years and crocheting a hat.

*high five*

I’m sorry Mario, but the princess is in another castle. #lupus

I had my Benlysta on the 3rd. I was sick the last week of February, so I had to push my treatment off by a week.  I was flaring before the 3rd, not just more pain, but the red face/chest rash, fatigue, heat sensitivity, and the headaches were really, really bad. I remember watching the Olympics and there wasn’t a night during it that I didn’t have a headache. It was pretty terrible.

I wonder if I would feel sexier if I started calling my lupus rash my ‘leopard spots’ or something.


After I had the Benlysta, I was still flaring. About a week and a half later I called my doctor to tell her about it, and she wrote me an rx for Prednisone, and some vicodin to try since my other pain relievers seem to cause sleep apnea. I’ve been taking a break from the tramadol, because it just seems to effect my breathing too much. I don’t seem to have a problem with vicodin yet, but I’m only taking a small amount. I don’t like taking it, but the pain has been too ridiculous. I can’t just do nothing.

I hate prednisone. They should just call it predni-crack.

My doctor talks too fast. She’s in such a damn hurry to get me off the phone that sometimes after she hangs up I realize I don’t quite understand everything she said. I have a hard time concentrating on phone conversations for some reason anyway, but her eagerness to talk fast and not let me get a question in without interrupting her makes things difficult and confusing sometimes.

I was supposed to get some cognitive testing because my focus and memory have given me a hard time, for a long time. That particular doctor doesn’t take my insurance, so I will be seeking some testing from somewhere else at some point. I heard the testing is about 4 hours long. Not stoked about it, but I’d like to see if I can get some help, too. It has basically impaired my ability to have phone conversations beyond the “Hi how are you” and I have a really hard time learning new things, and enjoying books. I miss not being in a brain fog. I miss books. I miss learning things with ease and feeling proud about it. I miss when all these things didn’t feel like a miserable chore. I even miss school.

I thought over the phone she said I should take prednisone for 3 days. But when I picked it up, it was written for 30. So in retrospect, I wasn’t sure if she said 3 or 30. I called her Monday for clarification, and she didn’t get back to me til Tuesday. Her words were “4 or 5 or 6 days.”


I guess I was confused because she didn’t know how long I should be on it, either.

As you might already know, I have an Adrenal insufficiency (Addison’s disease) and I can’t really fuck around with steroids too much. My adrenals don’t produce enough cortisol on their own, and taking prednisone regularly would cause them to ‘shut off’ and produce even less when I stopped the prednisone. It’s like they get used to the steroid being there so they stop producing. The last thing I need right now is an adrenal crisis. Most ERs don’t even know how to treat one.

My Endocrinologist said a short treatment with prednisone would be safe, that’s why I was so worried about getting ahold of my rheumatologist to clarify.

I’m in the market for another rheumatologist. One that gives me the time of day and isn’t so wishy washy in making decisions.

So I took the full dose of pred (10mg) for 4 days, and I’ve decided to taper down myself rather than just stopping it ‘cold turkey.’ I feel moody and jittery, and my heart has been pounding on and off all day. I still feel like shit from the Lupus flare, and now I have the added side-effects of prednisone. I really don’t feel like it helped the symptoms. My face is still red. I had a day where I didn’t go to bed with a headache, but it was only one. I’m tired, sore, and annoyed.

My rheumatologist wants to stop the Benlysta. That means I’ll probably switch to Rituxan at some point, or perhaps regress to Methotrexate injections. There has been talk for at least 6+ months about “whether or not the Benlysta is helping” and it’s pretty obvious that it isn’t. It was talked up to me like some magical miracle drug and I really don’t feel I’ve “gotten my life back” as I was told I would. I’m waiting on getting a SPECT scan to check for vasculitis. The insurance company has been a dick about that. My neurologist has been pretty awesome in dealing with them. He took my case to a medical board, to deem it medically necessary. In the mean time though, more than a month has gone by, and I’m still sitting here with really bad headaches, every day.

I tried some herbal things for my headaches. You’ll know I’m desperate when I start turning to plants for help, because I’m terribly skeptical when it comes to herbal things. I see it nothing more than a placebo effect for ailments that are easily remedied by something over-the-counter. It doesn’t help anyone in any real kind of pain, not in the chronic illness sense. It can still damage your liver, too. Just because it comes from a leaf doesn’t mean it’s safe.

That being said, I tried a Feverfew/B2 mixture called migrelief, and it actually helped. Like, immediately, and it helped a lot. The problem with it were the side effects. It gave me really bad insomnia, like ‘up all night and wired’ insomnia. It also made me have a foul taste in my mouth that was so bad I had to stop taking it.

My neurologist had recommended Butterbur, and I tried the feverfew mix while I was waiting for the Butterbur to come in the mail, because they are from the same plant family. You have to buy butterbur that is free of alkaloids so you don’t get liver damage(“PA free”). I started the butterbur as soon as I got it, and got no bad side effects, other than burping, but got absolutely no relief, either.

I have an appointment with another rheumatologist next week. My spect scan should be figured out by the end of March. My next appointment with my current rheumatologist is at the beginning of April. I won’t be getting any infusions that day, but probably be talking about what to do next.  I’m hopeful that things are moving in the right direction, but a lot of the time I feel like when I get to a conclusion, it ends up being “Toad” instead of “the Princess”, and I’m off to the next castle to battle lava, Bowser, and those fireball things that swing around. Hopefully I’ll find a 1up.

Damn goombas.