Actemra #lupus #RA #stillsdisease

I had my first Actemra infusion yesterday. It went well. The infusion center is pretty nice, much more comfortable than my previous doctor’s office. The nurses are more attentive and they took my blood pressure every half-hour. It’s nice to have an opportunity to talk to other people who are also there getting infusions.

It felt the same as my past infusions. They didn’t give me any pre-meds. For the first half, I got really sleepy. That usually goes away during the second half of the infusion. I got a little dizzy but realized it was from looking down, a problem I’ve had for a while. It’s hard to stay occupied during infusions if you can’t look down to read. This infusion took about an hour and a half. By the end I had a full bladder and a headache, a typical ending of all infusions.

I heard the nurses talking about another patient’s Rituxan infusion. They were talking about slowing it down to 7 hours because it can be a hard med to handle. My Rituxan infusions were done in under 2 hours. It’s a good thing I handled that medication so well, because my previous doctor could have made me pretty sick by rushing it like that(and she billed me for a long infusion, too). It’s another reason why I’m glad to have another doctor now.

On the trip home I was pretty tired. I had an errand to do and I felt a little out of it. When I got home and changed into pajamas, I started to feel really achy all over. My head was hurting a lot. I’ve been taking Tylenol lately since I’m restricted from using ibuprofen and other NSAIDs for this week because of the endoscopy. I played video games for a while. I noticed my concentration was absolutely horrible. The overall aching was worse with this infusion than my past infusions. When I went to bed I took some benedryl. That seemed to actually help with the headache a lot.

Today I am really tired. No headache so far, but I had a typical daily episode of being short of breath. I took some Xanax for it. Even though it’s not caused by anxiety, it helps. If it wasn’t for Xanax, sometimes I’d be too out of breath to move.

The MRI results came back of my adrenals, as well as a full report of the rest of my abdomen, uterus, and bladder. Everything is normal. No adrenal tumors. It’s great news, but it also means I’m back to square one in figuring out why I have high blood pressure, shortness of breath, etc. My next move is to see another cardiologist for a second opinion on my heart. My current one hasn’t found any inflammation around my heart, but he did say that sometimes it can be so small that it would be almost undetectable. He doesn’t think it’s necessary to do any more ultrasounds on my heart right now. I want to see someone new so they can look at things with a fresh eye. There has to be a logical explanation as to why I am so uncomfortable all the time. I will also probably be revisiting my endocrinologist soon, because it could perhaps be hormonal as well. We’ll see, I guess.

I’m going to take it easy today. The nurse said, and I quote, “Don’t hang around a bunch of snotty kids today.” She was saying it to be humorous, of course (well, sort of). But I know what she means. I can’t be around a lot of germs today. I’m too tired to do anything anyway.

Tomorrow is the upper GI endoscopy, with propofol anesthesia and IV hydrocortisone adrenal support. My rheumatologist said it would all be fine, even after just having an infusion. I guess I’m not too worried about it anymore, just looking forward to getting it over with. I’d like to put a stop to this awful acid reflux if I can. I miss Italian food. Like, seriously.

Well, that’s all folks. There is a lot of Mario Party in my immediate future. TTFN.

What’s next #lupus

I went to the rheumatologist Tuesday. I’m stopping the methotrexate injections since it’s not helping anything. I told the doctor that I didn’t feel better, that I felt like it just put my fevers on a different schedule. I’m still getting the sunburn-like rashes. I am still getting the swelling and itchy rashes over my joints when they hurt. My migraines are still bad. I have a whole array of other things that I haven’t even addressed yet because the list is so goddamn long.

He wants me to go see dermatologist for the rashes to get some tests run. He said it will help to paint a better picture of the autoimmune activity that is going on. He also wants me to see an infectious disease specialist to rule out any kind of infection that could be causing symptoms.

He took some blood and urine to make sure the methotrexate didn’t cause me any problems.

I know he is making the right move. Methotrexate is basically poison, and I don’t want to be on a medicine like that if it’s not helping anything. I know he wants to dig a little deeper before he puts me on something else. He isn’t just going to blindly put me on some random medicine to see if it helps.

I was on methotrexate pills in the Fall of 2012. It didn’t help me then, either.

I found myself worrying about Tuesday’s visit at 4am yesterday. I guess I’m just tired of the “now what” feeling. I’ve had some heavy-duty lupus treatments, (methotrexate, Benlysta, Rituxan) and none of them worked. I’ve already been told that I have rheumatoid arthritis activity. I feel like I’m bracing myself for another diagnosis, and I’m hoping it’s something that has a treatment.

Whatever is going on is effecting everything. My hair is thin. My skin is irritated, and breaks out in burning rashes. My periods are short and heavy. It’s painful to use tampons. Some days it burns when I pee. I drink water constantly so that it doesn’t burn when I pee, and I pee 4-5 times in the night. My eyes are so dry and irritated I can’t wear contacts or makeup anymore. My heartburn gets so bad it makes my gums hurt. It gives me a bad taste in my mouth. When I lie down at night everything in my stomach wanders back up my esophagus. Sometimes the esophageal irritation is so bad I can’t wear a bra. My heart pounds for no reason. My blood pressure goes up for no reason. I get vertigo when I look down. My lymph nodes in my armpits swell and make my boobs sore. My nose is constantly congested. I can’t be in the sun without it making me feel sick. I’m tired, my muscles feel too weak, and my joints lock up when I try to do anything. My headaches are still the boss and my brain fog still embarrasses me in public. When I laugh I get asthma. When I cry I get migraines. I get headaches from chewing, bending over, sitting still, and eating bananas. My diet is so bland I started having dreams about food I haven’t been able to eat. Some of my pills give me heart burn, some of them make me constipated, and some of them make me nauseated. Some of them keep me awake, and some of them make me sleepy. I can’t stop taking any of them. I wake up in the middle of the night because I suddenly get itchy everywhere for no reason and it keeps me awake. I wake up in pain. I wake up with migraines. I wake up because I can’t breath through my nose. My toes are cold and numb most of the time. My hands are cold and numb sometimes, and hot and achy sometimes. I get low blood sugar. I spike a fever when I eat dinner, and I sweat when I’m cold. My knees hurt when I ride in the car too long, and my elbows hurt when I try to tie up my hair. I’m lonely but I’m afraid to be social.

Everything is an uphill battle.

Even though I am stopping the methotrexate, I still had this week’s injection because I did it before my doctor decided to discontinue it. So I’m still enjoying that nauseated, tired, headachey methotrexate hangover.

Methotrexate injections at home #lupus

My mom and I have worked together to give myself Methotrexate injections at home for the past 4 weeks. They haven’t been that bad. My mom is good at doing them. They still make me nauseated but compared to the pills there are a lot less GI side effects. We’ve been doing them once a week.

The first injection made me feel awful pretty quickly. I attribute that to getting it done in the office and still having an hour’s drive home after. I was in the sun for a bit in the car and it made me feel crappy. I had a pretty bad headache, I was nauseous, and just had an overall “icky” feeling.

The next couple injections still made me nauseated but not as bad as the first. I actually worked up quite an appetite after the nausea went away. I’m not a person who really has an appetite, I eat because I’m supposed to, but for me to actually feel “hungry” is odd. That usually comes with Addison’s Disease. But I noticed the night of the injection I was really hungry and had to get out of bed to eat something (or everything, really).

As far as results go, I’d say that since I’ve started the injections, I’m not getting jaw headaches anymore, and my knees don’t seem to blow up with pain and redness to the extent that they were before. I’m pretty tired, partly because that’s a side effect of the methotrexate, and because I increased the Pamelor I take for my migraines and it’s been making me groggy, and also because Lupus blows.

My chronic evening fevers seem to have turned into chills instead. I’m OK with that, albeit unpleasant, but it’s better than sweating your tits off all the time. At least being cold doesn’t make me want to vomit.

I got my period on Christmas(TMI, lucky me) and it triggered a flare. My headaches have been really bad lately, as bad as they were before the Rituxan, and I’ve been worried about it. I’ve had a lot more pain allover lately, especially right before I go to bed. I’m still not getting the red knees like I was though. My face is red most of the time now. It seems like doing anything even remotely active (taking a shower, grocery shopping) causes my face to flare up. I thought maybe I was getting a cold but it’s been 4-5 days now and I’m still not sick, so it must just be the lupus being an asshole.

My acid reflux, or whatever it is, has been especially bothersome lately. I’m doing the apple cider vinegar and it helps to a point but I’ve had to cut out all acidic foods from my diet. I’ve already cut out a lot of foods from my diet for other reasons so the fact that the list of things I can eat now is even smaller is getting obnoxious. I’m going to try to see a GI doctor but I don’t know what they will tell me other than “The pills you take cause acid reflux” and “Don’t eat tomato sauce” and “Give me forty dollars”.

I’ll be in to see my rheumatologist on January 5th to talk about the methotrexate and the possibility of trying Kineret.

I’m officially down 10mg from tapering my hydrocortisone and I feel OK. I managed to gain about 12 pounds suddenly. I’m at 122lbs which is the most I’ve ever weighed. I’m happy about it.

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.

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-month mark #rituxan #lupus

I had my final Rituxan infusion on June 12th. It’s been 2 months, and so far I don’t feel any different. I actually feel worse. I was told I would feel worse before I started feeling any improvement. The magic number is 3 months, so I still have a month to go before I will know if this first round of Rituxan worked or not. My headaches are still pretty bad. The imitrex seems like it’s not effective anymore. I don’t take it that much, because you’re not supposed to. But even though I save it only for the really bad days, it’s not helping anymore. I have been completely incapacitated by migraines for the better part of the year.

I’ve been running on 5-6 hours of sleep a day for at least a month. I’m pretty exhausted. I can’t take naps because I never fall asleep, and I just get a headache anyway. Pain and heart palpitations have me up by 5-6am and I rarely get back to sleep after that.

I’ve been treating pain with ibuprofen and nothing else. I can’t take anything else. I was on tramadol for a while but I started having a breathing issue (sleep apnea) and the tramadol made it worse. I was on tramadol for about 5 years before I started having a problem, so it’s still a mystery as to why it makes me have sleep apnea. There are other medicines that make me have sleep apnea, too. I was tested for sleep apnea, and they of course didn’t find anything because I didn’t take the tramadol. I feel like doctors look at me like I’m nuts when I tell them about this issue. I was given vicodin, and I found out I’m allergic, and it didn’t help anyway. I’ve never found a muscle relaxer that didn’t make me feel fucked up in some way, from vomiting to worse pain to mood swings. The fioricet I take for my headaches can help a little, but it has caffeine in it, so I can’t always take it. So far they haven’t given me anything that has provided any substantial pain relief. My rheumatologist keeps pushing antidepressants on me, and I really don’t want to take those. I tried Cymbalta a few years ago, and it didn’t help at all. It takes 6 weeks for an antidepressant to have any effect, and if it doesn’t work, you go through a weening and withdrawal period. I just can’t do it. I already feel horrible enough, and I really don’t think fucking with my brain chemistry is going to help inflammatory pain. I am at a loss as to what to do for pain relief at this point. I haven’t even talked about what pills in general have done to my stomach. Lets just say if I could say to hell with pills and inject everything instead, I’d be all for it.

I recently went to the cardiologist. I have been having really bad heart palpitations, chest tightness, and shortness of breath. It will happen when I’m just sitting. It happens when I eat. I don’t eat hardly any salt anymore because of it, but it will still happen. It’s like the digestive process itself causes palpitations for some reason. They wake me up in the morning and happen when I go to bed at night. There doesn’t seem to be one specific trigger, more like a little of everything. They are bad enough that I can’t do anything physical. My blood pressure has been high, in the 140/80 range most of the time, and my heart rate can jump anywhere between 70-115 for no real reason. It’s pretty uncomfortable. I wore a holter monitor for 24 hours, and dealt with the leftover adhesive and bruised ribs for another 48. The doctor’s analysis was basically “Yup, you have palpitations” but that there was no irregular heart beat. I had an ultrasound on my heart and carotid artery. There was no indication of inflammation or lupus activity there. He did mention that sometimes the inflammation can be so small that it does not show up in an ultrasound but can cause symptoms. He talked about putting me on an aspirin regimen but since my stomach is a mess that he didn’t want to give me another pill to upset it. He seems to think that heartburn could be the cause of my palpitations, and while I don’t think it helps, I really don’t think that’s the main issue.

The cardiologist also gave me norvasc, a calcium channel blocker for my high blood pressure. He said it might help with my headaches, too. I used to be on nifedipine for my raynaud’s, which is also a calcium channel blocker. It gave me a nice blood pressure but it gave me terrible headaches and heart palpitations. The norvasc works a little differently, so the doctor was hopeful that I wouldn’t have a problem with it. So far it hasn’t helped my blood pressure that much, and today I felt like crap after I took it. If only they could find the real problem instead of just handing me some pills.

I consulted Dr. Google and came to the conclusion that I need to be tested for overactive thyroid. I’m too hot all the time, I’m skinny no matter what I eat (trust me, it’s a curse) my hair is somewhat thin, I get pain in my throat that is unlike a sore throat but feels more like an ache in my ‘glands’, and, the heart palpitations and elevated blood pressure. Ever since I started treating my stomach issue, I’m hungry all the time. All of this points to thyroid.

Sometimes you have to google things. Sometimes doctors don’t come up with the answers, and you have to narrow it down to a certain specialty in order to obtain a diagnosis. I’ve successfully diagnosed myself before, and it wouldn’t surprise me if I was right this time, too.

My rheumatologist was in a panic about the heart palpitations, as if I hadn’t been complaining about them for a few years. She rambled on about cytoxan for heart involvement and made me lose my confidence that Rituxan was the right choice. It’s weird to feel like you have the wrong medicine running through your veins. I don’t necessarily feel that way anymore, but I am switching doctors. I need someone with more balls, to be honest. She’s never been very sure of herself, and makes it a habit of dangling the proverbial “you’re going to get better with this new medicine” carrot in my face. I just can’t take it anymore. I need someone to tell it to me straight and someone who can make decisions without that “….well, I don’t know….” undertone.

I’m having a terrible time with my memory. I’m having a terrible time typing and remembering to spell things. I’ve never had a problem with spelling before. I was the kid that got 100% on spelling tests. Sometimes my cognitive abilities are so compromised that I can’t watch a movie. I can’t read things, either. It’s frustrating and sad.

In conclusion, my pain is bad, my headaches are bad, I’m not sleeping, my heart is pounding, I can’t remember shit and I need a new doctor. Where the fuck is the Wizard of Oz?

And no, I don’t have POTS.

Tuesday’s appointment #lupus

I went to see my rheumatologist on Tuesday. It was a strange appointment. I feel like sometimes I leave there more confused than when I walked in, which has made the experience in general frustrating and unreliable. I was in a brain fog, as usual. My mom is always there to help me organize my thoughts and remember things I wanted to tell the doctor. I opened up by telling her I was having really bad heartburn issues that wake me up really early in the morning and have changed my diet. I told her about my high blood pressure problems I’ve been having lately and the bad heart palpitations I get after I eat and when I get up in the morning, and when I first lie down at night. It’s been a real issue for me for a few years, and lately it’s been a lot worse. But for some reason this time she decided to actually take them seriously. She seemed pretty worried about it. She talked about how it could be a nerve conduction issue, suggesting inflammation in the pathway between my brain and my heart/stomach. She went off into a tangent about Cytoxan, and about how she hates using that drug, but that Rituxan wouldn’t help that kind of problem. She also talked about how I would have to take a pre-drug to help prevent me from becoming infertile from the Cytoxan, and that it’s really expensive. We got back to the subject of heartburn when she started talking about having an upper endoscopy done. I told her the heartburn isn’t something that is constant, that it flares, and when it flares it goes on for weeks. She seemed irritated when I said that, and said she “misinterpreted” what I said because it was the first thing I told her about. I didn’t realize there was a certain order I was supposed to tell her things, especially with my concentration difficulties, I just went with the first thing I remembered. And the fact that it isn’t a constant issue doesn’t make it any less important or less alarming, so I don’t know why she acted like I mislead her. She had a lot of sciencey things to say to me as usual, about compliment levels and all that. She keeps telling me that they’re normal except for one being slightly off. She also told me that they don’t always correlate with lupus activity or how a person feels. It made me wonder what the point was of her telling me these results every time. She never bothered to explain to me what the hell it means anyway. She said I also tested “false postive” for kidney involvement, and that a lot of her patients are testing false positives. It made me wonder how she would know one way or the other. The lab she uses, from my understanding, isn’t nearly as accurate as Cedars-Sinai, and it makes me uncomfortable that my tests are sent there sometimes.
The fact that she threw another drug into our conversation, and a really frightening one at that, makes me uneasy. With the Rituxan, it makes me wonder if I have the right drug in my body again. If she had listened to me about my heart palpitation problem sooner, perhaps I’d be on a different treatment now.
I’m tired of how wishy-washy she is, her lack of confidence in herself, her inability to make a decision sometimes, and her unavailability. I’m ready to switch rheumatologists.
I have a cardiologist appointment on Monday. She got me an appointment right away. She is really concerned. But I just don’t understand what took her so long to be concerned about my heart when I’ve been bitching at her about it for a while.
As far as the effects of the Rituxan, I don’t feel anything yet. I feel pretty crappy, actually. I’ve had to take extra hydrocortisone to treat my Addison’s, because I can feel my cortisol drop in the afternoon. It makes me want to vomit. I can hardly get through the day unless I take extra. My rheumatologist suggested the stress-dosing as the cause of my heart palpitations, but I really don’t stress dose unless I absolutely have to, and it’s a replacement dose, so I shouldn’t really have side effects from it. Besides, I’ve been having the heart palpitations since August 2012, and this recent stress-dosing problem is only as old as my Rituxan treatments. I’ve been taking Hydrocortisone since 2005 and haven’t ever had a problem with it. I really don’t think that’s it. Plus, if I’m ready to vomit, I have to stress dose, unless I want to end up in the ER for Adrenal Crisis. My heart palpitations happen at very specific times, and it never correlates with when and and how much Hydrocortisone. It just doesn’t make any sense to me.
I’m pretty annoyed, and ready to see a doctor that has some balls. I know I am a complicated case and I need someone who is fascinated rather than intimidated by it.

One Week Post-Rituxan Completion #lupus

My doctor called me Wednesday to tell me my white blood cell count is low, and she wants to draw blood in a couple weeks to see if it’s gone back up. It’s at .9 right now (translates to 900, and normal range is within 4,500 to 10,000 cells/mcL, please correct me if I’m wrong). It wasn’t unusual for my WBC count to dip a little low while on the Benlysta, so it’s not surprising to me that the Rituxan could be doing the same. In the meantime, I can’t really spend time in crowds. My family is taking extra precautions in cleanliness when coming home from public places. I have to be sure to use Neosporin every time I get a cut, and I can’t eat uncooked fruits and vegetables.
I have some yellow spots in my throat for no reason. I’ve had it once before. They hurt. It’s probably some kind of cold virus/sore throat-type-thing that I wouldn’t normally be susceptible to if my WBC count wasn’t low. Last time, they just went away without having to go to the doctor. I’m hopeful it will clear itself up again. I don’t want to go to the doctor and be around more sick people. I feel ‘fine’ otherwise, I don’t feel like I have a cold.
I’m still running the same fevers I’ve had the past couple months. It’s been pretty obnoxious. Ibuprofen and Tylenol help, but not 100%. I can’t stand to feel the slightest bit of warm air without getting hot and sweaty. But at the same time, I’ll have a couple hours where I have the chills and I can’t get warm. I change my clothes a couple times a day to try to accommodate my body temperature.
My underarms aren’t irritated anymore for the time being. I haven’t had the burning rash on my neck anymore, either. My skin still seems kind of irritated and sensitive overall, but there is no rash. I am sun-sensitive as all people with lupus are, but I feel like it’s been more bothersome lately. I absolutely can’t stand the feeling of the sun on me. It makes me feel sick. It makes my pain so much worse.
I’m having a hard time getting through the day energy-wise. By the time the evening rolls around, I’m too tired to occupy myself, and I get really bored. I’m not much of a ‘nap person’, I always get a headache from naps, and sleeping during the day doesn’t help my fever. I try to tough it out until about 10pm so I am still sleeping my normal hours. It’s been hard because I’m losing sleep between 4am-and 7am because of headaches, body aches, or stomach aches. They like to get me up early, and by the time I can figure out what to do for it, by the time the medicine kicks in, I’m not tired enough to go back to sleep. I’m getting 5-6 hours of sleep at the most.
My urinalysis came back clean. I’m pretty happy about that. So it’s just the Rituxan causing burning when I pee. I’m actually starting to feel better regarding that as well. I’m obviously not very shy about talking about it, am I?
The headaches are still bad. My neck and back have been pretty tense too. I wish I could get a massage but the increased blood flow to the area makes my head hurt more.
My blood pressure has also been a little high. Not sure what that’s about. It’s pretty unusual for me. I’ve been waking up to heart palpitations. Whenever I eat a meal I get them too, even though I eat a low-salt/preservative-free diet. Just another bullshit symptom, I guess.
My brain is still in a terrible fog. It let up a little today, which is why I’m able to write. Yesterday was really bad. It gets so bad sometimes I feel like I can’t do anything. Everything becomes really overwhelming. Sometimes it makes me want to cry because I just feel so ‘all over the place’.
I guess I’ve just been sad lately. I’m tired of the ‘daily grind’. I’m bored as hell because I don’t usually feel well enough to occupy myself. I feel like Bill Murray in Groundhog Day. I’m just trying to hang in there until the Rituxan does its thing.

It hasn’t helped that my internet connection is shit because of the World Cup breaking internet streaming records. Yay sports, but I’ll be glad when it’s done because I miss writing and talking to people. The internet is my social life. It is for a lot of sick people. I can’t hang out at bars, or whatever people do these days, so I hang out on Facebook. It helps me feel a little more normal. As a rule, people don’t make accommodations for me so I can hang out with them. My health gets in the way of plans and no one really offers to do activities that would be easier for me, they just leave me out instead out of laziness. Maybe social media seems trivial or irritating to other people, but I’d be sad without it. I can still talk to people and not have to worry about ‘making plans’ or whatever. I’m not afraid to admit I’m lonely, but I’m also not shy about pointing out that people suck, and most of the time they disappoint me, and that dealing with being lonely is easier than disappointment. It’s been a conflicting position to be in.