Treatment plan #lupus #stillsdisease

This morning my rheumatologist called to let me know that I’m all clear to start a new treatment. I’m going to be doing Actemra infusions for Still’s Disease. It’s another biologic, and the IV infusions will be once a month, much like the Benlysta I was getting last year. Actemra can also be injected at home but he said that it’s not as effective, and I could potentially see results sooner with the infusions. The side effects sound similar to Benlysta, which wasn’t bad at all. It takes 3-6 months to see improvement. I’ll be starting them sometime next month.

We are trying the Actemra first because the Kineret is a daily injection that can be painful for some people. I don’t mind getting infusions. I’ll be glad to finally be on a treatment plan.

I talked to my Gastroenterologist today. One of my blood tests said something about “borderline Salmonella” and he explained that it was just the existence of the antibody, not the disease. That means at one point I had Salmonella but I don’t have it now. I’ve moved the endoscopy to the middle of April. I have to work around the migraines I get from my period, because I’m not supposed to take ibuprofen for 5 days prior. It’s going to be really hard, since all of my pain is caused by severe inflammation, including my headaches. I’ll be glad to get the whole thing over with.

I had the ultrasound done on my kidneys on Friday. They’re checking the blood flow. The technician said that everything looked good, but I’ll get a more complete assessment from the doctor on Friday. They’re making sure my high blood pressure isn’t caused by narrowing arteries around my kidneys. I’m hoping the nephrologist can point me in the right direction for my high blood pressure. I had to fast for 6 hours before the ultrasound. I was alright with not eating, but drinking minimal amounts of water in that time set me back a few days. For some reason it made me really tired. I felt like I spent Sunday recovering from it. The same thing happened to me when I had the spinal tap. My stress reaction to procedures is usually delayed by 2 days. I stress dosed my hydrocortisone and I felt better after.

I have a migraine right now and one of my hands is feverish from the arthritis. Typical night for me.

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Hello, March #lupus #blog

On Monday I had an ENG done. I was pretty worried about it because I knew it can cause migraines and vomiting. An ENG is a test for your inner ear, and also your eyes, to check for causes of vertigo. I get dizzy when I look down for prolonged periods of time. It seems like it’s something that flares, because some weeks are worse than others. I’ve never been a person that got sick from carnival rides. I play video games regularly and have never had a problem with getting dizzy from them. However, I do get dizzy from riding elevators, oddly enough. They’re looking to see if I have any damage from the lupus in my inner ear.

The test can take up to 90 minutes. For the first part, I had to wear headphones that played a clicking sound in each ear pretty loudly while I turned my head to the left and right. I had electrodes on my chest and neck. The next series of tests involved following a red dot on a screen in the dark. I had electrodes on my face around my eyes. I didn’t have dizziness from either of these tests. The technician then had me sit up and helped me to lean back and turn my head quickly. This made the blood rush to my head, but I did not seem to get vertigo from this either. I also had to lie down on one side in the dark, and then switch to my other side, which also did not cause a problem.

So far no vomiting, and no headache.

The last part of the test was a bit more difficult. I still had the electrodes on my face. They had me lie down on my back and they irrigated each ear with cold water, and then warm water for 30 seconds. The first irrigation was the worst. The cold water in my left ear made the room spin. After each irrigation, I had to sit in the dark. I had to hold onto the chair. The last 3 weren’t as bad, and the warm water bothered me less than the cold water. The warm water feels hotter in your ear than it really is. Having water shot into my ear in general was uncomfortable. It made me feel a little panicked. I was glad when it was over.

I did not end up getting a migraine or vomiting from having this test done. I’ve had a sore throat since I did it, but I don’t know if it’s related at all. I’ll get the results when I see my neurologist.

I stress dosed my hydrocortisone to support my Addison’s Disease for this test. I always have a delayed stress reaction after difficult tests that night or the next day. It usually makes me feel shaky and lightheaded.

On Thursday I went to see an Infectious Disease specialist. My rheumatologist referred me to one so they could run some tests to rule out infections like Valley Fever, mosquito-born diseases, and tuberculosis. My rheumatologist is checking these for two reasons, to make sure I don’t have anything that could be causing my current symptoms, and to make sure I’m clear to start a new treatment. Being on other immunosuppressive drugs in the past could have left me more susceptible to these types of infections.

The ID specialist was nice enough. His office was really hot though. My face and my chest blew up with a blotchy red rash. My rashes come up so easily now. I have at least one episode every day. Doctors’ attitudes change when they see my lupus in action like that. It seems like it makes them realize the gravity of my disease activity. Sometimes I feel like some doctors don’t take my lupus very seriously, or they just don’t realize how ill I really am.

Prior to my rash making its appearance, he had talked about a couple vaccines he thought I should have. He mentioned the pneumonia vaccine. I’ve had a flu shot but I’ve never had the pneumonia shot before. I believe the pneumonia vaccine is good for 5 years. I didn’t object to it, I just didn’t realize I was a candidate for it, as it has never been recommended to me before. Being the age that I am, he also mentioned the HPV vaccine, and he seemed surprised that I had not already received that series of vaccines. That has never been recommended to me before either, and I have been going to doctors regularly for quite a while. I am for vaccines, but I am not comfortable with the HPV vaccine. It’s too new, I have lupus, and I have heard nothing but bad things about it. I did a little research online, and a common side effect is fainting.

A COMMON SIDE EFFECT IS FAINTING.

I’m sorry. I’m not doing it. I don’t need to do something to my body that can’t be undone right now. My life is already upside down because of all my health problems. I don’t even have everything diagnosed yet. And sleeping around isn’t a top priority. Its not a risk I can take. I feel like at this point I’ll be lucky if I make it to 30 without catastrophic organ damage, or other irreversible complications from lupus.

Anyway, back to my point. The doctor got real quiet about his vaccine trip when my rash came up. It was a pretty violent rash, too. I think he felt a little bad after that. He was selling it so hard, and kind of judgmental about it too. I’m not going to worry about it right now. I’m gearing myself up for the next treatment plan, whatever it may be.

The ID specialist wrote me a prescription for a bunch of different tests, so on Tuesday I’m going to the hospital to get some blood drawn.

I’m also going to the cardiologist that day. I’m having high blood pressure even though I’m on blood pressure medication. At this point, I can’t even eat crackers without the tiny amount of salt sending my blood pressure through the roof. I’m considering asking them to do an ultrasound on my heart again to make sure there isn’t lupus activity there, and I also might ask for a referral to a nephrologist to make sure there isn’t a problem with my kidneys causing the high blood pressure. My urine always tests normal but I think it would be good to get some other tests run. I am concerned that I’ve had this sudden high blood pressure for a few years and no one is looking into why it’s happening. My blood pressure used to be great. It’s effecting what I eat and how active I am able to be, and it feels horrible. It certainly isn’t helping the headaches.

This week I am also going to see a dermatologist about my rashes. I might have to get some biopsies done. Then my rheumatologist will use all this information from the other specialists to figure out what kind of disease activity is going on so he can pick the most effective treatment for me.

When I talk to my neurologist about my ENG I am also going to mention that I am getting headaches when I chew, and I am also having pain in my face and nasal cavity that seems to go with my headaches, but does not feel allergy related in any way. I am also going to mention that while the imitrex is sometimes helpful for migraines, it makes my blood pressure go up and causes me to be dizzy.

My aunt flew in from Boston this week, and I saw her on Friday. I was pretty worried about spending time with someone who had just spent time in airports. I just had to trust that she was good at avoiding germs. There are a lot of things that I have to spend a decent amount of energy worrying about that other people don’t think twice about. It’s exhausting. Last time I had a flu I spent 5 days in the hospital, and my white blood cell count almost bottomed out. I didn’t even know I had lupus yet. It makes me worry about what would happen now, since I would consider my disease to be even more active now.

My current symptom check-list looks like this:
-Hot red itchy rashes
-pain, rashes, swelling and loss of range of motion in joints, particularly hands, knees, and neck
-constant heart burn
-high blood pressure, even with medication
-heart palpitations with no cause
-required bland diet
-chronic migraines
-headaches and jaw pain from chewing
-nasal and facial pain with some headaches
-dizziness when I look down
-chronic constipation
-burning when urinating with no infection
-eyes are light sensitive
-skin is sun sensitive
-drinking twice the daily recommended amount of water
-lower back pain
-muscle weakness, pain, and tremors
-numbness, cold, and discoloration in feet
-hair loss
-loss of sleep, usually from pain or heart burn (4am)
-dry irritated eyes, can’t wear contacts
-trouble with concentration, memory, and confusion
-trouble swallowing

That’s the thing about lupus. No two cases are alike. My rheumatologist has to make sure I don’t have other disease activity besides the lupus. I am hopeful that I will be on a new treatment in the next couple months. I’m not expecting a miracle, but a shorter list would be nice.

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.

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.

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.