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.



    • thanks for thinking of me πŸ™‚ It’s been really hard lately. But it’s also been so long since I felt normal that I dont even remember how that feels anymore. It’s a curse and a blessing I guess. I’m really frustrated though. Tired of having the doctor promise me the moon if I become a lab rat for however many months, and then not seeing any results. I’m looking forward to seeing this other doctor, maybe he can straighten things out.

  1. Hello! My name is Tommie. I’m a Japanese female with lupus. I was diagnosed with lupus in 2000. It’s nice to know you are studying Japanese! I heard the news about the earthquake in California. Is everything okay? I hope you are feeling better today πŸ˜‰

    • Hi Tommie, nice to meet you! I was diagnosed with lupus in 2012. I really enjoy studying Japanese and learning kanji, I think kanji is beautiful. I hope I can use my Japanese in Japan someday. Luckily, the earthquake was far from me, about 650km north of my town, so I didn’t feel it. I have felt earthquakes before, but not big earthquakes. Thanks for writing to me, feel free to write more! I hope you are doing well today πŸ™‚ I also have twitter πŸ™‚ @chronicallyjill

      • Hi Jill! I’m glad to hear you had no damage from the earthquake. As you know, each kanji has a meaning. When parents name their children, they consider the meaning and select kanji. It might be interesting to ask the Japanese what kanji is used for their names. I sometimes visit a temple and practice shakyo (sutra copying) with a brush. I don’t know well about Buddhism or the sutras but it makes me calm to write kanji without worldly thoughts. I read your latest blog post. I’ve been through pulses (1 gram of Solu Medrol for 3 days) and a spinal tap. It must be hard not to be able to sleep well. I hope you have a good sleep tonight!

  2. So many things you said in this post truly resonated with me. I was also prescribed Cymbalta (by my rheumy) to help with the “fibromyalgia or muscle aspect of your [my] pain…” She was wrong to attempt this. I had told her when I first met her over a year prior that SSRIs do NOT bode well with me. Sure enough, within a couple of weeks of taking it, I started to have thoughts of suicide, couldn’t sleep, became paranoid, and more.
    Like your doctor suddenly freaked out about your heart issue after such a long time, mine suddenly freaked about my liver (after a year pain and high levels) and took me off my chemo. It was the MOST PAINFUL experience of my life. She had NOT given me any idea how painful going off it would be. When it left my system, and the inflammation it had been controlling returned, my entire body felt broken.
    Getting the right treatment is so hard. I think so many doctors are shooting arrows at the stars in search of a remedy.

    • It’s odd to me that SSRIs, and antidepressants in general are being prescribed for pain relief. I feel like I’ve never heard of them being successful for pain. I’m on pamelor now for migraines which is a tricyclic and I’m still having headaches every day, and migraines a few times a week that are debilitating. I might have a couple hours a day where I feel “normal” that I didn’t have before, which is nice, but I dont feel like I am getting substantial relief. It’s barely worth taking it. My neuro had to raise my dosage because I didn’t feel like myself. My mood was all over the place. I’m better now but still don’t really like taking it. Antidepressants are really hard to stop too, I had a hard time when weaning off the cymbalta. I just came off methotrexate and while it didn’t help me much at all, there were a few little things that I realized it was helping when I stopped taking it. My jaw hurts again. I get a headache every time I chew food. It’s really painful, enough to deter me from finishing my dinner sometimes. I’ll be starting another treatment soon, probably a biologic. I hope you can find the right treatment soon. It seems like it takes so long.

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