Friday, April 4, 2008

Rough Week+ ...

I'm not really sure what, if anything, triggered this, but I seem to be having a combination of a flare-up of sorts and an increase in symptoms I believe are caused by the Plaquenil.

So far, I'm still tolerating the Plaquenil, but I plan to call my rheumatologist next week to discuss the side effects and see if there's anything I can do to help relieve them. I'm hoping he will at least give me a prescription for Compazine, a drug I took for years while battling my chronic stomach ulcers.

The nausea started off pretty mild, but it's been getting worse over the past 10 days or so. I haven't thrown up yet, but the number of times that I feel the urge to vomit and have it come at least partly up keeps increasing. Not a pleasant sensation, although a somewhat familiar one from the years of nausea from the ulcers. I have a small number of pills left over from the last time I had a prescription (a couple years ago), and I've taken a few and they do seem to help.

I'm also having lower abdominal cramps, which I didn't realize were a possible side effect until I decided to decipher the really small print pharmaceutical info that came attached to the Plaquenil bottle. (I'd gotten an original bottle of 100 as part of my prescription for 270 of the pills.) Since we'd been having a tummy bug going through the house, I had attributed the cramps to that. But when the other tummy bug symptoms went away (trust me -- you don't want details! :), I didn't understand why the cramping didn't.

I'm also having issues with body temp sensations. Not fevers, but one minute I'm so hot I'm sweating and just a couple minutes later, I'm shivering. Last time I was on Plaquenil (for maybe 10 days total), that kicked in early on and was much more severe than I'm currently having. But it's still uncomfortable and adds to my fatigue.

I think my energy levels are about as low as they've ever been, other than the first week or so home from the hospital. I haven't left the house this week other than for acupuncture appointments (2) and a visit to my internist, where we discussed my pain relief options. But that's another post for another time. Suffice it to say that I wasn't really happy with my options, which included long-acting painkillers that would essentially make me unable to drive myself anywhere, ever.


Although the official "anniversary" of the start of this illness isn't until June 1, I've pretty much been sick since my first round of pneumonia that hit me in early March 2007. I didn't really start feeling human again and able to get back to socializing and Ellie's playgroups until mid May, and even then I was somewhat low energy. And then I got sick again June 1 ...

I need to wrap my mind around the idea that I may never be fully well again (although I sure hope I get better than I am right now!), and learn to accept it so I can learn how to cope with it. Other people manage it, eventually, even if they never get back to their former selves. And I need to find a way to do that too, even though I will continue to hope that my illness is temporary and I will ultimately recover.


I did make my internist laugh when I saw her Wednesday. Once a year, the Portland Clinic makes you fill out a form so they can update their records. Typical stuff: chronic conditions, medications, why you're there that day, etc. Under the chronic conditions, I listed my asthma, allergies, hypothyroidism and "Mystery Illness."

She got a laugh out of that one. :) I'm always at a loss about what to say when they ask why I'm there that day. "Well, I've been sick since June 2007 and was hospitalized in July 2007 for 8 days, and I've seen a ton of specialists and no one is sure yet what the heck it is I've got, and this is a follow-up on my ongoing illness."

My internist told me to just start telling them I'm there for "joint pain." :)

She also laughed with me when I told her the rheumatologist said last time I saw him that if what I have is not chronic parvo, that then he would diagnose it as a mild case of Lupus. "Mild?" she said. "You've got the worst symptoms of anyone I've ever seen with 'mild' Lupus!" We finally decided he meant that it was mild in the sense that none of my organs have shown any sign of involvement yet. But the involvement of my joints and my pain and fatigue levels are anything but mild.


I asked my internist whether it was possible that I have Fibromyalgia in addition to whatever the hell else it is I've got. I've asked her that before and in the past, she was pretty negative. But in addition to all this joint pain, I have tender spots pretty much all over my entire body. If you touch me, it hurts where you touch.

This time, she admitted I probably did, but that it was a "comorbidity" and that in cases like this, they focus on the main problem and hopefully that treatment also helps with the fibromyalgia. She did ask if I wanted to try Lyrica, the new drug approved for treatment of Fibromyalgia that the ads are all over TV and magazines for, but I said no. For one thing, I've already got enough pills to take right now. For another, the list of side effects looks pretty nasty and apparently are very common so that's not somewhere I want to go right now.

I do strongly identify with the TV commercial where a woman stands in front of a mirror and says something like, "If only you could see what I feel" and then, in the mirror, you start seeing these massive bruises around her neck. I can definitely identify with that. So many times, Ellie touches me and I cringe because it hurts like she's pressing on a bad bruise, but when I look under my clothing, there's no bruise there.


SharonMV said...

Sorry that you're having such a tough time lately. Yes that "mild Lupus" label - I've heard lots of complaints about that. You're right - rheumy's call it mild if it's not destroying any of your major organs. Hope you'll be able to deal with the Plaquenil side effects. I haven't tried Lyrica -I get triger point injections & am on Cymbalta.

sorry that you haven't been able to get out. I've been stuck at home for a long time, but am hoping that will change soon. Recently pretty much stuck in my room for a month, but having a little more freedom now that I got the cast off my leg.

It's difficult marking those anniversaries. I hope you won't have a second anniversary. May the next year see be a much healthier one.


Shari said...

I didn't do well on Plaquenil. You lasted much longer on it than I did. Lyrica didn't help me and left me in a "fog." Hope you will get some relief with the nicer weather coming-it does seem to help me.

On a different note, I see you read a lot. Didn't know if your husband is interested, but Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn, published by the Arthritis Foundation is excellent and my husband said it was the best book he read. It really helped him to understand what I was going through and to cope with his feelings also.

I will keep praying for you.

Aviva said...

hey Sharon MV -- thanks for confirming that "mild lupus" explanation! What are you injected with on your trigger points? Cortisone? I'm on Cymbalta too. I went through a lot of anti-depressants when I had post-partum depression back in 2005, so when I started getting depressed at how long I'd been sick with no improvement (last fall!!), I just asked to be put back on the Cymbalta. It helps me not get all weepy about how sick I am about being sick. And I'm more mellow dealing with my kid and husband.

Shari -- How long were you on Plaquenil? Sorry neither it nor Lyrica helped you. I've heard from a lot of people that Lyrica isn't living up to its advertising. But it must be helping some folks, and that's better than nothing, I guess.

Thanks also for the book rec. I'll ask the library for it and hopefully get my husband to read it. He doesn't get much reading time between working long hours, child care and house/yard stuff. But I think he'd see that kind of book as worth his while, particularly if it's well written.

Shari said...

I was on it about a month. It made me really feel ill. I felt worse on it than off.

Sherril said...

Ai yi yi. Sorry things are so hard for you now. I take Cymbalta also. Helps with depression + pain, but makes me nauseous. I HATE to be nauseous. So I'm taking Zofran for that. I hate to do that, take another med for the side effect of the first med but I was crying about everything and I think you feel me on how miserable that is. And for me it was potentially dangerous depression. Lyrica caused weight gain for me plus being expensive and who needs that! I've been taking Neurontin for years, kind of like the first generation for neuropathic pain, before Lyrica. It works OK for me, and Wal-Mart has it for $4.

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