Wednesday, December 12, 2007

The Long, Winding Road

I'm still stunned at how hard the dental visit hit me. I totally understood why my jaw hurt so much that I could barely move it to talk or eat, but why did every other joint in my body seem to join in the party?

I saw my internist on Friday and she put me back on Prednisone, which hasn't seemed to do much for me in the past but I'd never had this much joint pain going on.

I started it on Saturday morning -- 60 mg/day, a moderately high dose from what I understand although nothing like the 125mg three times a day I was getting in the hospital last July!

And I think it might actually be helping ... although it's hard to say if it's the Prednisone that's making my joint pain lessen or just that everything is calming down after being exacerbated by the dental visit.

On the other hand, the chest pain that I always think feels like heart pain but they tell me my heart is fine has gotten at least 200 percent worse. Which is actually more like how I felt last summer, when I had very little actual joint pain but really bad chest pain.

So am I getting better? Or worse? Or just trading symptoms?

Meanwhile, I had to start checking my blood sugar again because of the high dose of Prednisone, and it looks like those are out of whack again too. I'm waiting to hear from my internist whether I'm going to have to use insulin temporarily again. Last night, about 90 minutes after dinner, my blood sugar was 200. At 11 p.m., four hours after I last ate, it was still at 152. This morning, at least, at 6 a.m., it was down to 80, which I think is relatively respectable.


On Monday, my internist called to tell me that she had spoken to the new rheumatologist she wants me to see. She summarized my case for him, and he wasn't too excited about my low positive ANA, moderate positive anticardiolipins or the monoclonal proteins. Like my last rheumatologist, he was mostly fascinated with the fact that I tested postive for parvovirus (aka the mild childhood rash disease known as Fifth Disease) back in August.

He said he'd read several case reports about adults having debilitating, severe joint pain that lasts for up to a couple years. So maybe that's really what it is here. But I really don't think so. And my last rheumatologist said that even if the joint pain lingered, it should have been lessening and not getting worse. And that's really all it's done is spread to more joints and intensify the amount of pain.

This whole thing is just so incredibly frustrating. I'm tired of being sick. My family is tired of me being sick.


Weird symptom #148: On Monday night, when I was getting ready for bed, I noticed that my face was really red. It essentially looked like what I had in early July that made me wonder if I'd caught Fifth Disease from Ellie, who'd come down with it a few weeks earlier. That time, it lasted a couple days. This time, it was mostly faded by Tuesday, but I'm still kind of blotchy red. This time I followed advice from one of my net.buddies who has lupus who told me to always take a photo of any weird rashes so you can show them to the doctor the next time you go.

It's a pretty unflattering photo, but here it is:

I definitely wasn't sunburnt, didn't have a fever, didn't feel a hot flash kind of thing. My face was just bright red. And it isn't normally that blotchy red. Very, very weird, if you ask me.


SharonMV said...

I've been meaning to post again -just too sick recently.
I'm wondering if you might have fibromyalgia in addition to the UTCD(or parvo or ?) Many with Lupus (including me) & other autoimmune problems also have fibro. It's not just muscle pain, it can affect the soft tissues around the joints & feel like joint pain. Some rheumy's are good treating fibro, but some still ignore it - but your internist can help. Since you're having significant pain despite powerful antiinflammatory meds (prednisone) its worth checking out. Especially as there new meds now that can help a lot.

The chest pain could be costo-chondritis, a very painful inflammation of cartilage of the sternum and/or ribs. If it is, the prednisone should help.

At least the new rheumatologist is interested - whatever the reason. This will encourage him to investigate. Rheumys are not impressed usually unless you have lots of positive blood results.

I have the same blood sugar problems with prednisone - have to up my meds when on it. Maybe an oral blood sugar med will work this time as you are on a lower dose than before. Another drug to be wary of is the antibiotic tequin - as it can induce diabetes (happened to me).

Your road may to diagnosis may be long, but you are headed in the right direction. I'm confident you won't have to go over 15 years without proper diagnosis like I did. And for me the road continues - I've been on treatment for my immune deficiency for 15 months now & am not much better. Having Lupus as well makes things very difficult. Recovery of any sort may still be far away for me, but I have hope of reclaiming some small part of my life.


Aviva said...

Thanks for your thoughts, SharonMV! I've also wondered about fibromyalgia, and it's something my first rheumatologist thought was a possibility. I definitely had plenty of the necessary tender places when he poked at me!! I'm sorry to hear your recovery is going slowly despite the new treatment for an immune difficiency. :(

Can you tell me how to find a clinical immunologist? My daughter's allergist's business cards say he's an immunologist, but I wasn't sure if that was different than a clinical one? I'm just so clueless when it comes to all these specialists.

I hope you're starting to feel better. I was thinking about you when I hadn't heard from you in awhile and hoping you were just busy but not too sick. Hang in there. I really do appreciate the support and encouragement!!