One Rough Week

Man, it has been one ROUGH week. I had a great weekend last weekend. I spent it with my cousins – their grandparents and aunt (and her son) were in town, so it was a full house. It was fantastic. Good food, the feeling of family, exceptional.

Then came Monday. I thought Monday would be good  - I had a great weekend with lots of sleep and healthy food. No such luck. Monday was brutal. I could only manage to crawl out of bed to use the bathroom – and that too only when I had to pee so badly I couldn’t hold it in anymore. Tuesday was not much better. The fibromyalgia pain seems to be getting worse and worse, it feels like every muscle is on fire but not on fire.. maybe pins? It’s hard to explain the pain. My joints – even the ones that aren’t very swollen from the lupus flare up – HURT. A lot. It just seems to get worse and worse.

The only reason I dragged myself out of bed on Wednesday was that it was a really bad day of school to miss. Some things can’t be made up, so I went. I ran into my doctor that day – he didn’t look pleased at the sight of my joints, but said he hoped the Lyrica (pregabalin) kicks in soon… but it ended up being a 12 hour day. And I hadn’t started studying for my test on Thursday. Which meant 3.30am bedtime and only 4 hrs of sleep. Then Thursday was another 12 hour day.

I COLLAPSED into bed. I slept for 8 hours, but then had a 3.5 hour class today – the kind where you’re watching a procedure and there was nowhere to sit down. I’m sure you can just imagine how much fun that was. My poor bed must be wondering why I never get into bed anymore. I just collapse onto it like my knees have buckled. I feel like someone beat me up with a baseball bat. And after 3.5 hours on my feet (plus the 15-20 min walk in the heat each way) I feel like I did before I slept for 8 hours. I feel like I didn’t sleep at all. Ughhhh.

I have lots of studying to do this weekend, but when will I catch up on sleep?! Sigh. I hope next week calms down a little, because this can’t continue…

Lupus, Me and the Fibromyalgia Makes 3.

I just got back from an appointment with my rheumatologist.

He advanced the prednisone taper a little. Yay! The rest of the news wasn’t as much fun to hear. He thinks the methotrexate just hasn’t had time to work yet, so he didn’t mess with that except to split the dosage over two days to try and relieve some of the dizziness I get with it.

Then he added pregabalin. He thought I might be developing fibromyalgia the last couple of appointments and even tested for the fibromyalagia points two weeks ago but only one was mildly tender. This time almost all the points he checked were very tender. He said a lot of people with SLE develop fibromyalgia. Apparently amitriptyline is also very effective for fibromyalgia pain (and much cheaper) but it takes much longer to kick in. Since it's developing so quickly, he said its better to give the pregabalin, because in his experience getting the fibromyalgia under control faster seems to lead to it going away as the flare up fades more often.  (As opposed to still having the fibromyalgia once the flare up clears up.) … so, fingers crossed!

Sigh. Will it never end?

You Can't Always Get What You Want

If there’s one thing that lupus teaches you, it’s that. It stops you from doing the exercise you want, it keeps you from the Peace Corps, it limits your career choices, your hobby choices, your (usable/enjoyable) free-time, and, sometimes, your friend choices. Lately, I’ve come to consider these limitations just more symptoms of the disease.

I went back to the doctor yesterday. He raised the methotrexate dose AND reset the prednisone taper back to 30mg. I had worked my way all the way back down to 9mg, so that was quite a blow. I get so jittery at 30mg! Sigh. On the plus side, at least he doesn’t think I need to take a break from school…

Another Appointment Coming Up

Now, as much as I know that my doctor is my ally, I have to say I’m dreading my appointment on Tuesday. The methotrexate hasn’t kicked in so far, and the increased prednisone may be helping the joints but it hasn’t made an impact at all on the fatigue.

Sigh. Do you ever feel like going to the doctor never brings anything but bad news your way? It feels like each time I go all that happens is that my med dosages go up or new meds get added on.

I think at this point I guess I’m getting scared that my doctor will tell me I need to take a leave of absence from my program, and I’m really not ready to do that yet… but then, how often does lupus leave decisions like that up to me, right? 

More Meds. Joyous.

I had a rheumatologist appointment yesterday. Things were not going well. My prednisone taper had me feeling great in February, but then when the dosage dropped in March, my symptoms started coming back. The fatigue. The swollen and painful joints. Etc. Etc. Etc. It was terrible. This week was just brutal. I learned my lesson on Monday and stayed in bed except for my appointment.

My rheumatologist was worried. Now I love that man, he’s such a darling, and I’ve never seen him visibly worried. This was something new. He said this meant that the hydroxychloroquine hadn’t kicked in yet. That February was good because the prednisone was masking the symptoms not because my flare up was dying down. So he raised the prednisone back up to February dosage. He said there were a few options we could try in addition:

1. wait for hydroxychloroquine to work – not feasible because I can’t manage school with these symptoms and he doesn’t want to put me on anti-inflammatory meds like naproxen because apparently lupus has a tendency to take a sudden turn for the worse here in the tropics compared to America and they mask the symptoms so I might not realize it
2.  switch to chloroquine – it’s stronger than hydroxychloroquine, but this increases the risk of eye damage and leaves the issue of switching back to the hydroxychloroquine at some point
3. so he settled on the last option. Methotrexate. (and the accompanying folic acid)

I have to go back in three weeks so he can re-evaluate. It’s just so frustrating. Just when it seemed I was on the road to kicking this flare up, it turns out I’m nowhere close. Plus now I have additional side effects. I was so nauseous and dizzy all day today (first weekly dose of methotrexate this morning). I was scared that he was going to do something like this, and I was so tempted to lie and say all was well. I’m so tired of the weight gain and the restless legs and the moon face. But in the end I did the right thing and told the truth. I had to remind myself that my health is more important than my body weight.