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Rheumatologist Updates

Since I forgot to post an update after my last appointment, I wanted to make sure I got the new update up as soon as possible. I switched rheumatologists in February, and I couldn’t be happier with my new doctor. My last rheumatologist had zero social skills and didn’t really listen to anything I was saying. This rheumatologist is very chill and actually listens to what I have to say. (.. and those readers who follow me on twitter will know that I was greatly pleased to see bright coral nail polish on her toes AND finger nails. It’s the small things, isn’t it?)

1. azathioprine

Last februrary we switched from methotrexate (mtx) to azathioprine (Imuran) to see if I could get the same results without the nasty mtx side effects. So far the results have been good, my liver enzymes are normal, and the side effects have been bearable to so we’re sticking with the azathioprine.

2. gabapentin

In February, we also added gabapentin. I was a little nervous about this after all the weight I gained on the pregabalin. The pregabalin didn’t help my pain at all so I’d been weaned off of that by the last rheumatologist. So far, the gabapentin didn’t really help my pain either. It did help my restless legs and it knocks me out most nights so I have less trouble with insomnia. Unfortunately, it also makes me wake up with a hangover and feel drunk and groggy all day. So my doctor stopped my morning and afternoon doses. We’re going to try dropping the night time dose from 600 to 400 (or if that isn’t enough to help the sleep and restless legs hopefully 500 will work). Guess we’ll see how that goes.

3. tramadol

I’ve been avoiding the pain meds as much as possible all these years. I fear pain med addiction. I fear labels like ‘drug addict’ that many chronic illnesses sufferers face and make it harder for us to get the care we need. Unfortunately, the costochondritis has gotten out of hand. It causes enormous amounts of pain. On bad days, I’m stuck whimpering or even crying in bed. The rheumatologist felt along the ribs and freaked out. She wanted me to get on low dose prednisone, but I really didn’t want to get back on the pred. So she gave me a pain killer called tramadol used for fibromyalgia sufferers that I can use when I really need it. It isn’t going to fix the problem, but it might make it more bearable. I’ll let you know how it goes.

4. my poor wrists

I’ve been using this time at home to catch up on years and years of reading list backlog. Well, in between Buffy marathons on Netflix Instant that is. Unfortunately, my wrists aren’t enjoying this as much as my mind is. Last February, my doctor told me to get an ereader. I didn’t. I go through too many books too fast to afford buying the books and libraries still have limited lists of ebooks. This time she put her foot down. She wants me to get an ereader AND to find splints that go around my wrist (but not over the whole hand and wrist). Joyous. Time to do some research on ereaders! Anyone have any advice?

5. sun exposure

As expected, I got in some serious trouble about the tan lines from the wedding memorial day weekend. Oops. I got off easy though because I was wearing my big hat and since I only had a greasy sunscreen it was obvious that I didn’t forget that detail. Still, the importance of avoiding sun exposure was made very, very clear.

Holistic M.D. Appointment

So my parents have been after me for months to see this holistic MD that is treating a family friend. Unfortunately, he wasn’t taking new patients. I called for an appointment sometime in early January. They told me his next appointment would be in August. Finally, our friend helped us to get an appointment.

This doctor is focusing on cross-cultural medicine and integrative medicine. I was told that he has a big focus on gastrointestinal bacteria and knew a lot about Eastern medicine. I was assured that he won’t take my off any of my allopathic medicines. (I told my parent’s I don’t mind any additional treatments, but I’m not comfortable with stopping the allopathic meds.)

I will be the first to admit that I went into the appointment rather sceptical, but willing to listen to what he had to say. The appointment went on for 1.5 hours!! He asked A LOT of questions – most of them about the puking that’s been plaguing me and my GI system in general.

Then he gave me some tests to take at home. Now, peeing into a cup and pipetting that into some test tubes is truly not too bad….. but pooping into a bucket, scooping that into a tube… and then, as if that wasn’t gross enough, stirring and shaking that tube. Three days in a row. Yuck and double yuck.

Still, I did what I was told and mailed the specimens into the lab somewhere in the North Carolina. It will take awhile to hear back though, so I guess we’ll see what he has to say when he gets the results… that’s probably when things will get interesting.

In the meantime, he has sent me for an Ayurvedic consult.

Has anyone else seen a holistic MD?? Thoughts? Experiences? Advice?

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 adavanced 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

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…

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.