Who was that man? And what did he do with my rheumatologist?
I had an appointment with my stodgy, recalcitrant rheumatologist this morning, and you'll never guess what happened. He formally gave me the diagnosis of lupus CNS (lupus with central nervous system involvement.) I have a diagnosis! Which means that I also have a treatment which I'll be starting this weekend. Yay!
I was stunned. Absolutely stunned. We walked in there for the sole purpose of seeing if the latest blood work results were back (they're not); we figured we'd be out of there in about five minutes. And he started off the meeting with his usual "You're here because . . .?" but then he pulled it out and remembered the blood work. And then he looked through my case file briefly and said, "Well it's obviously lupus." What? WHAT? Dar and I just looked at each other, shocked. He started telling me about my prior blood work, and how it definitely pointed to lupus - which is just about the opposite of what he said just three weeks ago when he was kind of pooh-poohing the results as being nothing definitive. Now he's saying that the titres were very high and there's no doubt, blah, blah, holy cow, blah.
The light finally dawned for us when he started talking about the report from my neurologist. It's the dementia that got him off his ass and up on the lupus bandstand. The dementia and the lesion on my brain. Hey, whatever it takes, doc :)
I'll be taking prednisone and plaquenil to start. As the doctor said, this now becomes a balancing act, trying to figure out what works and at what dosages. Both of those drugs can have pretty severe side effects, so it's a mixed blessing. But at least it's a start. If these therapies do the trick, I could be feeling better very soon. I was telling Dar, I've forgotten what it's like not to be dead tired and in pain all of the time. (There are others on my flist who are fighting the same thing, and I wish I could share these treatments with you, truly.) I'm trying not to get my hopes up too much, just in case I run into problems with these drugs, but boy - I'd be lying if I said I wasn't excited about this :)
There's still the matter of the missing blood work. This will tell me whether or not I have APS, which is a frequent companion to lupus. If I have it, I'll be at high risk for stroke or heart attack, so I'm anxious to find out what my results are. It's been a month since I had the blood drawn, but the doctor said it's not unheard of to have to wait 2 or 3 months for it! He thinks that because it's an uncommon test, the lab waits until they get a certain amount and then pool all of the tests. That's ridiculous. And unethical. I've actually read reports from some people on different lupus boards who have had strokes while waiting to start treatment. (I will not obsess about this. I will not.)
And of course there's the brain nonsense to figure out. It's looking good that the lesion(s) and the atrophy are solely because of the lupus, and if that's the case and the damage isn't too extensive, a lot of it can be reversed. Big smile going on here :)
I'll still be seeing the new rheumatologist in London. (Dar thinks that Hanna, my current rheumy, knows about the referral to her, and he wanted to hand me the diagnosis before she did. Could be.) Hanna is, in his own words, "old school", and I really need someone more progressive on my side. The two of them will be in touch with each other about my care, so that will be great.
So that's the great news of the day. Great for me, anyway :) Now I think I'll do some research on those drugs and get me some sleep.
I was stunned. Absolutely stunned. We walked in there for the sole purpose of seeing if the latest blood work results were back (they're not); we figured we'd be out of there in about five minutes. And he started off the meeting with his usual "You're here because . . .?" but then he pulled it out and remembered the blood work. And then he looked through my case file briefly and said, "Well it's obviously lupus." What? WHAT? Dar and I just looked at each other, shocked. He started telling me about my prior blood work, and how it definitely pointed to lupus - which is just about the opposite of what he said just three weeks ago when he was kind of pooh-poohing the results as being nothing definitive. Now he's saying that the titres were very high and there's no doubt, blah, blah, holy cow, blah.
The light finally dawned for us when he started talking about the report from my neurologist. It's the dementia that got him off his ass and up on the lupus bandstand. The dementia and the lesion on my brain. Hey, whatever it takes, doc :)
I'll be taking prednisone and plaquenil to start. As the doctor said, this now becomes a balancing act, trying to figure out what works and at what dosages. Both of those drugs can have pretty severe side effects, so it's a mixed blessing. But at least it's a start. If these therapies do the trick, I could be feeling better very soon. I was telling Dar, I've forgotten what it's like not to be dead tired and in pain all of the time. (There are others on my flist who are fighting the same thing, and I wish I could share these treatments with you, truly.) I'm trying not to get my hopes up too much, just in case I run into problems with these drugs, but boy - I'd be lying if I said I wasn't excited about this :)
There's still the matter of the missing blood work. This will tell me whether or not I have APS, which is a frequent companion to lupus. If I have it, I'll be at high risk for stroke or heart attack, so I'm anxious to find out what my results are. It's been a month since I had the blood drawn, but the doctor said it's not unheard of to have to wait 2 or 3 months for it! He thinks that because it's an uncommon test, the lab waits until they get a certain amount and then pool all of the tests. That's ridiculous. And unethical. I've actually read reports from some people on different lupus boards who have had strokes while waiting to start treatment. (I will not obsess about this. I will not.)
And of course there's the brain nonsense to figure out. It's looking good that the lesion(s) and the atrophy are solely because of the lupus, and if that's the case and the damage isn't too extensive, a lot of it can be reversed. Big smile going on here :)
I'll still be seeing the new rheumatologist in London. (Dar thinks that Hanna, my current rheumy, knows about the referral to her, and he wanted to hand me the diagnosis before she did. Could be.) Hanna is, in his own words, "old school", and I really need someone more progressive on my side. The two of them will be in touch with each other about my care, so that will be great.
So that's the great news of the day. Great for me, anyway :) Now I think I'll do some research on those drugs and get me some sleep.