I saw my GP this morning to get more pain meds, and to beg him for cortisone shots.
He obliged on both counts, but not before telling me the time is coming for he and I to have a serious discussion about pain medications. I am taking 10mg of targin in the morning and 20mg at night. He said this is too high. I didn’t mention that most nights lately I am taking 30mg of targin at night. Because I NEED to sleep goddamnit! If I lie awake all night in pain, that starts a downward spiral that usually takes a prednisone burst to pull out of.
I need to sleep.
I also take 40-50mg of oxycodone for breakthrough pain. I would need much higher doses of Targin, being a slow release formulation, to actually control my pain. But I am very used to it. And I am very good at ignoring it. I am a Navy Seal of RA pain management. Get comfortable being uncomfortable. Wait, that doesn’t really cut it. Get happy being in pain maybe.
So he’s not happy with my dosing. And I didn’t mention the 10mg of diazepam and 3 glasses of wine that I usually take in the evening as well.
He also understands that I’m in a place where medicine can’t do much for me.
This is the part where ‘incurable’ really bites.
I DO know that I will need to cut down on my meds. And I DO know that I will need to reduce my steroid use. But I will need a doctor on board who is open to, and educated in, Adrenal Insufficiency, because I believe that’s why I can’t get lower than 12mg. It’s not just the increase in joint pain. I go into complete collapse. I have no energy. I am sick all over in every way. I feel like I am dying.
But anyway, back to the issues at hand.
I got some of my bloodwork back.
My liver enzymes are elevated. ALT is high. Not mega high – about 1.5 times the top of the reference range. This will be from Arava. Whenever I take 20mg of Arava, my liver enzymes rise. I will drop to 10mg today. And I’ll get a phone call from rheumy on Friday (which seems to be when she reviews her bloodwork and calls patients back). She will tell me to drop my Arava to 10mg. We’ve been down this road a few times already. I know what to do. I thought maybe because I’m no longer on Methotrexate that I might be able to tolerate 20mg of Arava.
Oh and I shop drop the wine. But I know I’m not going to. But for the record, I know I SHOULD.
My kidney function is tanking again. It’s been good for ages, but this time it’s the lowest it’s ever been. Again, not dangerous, just in the chronic kidney disease range. It should be monitored. But none of my docs ever pay much attention to my kidneys. They aren’t close to failing, so we’ll let it be. But rheumy might also tell me to lay off the Naprosyn. It’s tough on kidneys.
I’m seeing a Gastroenterologist this afternoon. She will almost certainly tell me to stop the Naprosyn, due to all the stomach problems I’m having. I’m betting that’s the very first thing she suggests.
So I’ll stop the Naprosyn.
Naprosyn has been helping quite a bit. Things are going to get considerably worse in a few days. And anyone following this blog knows that this year things have already become significantly worse. Not least, my attitude.
I’m tired. I’m fed up. There seems like there is no help anywhere. Life is a constant wait for medical appointments, audiences with arrogant specialists, and uncomfortable procedures that don’t help for long.
Incidently, my shoulder is hurting constantly again. The one I had surgery on. I mentioned that to my GP. He said the synovium and bursa will have grown back by now. And unfortunately have gone back to being permanently inflamed. He said there is also likely scar tissue as well. And that it won’t get better. A cortisone shot might help, but I had to choose. Shoulder or hips.
Hips. Definitely hips. I can barely walk today. It sucks big time. But I’m not entirely sure if its hips or spine, being referred to hips. So I’m going to get an ultrasound and if the radiologist can see inflammation, get a cortisone shot. If there isn’t any inflammation I’ll just blame my spine and have to sit tight until I see my pain management specialist. Another six weeks away.
Waiting, waiting, waiting.
They don’t care how much pain you’re in. They don’t triage. They should.
What else? Iron is borderline low. I guess not being able to digest much food for the last couple of months will do that. Then again, I look at previous years results, 2009, 2011, 2013…these numbers are pretty normal for me. I’m always anemic. Again, it doesn’t get addressed.
My bicarb is low. That’s new. Dr Google tells me that it could be related to kidney disease (tick) or it could be a sign of Addison’s disease. That’s the autoimmune disease that causes adrenal insufficiency. There’s that pesky cortisol thing again. Potentially. I’m going to need to see an endocriniologist. But in the words of my GP the two in Canberra are both dickheads. I have seen them both, and neither one of them was capable of diagnosing Hashimotos. Both of them told me there was nothing wrong with me, and refused to order a thyroid panel.
There is something VERY wrong with an endo who can’t diagnose Hashimotos. Very wrong.
So maybe a trip to Sydney. That’s a three hour (at least) drive up the highway. Because there are no competent endocrinologists in town. They only care about diabetes. They will not be open to investigating secondary adrenal insufficiency. That’s boring. But maybe my rheumy will. She’s pretty open to investigating right now. She’s an investigating bunny! She’s up for a challenge.
Choleseterol is high. Thank you prednisone. Nothing to see here…
Thyroid levels are fine, and my autoantibodies are still there. Yep, still have Hashimotos. Least of my worries though.
Oh and my white cell count is up. Way up. Double what they should be. White cells and neutrophils. Lympocytes are borderline low, and eosinophils are high. Way high.
The report says my red cells are normocytic and normachromic. This seems to be related to chronic kidney disease. And chronic disease in general. We have a winner. But I’m tired of googling. Doesn’t sound like a particular concern. ‘Normal’ for sick people.
Last but not least I have high platelets. Causes for that? Chronic kidney disease (is this getting boring yet?), iron deficient anemia (check), rheumatoid arthritis (check), pancreatitis (had it a few weeks ago) and a few other nasties like cancer. Unlikely with all the other boxes checked.
The risk? Blood clots. Considering my neuro is pretty sure I’ve already had a couple of minor strokes, THIS should make him pay attention. Blood clots in the brain = stroke. I’m on blood thinners. I don’t know how that relates to platelet production. Seems to be a problem in the bone marrow that causes too many platelets. I might read more about that later.
But it seems, from this blood work, that I have rheumatoid arthritis, and chronic kidney disease. The funny thing, of course, is that all my inflammation markers are normal, and my ANA is negative. Cardiolipin AB also negative. That’s a good thing. But I see why doctors doubt my autoimmune diagnoses. The usual bloodwork just doesn’t bear it out. But the secondary signs are all there.
If I didn’t have physical proof of active inflammation I would doubt it too. Ultrasound, bone scans and a surgeon who saw RA inflammation when she opened up my joint with her own eyes. Proof doesn’t get any more proofy than that! Just goes to show, blood work is far from infallible.
And I think my rheumy hit the nail on the head when I saw here.
The prednisone is masking everything.
To really see where my body is at, I would need to get off it. I doubt it’s possible though. Not with me remaining upright, walking, talking and taking care of my kids.
If I had more support I could go there. But I have kids who still need looking after. Their father is very involved in his new life. And not available.
So I have to do some serious thinking.
But right now I have to head off to the gastroenterologist, and see what she has to add to this pile of cr… interesting information.