I went to see Dr Y, my usual and wonderful GP. And I let rip with what my rheumatologist and immunologist have been saying and doing, particularly in regards to my immunologist ignoring me when I was so acutely ill at 2mg of prednisone. In reality, I became acutely ill at around 6mg, but I kept pressing on because my immunologist promised she would do the necessary biopsies to get to the bottom of what is really wrong with me.
At 2mg of prednisone I was sleeping most of the day, literally 23 hours out of 24 most days. I was nauseous to the degree of dry retching. I couldn’t keep any food down. I stayed hydrated on Hydrolite and drank Coke for energy. I could keep down Orange juice as well, but even taking my daily medications was a trial. I had severe diarrhea and friends have told me I’ve lost a considerable amount of weight. My joint pain increased, but that was far from the main problem. I was dizzy on standing, my muscles ached and I had no energy. Fatigue was unbearable. I couldn’t concentrate, or focus on anything.
And yet, when I called my immunologist to tell her this, she just kept telling me to press on. I asked for a Short Synacthen test, which she said was normal, but borderline. So my adrenals are working, but she warned that in case of emergency, medical or otherwise, or any very stressful event (like a death in the family) that I would need to stress dose.
I called her and called her and I even turned up at her offices without an appointment to beg her to do the further testing, because I could no longer cope. I’d had a psychological breakdown and I was acutely ill. In hindsight, she should have put me in hospital, then and there. Instead she shafted me off to a psychological service. Her receptionist finally called and I have an appointment with her on Monday, which is also the day of my ex father-in-law’s funeral. Great timing. But I can’t miss this appointment. I will have to leave the wake early and return after. Chances of my body holding up to that kind of stress? Not good.
I’m on day 4 of a steroid boost, and she finally called back. She’s not happy about the steroid boost, but she said it can’t be helped. She also said that there isn’t much more she can do for me, as the bloodwork wasn’t convincing enough. And she hasn’t go the results of the chest x-ray she ordered over a week ago. I call bullshit on that one, and if it’s true, the x-ray company is one floor about her. I’m sure she could convince them to read my x-ray as a matter of urgency, if she chose to.
She said that she will explain everything to me when I see her on Monday but she feels I should just go back to my rheumatologist to manage my seronegative arthritis.
But I’m not letting her shaft me back to my rheumatologist. This immunologist has put me through three months of hell. HELL! For no good reason. I went all the way down to 2mg of prednisone and felt like death warmed over for 2 months, and she ignored me. She did nothing. I went through that for NOTHING.
And yes, there’s some ‘roid rage going on, but I am angry. Intensely angry. She said she wants me to see a cardiologist too, I said been there, done there, been humiliated already. I explained my coronary microvascular disease diagnosis to her again. Does anyone listen, ever? And that I should have lung function testing, also already done, and my rheumatologist has the results. I thought they were talking to eachother?
I know what she’s angling for. My eosinophils aren’t high enough for it to be leukemia. But my symptoms and signs are almost a perfect fit for an eosinophilic vasculitis. A perfect fit. But it requires being off prednisone and biopsies to prove. And left untreated, is fatal. So I am not letting her bounce me back without explaining to me why she is 100% sure that I do not have vasculitis. I’m putting together a folder of bloodwork, tests and scans, which might help her see it my way. Or not. Roll on Monday.
My rheumatologist has already told me she can’t find enough inflammation to warrant the expense of another biological…my last biological. She feels my rheumatoid arthritis has ‘burnt out’ and the pain is from the rampant osteoarthritis I have pretty much everywhere. She has already told me that her treatment plan is to just manage pain, and that I should continue with NSAIDs and opioids and that’s all she can do for me.
Again, I call bullshit. I don’t even have an appointment with her, and I don’t have the energy to argue. I’ll get to her, but I have bigger fish right now. I have a lot of osteoarthritis in my spine, hips, shoulders, some in my knees. Who knows, maybe my hands and feet are riddled with it too. But it’s all mild to moderate on x-ray, which means no one is going to do anything about it. They assume the pain is mild to moderate too, and when I explain it is pain that requires narcotic relief, they tell me I have a pain sensitisation syndrome, in other words my nervous system is confused, and I therefore have a low pain threshold.
Again, I call bullshit.
Anyway, I’m getting to the good news part. I went and saw my GP and unleashed all of this on him. And asked him for help. Namely:
- My immunologist wants me to go back on the very extreme top 8 elimination diet for my eosinophilic eosophagitis. I’ve done that. It sucked. I still live on a very restricted diet and I barely eat. I just do not have the energy to do this diet. The rare occasions that I’m hungry, I don’t want to be restricted to rice or a carrot. Not without proof that there are still eosinophils in my gastrointestinal tract. I mean, if my blood eosinophils are no longer a problem, maybe they aren’t in my gut anymore either? Also, every time I eat, I experience stomach pain. It’s less severe on the higher dose or prednisone, but it’s still there. So I want proof of EoE before I go back in the diet, and that means an endoscopy. I asked for and got a referral back to my gastroenterologist. My GP faxed it and asked for an urgent appointment.
- I had an endometrial ablation about 18months ago, which was successful, in that pain and menstrual bleeding was much reduced. But over time the heavy bleeding has returned, though not as bad as it was previously. I also have pelvic pain and breakthrough bleeding throughout the month, and its literally a pain. Also given the previous ablation, and my Polycystic Ovarian Syndrome (PCOS) I’m at higher risk for endometrial cancer. So I want an ultrasound to see what’s going on. I got the referral and I’ll be having that ultrasound in about 2 hours.
- If I am truly just riddled with Osteoarthritis now, then I want something done about it. My spine feels like I have a knife stuck in it 24/7. No kidding. Not exaggerating. A fucking knife, 24/7. I can’t roll over in bed without first sitting up. It’s disabling. Steroid injections at L3/4 give me 70% pain relief, but only last 8 weeks. My SI joint is also inflamed, but less painful than L3/L4. I saw a spinal ortho over a year ago, but he refused to help, on the basis that he wasn’t sure there was nerve impingement, and there was so much damage, there were too many levels to fuse. (The MRI said there was high suspicion of nerve impingement at L3/4. Suspicion isn’t good enough apparently). He didn’t take my pain complaint seriously, and said he doesn’t operate for pain alone, unless its severe. There was no way I could convince him that my pain IS severe. He sent me away.
I want to see him again, and tell him that my pain IS severe, and I don’t want to live with a knife in my back. The pain in my hips (moderate osteoarthritis) and my spine are disabling and what cause me to need a wheelchair for any walk longer than about 50 metres. He does hips as well. So even if he refuses the spinal surgery AGAIN, he could do a hip resurfacing, given that my rheumatologist told me that my femor heads are both very irregular and likely causing my hip (groin) pain. My GP wrote the referral and faxed it urgently as well.
And that’s it. My GP achieved all of that in a 20 minute appointment. Amazing what can be done, when a doctor wants to help. And he offered empathy and support as well. All the things I need.
He knows I’m not nuts, but I was driven beyond breaking point by the steroid taper and the refusal of my immunologist to take me seriously and take action. So he is doing all he can to help me improve my quality of life.
I hate surgery, but I want an active life. I am relatively young (46) and I have exercised and been as fit as RA would allow all my life. Surgery could get me active again. Maybe I could manage on a lower dose of prednisone, maybe 7.5mg with post-surgery pain relief. Maybe I wouldn’t be disabled anymore! Or maybe that’s too much to hope for. But it IS hope, and I need that more than anything right now.
Life can be better than this. It has to get better than this. I just shouldn’t have to fight this hard for it.
The interesting thing will be to see how long it takes the gastroenterologist and spinal ortho to get back to me an arrange an appointment. Both referrals were faxed with ‘Urgent’ all over them, and the wording makes it clear I need to be seen very soon. We’ll see. Nothing I can do but wait.
But now I have to prep for a pelvic ultrasound. Lots of water, and hold it. Cheers.