Tomorrow I see my Rheumatologist to decide on where we go now, post hysterectomy and the disaster that was

Tomorrow I see my rheumatologist, and what a sorry tale I have to tell.  Two days ago I went through all my discharge records from my hospital stay. I wasn’t able to face that before, but my upcoming rheumatologist appointment meant it was time. I need to make decisions about which medication I want to try next.

My last lot of blood work showed multiple abnormalities, haemoglobin still low, but getting closer to normal, red blood counts too high, white blood cells too high, and platelets way too high, three times what they should be, increasing my stroke and heart attack risk.

My kidney function is poor, at stage 3 kidney disease.

After surgery my lungs were partially collapsed, I had pleural effusions and couldn’t breathe without oxygen.

And then there’s the neurological defects.  My left side has improved, but it is still weaker, and I still feel like I can’t wake my limbs up. Sometimes the pain is severe, particularly in my left hand and left foot.  Nothing helps it, opioids are ineffective.  I refuse to take neurontin or lyrica, endep or cymbalta because these drugs give me horrible side effects. I’ll take the pain, thanks.

My hearing in my left ear is much worse, and my left vocal chords are paralysed.  My voice has improved, but it still becomes a rasp after speaking for a few minutes.  My balance is off, and I get dizzy spells and vertigo to the degree that this is what’s keeping me resting and laying low, not arthritis. I am exhausted often, and it’s not like RA fatigue, it’s more a truly sick in every cell of my body sensation.  I am still recovering from a major trauma, however, it’s early days and I hope my energy levels will improve.

I am doing physical therapy exercises, and pushing myself a little harder each day, sometimes I overstep and push myself too hard. Then I pay with nausea, exhaustion, vertigo, and brain sludge.  I can only lie still and rest at that point, and try again the next day.  Most of my day is spent resting, anyway, but only because I have to. I’m not enjoying any of this, and I will not stay this way.

I never feel clear headed anymore.  There is always fog, but it’s not brain fog.  There is pressure in my head, like someone’s squeezing it and there’s no room for thinking.

I also have more intense peripheral neuropathy, particularly in my feet…both feet.  The pain is intense and often wakes me.  It’s as bad as my arthritis pain used to be, but it’s entirely different. It burns and its literally like thousands of sharp pins being stabbed into me.  It’s worse on the left side. Movement helps, but also hurts.

Life is still hard, but it’s much more doable. There is no help, aside from my kids.  But I am much stronger than I was, and am capable of much more now. I don’t need help.  I wanted it, but it didn’t come.  No casseroles.  So now I don’t want it, not ever.  Some offers are/were genuine, but I won’t ever accept help again.  Not after that.  I have to be self-sufficient, for my own protection.

And then there’s my rheumatoid arthritis, and recently confirmed Ankylosing Spondylitis. My x-rays show grade 3 sacroiliitis, sclerosis and erosions and there is no doubt of my diagnosis now. I believe my rheumatologist will be pleased, she has a clear direction now.  And with the rash of studies coming out recently showing that Simponi is very effective in anklyosing spondylitis, I suspect that’s the next medication she will recommend.

But do I want that?

Reading back over my blog has been very helpful. My memory doesn’t match what I’ve written and reading back over old posts is a revelation.  I highly recommend everyone write a diary of their medications, and responses to medication positive and negative.  The posts I wrote surprised me.

It also shocks me to the core that people, a friend of mine, could read this blog for years and call me a faker and a liar and an attention seeker.  Yes, I’m pretty blunt, but I also tend to underplay.  I spoke to my ‘friend’ last week. The one I asked for help pre-surgery because she drives past my house every work day.  The one who didn’t answer my desperate text messages. The one who told me not to pretend that I’d had a stroke, that I was the lowest of the low.  Nevermind the internal bleeding that almost killed me.

And I just wrote a few pages on how much she hurt me, and then hit delete. I’ll take that up with Dr Mike on Tuesday.  Back to the point…

Enbrel was more effective than I remembered. For the first three months I was convinced it was helping, (30-40%), while my memory had it pegged as completely ineffective.

Humira was a spectacular success…for four days, and then caused horrific side effects.  I remember that clearly!  But those four days of pain free existence and ENERGY are hard to forget and I felt they were proof that I could get better. Now, there is much more damage, to my joints, to my internal organs. I’m not sure remission or feeling good are even a possibility anymore. But I can feel better than this.

Both Enbrel and Humira are TNF inhibitors.  Both did have a measurable effect.  Perhaps another TNF blocker (Simponi) is a good idea.

From there I moved to Orencia (30%) and Xeljanz (30%).  Orencia’s effects waned, and Xeljanz kept destroying my liver.  I’d be prepared to consider Orencia infusions, for a higher dose of the medication, but I will not do Xeljanz again.

Last time my rheumatologist was pushing Xeljanz, forgetting that it caused hepatitis and my liver enzymes shot up to ten times normal while I was taking it. She was convinced it was unrelated. When I started it again, my liver enzymes started rising again. I wasn’t prepared to keep going and that annoyed her.

My body, my choice. I know Xeljanz is bad news for me, and I’m not trying it again.  I was mightily pissed off that she would even suggest it, let alone push the idea.  If she persists with that course, and refuses a different treatment plan, I have an appointment with another rheumatologist in a few months.  Our ways will part.  They might part anyway.

Just skimming over the blogs of this year remind me what a hell year I’ve had.  How much I have suffered, how much I have tolerated, and bounced back from.  Part of me is scared to try anything new, because my track history is pretty woeful. I am the side effect queen, I think I wrote that in my very first blog post. How little I knew back then! But leaving a treatment option on the table is not the smartest move either.

But a very strange thing is complicating my decision making. In the past I have been in severe, uncontrolled pain.  Every moment was spent fighting pain and trying to smile through it, and not take it out on the people around me, not become bitter and miserable because of it, to find happiness in my life despite intractable pain.

Now, I’m not in severe pain. I’m in moderate pain.

I have aches in most joints, particularly hips, knees and shoulders. They never stop aching, but it’s nothing compared to having knives twisting in every joint, every moment.

Right now, on 20mg of prednisone, my pain is controlled with oxycodone.  Controlled.  Usually oxy just takes the edge off.  I am doing far better than usual and I’m not sure why.  But it changes everything.

I see two main possibilities:

1. I am spending my days resting, mostly lying down. I don’t have a choice about that, I am very weak and it’s a slow recovery from the trauma of the surgery. Consequently, there is no pressure on my joints. My hips, knees, shoulders, wrists, and feet all ache, but it’s moderate pain. Easy for me to ignore.

2. The other, far more interesting, possibility is the effect my hormones have on inflammatory arthritis. I had my ovaries removed and am on hormone replacement therapy.  And I feel better than I have in forever, emotionally. No more hormonal mood swings, no more fighting so hard to keep my moods under control and not take them out on other people.  I very rarely took out my PMS on anyone but myself.  But I would fall into deep depressions, drink heavily, think very dark thoughts and become self-destructive.  Better to hurt myself than to hurt someone else.

But those moods are gone.  Those feelings are a part of me, and they always will be, but without the catalyst of the hormone shifts, my dark side remains suppressed.  It’s a very clear difference, and it’s an immense relief that being happy is so much easier now.

But…my old hormones may also have made my inflammatory arthritis worse.  There is a strong connection between female hormones and RA, the fact that many more women than men are affected, and often more severely, speaks volumes. As does the fact that many women go into remission during pregnancy.

So maybe my arthritis has become milder because I have a new hormonal balance.  For the first time in my life I have balanced hormones.  Intriguing, and very appealing, thought.

So which is it? Or is it neither?  I haven’t had arthritis this mild for this long since before I was diagnosed. Time will tell, I guess.

The pain and inflammation is very much still there, just much less. Reading back over my blog posts reminds me of how bad it was just a few weeks ago.  How quickly I forget. But reading my own words, I know I do not feel that way now.  I am much improved, pain is much milder.

But now that my arthritis is moderate, rather than severe, the side effects of the various choices before me become more important.

When you’re in daily, excruciating, disabling pain, nausea, fatigue, even depression are worth enduring for relief from that pain.  You will do anything.

When that pain is less, there are some side effects I’m not prepared to accept.

I know some rheumatologists assess the severity of their patient’s disease by what side effects they’ll tolerate.  My previous rheumatologist told me candidly that if his patients won’t accept one day of nausea per week, then clearly their pain was not so terrible.  At the time I thought he was an asshole, and perhaps he hadn’t given reasonable expectations.  But I understand what he meant now, despite it being poorly expressed.

My pain was always far more severe than any side effect before, and I endured some very severe side effects. Now, that may not be so, and I may not be prepared to do that.

One day of nausea per week is totally acceptable for me to get rid of this pain, however.  IF that’s what the effect will be. Three days of nausea, not so much. Severe depression, no way.

But my blog tells me methotrexate was effective, the most effective medication I’ve taken.  I had some nausea and fatigue, I think almost everyone does.  But for me, it caused major depression, culminating in a suicide attempt.  My GP stiched up the cuts and the half severed tendon and I have the scars on my wrist to show what methotrexate did.

Despite that, I continued to try and tolerate it. I started and stopped it three more times after the slashed wrist and psychotic episode.  How’s that for pushing through side effects as a testament to the severity of physical pain?

Ultimately, every time I start methotrexate, somewhere between 6 and 10 weeks later the depression becomes unbearable and I have to stop.

Given that methotrexate affects oestrogen levels, and my oestrogen levels are now different, perhaps it’s an option again.  It’s worth a try, but it’s also a huge risk.  I think I’m prepared to try, because I know that a week after I stop the methotrexate injections, most of the depression is gone, and two weeks after I feel normal again.  It is completely reversible.

It just doesn’t appeal much, because I finally feel stable. Willingly taking a medication that has caused these side effects seems stupid, especially when my pain is moderate.  I am experiencing panic attacks whenever I try to leave the house or interact with people, and I have ongoing nightmares from the hospital experience.  It’s always the same, the details slightly different. I’m in agony. I’m dying. I’m alone. Over and over and over.  Not that deep, really, but I wake in a cold sweat and extreme distress.  Will throwing methotrexate on top of that push me over the edge?

But looking back, methotrexate injections were most effective medication of all.  The nausea and fatigue it caused the two days after each shot were nothing compared to the pain and fatigue of my disease. I was desperate. But am I desperate now?

But then there’s the prednisone. When I taper back down to 10mg, will I be desperate then?

Other alternatives are switching to Orencia infusions. I doubt that Orencia will ever be fully effective, however.  It’s not THAT much larger a dose, given my body weight, and its effect wasn’t that good. The appeal is in the complete lack of serious side effects (a headache, stomach ache and fatigue the day after the weekly shot. No big.).

Or the aforementioned Simponi injections.  A monthly injection, a TNF inhibitor.

Previous TNF blockers have been patchy, some benefits, some terrible side effects. Enbrel and Humira are both TNF blockers but they affected me very differently. Humira put me into instant remission however…for four days.  That’s seductive.

Enbrel caused a lot of other problems, that only hindsight and a broader view allows me to appreciate. I never had high blood pressure, nor high cholesterol, before Enbrel.  Now my blood pressure rarely under 145/90, despite two medications to lower it.

The high blood pressure has caused the small vessel disease of the brain, and coronary microvascular disease and the small thalamic strokes.  Not minor side effects.  I would be in far better shape had I never gone there.

But done is done. Will Simponi make it worse?  Impossible to say.

The other side effect of Enbrel and Humira was considerable weight gain.  No one likes gaining weight, especially when I eat like a bird and exercise plenty (or I did then).  The weight gain was almost 20kg, and it did bother me. I had to put it out of my mind, mostly because I knew there was nothing I could do about it.  If I were indulging in comfort foods and not exercising, that’s another thing.  But nothing changed and yet I gained a lot of weight.

If I’d achieved remission or low disease activity, it would be worth it. No question.  But I never came close. The best I got was moderate disease activity, and clearly the damage has continued unabated.

I feel much more comfortable at a lower weight, and weight loss is good for my joints.

The weight gain happens quickly and the weight loss comes slowly. It has happened twice now, each time I gain 15kg within 2 months, without changing my diet and exercise habits.  The weight loss only starts to happen a YEAR after stopping biologicals. Whatever they do to my metabolism is reversible, but it takes a very, very long time.

Right now I’m about 8kgs over my normal, “ideal” weight. The weight I’m at when my thyroid medication is correct, and I’m eating normally and exercising regularly.  I can fit into my stage jeans, the ones I wore when I was 22 and in a rock band.  They are delightfully high waisted and look hysterical…but they fit.  They are a very good indicator of my weight and body shape, then and now.  I wasn’t built to be thin, but I am relatively lean now, compared to the last four years while messing around with biologics.  I am close to my natural weight, where my body comfortably sits.  I’m not keen to inject a medication that will mess all of that up again.

But then again, maybe Simponi won’t cause weight gain.  No way to know except try.  But even one shot might mean a year of being overweight, with no guarantee that it will help my Rheumatoid Arthritis or Ankylosing Spondylitis symptoms.

And I know lots of people will say “don’t worry about the weight gain, what’s inside is what matters.”

True.  But I have a long history of eating disorders. I was both anorexic and bulimic and diagnosed with body dysmorphic disorder 25 years ago. I have kept clothes from when I was 18, 22…they are my guides as to what I ‘look’ like, because I really can’t tell for sure. If I can get into that little black dress (not that I’d ever wear it in public) or that pair of stone washed jeans, I know unequivocally that am an appropriate weight.  It took many years to accept my body for what it is.  Curvy.  It took even more years to heal my relationship with food. Extra weight is a huge stressor for me, and while I put it aside for the last few years, it took effort, and I’d rather not have to expend that effort.

Then there’s my immunologist’s strong opinion that all my allergic problems were caused by biologics and I should never take another.  On pressing her, however, she admitted that was more a gut feel than anything with real evidence behind it.  It’s valid, however, based on years of clinical experience. I trust her, and I trust her gut feelings more than I trust some other doctors’ “evidence”. But she doesn’t have to live with the pain that I do, and the damage has been done.  I have those allergies now, when they are no longer suppressed by prednisone I will likely have to return to my restrictive, and extremely unfun diet.  Can another biologic really make that worse now?

And all of this is assuming my kidney function has recovered, my anaemia has improved more, my red blood cell counts have normalised, my white cell count is no longer too high and my platelets have come down to normal.

And that my lungs have recovered. I couldn’t breathe unassisted in the hospital due to partially collapsed lungs and my scans showed pleural effusions.  I still have pain on deep breaths and quickly become breathless on light exertion.  I expect that was all post-surgery complications, I don’t understand the mechanism, but if feels like no part of my body was spared the effects of massive blood loss.  I think my lungs have recovered, but methotrexate can damage the lungs.  Another thing to consider.

Also, my rheumatologist took me off Humira because of neurological issues.  That’s what started all the brain scans, and found the lacunar strokes and some possible demyelination.  TNF blockers have been (rarely) associated with MS.  Is that a risk I want to take?

My ANA also became positive (speckled pattern) and I was diagnosed with Lupus.  But a positive ANA is also associated with RA and Mixed Connective Tissue Disease, my other diagnoses.  So does it matter?

In terms of symptomatic relief, I can never take NSAIDs again so just treating with anti-inflammatories isn’t an option. Not recommended anyway, given the degree of damage at my SI joints and elsewhere (hips and knees spring to mind).  But I have a confirmed gastric ulcer, and even though that will heal, my gastroenterologist said no more.  I have inflammation throughout my gastric tract, eosophagus, stomach, duodenum, small intestine and large intestine.  She took biopsies at my gastroscopy just prior to the hysterectomy, to look for the causes of the inflammation in my upper GI tract at least.  I’m interested in what those biopsies show, but it’s a safe bet she will reiterate the “No NSAIDs” rule.  My cardiologist and immunologist said same, for their own reasons.

Prednisone is fantastic for me, but I have to start tapering soon.  20mg is far too much, even if you subtract the 5mg that my body needs to physiologically replace the cortisol that it doesn’t produce on its own (Adrenal insufficiency).

Another option is to do nothing. To start tapering, to increase my activity, and wait and see what happens.  If my hormonal shift has truly decreased my inflammatory arthritis disease activity, things will remain moderate.

But even moderate arthritis is painful and life altering.  To me, the pain is mild now, comparatively. But as I get used to this level of pain, it will feel worse, like more of a burden. It’s all relative. And the damage is going on while I wait.  And I can’t fix that damage with arthroscopic clean outs, tendon repairs or joint replacements. Surgery will never again be an option.

So waiting and seeing doesn’t seem like a good option either.

I‘m not sure, but a trial of methotrexate injections seems the safest option.  If that fails, I can move onto Simponi.

But I guess I should listen to my rheumatologist’s opinion.  Ultimately her decision will be final, because she has the prescription pad.  But before I walk in there, I will make my own decision about what I want.  And I will fight for it.

Tomorrow should be interesting…