I know it’s too soon to call. I know I shouldn’t be saying this. I know I’m going to curse myself. I know there will be a backlash…and I can’t help it. Something is going on. Something big. Huge changes are afoot, and they appear to be because of injectable methotrexate.
Three and a half weeks ago I saw my rheumatologist. The appointment didn’t go well. Not that she’s not a good rheumatologist, or unkind. But she basically said she had lost all hope of ever helping me. I’ve burned through a couple of rheumies that way. It bites. She didn’t mean it in a nasty way. She is just at the end of her rope. She doesn’t know what to do with me anymore. Long story short, she is switching me to Actemra, but even she doesn’t believe it will work.
The appointment was such a depressing event that I couldn’t even write about it. I could tell she had lost all hope. She even felt that an expensive drug like Actemra is wasted on me. But when I said to her:
‘So what are you saying? We give up?’
That seemed to snap her back to reality. And she started the paperwork.
You see I have now failed almost every available drug. Plaquenil is so mild it does nothing. I can’t take Sulfasalazine or Imuran. White cell count issues, liver issues. Arava has given me peripheral neuropathy, so never again. Methotrexate caused a psychotic break and deep depression. Enbrel, Humira and Orencia had little to no effect. Along with a bunch of unpleasant side effects. Not the least of which being causing two strokes, and potentially MS. Oh and no more NSAIDs as I have gastritis.
I can see why she feels backed into a corner with no way out. I felt the same way.
So we agreed, I would stay on 15mg prednisolone, because it was allowing me to function to some degree, even though I was largely bedridden. I wouldn’t really call it much of a life.
And then I brought up the possibility of trying injectable methotrexate. You see I had been talking to someone online who had a similar experience with methotrexate. Terrible depression, suicidal ideation, the whole box and dice. But she switched to injectable methotrexate and had no more problems.
So I was prepared to try.
That’s how desperate I had become. I was prepared to risk a suicidal trip the psych ward.
My rheumy got all excited. It’s like it never even occurred to her to try the injectable version. She wrote the script happily.
So now I’m three injections down, and they have been the best three weeks I have had since this mess started almost a decade ago.
I am no longer bedridden. I am no longer awake all night in pain. I’m no longer constantly nauseous. I no longer feel like I am made of lead and battling constant fatigue.
I still take 15mg of prednisone and 30-40mg of oxycodone. But that controls my pain. It used to just take the edge off. Now my pain is controlled.
Except for my lumbar spine. But I have a lot going on down there. Spondylitis, spondylosis, severe facet joint arthritis, two torn discs, stenosis, the MRI report is long with lots of big words. I can’t be bothered hauling it out, but you get the idea.
My lumbar spine is sharp knives of pain, and it’s constant. However that’s the only sharp pain I have. I will be having another radiofrequency ablation next week however. That pain may well disappear soon. Or be substantially reduced.
My other joints ache. I am not pain free. But it’s manageable pain. It’s mild to moderate by my standards. I can mostly ignore it and keep doing what I’m doing. You hear that? I’m DOING stuff. All day long. I still need rest breaks, but I used to just have to choose one thing to do each day, and be satisfied. Now I just work through things steadily all day. With breaks in between.
Not like a normal person, sure. But not like a half dead zombie either.
And I have energy again! I don’t want to fall asleep by midday. Or even 3pm. Not even by 9pm the other night.
Over the last three weeks I’ve had one three day total knock down full body mega flare. That was this week. But it has lifted now. I’ve also had a few days with a few joints flaring sharply. Bad shoulder. Stabbing pains in my hips. Swollen knees. Those come and go. Different joints daily. But not ALL my joints, ALL at once. And mostly it has been just aches. Background noise.
As I’m typing, my wrists are hurting more. So I will have to rest soon. But I have cleaned the kitchen, done two loads of washing, and vacuumed and scrubbed the bathroom. I’ve done a light workout at the gym and I’ve already done my 10,000 steps today, according to my FitBit. And its only lunch time.
This feels incredible. I know I shouldn’t be saying this. I know it can’t last. I know I shouldn’t be looking too far into the future.
But I have a lot of hope.
The depression is still there. But the euphoria of not being in constant, severe pain anymore ameliorates some of that! And the depression is better than it was. The day or two after I take the shot I seem to be hyper emotional and then it improves. And there’s a lot I can do to improve it. I can live with that, in exchange for half the pain.
I didn’t even realise how bad the pain was until it improved. I’m scared of going back there. I don’t want to have to deal with that level of pain again. I don’t want anyone to have to.
I just called my rheumy and left a detailed message. I want to let her know what an incredible difference injectable methotrexate has made. I put it at least 50% improvement. Today is an especially good day – I have to remember that. My natural optimism is colouring everything and I keep trying to remind myself to calm down. Wait and see. Be sensible.
But I want to hold off on Actemra until I see how far the methotrexate will take me.
I’m only on .6ml, or the equivalent of 15mg. I can increase that dose, if I can manage the depression and mood swings.
I’d like to try a higher dose next week. I’d like to try and reduce my prednisone. I’d like to know how often I’ll have full body mega flares. How many knock down days per week, per month. I’d like to know what ‘normal’ life is like, on the highest dose of methotrexate that I can tolerate. And when I know that, I’ll decide on whether to add in Actemra.
This could still just be an aberration. A freak of nature. It could all end tomorrow. I could wake up unable to move again. Or I could wake up with the crushing depression, like an elephant is sitting on my chest, and I can’t breathe.
I know I am calling it too soon. But it’s the best I have felt in years. Many, many years.
I have lost so much to this disease. I know I can’t ever get those things back. But if this keeps up, my future is looking a whole lot brighter. I see part time work. I see hiking and getting fit and gym workouts. Photography. Friendships. Relationships. I see that trip through Europe, or even that hokey campervan around Australia thing actually happening. And maybe someone to do it all with.
I have hope.