When medication stops working – October 2022

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Over the last few weeks I have felt my medications are not as effective as they used to be.  I’m experiencing more swelling, I can feel more fluid inside my joints, mostly hands, feet, knees, hips and shoulders, and my hands are more clumsy. I can’t type for very long before my hands become too clumsy to use, and of course they hurt. Its not severe pain, its more discomfort. Its annoying, but it is getting in the way of things I want to do. And things I need to do.

I have told my rheumatologist, he said nothing.  He reminded me we’ve tried everything else, so best stick with the xeljanz. 

Its lazy doctoring. He doesn’t know what else to do, so he’s pretending he’s doing something.  He’s actually doing nothing, changing nothing, and getting paid well for it.

I get that though, he’s at the end of his rope. I HAVE tried all the current treamtnets  And despite treatment, my disease continues to progress.  That’s the case for a few patients.  I’m in the minority, and that’s good to know.  Treatments are very effective for most people.  But not ALL people.

Still, the pain from inflammatory arthritis is nowhere near severe at this point. I remember in the past my pain was completely all encompassing. It was disabling. I couldn’t walk, exercise, I was in permaflare and that flare was a full body mega flare.

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Those were very bad days.  Only predisone helped and that’s what lead to me being on long term prednisone at doses that all my doctors shake their heads at.  Somehow they seem to blame ME for the fact that I’m still on 10mg of prednisone daily.  Um…I have no other choice, what do you want me to do?  Lie in bed all day every day?  No? Well then its prednisone. Sorry, not sorry.

Point is, I am NOWHERE near that level of severity. I would rate my inflammatory arthritis as mild to moderate at this points.  But the ‘moderate’ days are becoming the majority of days,  and things are sliding. It’s very frustrating.

I have decided to stop all my rheumatoid arthritis medications to see if they are working at all anymore.

I am NOT recommending this! 

But this is what’s right for me, right now.  Sometimes I get fed up with all my medications, last time I checked I was taking 17 different medications every day, plus the weekly methotrexate shot.  I’m always assessing my medications to make sure I still need them. 

Lately, there have been shortages on some of my medications, most notably semaglutide / Ozempic.  This means I am steadily gaining weight again, and I’m just so sick of that. Its frustrating, its tiring, because no one believes that I eat very little, that by necessity I follow a very low-calorie diet.  And still, I gain weight.

I do NOT need a nutritionist or dietician; I have forgotten more about nutrition that most people every knew.  I do not overeat, and I am NOT kidding myself.  Without the semaglutide, the weight comes back. Semaglutide is effective for me, and I wish I could access it.

I’m not so sure about Xeljanz or even methotrexate right now. I want to know what effect, if any, they are having on my arthritis.

Bottom line?  I want to see what my baseline is. 

Why? Most of my doctors are ignoring me now. I’m as long term, chronic patient. When I have my three monthly consults they all like at me like “Oh, you again”.  And an eye roll.

They don’t want to change anything, because I’m on so many medications, with so many diseases and conditions that cross specialties that they don’t want to touch anything, change anything, in case it upsets something else.  That’s understandable.  But seeing doctors is a massive waste of time and I’ve been cancelling and postponing my three-monthly appointments beucse there’ snothing new to say.  They al lgo the same way, I explain what new symptoms I am experiencing, the doctor looks at me blankly and says “that’s more something for your {insert different specialty here} doc to manage.  Go see them about it.

The very last thing they will do is call eachother and consult, because they don’t get paid to do that. There’s no charge code to bill.   So they all shrug and tell me to just keep doing what I’m doing.

So I’m taking control and weaning off the medications that I believe are not working anymore.  I’m stopping my Xeljanz and methotrexate medications because my liver enzymes are double what they should be.  My rheumatologist says ‘that’s OK’ because we have no other option. Well, I’m a bit attached ot my liver, and if these medications aren’t helping much, then why destroy my liver function? 

I need to see how bad my arthritis is when I am taking nothing but prednisone.  And how low I can get my prednisone dose.

I am still at10mg of prednisone. I have been trying to taper for years…a decade even. Most often, I can’t get lower than about 9mg, without becoming acutely ill. Its not arthritis symptoms that stop the taper its extreme fatigue, nausea, dizziness when standing, unable to keep food down…just sick. Too sick to get out of bed.

My doctors don’t believe me. They think I’m a sook who needs to ‘push through’ and try harder.  I can’t get any of them to believe how sick I become and all of them think this is a ‘psychosocial’ problem.  Which is doctor speak for ‘its all in your head, you have a bad attitude, you aren’t trying hard enough’.

Its also a complete cop-out and the easy way out for a doctor who doesn’t know what to do next.

Anyone who knows me knows that I am highly motivated and extremely determined. I exercise daily even though it is exquisitely painful to do so. I have peripheral neuropathy in my feet that makes walking agony. But still, I walk because I want to walk my dogs. I don’t want to lose the ability to walk, and if I stop walking, I WILL lose the ability. I need to keep my muscles strong and keep the muscle memory of walking. I have seen many people disable themselves because they don’t keep moving. They lose their muscle strength and tone, and more importantly, their heart muscle deconditions. This is a quick way to shorten your life expectancy.  

 Why?  Because it hurts too much!  I get that, but that’s NOT me. 

I take opioids and anti-inflammatories when I need them.  The pain relief allows me to walk 2km. I have worked hard to get from a point of left-sided paralysis and unable to walk at all, to walking 2km. That was hard work, and it took a lot of motivation and determination. And maintenance! I have to keep doing it, else I go backwards.  2km every second day is a brick wall, however, and for months I’ve been trying to improve on it with no success.  There are limits.  But this is proof that I am not the type of person the doctors think I am.  I am not lyingin bed feeling sorry for myself, I am not ‘giving up on life’.

But my doctors ignore that. Because its much easier to victim blame and decide it’s my own fault.

And so, I get no medical help.

So what are my symptoms right now?  This is for me, so I can look back on this post in a month and guage whether stopping methotrexate and xeljanz has affected my arthritis.

So here goes – my arthritis is returning. I have swollen, but not hot, joints. I can feel the fluid inside the joint, and it restricts the movement. My joints fatigue out very fast, for example, when I’m typing my hands start to hurt after a few minutes. Its very frustrating. It’s not severe pain, its more a low-level ache, but it does stop me typing. Then, after a while, Its more like a nerve pain, my hands seem to slow down and then stop working.

My feet are getting worse as well, there is a deep ache inside the joints. Same goes for knees, hips, shoulders. 

My lower back has always got a knife twisting in it. That’s constant pain and I don’t ever expect it to go away. It has been there for many years, easily ten years.  Its at least a “7” every day, but sometimes it goes down to a “6”.  This is normal for me, but I am finding as I taper the prednisone my back pain seems to be increasing.

Nerve pain from my spine.  This is the worst pain!  I wake up most nights between 2am and 4am and the pain is horrible. Its not knife like, or stabbing, it’s a constant buzzing pain. Its nauseating, like a low-level electric thrum.  Nothing relieves it, I can’t move position to make it better. Its almost a cramping pain…stretching my legs out makes it better very briefly.  I usually have to get up and walk around, which is also agonising. And ultimately, I take my opioid pain medications. It’s the ONLY thing that relieves this pain.  And opioids do relieve it very effectively.

The nerve pain is getting more severe and happening more often now. 

I am also experiencing muscle weakness. Its hard to lift my legs, climb stairs, get out of a chair.  My leg muscles used to be much stronger, I am working on exercises, but I am getting weaker and weaker. No one will investigate, because my blood work ‘looks fine’./ therefore its ‘psychosocial’

Yeah. No its not.  Its not in my attitude, or in my brain. There is something wrong with my muscles, they don’t work the way the used to.  I’m living in this body and I can feel it. 

So that’s where I’m at.  I have an appointment with my pain management doctor on the 31st of October, so  a month away.  I am going to be asking him for an opioid dose increase. Again. I have seen him four times in the last two years, since he force-tapered me to less than 90MME, which left my pain undertreated. My quality of life decreased, and my pain increased. I could no longer exercise intensely, and could barely walk. I have objective measures that show my fitness has decreased massively and my disability has increased.

BECAUSE he won’t manage my pain

And I do mean won’t.  not can’t wont.

Because of an arbitrary measure – 90 milligrams of morphine equivalent, that has become the upper limit daily dose for opioids in Australia.  This amount is not based on any science, or evidence. It was pulled out of the air before the CDC opioid prescribing guidelines were written, and it has become a line in the sand.  But that’s another story. I spend most of my time advocating for proper pain management and access to opioids for those who need them.  But this week, I am focussing on myself. 

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2 COMMENTS

    • Its amazing! But its also amazing how the weight comes back on without it…with no change in diet and an increase in exercise. But C’est La Vie…there are worse things, and next year there should be regular supply (so I’m told 🙂 )

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