How to get a script for Xeljanz…when its sitting in the drawer

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And now for Rheumy.  Despite calling her office three times in three weeks, her receptionist seemed unable to understand my problem, nor retrieve the script from my rheumatologist’s desk drawer.  My rheumatologist was away on holidays, so confusion reigned. The receptionist kept telling me she was going to put a new application in to medicare.  I kept explaining to her there was an old script, already approved, that I hadn’t started Xeljanz yet pending my neurologist’s opinion.  I have now been cleared and I need the script.  Round and round we went, every week.  And every week, the script failed to arrive.   I only have a week of Xeljanz left, so I made an appointment and went in to see her.

I may have still been in an argumentative mood.  I am always polite, but today I was far more assertive than I have ever been.  Quite a flash back to the person I used to be before crippling pain and fatigue took centre stage.  That’ll change a person.  But a person can change back, when given a little relief from pain.

I was polite but we clashed.  I’m tired of being submissive and meek and polite.  I’m tired of being talked down to, and essentially bullied into submission.  I’m tired of being the ‘nice’ patient.  Nice guys DO finish last, I have learned this in every aspect of my life.  Not least in the medical arena.

Today I was assertive and polite.  I respectfully disagreed with most things she said.  But (spoiler) I got my Xeljanz script.

 

Opening line from me: Good news, Xeljanz is working.

Rheumy: Great, how long have you been taking it.

Me: It started to help at the 2 and a half week mark.  Maybe 30% so far.  But then I got a chest infection, and had to stop. I’ll restart it tomorrow, because I’ll have finished my antibiotics.’

Rheumy:  Oh no!  (Listens to chest.)  I think you have pneumonia.  Infection risk is very high with Xeljanz, we need to take you off it.

Me:  NOOOOOOOOooooooo!!!!!

 

Then there was the discussion on lumbar puncture and nerve conduction tests.  She wanted the results.  I told her that I had called Dr Xxxxxx and that he had declined to treat me.

 

Rheumy:   What did he say about the elevated protein in your LP?

Me:  Nothing he said the results were normal.

Rheumy:  That’s not normal.

Me:  He said they were normal and he had no diagnosis. And then he said he couldn’t help me.

Rheumy: He wouldn’t do that.

Me:  He did.

 

Moving onto my nerve conduction tests on my legs, the ones I was ‘discussing’ with Dr XXxxxxx this morning.

 

Me: He told me that the nerve conduction tests showed abnormalities at the SI joint

Rheumy:  That doesn’t make sense to me.

Me: That’s what he said. I thought he meant a trapped nerve?

Rheumy: That doesn’t make sense to me.  Do you have the test results?

Me:  He refused to give them to me.

Rheumy:  He wouldn’t do that.

Me:  He did.  Maybe you could get them?

Rheumy:  I will.

 

And after she made a note to call him…

Me: So what do I do about the pins and needles in my feet?  They hurt enough to make walking difficult, and they are constant.

Rheumy:  If your nerve conduction studies are normal, then it must be small fibre neuropathy. There is not treatment for that.  Have you been tested for diabetes?

Me: Hundreds of times.  I have a great pancreas.  And I’m on metformin anyway.  But the thing is, the nerve conduction tests on my arms were normal. But I definitely had Cubital Tunnel syndrome. Definitely.  So I don’t have that much faith in the nerve conduction studies anyway.

Rheumy:  How do you know?

Me:  Because my surgeon said so. She told me it was the worst case she’d ever seen. (I knew that was a mistake as soon as it came out of my mouth. ‘Worst case ever’ always sounds attention seeking, true or no.  I try to avoid it.)  She said that my nerves were a mess and that the cause was joint hypermobility at the elbow.

Rheumy:  How could she see your nerves were a mess?  You can’t see nerve compression!

Me: I don’t know, that’s what she sai…

Rheumy: And you can’t SEE joint hypermobility. That doesn’t make any sense to me.

Me: That’s what she said to me.

Rheumy:  Joint hypermobility is nothing.  It’s not important.  We don’t treat it.  There is no way to treat it. Go to the gym and do some exercise.  Make your muscles and tendons strong.

Me: (through gritted teeth) I do go to gym and do exercise.  I am strong.  I work hard at it. I take oxycodone so that I can exercise.  Joint hypermobility causes pain and early onset osteoarthritis, which would explain a lot.  I never mentioned joint hypermobility to her, so there is clearly a way she can tell that I have hypermobile joints.

Rheumy:   That doesn’t make any sense to me.

This is getting ridiculous.  There’s that exercise thing again.  The eternal Catch 22.  If you don’t exercise, you should. You must!  Seriously, get to the gym!

If you DO exercise, your pain can’t be that bad. You’re exaggerating. You cannot be disabled.

It’s a no win situation when you’re dealing with doctors who are being adversarial and defensive rather than patient focused and attentive.   But back to the point…

 

Me: The POINT is, my nerve conduction studies were normal. But I definitely had cubital tunnel.

Rheumy:  That can’t happen.

Me:  It did happen.

Rheumy:  It’s the Gold Standard test. It can’t happen.

Me:  It did happen.

Rheumy:  I will call your surgeon and ask her personally. What she said to you might not be accurate.  Sometimes doctors say things to patients because….

 

Her voice trailed away.  Her implication was very clear.  Sometimes doctors say things to patients to humour them, to placate them.  But let’s think that through. If that was the case, and I didn’t have Cubital Tunnel Syndrome as my rheumatologist asserts, my surgeon performed a completely  unnecessary surgery on me.  And an assistant surgeon and an anesthetist were complicit.  That would be completely unethical, and I’m sure there would be serious consequences for any surgeon who behaved in that manner.

I don’t buy it.

It also ignores that my symptoms are clearly indicative of long standing cubital tunnel. And the muscle wastage in my hands is definitive and diagnostic.  Two orthopedic surgeons diagnosed it independently.

So. The fucking nerve conduction studies were WRONG, got it???

Doctors and their precious ‘Gold Standard’ tests.  Tests are fallible.  Google nerve conduction studies. Highly variable results, completely dependent on the quality of the equipment used and the skill of the clinician.

Maybe my neurologist sucked.  Or maybe he just had a bad day.  We all makes mistakes.  Yes, even doctors.

We took a little break from happy chatting as she wrote more notes.  We weren’t arguing, just disagreeing at this point. I do like her and I respect her. She got me on biologicals when no one else would, and I owe her for that.  She just lost heart when I didn’t respond to anything, and started to get frustrated, and even blame me a little.  She now doubts that I have active arthritis at all, but she hasn’t got the heart to ditch me.  And I need her.  I need her to keep prescribing Xeljanz.

She asked me how many biologicals we’d tried now.

Four.

She reminded me that I only had one more to go after this.

I know.  No idea what her point was there.

So then she asked about my prednisone levels.  I told her 12mg and holding.  She started talking about my bone density and the dangers of prednisone.  She reminded me that by the time I start having fractures from osteoporotic bones, it would be too late.

 

Me:  I have seven times the bone density of a normal person.

Rheumy:  (laughs)  What do you mean?

Me:  That’s what they told me.  I’m a freak.

Rheumy: Let me see.

Looks up last bone scan.

Rheumy:  You’re bone scan is amazing.   I’ve never seen anyone with results like these.

Me: Yes, that’s what they said. They did it twice and called all the other techs in to have a look.  I’m very lucky, I have very dense bones.

Rheumy:  I can’t believe that. You have to have another one.

Fair enough. Everyone responds the same way to my bone density tests.  Even my GP was shocked and did some research to see what it meant. (Nothing).  But my own googling found a study that said 2.5 times normal bone density was considered abnormally dense and occurred in 6 in every 1000 people.  Pretty rare.  Extreme scores were considered 4 times normal, and that occurred in 3 in every 100,000 cases.  So I’m getting the idea that my bone density is pretty freaking amazing.

Dense bones correlates to strong bones, so my GP said that’s probably why I don’t have bone erosions, only cartilage damage. Cartilage is so much softer than bone.  And my bones are more dense and more strong than, well, everyone’s.  Seven times the bone density of a normal person.  Unbreakable. Cool.

But the lack of bone erosions is why I am constantly questioned.  Moderate osteoarthritis (cartilage damage) all over the place, severe degeneration in my spine, severe degeneration in my right shoulder, inflammation that is not visible, not palpable, totally normal bloodwork, yet I complain of pain.  It doesn’t make sense to them.

And when in doubt, disbelieve the patient. The doctor’s creed.

It’s a shame that medical training appears to beat all the questioning curiosity out of people.  And then the strict medical hierarchy keeps them toeing the line.  A little lateral thinking would go a long way.

But ultimately, she gave me the script.  I go back in three months for a review.  She was particularly negative as I left.

 

Me: Let’s finish on a positive note.  It is working. I am improving. (She should have been able to see that by the way I was walking.)

Rheumy:  Wait and see. I’ll believe it when I see it. You always say its working, and then you come back in a month and say it isn’t.

Me: (No I don’t. *sigh*.)  See you in three months. Thankyou.

 

6 COMMENTS

  1. Geesh! Ok, your pins and needles…have you had a Vitamin B12 test? Are you deficient? My new endo finds I have neuropathy in my left foot. Now, I have no pain or pins and needles, but I have neuropathy. Personally, my surgeon messed up the nerves in my foot. I have never fully regained feeling in my big toe and I’m guessing now my whole foot as I couldn’t feel the test past 6 seconds on my foot. The other foot was like 13 seconds. He said Vitamin B12 could be low and that it helps with neuropathy. We will see if it helps. Can’t hurt. You can actually get that supplement and try it yourself just for fun. I know you are having it worse than anything I’m having.

    • Thanks Maria. I’ve had my B12 tested, and its all good. Thyroid as well. But you’re right, it can’t hurt to try though, thanks. Does sound like your surgeon screwed up your nerves, but I doubt anyone will ever admit that! I hope the B12 helps you, keep me posted? I’ll start taking some too. never know your luck 🙂

  2. I am blown away by your rheumy’s attitude. How sad. How sad that sometimes it seems like we’re dealing with 17th century medical people instead of 21st modern medicine. She sounds very young and inexperienced, doesn’t she even KNOW that one of the hallmarks of RA (at least for me) is the unpredictability? That there are “non-responders” that don’t respond the biologics (like Kelly of rawarrior.com)? What works today, may not work anymore tomorrow. I would be looking for a new Rheumy if possible. I am so fortunate to have a Rheumy and a GP who are on board together and looking out for me. However, I will say this about her (my Rheumy). Back in the spring when I was in week six of the most-horrible-lung-flare-ever that lasted a full two months, she said to me “all things considered, you’re in much better shape than a lot of my other intersticials.” As I sat there, struggling for every breath, and ready to begin eating my own hair, just to muffle the pain screams, and wondered…..what exactly does she consider “not in good shape?”

    • Scary thought – how much worse do you have to get??? It;s crazy. They get ‘immune’ I think. Lose all empathy. Maybe your rheumy thought he/she was being encouraging??? And yes they have so much faith in their precious biologicals that they forget 30% don’t respond…my rheumy has even told me that 70% do respond. So that leaves LOTS of people who don’t!!! I’m all for optmisim, but really!

  3. Well as a guy who has battled neuropathy for many years I can honestly say I know the cure. The cure you ask? Don’t get it. Neuropathy suck, I wish I had better advice, I use heavy doses of gabapentin, but I would never suggest it. Sometimes it works other times, it is awful. I think it depends more on the person.

    As for the doctor’s visits? I did not know we saw the same doctors?

    LOL

    • I’m sorry you suffer with this too Rick, it is pretty darn awful. I haven’t tried gabapentin, but I have tried similar drugs in the same class. From that experience I will never touch anything like that again. There doesn’t seem to be much that can be done about it, certainly my doctors couldn’t care less. They do’nt seem to understand that when I say ‘pins and needles’ its not like the mild pins and needles you get, no, its literally like being stabbed with thousands of sharp pins! Not nice! I hope you find some relief. Is your neuropathy a complication of diabetes?

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