The truth about living with Rheumatoid Arthritis

#xeljanz

Liver bloods are normal! I can start Xeljanz again

Blood work has arrived and my liver enzymes are normal!  In fact, all my liver blood work is normal.  So many kinds of hip hip hooray!!!

This means I can restart Xeljanz, albeit at a half dose of 5mg per day.  I will take it tonight.  In two weeks I will retest my liver function and if still normal, I can go back up the full dose of 10mg.  And hopefully start to feel better!

I don’t know if 5mg will help at all, Xeljanz is not a miracle drug, but it did give me a 30-40% improvement.  When you’re bedridden and so weak you can barely raise your head, 30% is a lot.  I do think a lot of the illness I was experiencing was due to hepatitis, however.  Not so much out of control RA.  The pain and fatigue I can attribute to out of control RA.

My cholesterol is a little high, but its well below where it would need to be treated with medication.

The only dark spot is my glucose.  My last two tests have been fasting, and the first my glucose was mildly elevated, only a few points above normal.  This one is is a little higher still.  It’s only 6.9, when the top of normal is 6.0. But it bears watching.  Diabetes is another complication of prednisone, and its a serious one.  It’s probably a side effect of the high doses of prednisone I’m taking, and it should resolve as I taper down.

Oh and I have a high white cell count. High neutrophils, low lymphocytes.  That would suggest a bacterial infection.  Hmmm. My white cell count has been screwy for months now tho. Doubt its a problem.

But back to the good news – I can start Xeljanz again!

The plan is to restart Xeljanz – Dec 2016

So I dragged my bones down to the pathology lab to get my bloodwork done.  Last bloodwork was about two weeks ago, and the numbers were heading down, landing around four times the top of the range. So, four times higher than they should be.

Four times doesn’t sound like much when they were almost 20 times higher than they should be the week before that, but it is still too high. Have to keep reminding myself of that.  I very quickly start thinking in terms of ‘relatively’ when with bloodwork, you really need to work with absolute numbers.

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Rheumatoid arthritis and Xeljanz after seven weeks

It has been 7 weeks on Xeljanz now, with a break of 5 days thanks to a brush with mild pneumonia.  Long enough so that I have felt some benefit, in both pain and in energy levels and I’m sure it’s not coincidence.  I have days with considerably less fatigue, especially combined with being able to sleep more than four hours a night, thanks to Valium.

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

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.

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Why didn’t my rheumatologist apply for Xeljanz?

That is the question. Turns out I don’t mind, because my research tells me that Xeljanz raises blood pressure in pretty much everyone.  And seeing as high blood pressure is my most pressing medical issue, it’s not the drug of choice for me.

When I had my appointment last week, after two weeks of playing telephone tag with the (typically) disinterested reception staff, she explained what happened.

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