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Living with Psoriatic Arthritis (PsA)

Starting new biologic

I do like the concept of the more the fatigue the more it is battling the inflammation, it is a fiery battle!
That bone numbing fatigue when it hits, is more then a person can bare just to walk across the room, that is why the thought of exercise was hilarious.

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That’s just it though - if it was fiery you’d have been in fight or flight mode. But it’s not, it’s brain-numbing. Anyway, you’re out of the woods & that’s what matters.

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Great hear Jon! I get a Stelara loading dose tomorrow (Crohns so they are not shy with the amount), You have inspired me to hope I can sleep it off overnight and be hopping about full of energy Friday. I’m certainly sick of feeling grey day-in-day-out. But of course now you guys have reminded me, off to do my Physio despite the grey blurgh blanket weighing me down!

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I bought the new “Fitbit” it monitors my heart and sleep cycle. With all my tachycardia events it thinks I am really doing the cardio!
Sleep cycle last night was revealing, said I got 4 hours 11 minutes sleep, woke up 5 times, (cat) awake 20 minutes in the night, 49 minutes of Rem… They recommended getting to sleep earlier then 1:30am :roll_eyes:


This is what my resting heart rate looks like!
The cardio burn is when I get out of bed to use the restroom and the heart rate jumps over 100, fat burn!

Had a fasting blood-test this morning so it Wiped me out…

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Your situation is a full time job! Maybe we could form a union so we can get higher pay for pain by the hour. Thanks for sharing Jon, many are learning through your journey!

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So to bore you guys even more, here are more charts I got from my Fitbit!
It also does sleep studies, so it will clock in when you get woke up by a 23 pound one eyed cat at 3:30am just when you are in deep sleep or rem.

baby girl names not common The first red blip is when I kicked my fluffy friend off the bed, after a nice bit of rem sleep… Awake 49 minutes, this is with the help of muscle relaxers and hypno-drugs, and melatonin to boot!

Today was exhausting this is what my pulse looks like resting in bed and getting up to use the restroom or eat. I get cardio in just eating a salad, no wonder I am so thin!

So, to tie it into the post, (so the moderators don’t freak out :sweat_smile:) I do not think my chronic fatigue is caused by the biologic, more due to my terrible restless sleep and Possible POTS.

Update on Rx: Still have not gotten my prescription worked out between the Doctor’s office, specialty pharmacy and insurance, even though the insurance has approved two shots, they will not give them to me, until she re-writes the prescription, I guess that makes sense, the drug company would be like, (New Jersey accent) “what gives? How come you not pushing our product, you’s want me to come down dare and break some fingers, or what?” :flushed:
These are big ticket items, they have to sell this stuff!
The idea that the two token shots would give me a little more loading dose, If I take them in a biweekly schedule. Good luck explaining that to the specialty pharmacy, they are like a six pack with some of the cans missing! Or maybe the cans are there, but it is missing the plastic thingy to hold them together… :roll_eyes:

We would be rich beyond our wildest dreams…

Amazingly enough, still trying to sort all this out.
Have not gotten the Rx worked out on Cosentyx yet, having called all the concerned parties; doctor, pharmacy, insurance, it is a total SNAFU. My doctors office did say they could always supply my first month dose if it was not settled by then! They have supplied all the loading dose already, been 8 weeks since it was submitted.

I messaged my doctor about the tachycardia, as he never got back to me, asked him if this is something I should be concerned about? He just left me hanging yesterday, after asking some questions about it. Strange disconnect. I was just asking if he felt I should follow up with a cardiologist or if he thought it could wait until the tilt table test in September, chest pains with skipped beats are concerning to me. He asked more questions then, nothing…

I guess it is like that old saying, “I am just pissing in the wind”…

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If it were me in this situation - I’d ask the direct question - why are you leaving me hanging like this when it’s clear I’m concerned? Why are you leaving me ‘pissing in the wind’? What’s wrong, aren’t you feeling well yourself doctor? As this lack of action and response from you is very concerning. What are you waiting for? Do you want to have a heart attack without you trying to prevent it?

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I set up a appt. with my GP but it is not until Monday, of course they say, if it gets worse go to the ER… It was kind of odd, he claimed he did not understand what I was asking, so best to come in, it is hard sometimes to test this stuff. I thought I was clear, but he is probably reading it between patients.

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So went to my GP yesterday, he hooked me up to a EKG, he had heard the flutter with the stethoscope, it was funny I told him it only happens when I am vertical, so they had me lay Down, and guess what, they did not find anything! Amazing… :roll_eyes: He gave me a weak beta blocker to hold me over until my tilt table test in September, I will titrate off before the test. It is Toperol XL working well, keeping the tachycardia in check. They said at the pharmacy it might make me sleepy, of course with ADHD it ended up keeping me awake all night, I did manage to eek out 4 hours sleep.
Doctor still has no clue why it is happening, we thought maybe it was bad thyroid meds I take natural thyroid, but that was in range, no indication with the biologic of tachycardia being a side effect, so could just be small fiber neuropathy going haywire. Chalk it up to another unknown disease that has no cure, story of my life! Sorry no cat photos to show… :wink:

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Nice pic! Beautiful day!

Pic from last summer, hoping to go back there for a few days this summer too, it’s close to Rome, Santa Marinella, beautiful sea, strangely, where my in laws live.

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Nice old castle! Looks like a good place to snorkel and dive…

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And good pizza I bet…

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Don’t eat pizza, carnivore diet, but pizza is good in Naples region, and in New York if I remember correctly

Pizza is definitely good in NY

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Santa Marinella, but even more Giglio island, off the Tuscan coast, have spectacular beaches, so is Sardinia, some parts of Italy are special as far as underwater scenery goes.

So I thought I had the shipment of the biologic sorted for tomorrow, but looked on the APP it was not there. So I called the dummies at the specialty pharmacy and they had not placed the order yet. She said it would still be coming tomorrow, usually it takes 3 days to get out here, because I require a morning delivery, so I bet it will be arriving at 8pm, and guess what? The 100 acre farm will be dark and no one will be there to sign for it. I will let them figure that out. I am not going to wait out there For the delivery truck into the wee hours. They can bring it back in the morning.