KatT's Journal

[Fred]

Sorry I forgot you had tried other Bio's

I thought "Ice Caps" meant you were putting ice on your head to cool you down.

Re the smoking, get all the tobacco you have around the house and have one last smoke in. Smoke yourself silly, so much so that you feel ill and never want to touch one again.

[KatT]

Just need to step outside for 2 seconds to cool down lol

I'll keep your suggestion in mind but will take my chances with Champix 

[Fred]

Just need to step outside for 2 seconds to cool down lol

I'll keep your suggestion in mind but will take my chances with Champix 

We're all behind you if you need our help

[KatT]

February 27th - 28th

Went to sleep at my parents with my daughter to have a small girls day out of retail therapy the next day, get a nice beaver tail treat, etc.

Well....instead....ended up in the ER the whole night and next morning till about noon   

What happened?  Same as 2018 but way worse!

Chest pain on the right side to the point of being unable to lie down, lie back or sit.  Every breath hurt like crazy ….. never experienced pain like this, dilaudid wasn't even working 

Soooo off to the hospital I go (in my pjs and mukluks....very sexy) ....before mum decides to call an ambulance.

Did an ECG test....which they had trouble to do because I had to lie down for that and was squirming in pain....so much she left the stickers there in case she had to redo it

Chest XRay

Blood tests....in the hand again as they can't seem to find my veins in my arms

Covid Test (I didn't know they could to that deep with a swab!)

Port installed in the left hand (smaller port because it's in the hand and again because they can't find veins in my arms)

Was given through port, pain medication, something to thin the blood in case there was a blood cloth

After the pain medication, was able to sit at least and breathe a little better.

Nurse on the next shift installed a bigger port in the right hand (the other one was too small to pass a CT scan)

They gave me more pain medication around 7 am as I was walking in circles in the ER with tears in my eyes.

Went for a CT scan which again, was difficult because I had to lie down.

Result....same as before...pleurisy due to lupus.

More prednisone    I love that drug....I feel great on it but I know it's not good!

Was experiencing pain for about two weeks prior but it is difficult to determine why (i.e. could be muscular) and sometimes it got better.....guess I waited too long

Prednisone is starting to work....I can lie down (with a bunch of pillows in my back and get a few hours sleep if I take dilaudid)….thank god I had taken today off from work.

So I have an emergency appointment tomorrow with my rheumy.  I need to know if:

1. I can continue Simponi
2. maybe increase azathioprine dosage (that is for lupus and he had reduced the dosage from 100 mg to 50 mg when I had started Cosentyx in 2018)

I will book an appointment with my GP next week (she is off this week due to March break) to know if:

1. I can get a prednisone prescription in case of emergencies like this.....I do NOT want to go through this again
2. Maybe get referred to a nutritionist

More to come!  But I feel like I am falling apart.....haven't reached half a century yet!

[Fred]

Oh KatT you poor thing, what an experience to go through.

I hope you get sorted and feel better soon, we are sending you good vibes from France

[KatT]

Thanks Fred 

I have an update but will provide it when I get hydro back ( somebody must have crashed into a pole or something) 

[Caroline]

Well KatT, you have gone through something. Very painful and scary as you describe it.

And still you were able to write this all to us. Hats off to you !

I’ll send you some extra vibes from the Netherlands also !!
Keep strong !! But you are already.

[KatT]

Thanks Caroline  

[KatT]

March 2nd update:

Had my appointment with my rheumatologist today.  Shared the results of the blood tests done at the hospital as he hadn't received them yet.

1- Covid test = negative   (phew…..don`t need that on top!)

2. Asked to increase azathioprine to treat lupus, he said no and stopped the medication immediately as my liver is being affected (as per blood test).  He prescribed Plaquenil (hydroxychloroquine) as MTX or leflunomide (which I have taken before for PSA but is also used for lupus) are also out of the question because of my liver.  That being said, I now have to get my eyes examined every year …..good thing as I am blind as a bat and will force me to get this done.  I hate getting my eyes examined    Actually…..I seem to not like any person that has Dr. in front of their names….

3. Can continue Simponi …perfect!

4. Asked if there is another way to prevent in advance, i.e. prednisone prescription in case or something else.  The answer was no….whenever it happens, it`s an automatic trip to the hospital as they need to do a CT scan to determine what it is…..it could be another pleurisy or could be a heart attack or something else  

5. He told me that a pleurisy is very painful but does not damage the lung and that I am lucky (for now) that it`s the only organ affected by lupus…..oh joy!!!!!

6. Asked about the results of D-Dimer (from blood test) as it should be below 500 and I was at 3 700 and this is related to blood cloths but ruled out pulmonary embolism and deep vein thrombosis.  His answer was ''it has nothing to do with the lupus or arthritis so not my area'' …wonderful!

Prednisone is working well….still sleeping in a sitting position but I can sleep a whole night uninterrupted by pain    Can`t wait to get a good night`s sleep in my regular sleeping position!

Next week….GP appointment

More to come.….hopefully no more new meds…..or I will open my own pharmacy!

[jiml]

Awww KatT what a nightmare for you. Sorry I missed your post before it seems to take me ages to get through unread posts these days.
I hope by now you are feeling better and the flare up has calmed down.
Would it have been less violent if you had gone to the doctor when you first noticed it starting to hurt? Would you have been able to control it with medication?
I wish you a speedy return to normal and add my good vibes from England