KatT's Journal

[Fred]

Good to get a good relationship with those treating you.

Psoriasis, psoriatic arthritis, lupus add heart attack. Don't do anything by half do you.

[Forest Walker]

Remember back in May last year I asked my GP to refer me to a new rheumatologist?

Well....I got a call two weeks ago and had an appointment with her on March 17.

She is a rheumatologist and internist.  She spent over an hour and a half with me going through my medical history, family history and test results.  The maximum amount of time my previous rheumatologist spent with me was 15 minutes.  So I switched

She comes from Montreal and is in our region once or twice a month.  

She confirmed that I definitely have lupus.  Again, was told my case is complex as it`s rare to have psoriasis, psa and lupus ..... then add the heart attack on top  

Went for more blood tests today, next appointment in two months.  She will most likely increase the MTX and stop the hydroxychloroquine (Plaquenil) so I would be reducing my pill intake by 14 a week!

Psoriasis score 1: One pesky patch where the back loses it's name

Arthritis score 3: we've had rain lately so in a bit of pain. 

That`s it for now

"One pesky patch where the back loses its name."  LOL  Your description of the pesky patch where the back loses its name made me smile.  I'm so glad to read that this new doctor spent the time to understand your medical history and to get to know you.  I hope you have many years together and many visits that are just to "check in" with each other because your Lupus, Psoriasis, and PsA have quieted completely.  

I hope you never need to use the prednisone, but it is a comfort to have some on hand.  Do you have a lot of experience using prednisone?

[KatT]

Caroline :  I will definitely bring this up with her in the near future 

Fred :  when I do things, I do them properly   

Forest : I was given prednisone a few times due to lupus flares, also when my face swelled up with Humira.  The problem is I always need more. The initial prescription with tapering off is not enough....they have me tapering off too quickly.   My goal though is to avoid a flare....they are painful    Treat it on the onset (given I don't act like my stubborn self, endure  and wait until it's unbearable resulting in an ER visit),  

I feel the difference between pain from the PSA and pain from the statin medication.  I have a hard time differentiating between PSA pain and lupus.  I know it's the lupus when I start having chest pains only but it can cause soooo much more.  GRRRRRRRR

That being said, it could be worse so I try to keep going  

[Forest Walker]

You have a powerful determination, super strong spirit.  Nothing is going to keep you down.     

I used 20 mg prednisone daily for seven years in the early time of Crohn's, before switching to 6-Mercaptopurine for 15 years and then Remicade and then Humira.  I also premedicated for Remicade with 150mg of prednisone, which was awful.  

Tapering off too quickly is harmful, as you know.  It's an effective anti-inflammatory but at the cost of giving multiple, unwanted side effects.  

It sounds like you and your new Rheumy will work well together.  It's your body.  You're the one living in it 24/7 and know what it's experiencing, even when you can't tell if pain is from one disease process or another, you know what you're experiencing.  Your new doctor listens when you speak . . . that is a really promising relationship.  

[KatT]

Thanks Forest   

Prednisone for 7 years!  150 mg with Remicade    Glad you're off of it!

I feel wonderful when on them in regards to the arthritis but it's not something I would contemplate as a treatment for arthritis or lupus.  And they taste soooo awful 

I am really looking forward to building the relationship with my new rheumatologist.  I was very impressed with my first visit 

[Sheila]

Good things come to those who wait! And you've waited long enough to get this kind of treatment. Glad you and your Rheumy are working it out together. Glad to hear you are feeling better. 

P.S. 
I have a med that is really, really minty flavored. Not sure why but there are times I need a breath freshener! LOL No, I don't just throw a pill in my mouth as tempting as it may be. Can't find a gum either that doesn't stick to my denture.

[KatT]

Have you tried PÜR?  Sugarless too 

[KatT]

Can't seem to catch a break    

One of the special blood test my new rheumatologist ordered, related to lupus is B2 Glycoprotein IgG.  Not knowing what it was, I googled....maybe I shouldn't have    Ignorance can be bliss sometimes.

People with autoimmune disorders like lupus, PSA can develop a condition called APS syndrome more commonly known as Hughes syndrome which causes increased risk in blood clots (could explain the heart attack).

I did this blood test while on blood thinners and the results are high.

Mortality for patients with lupus and APS is high

Thank God I am seeing my rheumatologist this week as I am freaking out!!!!!  I hope I am missing something here and it's not that bad.

[artemie]

Hi Kath,

Sorry to  hear this! I hope you can find a break by doing something that makes you happy. Meanwhile I've done a post on my AIP diet journal, still pretty clear. Ish. Gotto cheat every now and then 

Hugs!

   Artemie

[Fred]

Good luck with your appointment KatT

Sometimes it's not a good idea to look too far, but yes you should share your worries with your rheumatologist.