My appointment went well being 1 hour late getting to it. An appointment 1.5 hours away from home took, me 3 hours to get there. I was so expecting them to send me home.

Diagnoses
1. AS with psoriasis - It was determined I've had AS since my 20s.
2. PsA with Fusion on SI joint. - Pitting in fingers - inflammation in small joints - ankle pain (not sure where to put that - but pain through roof - doesn't help driving a standard)
3. Further to follow about neck pain.


No meds to help with pain - that was expected - appointments will be every six months now.
To follow exercise I can do from KickAS for AS.

Makaylah didn't like doctor hurting me - tried to push him out of the way.

We are both happy to be home.

Hugs & Kisses
Gerri & Makaylah

Doctor was just testing joints not intentionally hurting.

Hugs
Gerri & Makaylah

Hi Gerri,
Glad you got your dx's finally. I hope there is something they can do to help. Makaylah just had to show them who the boss was! Good dog.

Did you like the doctor? Did you like how it went? Did you want something for pain? Did they ask you how much pain you were in?

Your dog must want to protect you, that is cute. Glad you got a diagnosis, hope it went as you had planned.Take care!

My Rheumies and the Clinic "Psoriatic & Lupus Clinic at Toronto Western Hospital are great. They held out long enough to finally get the PsA definitive diagnoses. It was a year before they were able to view the x-rays of my SI joint, neck etc. If I didn't have the pitting of my fingers this last visit, I was on my way to the AS department at the same hospital, because of the fusion at the SI joint. I guess they like me in the Psoriatic & Lupus Clinic.

Same old story, the Biologics were offered but taken off the plate because of my allergies. I am aking one day at a time and doing my daily exercise of taking Makaylah out for a walks - so far has help me get to the next day.

I am always scared that I will have a flair like I had in 2005 - being alone - no family around to help - with my other health issues - I can't let myself think about.

The doctors know how much pain I am in - my ESR & CRP and other pain markers are always high - but breathing for me is a better option. (my allergies cause severe breathing problems)

I am thankful to you and Pea and all my friends here at kickAS who help me keep going. When my depression is bad, and when I am hurting so bad, the hugs and a or two scratchies to Makaylah always puts a smile on my face, and keeps me going for another day.

Hugs and much love
Gerri & Makaylah

hi gerri,

there is so much overlap in symptoms between the two, wondering why they were so determined to determine one from the other, especially if you have both the skin and spine involvement? shouldn't they just be treating both? pardon my confusion.

and i know you have a lot of allergies so can't take most meds, but wondering if there is any med you can take? sound like the very serious flares are pretty far in between, that's good, but still, i know how scary a really bad flare is, and can only imagine what it would be like if i had to do it living by myself. glad you have Makaylah, but if that happens again, please do reach out to others for that period of time. i think if i asked more, more people would come to help, but when we hurt, its so easy to do the opposite; for me anyway.

right now since i only flare every few months and can manage in between, i take the short lower dose pred taper. but i'm assuming you can't even do that; is that the case? well, if so, for the first dozen years of this (or more), before i could find a doctor to dx and treat me, i would just get by with bedrest and lots and lots of ice. then ultrasound at the PT office to recover. it got me by. though so much more thankful now for the prednisone; hoping that short bursts of it will be ok. i have good doctors monitoring everything; hoping that will be enough.

no allergies to ice and ultrasound

glad you are in the care of good doctors

Hi Sue,

as there is so much overlap the PsA clinic has me as their patient forever now. Until Monday, they were waiting for signs of Psoriasis, before diagnoses me with PsA, (which I now have). Until Monday, it was my understanding I was being transferred to AS clinic, because of the fusion, in my SI. I will not be transferring - I have PsA with Fusion of the SI. If I had been transferred - I would have AS with Psoriasis. As my Rheumy explained they are the same - just depended on which clinic I was in.

The treatment is the same for both, and I have been offered all the biologics, unable to take any, or any other drug that has sulfites in them (here in Canada that is most). Unable to have NSAIDs either because of my Asthma. As there is also a question whether I have Porphyria or not - until genetic testing (could be another year) - most other drugs are taken off my list of possible safe drugs.

Unable to take Pregnenolone which I believe is the sister drug to prednisone, because I went into super allergic reaction within 30 minutes at a very low dose.

Not sure if you are aware Prednisone will cause you to have severe diabetic problems, especially with diabetes in your family.

Hugs
Gerri & Makaylah

Hi, Gerri:

What amazes me is not presentation of psoriasis issues with AS (which are very common), but the fact that an educated person, like a physician, would think that the same individual would actually have TWO RARE diseases! It is possible, statistically, but also very improbable numerically.

And another very weird thing is that this doctor attributes SIJ fusion to Psoriatic Arthritis and not AS?! I mean is that what I am supposed to believe (did I read this correctly)?

I can't understand why AS ALONE is just not enough! And the diagnostic malpractice is so widespread! It is not just this physician, but so many others can fool themselves and their patients often suffer for it--so many times the physician who cannot diagnose AS, also cannot treat it successfully: The misdiagnosis of fibromyalgia for example has delayed mistreatment of AS for many many years in some cases.

Good Luck with Your treatment plan.

HEALTH,
John

After going to a couple poor Rheumies (even though I clearly had AS with fusion), they would not diagnose me with AS. If I had been referred to the AS clinic in Toronto, my diagnoses would be AS with Psoriasis.

Instead I got a referral into the Psoriatic & Lupus Clinic in Toronto. As I am their patient, I am now diagnosed with Psoriatic Arthritis with SIJ fusion. (My Rheumy says it is the same and treated the same). (Nearly 8 years after joining KickAS).

Hope I was able to answer your questions.

Hugs
Gerri & Makaylah

thanks gerri,

i was aware long term pred use could do this. but hoping, i guess, that the short term use, won't. but then my liver enzymes have gone back up again. and i did take pred in between there.

well, we'll lose weight. see if that helps the liver recover. if not, maybe i have to revisit the short bursts of pred.

how much do you know about using it for 6 days every 2-3 months?

its easy to find info on extended use. but short term use, not much info on that. my doctor seems to think its safe when used like this. he did say twice a year. wonder what he'll say when i tell him i needed it after ~2.5 months from the last time.

thanks for the warning.

what can you tell me about short term (6 day) low dose (4mg pills) every few months?

any links for me to read?

thanks