KatT's Journal

[KatT]

I'm a bit late updating.

January 10th:

took my 6th 300 mg dose....still no improvement. May be due to the weather.  Wondering if I should continue for another two months to see or if I should switch.  I have an appointment with my rheumatologist in about a week or two.  Will see what he says but I'm pretty sure he will recommend to try another treatment. 
 

Also had the appointment for the pulmonary capacity test that the GP insisted I do after I got sick in September because:

1. Apparently I'm getting old....really??? I thought I was 28!!
2. I'm a smoker 

3. I'm on biologics

Anyway, the technician was saying there were no issues and I don't have COPD....unless he just wanted to be nice.  I felt like Darth Vader LOL

The official results should be sent to my GP soon so I'll book an appointment just in case the specialist doctor has a different opinion than the technician.

[Fred]

I would give it a bit longer to see if the better weather helps.

Nothing wrong with thinking you are 28. Unfortunately the body doesn't always believe us.

[Raxyl]

Here's hoping it kicks in as you get out in the sun more. For me at least, giving up smoking did affect how well the medications worked, having said that I had my worst flare-up ever after I gave up smoking.  I feel sure you must be 28, the Dr is clearly deranged.

[KatT]

What sun????  It's gone to hibernate ... We have clouds, freezing rain, tons of snow with humidity levels that are really high 

You are teasing me with your sun 

Not easy to quit smoking either.....hats off to you for quitting   

And of course I am 28!  Why would I lie about that 

Appointment with my rheumatologist is next Monday....

[KatT]

OK...late update:

February 3rd, 2020 had my appointment with the rheumatologist.  He wanted me to continue on Cosentyx because according to him, its the third treatment and the third treatment should always work!

He forgot that the first treatment (Humira) was stopped early as I looked like I went into a boxing ring with a professional boxer!  And of course I didn't think about it either during the appointment   

So I am now on my 9th correct dose of Cosentyx (300 mg) with absolutely no improvement to the arthritis.  It's actually getting worse as time goes by and especially since I am working from home since I move less.

My fingers swell up more often (this happens on a weekly basis and lasts for a day or two or three depending on the weather) and my toes sometimes.  And of course, arthritis in the feet (this is new), ankles, knees, wrists and elbows.  I feel stiff in the morning which gets better after a shower and moving a bit but as the day progresses gets worse.  

Psoriasis is still 100% clear.
 
Now I was supposed to have an appointment next week but he is only taking emergencies so I will continue until I can see him.

In the meantime I am (for the past two weeks):

• trying to lose weight (gained 15 covid pounds) by reducing my sugar intake....in other words, my wonderful, treasured, beloved Tim Hortons Iced Cappucino (was up to at least 2 large per day) now down to one medium per day.  I miss them dearly    No real sugar in my coffee either.  Drinking water (was never drinking water before), up to two bottles per day.  Also eating very little bread, pasta, potatoes and rice.
  

• moving a bit more during work hours instead of staying glued to my chair for 7.5 hours straight!  
  

• going for walks with my daugther (also to prevent her from turning into a vampire) for approximately 45 minutes per day when weather permits. We had a heatwave this week (up to 40 degrees but very humid) so it was great for walking....not so great for PSA
  

And when I can't endure myself because of the pain or lack of sleep (due to the pain), I have the strong painkillers that I was prescribed when I landed in the hospital in 2018.....still have a few left  

That's it for now until my next appointment with my oh so wonderful rheumatologist!

 

[Caroline]

That is not so fine for your Psoriatic Arthritis, odd that Fred did so well on it and you don’t. Clear that from person to person we differ a lot.
Perhaps indeed a bit of changing your lifestyle can help in reducing the inflammations.

[jiml]

That's a shame it's not working on the arthritis Kat after 9 treatments I would have thought there would be some changes for the better

Good luck with the weight loss I think a lot of us are struggling with that with the lockdown and more snacking
Hope you get some luck with the rheumatologist next week if you get to see him or at least get a phone consultation

[Fred]

"the third treatment should always work"  I've lost track of how many I've tried and still none of them work 100%

@Caroline Yes it is strange, it did work great for me but it stopped working for psoriatic arthritis I went from remission to a score of 17. 

Psoriasis is hard enough to treat but with psoriatic arthritis it seems as though some of us have it a lot worse than others. Some people say they have never had the locked up problem or giant toes, and as in my case from once unable to move to being free but then getting locked up again. Also some  get it only in one part of their body and others get it in almost every bone.

It's a shame KatT but it looks like you are in a similar place to me, I can't take the TNF's and just can't find an IL that works 100% all of the time.

Hope you find something soon.

Good luck.

[artemie]

Sorry to hear your treatment is not catching on, Kat. Hope you get fitter with loosing weight!  You can maybe also try to eliminate some other foods, for a few weeks to see if that helps with the inflammation.

[KatT]

Yes....my rheumatologist is the best.......NOT!!!  He doesn't have a good reputation and unfortunately, he's the only one in our region on the Quebec side  

If I go on the Ontario side, I need to pay for every visit. (Approximately 125$/visit)



I am going slowly with changing some habits.....it's not easy!  Starting to see small results on the weight issue....not fast enough for my liking

More food to eliminate??? 

Will go read up other things I could change in my diet...

Baby steps!!!  If not, I will give up