KatT's Journal

[jiml]

Shame about the Rheumatologist Kat hopefully he will switch you into something else when he sees that cosentyx isn't working in fact the arthritis is worse

Baby steps is the best way and not to bother to much if the weight doesn't fall off straight away. I wish you luck

[KatT]

OK….updating my neglected journal!

I have been feeling like I have been in a constant flare up for the past month and a half which caused trouble walking, going up or down the stairs, lifting things, opening jars, swollen fingers or the whole hand, sleepless nights and a few tears when combining the pain and tiredness  

So I had an appointment with the rheumatologist on September 16 and he finally listened when I said Cosentyx wasn`t working for me.

By not working, I mean for the psoriatic arthritis as I never saw any improvements.  I was 100% clear of psoriasis until about two weeks ago. 

I think it wasn`t improving my PSA, just keeping it from getting worse and now completely failed.

The appointment:

I was totally unprepared for…..my rheumatologist basically looked at me and said ok….what do we try next…..If I would have known, I would have looked up what was available in Canada (my bad)…. will be prepared if what he prescribed doesn`t work.

He saw the look on my face and back peddaled and simply said patients usually suggest the treatment.   OK...but in my view, he knows what I have tried and what should be the next best step….but anyway….

He didn`t want to try oral medication like Otezla so he prescribed Simponi….back to TNF

The side effects seem scarier than the other biologics I have tried but…..I will try ANYTHING at this point.

Took my first injection on October 6th!

No side effects so far

The other TNF I had tried and not very long was Humira….had to stop as my face swelled up a lot.  Hopefully this won`t happen this time around.

I do have an appointment with my GP to discuss:

1. Better pain medication as what I have right now is not strong enough when I am in agony and can`t sleep

2. I am suspecting a possible repeat of my 2018 incident but with liquid around the left lung only (not the heart) as my left side has been bothering me for three weeks now….I will ask for Xrays to rule that out

3. Obtainig a medical note/certificate as I need a valid justification to pull my daughter out of school so she can continue virtually given that the covid situation is getting worse in our region

Fingers crossed!

[Caroline]

I reread your journal. And nor Jim nor I have asked you if you have ever used DMF.

[KatT]

No.  I've googled it and I don`t think it is used here in Canada for psoriasis or psoriatic arthritis…..

I've tried so far:

MTX
Leflunomide
Humira
Stelara
Cosentyx

[Caroline]

Okay..
Well there are still a lot more Biologicals, so still a number of them to try.

A pity that DMF is unavailable. I’ll tell you why.
We then need a bit of a different view of what psoriasis is. What I will tell you here is coming from my doctor. He is an internist (internal diseases) not a rheumy or a derm.
If you have swollen joints, then it would be possible to puncture them in order to research the fluids in them. And if you would look into that fluid you would find crystals of pyrodrustic acid. Those crystals cause the joint pain and inflammation.

Now where do these crystals come from?
Well they are the residue of a flawed energy cycle in the mitochondria. This cycle, the citric acid cycle, does not work correctly with people with Psoriasis and as the chemical reactions in there do not work completely the pyrodrustic acid is created as a residue.
This would lead to the conclusion that psoriasis is not a skin disease, not an auto immune disease (which is an acceptable theory because anti-bodies that belong to auto immune diseases cannot be found), but... it is a mitochondrial disease (!), who had thought of that? Well I can assure you...none of the derms or rheums, but for an internist this really makes sense.
This has never really been scientifically researched by derms or rheums, but this theory already exists for at least 35 years, and seems in fact a very logical en easy explanation and maybe (I am not completely sure) is lies on the basis of the use of DMF, invented by Schweckendiek.
What now is the role of DMF.

If you look at Wikipedia to this citric acid cycle than you will see that in one of the steps of this cycle it says: “fumarase or Fumarate”, so fumarate is an essential part of the working of this cycle.
The theory is that by increasing the amount of fumarate, the reactions in the cycle will be enhanced and the amount of residue produced will reduce or even stop, leading to the gradual slow down of both psoriasis and Psoriatic Arthritis.
The cycle will work also a little faster and generate more energy, so if you do this, body temperature rises slightly.
Now it is not possible to put fumarates in the mitochondria and also not possible to put it in a pill to swallow it. But.... it is possible to make an ester of the fumarate (DMF), that will be transformed in the body and transported to the mitochondria.

That is the reason that I use DMF. And the reason why DMF works for 50-70% of the sufferers including me. It is pointing at the origin of the disease.

[Fred]

Good luck with Simponi KaT I don't recall anyone here using it. *You may want to change your treatment in your profile by the way.

I'm a bit surprised they put you on another TNF if you had problems with Humira, I would have thought Tremfya would have been your next move going by what you have tried.

As you say finger crossed. 

[jiml]

Ohhh dear KatT I m sorry that cosentyx has failed you and you have been suffering so much with the arthritis. Hopefully the simponi will give you relief from the pain and swelling and as others have said if you do react badly there are still several options open to you
I didn't mention dmf treatment as I know its not available to you sadly although a great effective treatment it is not widely accepted by dermatologists and in my case the rheumatologist wanted to take me off it as its not prescribed for arthritis here
And many don't like the side effects but those that do get it here have good long term clearance

Good luck I hope you get some good sleep very soon

[KatT]

Caroline:  

very interesting......more research with rheumatologist, dermatologist and internal medicine specialist to pinpoint the source would be beneficial. 

Fred:

Tremfya is not available yet in Canada.   I think he prescribed it because I had a reaction to Humira but Simponi while yes, it is another TNF but maybe I won't have the same reaction....different company, different ingredients and f I recall, humira was a injection every two weeks.  Simponi is once a month.   

I will stop the treatment if my face swells up a lot like it did before

Thanks for reminding me of my profile....I will update it 

Jim:

I find that we are behind in approving biological treatments here in Canada but there are still a few available and hopefully more will get approved soon.  I have been a bit better for the last few days.  Is it the injection? Less rain? Coincidence?  I doubt Simponi would work that fast....

Thank you all for your support 

[Fred]

Maybe worth asking again.

Toronto, ON(November 15, 2017)--Janssen Inc.announced today that Health Canada has approved TREMFYA™ (guselkumab) for the treatment of adults living with moderate to severe plaque psoriasis who are candidates for systemic therapy or phototherapy.

And better still.

Toronto, ON, September 10,2020–The Janssen Pharmaceutical Companies of Johnson & Johnson today announced that Health Canada has approved TREMFYA®(guselkumab injection) for adult patients with active psoriatic arthritis (PsA)

[KatT]

Uhm......the site I looked into was not updated.

What I find odd is two articles three years apart....2017 and 2020

Will keep this in mind if Simponi doesn't work