Starting on Cosentyx treatment

[jopoh]

Hello everyone, I am getting my first cosentyx jab tomorrow. Feeling both excited  and slightly apprehensive at the same time. I have been having psoriasis for the last 20 years or so. Been on UVB the last 7 years but lately it's been losing its effectiveness. Am wrroied about the side efffects of cosentyx so any tips or advice would be very much welcomed.

Wish me luck !! Will post updates along the way!

[jiml]

Hello everyone, I am getting my first cosentyx jab tomorrow. Feeling both excited  and slightly apprehensive at the same time. I have been having psoriasis for the last 20 years or so. Been on UVB the last 7 years but lately it's been losing its effectiveness. Am wrroied about the side efffects of cosentyx so any tips or advice would be very much welcomed.

Wish me luck !! Will post updates along the way!

Great news jopoh good luck   with the Cosentyx I’m sure it will work well for you, and I don’t think you need to be fearful of the side effects, as I have read a lot of good reports from members using it

I will watch with interest your updates   good luck

[Fred]

Good luck jopoh

I wouldn't worry too much about the possible side effects if I were you. In the unlikely event that something should go wrong it will soon be detected and stopping the treatment will quickly reverse any problem.

I've been on it 1 and half years and had Zero side effects.

Biggest tips I could give you would be:

#1 Use the pre filled syringe rather than the Pen type injections.
#2 Get it out of the fridge 1/2 hour before use.
#3 Pinch and inch of skin and stab it in quickly.
#4 Inject it in slowly. (That only applies if you use the pre filled syringe)
#5 Don't think about the side effect and enjoy the benefits that will come quickly.

I look forward to your updates.

[jopoh]

Hello everyone, wanted to give an update.

I just injected my 4th dose yesterday, I am still in the loading phase where it's one dose per week. So far the results have been good, I have been self-injecting my 3rd and 4th dose so haven't seen my doc and hence I don't have an updated PASI score yet. But from the naked eye the P has subsided and 80% no longer look like scabs or wounds, they look like patches of skin discoloration.

Some side effect or maybe tolerable discomforts:

1) I had small bout of diarrhea (which lasts for 1 day) usually 1 day after each injection
2) the skin on my ear lobes feel really dry but no big issue
3) my eyes itch or feels dry for some reason but also ok

Am looking forward to my 5th dose next tues where I will see my doc again. Will update everyone when appropriate. Thanks !!

[Fred]

Sounding like it's going in the right direction.  

Try a good virgin coconut oil for you ear lobes.

Good luck.

By the way you still have UVB in your profile as your treatment. You can change it Options

[Caroline]

Well that is going in the right direction jopoh. !
Great to read.

One possible avantage of Cosentyx may be that you will not develop anti-bodies against it, what may lead to a long during treatment. That is what I learnt recently, since the time cosentyx is available, the dermatologists suspect that it will not lead to anti-bodies (just like eternacept).
More practical reseach on this issue is required.

[Moxtina]

Hi Jopoh. I'm Moxie.

I had my first 300mg loading dose of Coxentyx on Monday. It's now Thursday. Since I weaned myself off prednisone for an MRI a few weeks ago, I have been debilitated by PsA, Ankylosing Spond & a flare of my skin. ( I was on prednisone because Humira stopped working, dead in the water, at 6 months because I developed antibodies.)

Until yesterday, since coming off the 'roids, I'd been taking about 1800 mg of ibuprofen a day (sometimes more), just to exist. My PsA is like a pinball, changing locations over the months... but it affects the ligaments/tendons in my feet, ankles and palms, and the joints of my toes, my wrists, one thumb, one index finger, my shoulders, spine, hips, knees.... I mean, suffice to say, every kind of movement brings a symphony of pain.

Since weaning off the prednisone, my rather controlled (but still existent) psoriasis was in rebound horror mode. Super flare.

Today is Thursday. It's only DAY 3 of treatment. So far, I've had stomach upset, diarrhea, a bit of a headache, a low grade fever on exertion and a great deal of fatigue. I mean, I never feel great, so it's not a huge difference but the stomach thing and headache is unusual and the fatigue is pretty extra.

HOWEVER... in the last 24 hours, I've only taken 200mg of ibuprofen. And I'm actually walking and getting about, able to pull up my pants and such without devastation. Still inflamed, of course, but the difference is noteworthy. I want to say that it's the drug, working already.

But, me being me, I need to play devil's advocate: as my stomach has been upset AND Cosentyx (and other biologics) can easily cause a flare in cold sores (herpes virus), I've been eating very little and only super basic unprocessed stuff, gluten free, avoiding any L-argenine containing foods (brown rice, chocolate, raisins, peanuts, etc. - because they cause cold sores if you have the virus). So. Here's my question:

Is the drug helping THIS fast (I had a sensationally fast reaction to Stelara, BTW, and my psoriasis was in remission within 2 weeks, so it's not totally unheard of)
Or
Is the starvation diet to thank?

Not that I mean for anyone to actually answer that. Just food for thought. I posted photos a few days ago in my intro thread. I've decided to come off dovobet for my skin at the same time as starting the cosentyx, just to see the actual results of the medication.

At any rate. I'll keep y'all posted about my Cosentyx experience.

Good luck!
Moxie

[Moxtina]

3) my eyes itch or feels dry for some reason but also ok

Ooh, ohh! Me, too! My eyes were super irritated yesterday. Interesting.

[jopoh]

Saw my doc for my 5th dose this week, was given some moisturizer for the dry skin on the face and ear lobes. Everything seem to be working fine, I would say, save for the skin discoloration for the old scabs, skin is looking good and I am probably 80-90% clear. So I am passed the loading phase now, next dose is about 4 weeks away, fingers crossed that during this 4 weeks, that the P doesn't come back again.

Will update u guys again! Thanks for the support in the meantime!

[Fred]

Good luck with the maintenance dose. Long may it continue to work for you.