My cosentyx story

[Fred]

Hello Marcia,

Thank you for updating I'm sorry to hear of your problems. Would it be worth you missing your next Cosentyx for a month to see if you notice any improvement?

You may be interested in this: Cosentyx gives rapid skin clearance after a pause

I hope you get to the bottom of it very soon.

Good luck.

[Marcia1966]

Hello again, yes my GP has reported my symptoms to the drug company, nor art is, we have to because he says it's a " black triangle drug" ( I have no idea what that means ) but I have to report all symptoms and side eff cts on the yellow card scheme because so little is still known about the effects, with it being fairly new.     

I am very tempted to miss this months dose, and then by next month I will have seen both my dermatology and gartoentetology consultants.  

Thanks to everyone for your comment    

Sorry I don't know how to reply to individual messages yet.

[jiml]

Hello again, yes my GP has reported my symptoms to the drug company, nor art is, we have to because he says it's a " black triangle drug" ( I have no idea what that means ) but I have to report all symptoms and side eff cts on the yellow card scheme because so little is still known about the effects, with it being fairly new.     

I am very tempted to miss this months dose, and then by next month I will have seen both my dermatology and gartoentetology consultants.  

Thanks to everyone for your comment    

Sorry I don't know how to reply to individual messages yet.

Don't worry Marcia it's easy to reply to a post if you want to
Instead of hitting the new reply button ....just above that is the quote button  hit the quote button and scroll to bottom of the message you are replying to and start writing after the last [/ quote] box at the bottom ....
Write your reply and then post reply as usual
about your Cosentyx I would delay the injection myself ...maybe not for a month but at least until they find what's causing the problems

[D Foster]

Hi Marcia welcome to the forum. Sorry that you are having problems with the cosentyx, I am on Stelara at the moment and am looking to get on to cosentyx soon. I can relate to the stomach problem that you have as I was just like that when I was taking Naproxen for the PsA with bleeds and ulcers. I will follow with great interest to see what the conclusions arise from the tests etc . Had some chest infection problem and I have just received a letter from Janssen the Stelara manufacturer asking for a report on the problem. I wonder if they are all getting a bit tighter on follow ups.

[Fred]

Hello again, yes my GP has reported my symptoms to the drug company, nor art is, we have to because he says it's a " black triangle drug" ( I have no idea what that means ) but I have to report all symptoms and side eff cts on the yellow card scheme because so little is still known about the effects, with it being fairly new.     

Yes the "Black Triangle" means it's a new treatment and although it has passed the regulations they want people to report any adverse effects. It lasts for 5 years and the drug is then reviewed. So patients input no matter how small helps them decide if the treatment should be continued or modified.

No matter how many checks and tests they do on new drugs before release it's not till they become widely used that they find out more about side effects. They will look at the data and see how many people have reported the same problem.

I don't know the figures involved but let's say you are the only person reporting the problem the they can probably be assured that it is not related, however if a 100 report the same problem then they know it something that needs looking at. From there they will decide on the future of the treatment and probably do more tests or ask other users for feedback.

All treatments (even natural) have risks, but the Black Triangle is making sure that you the patient can give your feedback and shape the future of new treatments.

*I think the system was put in place after the thalidomide problems.

[Marcia1966]

Ok so here is my latest update on my treatment with cosentyx. Which I started in December, after six years on oral methotrexate.   

In January I started experiencing severe stomach pain.   This led to various investigations, as symptoms worsened and new symptoms appeared.    I had a gastroscope ( camera into stomach ) which found Gastritis, I had none of the usual causes for this i.e.  use of NSAIDs, and I am negative for Halibactor pylori bacteria.   I have bile reflux into the stomach too.  Also since January my bloods tests each month were going down in heamoglobin and ferritin.   I had a ferritin level of 5 ( should be between 100-400 ) and vitamin D of 13 ( should be over 50 ).    I had an emergency iron infusion.    My liver shows raised gamma GT blood test too.      I have had CT scans of chest, abdomen, and a CT colonography because they suspected a GI bleed, no bleed was found.  

In meantime I have lost 35lbs in weight.   I have zero energy, my hair is falling out probably because of iron deficiency anaemia.    My dermatologist is concerned that th cosentyx maybe causing these symptoms with stomach, and it has been reported to norvartis on the yellow card scheme as it is a black Triangle drug.     I have three hospital consultants now on my case and they ar considering switching me to stellara.   I have my next appointment this Thursday.   My psoriasis is breaking through again now, after nine months on treatment.     I do not wish to put anybody off trying this drug, but I think it is important to share as much knowledge as we can.  Plus I was asked to keep you all updated. 

I do hope that everybody is doing well, and Fred please move this to another thread or topic if I have posted it in the wrong place.   I am not that great at knowing where to put my posts!

[jiml]

You have put it in the right place it's your thread and you are keeping it updated well  

It's a shame if it is  the Cosentyx causing the problems ....but with three consultants looking at you they should be able to get you sorted ....it seems likely to be the drug and the easy way to tell is to switch to Stelara or to stop and see if your blood values recover and your hair starts to thicken

I hope you get some definite reason for the problems soon ....I wish you getting back to good health soon  

[Caroline]

Thanks for the reporting Marcia.
Be it or be it not the Cosentyx that caused your problems, it is very good to see a description that might be added to it.

Hope you recover soon !!

[Fred]

Hello Marcia, you post is in the right place. Like Jim said it's your journey so best kept in one place.

Sorry to hear that Cosentyx could be the problem, and you are right to pass on your experience, that is why we are here. Like Caroline said "Be it good or bad" we need to share so we can help others.

I hope you soon get to the bottom of this, and please do keep us updated.

Good luck.

Fred.

[Marcia1966]

Thank you for your comments,  I will report back after I've seen dermatology on Thursday.  I'm also due gallbladder surgery. The surgeeon says he wants me off cosentyx pre op due to the higher risk of infection, but the dermatologist is saying that coming off treatment I will flare up badly,  but perhaps that will be a good time to switch treatments.