My cosentyx story

[Grizzly Bear]

Hi Marcia


Hoping all fares well for you.

Sincerely hope that your psoriasis is getting better for you.

I found Dorchester very good.

Didn't like yeovil, hated the dermatology department there. Though when I lived in South Petherton, the dermatologist was a young lady whom was good.

Good luck Marcia

[Marcia1966]

Hi everyone 


Apologies for not replying sooner.  I received the newsletter email today which reminded me!  Also since I started my thread about my cosentyx story, so much has happened to me health wise, I have not had much opportunity to keep up with online things.

Thank you to all of you who have enquired how I'm doing.  I can now report that I started cosentyx December 2016.  I had to miss 2 loading doses due to being on antibiotics for infected psoriasis.     It after that I carried on have had my month 4 injections last week.

I started to clear around mid February. And then it really was quite dramatic. I could literally see the difference each day.!  

BUT NOW the good and the bad news...

My skin is almost clear, apart from three stubborn areas,  I cope with these fairly well using epiderm ointment.  Yay!  Miracle as I honestly never thought I'd get through that last flare up. Even the Drs were shocked how bad I was.  However, about 6 weeks after I started treatment I started to have stomach aches. Only mild at ffirst. I felt full after a few mouthfuls, and couldn't eat many foods without getting discomfort and sometimes instant pain.   Cramping, churning, lots of acidity and needing to burp a lot.  I began to feel very ill.   I started to take a bucket to bed because I felt sick nighttime.

I had been getting a lot of joint and bone pain too, so the dermatologist referred me to rheumatology.  Blood tests showed I had been getting increasingly anaemic and also had very low vitamin D defficient too.  That was last week.  

 GP thinks I may have an ulcer bleeding maybe IB, due to results of other bloods.  I am on a 2 weeks urgent referral for gastroscopy, colonoscopy and ultrasound of abdomen.   I am so upset.   My skin is fairly amazing. It I have all these horrendous symptoms which may have been caused by the treatment.   And to even think of my psoriasis returning to last years state is unbearable.   

 To top it all I'm due in surgery on my legs on Wednesday to correct my foot function (my legs were badly damaged after previous light therapy and medical negligence in 2008)
 phew!  Thanks for getting to the end!

I must add - everyone is different, so please don't let this post influence any treatment you on or being offered.  

I wish you all good health and healing and gentle hugs xx

 

[mataribot]

Crohns or any inflammatory bowl disease is genetic disorder. Some medications can cause the disease to flare. Consentyx is a medication that can cause flares in the disease. What is unclear is if IB can be drug induced side effect. If it's drug induced, then stopping the treatment may revert the issue.

[Caroline]

Quite a story Marcia !
Hope you and the doctors are able to sort it out quickly and nothing serious is going on.

I guess they will want you to do something on your vitamine D level, that is anyway very important. Vitamine D also moderates the IL-17 pathway, just like Cosentyx does. But vitamine D does many more things.

Good luck, I hope you are well again soon.

[Fred]

I hope you get sorted soon and please do report back as it will help others to know if it definitely was Cosnetyx that caused the problem.

Good luck.

[Grizzly Bear]

Goodness me Marcia, as you say, it's good and bad news.

The good news is that your P is getting better but bad about your stomach problems.

Thank you for keeping us posted.

We are here to listen to you and if we can guide you, we will

BIG hugs for you Marcia

GB

[Turnedlight]

Hi Marcia nice to meet you

I can't believe your burns story - I burned too after three sessions on half of the lowest dose but it wasn't third degree, I did end up erythrodermic from it and on steroids though. But your story is horrendous! The sessions are time based as far as I know, the lowest being only about ten seconds or whatever..

[Marcia1966]

  Hi everyone.    As promised another update about my possible problems with cosentyx.   I said last time that I had been having severe stomach pains and was due to go for some tests.   On Wednesday I had a gastronomy into stomach and duodenum, they saw I had lots of inflammation and some bleeding.   I was diagnosed with gastritis and bile reflux into stomach too. Apparently there are three types of this.     They took some biopsy.  I was found negative for the halibactor bacteria, which is a common cause for gastritis.   I also am not taking any NSAIDs, so that leaves it to be the third category which I've read can be auto immune or caused by side effects of other drugs?   The cosentyx is known to cause inflamed GI tract.   I have pains also throughout the digestive system.   I will know more once I've seen the specialist, and the dermatologist.  My hair has started to thin out, I have lost over two stones in weight.   In the meantime I am due to have my monthly cosentyx injections on may 20th.    I'm very uneasy now.   The bleeding has made me very anemic, I have yesterday had an emergency drs appointment due to being doubled up, he said that I'm unsuitable for oral iron supplements so is going to arrange an infusion.   My low vitamin D is being treated with D3 3,200 tablets.     I never had any of this before I started the treatment.    My skin is quite good at the moment with just a few areas starting to flare, I'm using dovobet ointment on those and epiderm ointment for moisturising.     Sorry for long manning post, but some of you asked me to update.   I will let you know later what happens.    

I do hope everyone is keeping as well as possible, and I really hope that if you are starting on cosentyx pleas do not let me put you off.    It's not yet 100% certain that's what is causing me to be ill.   Have a nice weekend x

[jiml]

  Hi everyone.    As promised another update about my possible problems with cosentyx.   I said last time that I had been having severe stomach pains and was due to go for some tests.   On Wednesday I had a gastronomy into stomach and duodenum, they saw I had lots of inflammation and some bleeding.   I was diagnosed with gastritis and bile reflux into stomach too. Apparently there are three types of this.     They took some biopsy.  I was found negative for the halibactor bacteria, which is a common cause for gastritis.   I also am not taking any NSAIDs, so that leaves it to be the third category which I've read can be auto immune or caused by side effects of other drugs?   The cosentyx is known to cause inflamed GI tract.   I have pains also throughout the digestive system.   I will know more once I've seen the specialist, and the dermatologist.  My hair has started to thin out, I have lost over two stones in weight.   In the meantime I am due to have my monthly cosentyx injections on may 20th.    I'm very uneasy now.   The bleeding has made me very anemic, I have yesterday had an emergency drs appointment due to being doubled up, he said that I'm unsuitable for oral iron supplements so is going to arrange an infusion.   My low vitamin D is being treated with D3 3,200 tablets.     I never had any of this before I started the treatment.    My skin is quite good at the moment with just a few areas starting to flare, I'm using dovobet ointment on those and epiderm ointment for moisturising.     Sorry for long manning post, but some of you asked me to update.   I will let you know later what happens.    

I do hope everyone is keeping as well as possible, and I really hope that if you are starting on cosentyx pleas do not let me put you off.    It's not yet 100% certain that's what is causing me to be ill.   Have a nice weekend x

Oh dear Marcia ....that's quite a lot going on ....can you phone the dermatologist and ask if you can postpone the injection until you get results ...the last thing you want to do is make it worse ....
Hopefully it won't be the Cosentyx causing the problems....but whatever it is the sooner you find out the sooner they can start to get you right again.....
Good luck and thanks for letting us know
Have you been in touch with Cosentyx directly to see if they can advise there web address is here at the bottom of the page Cosentyx (secukinumab)

[Bill]

Hi Marcia,

From what I read there was a trial of secukinumab for Crohn's disease which failed; In some patients it caused gut inflammation. Secukinumab does not pose an increased risk for gut inflammation with p and psa. Can you be tested for Crohn's? I hope you can sort things out.

Best wishes.