My cosentyx story

[jiml]

Yes it might be a good time to come off and see what happens ....get the surgery over, and hope you don't get a bad flare up ....then maybe go on to Stelara ....whatever you do I wish you good luck and a speedy return to good health ...

I look forward to hearing from you after Thursday

[Marcia1966]

Hello everybody,  I hope you are all keeping well as you can and enjoyed the summer.   I have successfully logged back on ( thank you Fred!) I’m not too good at remembering passwords etc ....
My latest update is I remain on cosentyx. I had gallbladder surgery October 2017, but surprisingly even though I had to miss a dose, therefore going 8 weeks between, I didn’t flare up as much as expected.   I have had episodes of odd tiny deep red spots which flare for a couple days then vanish. I also have no idea if the cosentyx caused my ferritin to fall to 5, or vitamin D Deficiency, needing an iron infusion six months after starting cosentyx treatment. At present time though I am fairly clear apart from my legs which have thin plaques all down to calves. Can’t complain. One worrying thing which my dermatologist isn’t sure about has been problems with swallowing and a slightly enlarged right tonsil for no known cause, not infection nor anything sinister. At first the GP thought I was making a fuss and I felt unbelieved, until the swelling became visible around March time.  My weight continues to drop from 100kgs at start of treatment December 2016, to 75kg today. Not that I am complaining from a woman’s figure point of view....but a little concerning.  There are new NHS guidelines in UK regarding adult tonsillectomy and I’ve been advised to have surgery privately, to see if it solves the “food stuck” sensation I’m having swallowing.  I’m unsure if anybody else has experience throat symptoms while taking this medication or another biologic.....?     Tomorrow I am off on a short holiday in Dorset, so may not have time to check back in, so I wish you all a happy week.   I must add that this site is brilliant for newly diagnosed and those on the top end treatments,  there is lots of support here and an awful amount of hard work goes into the website. Thank you to all involved.  Best wishes, Marcia

[jiml]

I'm glad you made it back Marcia and hope Cosentyx keeps working for you and you have a great holiday 75kg sounds a good weight for you but I hope it stops there.
I don't know about tonsils but it sounds as if having them out might be beneficial to you
Good luck and hope you are able to get back on here when you return from your holidays

[Marcia1966]

Thank you, I am off to Martin Clunes area! ( one of my favourite actors ) I will be on high alert, haha!

[Grizzly Bear]

A short holiday in Dorsetshire, are you mad Marcia ?

If you go there, you’ll come back home and be as bonkers as me




I hope that your weight loss stays put and you don’t lose anymore.

Do you use coconut oil on your P Marcia ?

BIG for you Marcia

[Bill]

Good to hear from you Marcia. I hope your doctors can find some answers for you. Happy holidays.

[Fred]

Good to see you have made it back Marcia, if you ever get stuck give me a shout.

Well done on the weight loss, I wish I could lose that much.

Have a great holiday and don't forget to bring me back a stick of rock.

Fred.

[Marcia1966]

A short holiday in Dorsetshire, are you mad Marcia ?  

If you go there, you’ll come back home and be as bonkers as me  




I hope that your weight loss stays put and you don’t lose anymore.

Do you use coconut oil on your P Marcia ?

BIG    for you Marcia  

Hi I am. bonkers already as I live over the border in Somerset! Probably even more bonkers actually!! HAHA!!   No I’ve never tried coconut oil. Actually someone else told me it’s been good for psoriasis inside their ear canal - I get frequent bouts of otitis externa  for 20 years or more and now have  otomize antibiotic spray repeat prescription - maybe the coconut oils would her a better option.  Thank you

[Marcia1966]

Good to see you have made it back Marcia, if you ever get stuck give me a shout.  

Well done on the weight loss, I wish I could lose that much.

Have a great holiday and don't forget to bring me back a stick of rock.  

Fred.

Thanks acres - I do t know if I can find any sugar rock. It there is a massive pile of stress e in the town square where a bodged bank robbery occurred recently in Beaminster - Apparently a digger was rammed into the side of the bank in town square in an attempt to seize the ATM!  But  money ended up buried under the mess!  It’s like something from an old black & white Ealing comedy film! Will probably find an article and photo on google!