Health Boards
Mon-03-09-2018, 23:19 PM
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
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