Linaclotide (Constella), Cellcept and other news

[MAT51]

Hi All. I saw my vascular doctor and a gastroenterologist just before Christmas and still have no real sense of a treatment plan. The gastro was lovely though and apologised on behalf of the scottish medical profession for various abdominal struggles and poor treatment I've received over the past 3 years. He's put me down for a barium swallow which I'm to have on 1st February - looking for gastroparesis I think. But I rarely regurgitate food - I just have spasms in my oesophogus if I eat certain indigestible foods or recline in a certain position. I'm on max Gerd medications and don't feel it's gastritis or heartburn but could be wrong of course.

Meantime he's put me on 290mcgs daily of Linacloctide to hopefully help with my chronic constipation. So far (5 days) I'm rather happy with this new medication - which I guess confirms that my problems are due to IBS-c and systemic dryness/ lack of secretions due to my Sjögren's? This is making me wonder if I should bother putting myself through the Barium Swallow?

Less great is that the widespread numbness and disequilibrium continue to be very dominating although they don't seem to be progressing just now. I just feel always off kilter and this makes me very tired and nervous of crossing roads, falling, missing steps etc. I still can't stand for any length of time - and still have pins and needles the length of both arms and permanent loss of sensation in finger tips and a numb face.

The vascular doctor reports that my immunology is still negative apart from +ANA of nucleolar pattern. My CRP and PV (better version of Sed rate) are still high but these aren't of interest apparently as just go with Sjögren's. My excellent GP/primary doctor and I are less sure about this though. We both feel something more inflammatory is going on that hasn't yet been discovered. Vascular doctor writes "I do struggle with the concept of her Mycophenolate (Cellcept) here and the patient is aware that I'm not entirely certain I know what we are treating with this drug.". I'm told to remain on it for now.

Meanwhile I've been asked to test my BP 3 x daily and seem to only get a high diasystolic and occasionally it plummets to barely registering. I feel totally out of my depth with the 3g Cellcept. Currently nursing a heavy cold with swollen glands and worrying vaguely about all these red patches that itch intermittently on my face. I had to bully a GP to put me forward for a dermatology appointment to get them checked to rule out skin cancer. As it is non urgent (to her maybe!) I won't be seen for months so I'm trying to ignore them - particularly the large dark rough and rather sore one on my lip. I thought it was just chapped for ages but conclude this is only part of it. Something isn't quite right but maybe it's all just Sjögren's related.

The one specialist of mine everyone is waiting to hear from has not yet spoken - she being my neurologist.

[MAT51]

I know how to edit/ modify but how do we delete posts?