duppydoo

[duppydoo]

hiya peeps hope your all feeling ok today duppydoo here . well as i said i had an appointment to see clinical research team my appointment was talking about the things that affect us all . this particular doctor specialises in sclero so an understanding doctor was fab . i told her about all my ailments which im sure you all get to but strangely she had never heard anyone mention about the awful running water we get in our mouths which i refer to as the waterfall so she will look into this . she referred me to physio too as hands just awful at night bending inwards and swollen so physio made me a hand support to keep fingers straight at night uncomfortable at first but keeps hand more comfortable . now i have a question are any of you taking mycophenolate mofetil as this doctor will be prescribing these for me on my next visit . could you let me know if you are thankyoo .spk soon peeps have a nice day .

[GillSuffolk]

Hello, I have systemic scleroderma, just finished 7 months taking Mycophenolate, which sadly did not help at all, have now started on Methotrexate, injecting myself weekly as I have a gastric bleed & taking this medication orally would have made this worse. I wish you well X

[duppydoo in reply to GillSuffolk]

hi gill sorry im late in thanking you for your reply .as i said i will be prescribed these tablets on my next visit in 6 weeks time i think i was worried more about side effects as we suffer enough with everything else we contend with dont we my hands just swelling like crazy now. and so sorry to hear you have gastric bleed .all these bloomin tablets . thankyou for your reply and i will let you know how i get on ok . hope your days a good one take care .

[pallinurse in reply to duppydoo]

The gastric friability and esophageal erosion tendencies are such a pain because it prevents us being able to take anti-inflammatory agents that could treat joint pain and other areas of inflammation!

I have synovitis in my knee now, and am having pretty good luck with a topical anti-inflammatory liquid (diclofenac). No bloodstream absorption affects that have bothered my gastric ulceration spots so far and on it for 8 weeks. Knee not fully better yet but I can slowly do stairs without yelling curse words when I weight bear....

[Lyndabickley]

Hi

I have had systemic scleroderma for about 12 years and have taken mycophenalate for about 9 of them. I was very bad to start with and was admitted to Royal Free with a view to having gamma globulin but thankfully it was not necessary as mycophenalate worked. My condition is now stable and I no longer take it but suspect I could have stopped a lot sooner. I had no significant side effects but was warned initially to look out for negative reactions which scared me a bit since I started over a weekend! I now take Losartan, Tildeum, and stuff for gastric reflux, ranitidine and lanzoprozol. I still have a number of disabilities like bad contractures of the hand and frequent digital ulcers for which I have Sildenafil and occasional Iloprost, but I cope with them. I have a sacral neurostimulator for bowels and both peristeen and qufora wash out systems. Colostomy has been suggested but I'm not in a hurry for that! I have learnt to live with this condition and get on with a pretty full and enjoyable life.