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Sierra Sierra

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About Sierra Sierra

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    UK, Lancashire

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  1. Hi Judyt and thank you for your post. You are absolutely right when you say that 'PBC and PSC are different things'. The name change of Primary Biliary Cirrhosis to Primary Biliary Cholangitis was 'announced' at the European Association for the Study of the Liver Conference in Vienna in April 2015. At that conference, Professor Ulrich Beuers of the Tytgat Institute for Liver and Intestinal Research commenced his address to the delegates by announcing that it would be the last time he referred to PBC as Primary Biliary Cirrhosis, as from now on it would be called Primary Biliary Cholangitis. This explains the difference between PSC and PBC Primary Sclerosing Cholangitis: What's in a Name? It may prove useful to you when dealing with doctors! I have also had problems with telangiectasias and I recently had to have both sides of my nose cauterised because of the little bleeders!! My nose continued to bleed (but nowhere near as badly) for a few weeks after the procedure but now, fingers crossed, seems to have stopped. My ENT doctor said that may happen but then I should be OK until or unless I develop more telangiectasias, in which case I may need further cauterisation. Anyway, thank you for replying and I love the Kia Kaha. I think I will adopt it into my vocabulary. Kia Kaha and best wishes. Sierra x
  2. Hi Jeremy Just wanted to let you know that I have recently started IPL Laser treatment for my facial telangiectasias. Although I don't have a great number of them, I do feel very conscious of them! I have them on my eyes (between brow and eyelid), on my lips (and neither of these areas can be laser treated), on my nose, cheeks and just generally dotted about my face. I also have them on my fingers but they are very small and you wouldn't notice them unless you were looking for them! I recently had to have both sides of my nose cauterised because of telangiectasias that were bleeding. That wasn't very nice and my nose continued to bleed for a few weeks after the cauterisation but, fingers crossed, it seems to have stopped now. My ENT doctor said that I should be OK unless and until I develop more telangiectasias and then I may need further cauterisation. When I decided to have the laser treatment I had a 'patch test' and was amazed that the biggest and reddest telangiectasia almost vanished from my face just from that patch test. I have had one treatment since and have noticed a reduction in size and redness of all the treated telangiectasias. As other posters have said I now have to use a factor 50 sunscreen (but I always did anyway!) and have to apply a post treatment serum for as long as I keep having the treatment. There is no way of knowing how many treatments will be needed but based on the patch test and first treatment, I don't think it will be many. I have to have at least 4 weeks between treatments and am booked in to have my 2nd treatment soon. I can't wait! Anyway, hope this helps and that you have managed to get some free consults. By the way, you certainly can't see any telangiectasias on your photo. Your skin looks fab! Sierra x
  3. Hi Missmoneypenny Thanks for your reply - as usual I've been busy working (had my first day off in 3 months just this week!!), attending medical appointments and treatments, and enjoying life and so haven't been back to the forum for a while. I'd almost given up hope of finding anyone else with both limited cutaneous systemic sclerosis and PSC. It's a lonely place to be! It brings me no joy, however, to have found another very rare person and I truly sympathise with the battles you must have on a daily basis. I know what it's like! From the info you've given it seems that PSC came first for you, whereas scleroderma came first for me. Thankfully I don't have ulcerative colitis (not yet, at any rate) which is again rare as I believe that 70% of PSCers do have it. I too had problems with feeling full for ages after eating very little but that has improved greatly since I've been on Urso. I'm guessing that you're also on Urso (ursodiol)? I'd had a very strange, and horrific, pain for several years which I found very difficult to describe, or pinpoint its exact location when trying to describe it to my doctors. I put it down to the scleroderma related issues of gastritis, oesophagitis, duodenitis, duodenal ulcer, poor peristalsis and hiatus hernia. It wasn't touched by painkillers and on many occasions reduced me to tears. It disappeared as soon as I started on Urso so that has been something of a miracle drug for me - even though it apparently won't slow the disease progression. Do you take, or have you tried, turmeric? I mentioned it in my previous posts and tried it for 3 months. It had no effect on my liver test results and didn't benefit me at all as a general anti-inflammatory. One of my other issues is chronic erythema nodosum (panniculitis) and sclerosing panniculitis and I really hoped the turmeric would help with that but it hasn't. My latest, and current flare-up has been going since March this year and is showing no sign of clearing. I was also diagnosed with Restless Legs Syndrome in August. It never ends, does it?! RLS can be caused by iron deficiency and/or kidney disease and I seem to have both so am currently taking iron tablets (month 2 of a 3 month course). I haven't noticed any improvement so far. My kidney tests are being closely monitored. I wanted to pursue both avenues before starting on yet more meds specifically for RLS. Do you have any tips for me on dealing with PSC? Has it affected your new liver? Do you have any info as to how PSC affects scleroderma or vice versa? I have so many questions and it seems that you may be the only person in the world who may be able to answer them! Take care and be strong x
  4. Hi Shelley Many thanks for both the article and moving my post to the Main forum. I was aware of the benefits of turmeric through my research but hit a snag when several of the articles I read stated that turmeric shouldn't be taken by those with a bile obstruction, which is one of the problems caused by PSC. I had pharmacists contacting specialist centres and doing their own researching, and the overwhelming advice was not to take it. However, I don't give up easily (!!) and presented my hepatobiliary consultant with all the articles, all the information from pharmacists and all the instances of turmeric being contra-indicated and then persuaded him to let me try it. Nothing to lose and everything to gain. So he is now going to monitor my bilirubin levels very closely and if they start to rise I will have to stop taking the turmeric. Although I have seen an improvement in symptoms since starting on Ursodeoxycholic Acid it apparently won't slow down the progression so I'm hoping that turmeric will help, as well as helping with inflammation generally etc etc. It's considered by some to be something of a miracle worker - here's hoping! Best wishes. Sierra
  5. Hi Joelf and thanks for your speedy response. Yes, that is the case that I found - it was written around May 2015 and accepted 26th October 2015 but wasn't published until November 2015. The article does state that PSC has been known with diffuse cutaneous scleroderma but 'has not been previously reported in the literature' in connection with limited. As I said, I can't believe that I'm only the second person known to have both, although if I am I must really be getting close to being one in a million!! It will be interesting to see if anyone else replies. Best Wishes Sierra
  6. It's been a long, long time since I was last here - busy enjoying life and battling on despite the health problems. I seem to be making a habit of collecting rare conditions and that's what brings me back. I recently 'celebrated' my 7th scleroderma birthday (7 years since diagnosis of limited cutaneous systemic sclerosis) and I'm wondering how many of us 'sclerodermians' also have Primary Sclerosing Cholangitis (PSC). Who better to ask than the expert patients on the forums. After several years of poor liver function tests they reached a stage where action was needed and I was diagnosed in November 2015 with PSC. Since then I have done extensive research and educated myself as much as possible. My understanding is that the expectation for 'sclerodermians' with liver problems is usually Primary Biliary Cirrhosis (PBC), which is what the consultants thought was my problem, but there is now no doubt that my diagnosis is PSC. I have only managed to find one research paper covering limited cutaneous systemic sclerosis and PSC in the same patient and, apparently, that was the first case known (at least to the paper's authors) and that was in March 2015. I can't believe that I am only the second person known to have both diseases so thought I'd post this in the hope that there are more of us out there (not that I would wish it on anyone, of course). If so, I hope to be able to compare notes as neither my scleroderma Prof, nor my hepatobiliary consultant have ever come across both diseases in one patient and are unable to answer any of my questions. We are all on this magical mystery tour and learning together! So, if any of you have both limited cutaneous systemic sclerosis and primary sclerosing cholangitis, please let me know so that I can get an idea of numbers. I'm sure my consultants would be interested to know too. Thanks in advance.
  7. Hi Amanda Yippee, I've been promoted to Bronze! :emoticons-yes: I thought I'd read in one of your posts that you're a 'hottie' so wouldn't have thought cold legs would be a problem for you. In fact, I think you should go for a minidress next. I'm always cold and have been buying winter woolies today. I usually have scarves and gloves but I've even gone for hats this time. Well, a couple of very retro 60s style peaked caps anyway. Since being diagnosed and reading up, I thought I'd better take the Raynaud's seriously. Should be a good way of dealing with bad hair days too :VeryHappy: Take care x
  8. Hi Amanda I see you've gone for more of a cocktail dress than ballgown now. Looks good! Take care xx
  9. Hi Jefa Looking at the number of posts you've made to become platinum, methinks it won't be me who gets diamond studded platinum first. I don't have the energy to work, live and post!! Take care xx
  10. Hi Alex I can probably look forward to many more 'red spots' then! Do you do the whole camouflage make up thing or just use normal make up? Sorry, I don't seem to do anything but ask you questions so I'll fire one at someone else for a change ... Amanda Thorpe - you get around a bit! I haven't made many posts myself but have read a lot of posts and you are everywhere so I'll take the opportunity to ask you for some info about the forums. What are the member classifications ie Bronze Member etc and how do you get upgraded? There's my competitive spirit coming through - I want to be a diamond studded platinum member please :D Take care all xx
  11. Hi Amanda So sorry you were feeling so bad. Hope you're feeling better now. I'm lucky (!!??) because I'm on very little medication because I don't yet have a treatment plan so whenever I'm feeling exceptionally unwell it must be the scleroderma!!! ;) Take care x
  12. Hi Carole At least you shouldn't get stuck in rush hour traffic! Hope everything goes OK with the test. Take care x
  13. Hi Alex Hope you had a fab birthday - keep on proving the doctors wrong! I don't have anything like that number of telengectasia. Did yours happen all at once or did you add to your collection gradually? I just have a few on my hands, face, lips and neck so far. Take care x
  14. Hi Alex Sounds like you had a lovely time. I was diagnosed in May this year and have telengectasia so really wanted to look at your pic but got a message that I don't have permission to see it. Has anyone else been able to view it? Take care x
  15. Hi Trishtrub and everyone Thank you all for the welcome messages:) So sorry for not getting back to you sooner - have had a few traumas to deal with. My partner's father died and at the same time we were moving house - we put the house on the market thinking nothing would happen because of the credit crunch and got a buyer very quickly who wanted to complete VERY quickly - so quickly that we are now in temporary accommodation (which means I have to do it all again!) and I've only just been able to get back online. Lots of stress and overdoing things and the sclero demanded that I pay the price for it! I'm still at the stage of being amazed by how little it takes to wear me out and how much everyday stuff I can't do anymore. It's so frustrating. Anyway, I promised to ask at support group about the bloating, weight gain and pain after eating and get back to you. It seems that the bloating and weight gain (rather than weight loss) are common - as seems to be the case from other replies you had. Overall, I wasn't able to find out anything definite other than making sure that I get it checked out - one of the suggestions about the pain was that it could be an ulcer. Going to check out the links Jeannie gave now. Take care x
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