lizzie

Hi greypilgrim, in response to your question- although I have nucleolar pattern ANA the tests have not detected any specific antigen. However the standard testing in my hospital only tests for some but not all antigens.

Hi Joelf, I've been really well over the last couple of years-even the Raynauds seems to be much better! Still working full-time but currently on sick leave as sustained a trimalleolar ankle fracture slipping on wet grass when shutting the hens away.

I was initially diagnosed with limited Scleroderma (in the UK) as I only had thickened skin on my fingers and face (also had positive ANA - nucloelar pattern). About 18 months later my skin began to rapidly tighten on my arms and lower legs and my rheumatologist decided that I needed to start immunosupression ( I had Cellcept , then Methotrexate) which really worked well for me. The rheumatologist told me that I had something between limited and diffuse scleroderma! I've hardly any thick /tight skin now - mainly on my face which at my age is a bonus as keeps the wrinkles at bay!

Hi Diana, I live South of you in West Yorkshire and my (and yours) nearest specialist is Chapel Allerton hospital in Leeds. Perhaps you could ask your general practitioner to refer you there? It would be more convenient and much less expensive than travelling to London for you. Lizzie

Hi Amanda, I've had 6 gastroscopies (with biopsies) in the last 3 years and have never had to stop the PPI (Pantoprazole) which I take morning and evening. I did however have to stop the Pantoprazole for a week last year when I had manometry and 24 hour monitoring. I was pretty worried that It would be a week of unrelenting reflux , but in fact was OK - I have had worse reflux when taking the PPI! Having said that, my reflux waxes and wanes and it could just be that I hit a good week. Hope you cope OK. Lizzie

HI Inked up, as Joelf says, in my experience the results of lung function tests can vary a lot between each tests - my FVC have gone down and then up and then down from one year to the next. Like you my FVC was really good the first test I had (130%), then went down to 90 something % and then back up to 120%. Lizzie

Hi Marsha, When my skin started tightening more ( about a year after diagnosis) my rheumatologist (in the UK) was keen for me to start on immunsupression straight away. His preference was for cyclophosphamide but he also gave me the option of Mycophenylate (Cellcept- which is a tablet), which was what I decided on as it meant I did not have to spend a day a month at the hospital for an IVI. The Mycophenylate worked really well for me- my skin started softening within a couple of months. PS Like you my right hand and arm were more affected than the left, I thought this was unsual until I read your and Jad12 posts ! X Lizzie

I agree with you Amanda that it is unacceptable and infuriating when people without disabilities park in disabled bays - they should be fined.Having to pay £60 or so would make them think twice. However we do need to bear in mind that some people can appear able bodied whilst actually having disabilities- I am sure that a number of sclerodermians ( e.g. those with pulmonary hypertension) could fall into this category.

HI Inkedup, I too live in West Yorkshire, but in the are where I live, the rheumatologists are excellent even though they are not scleroderma specialists. I have been seen 3 monthly ever since I was diagnosed 5 years ago, even though I don't have any major problems. Any symptoms are followed up on with further tests and or medications as required. I feel you shoud be seen at least 6 monthly whilst the disease is active, and particularly when your lung function has declined. I would certainly ask my general practitioner about a referral to our local specilaist centre (Chapel Allerton at Leeds). Lizzie

Hi Sooty 30, Like Jo I pay for an annual prescription as unfortunately people with scleroderma do not qualify for free prescriptions. I do get a real bee in my bonnet about this. People who have hypothyroidism get not only free thyroxine but free every other medication as well. My husband has cancer and gets free prescriptions, although none of the medications he takes are for treating his cancer, and people with diabetes get free prescriptions. It's not that I begrudge people with these conditions having free prescriptions, I just feel that the list of conditions that qualify is very arbitary. For example my son has renal failure and takes 5 different medications for this- they are not optional, but life preserving, yet he does not qualify for free prescriptions. Rant over! Sorry to hear that your husband has diffuse scleroderma. Lizzie

Hi Sue, Having had Iloprost infusions every 3 months for the last 5 years, I consider myself something of an Iloprost pro - think it would be my expert subject on Mastermind! I,m a bit of wimp , so the fact that I have tolerated it that many times shows that it can't be too bad. For the first 4 years I had it for 24hours a day for 5 days. Thankfully our unit now has started giving it as a day case and I have the infusion from 8am-6pm each day for 5 days and get to go home each evening. The main side effects/problems I have had are : 1. Boredom- I always take loads of things to do ( books, laptop, Ipod, radio, magazines, DVD's) and end up doing nothing for most of the time!.Once the iloprost starts taking effect I develop a strange lethargy , so that I although I am bored can't be bothered with doing anything much. In my estimation the best activities are a) talking to other patients (have spent many a happy hour discusssing scleroderma symptoms) b) Discussing the merits or otherwise of the junior doctors with the nurses c) listening to the radio (I always take mine) as requires no effort and can block out other sounds if required (e.g the occasional overtalkative patient or the snorers) 2. Headache- ranging form dull vague hangover type feeling to full blown migraine. The faster the infusion rate the bigger the headache. 3. Hypotension- and like Lil - particularly at night. makes you feel a bit dizzy and nauseated 4. Weird pain in salivary glands when eating, which them goes off after a few mouthfuls. I had thought this was my own unique side effect , until I met a lady last time I was in who had exactly the same problem 5. Multiple bruises from multiple cannulation-I have the typical rubbish sclero veins, so often takes 4 or 5 attempts to get a cannula in and sometimest they only last a few hours before needing to be replaced. Other times however they last for 3 days. In my experience the nurses are far better at doing the cannulas than the junior doctors . Good luck with the treatment Lizzie

Hi again Kei Kei, re the Iloprost infusions- I don't have digital ulcers either - just the peksy Raynauds. Think the idea of the Iloprost is to stop any ulcers developing. I am also a pretty restless, ants in my pants, type ,but being hooked up is not too bad as you can still walk around. Me and my drip stand have covered several miles of hospital corridor. Lizzie

Hi Kei Kei, I am in fact just sat having my 3rd day of Iloprost infusion as I write- given 8.30 am-6pm for 5 days in the unit I attend. It is very very very tedious-but ultimately worthwhile. Lizzie

HI Louise, As a parent it is hard when adult children have a serious illness, as although we can give our opinion, they, quite rightly of course, can choose their own course of action. In some ways it is easier when they are minors because the decision about treatment is in our hands. I really do empathise. My son was diagnosed with rapidly progressing renal failure when he was much the same age as your daughter . He was on steroids and MMF. He hated the steroids because he developed acne, so discontinued although he did remain on the MMF ( although to be honest I'm unsure that he took the tablets as prescribed). He would not talk about his condition with us (even though he had been told it was more than likely that he would require dialysis within 6 months) and I know that he did not even tell any of his friends. I suggested that he might like to join a support group, but was adamant that he did not want to. Over time he has come to terms with his illness and actually takes his medication regularly, rings me up to tell me his blood results and what was said, after each clinic visit. I think your daughter just needs time to come to terms with things. I know it took me some time when I was diagnosed with SSc. As Jo says, the conflicting advice she has received from the consultants is less than helpful, and she really needs to discuss it further with her doctors. (PS. the MMF worked wonders for my son - although he still has chronic renal failure , he has not yet needed to start dialysis and in fact his renal function has improved) Lizzie

Hi Sue, I have heard of Dovonex being used to treat localised scleroderma e.g Morphea. I use Dovonex for psorasis and was told to be very careful not to apply it to the areas surrounding the psoriasis plaques as it causes soreness. Lizzie