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Everything posted by lizzie

  1. 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.
  2. 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.
  3. 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!
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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.
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. lizzie

    New member

    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
  16. Just to say that I have nucleolar pattern antibodies and have a definite diagnosis of scleroderma. Plenty of people with Scleroderma have antinuclear antibodies that are not Scl 70 or Centromere, so really can't understand why the rheumatologist won't see you. Nucleolar antibodies are associated wih scleroderma. Lizzie
  17. On the subject of steering wheels in winter: I don't have a heated steering wheel (don't get them on a basic low budget car !) but have a cheap cover in a Neoprene type fabric that was perfectly adequate to protect my hands, even in last years freezing winter. Lizzie
  18. What works best for me are a pair of thin silver gloves worn under a pair of thinnish fleece or wool gloves. Thick gloves constrict my hands too much and thus seem to make them colder. I always make sure that my hands are warmish before putting gloves on. If my hands are really cold I actually find it better to be without gloves than with as the gloves just serve to keep the cold in! I also recommend disposable handwarmers (they look a bit like teabags) if you are going to be outside for any length of time - they generate heat for several hours. Lizzie
  19. I had an endoscopy 3 weeks ago. I didn't have to stop the proton pump inhibitors. However, when I had a manometry test a few months ago (they were considering me for a Fundoplication op), I had to stop taking the the proton pump inhibitor for a week before. Lizzie
  20. Hi Christine, 35 degrees is borderline normal temperature. Having said that 35-35.5 is a pretty normal temperature for me even in summer. On a recent week of daily admissions as a daycase for Iloprost , my temperture was taken every couple of hours throughout the day and varied between 35 most mornings to 36 later in the day. I think some of us just have a low core temperature . I am pretty healthy (despite the scleroderma). I think it is probably worth asking whether you should take the calcium channel blockers (Nifedipine) all year though. Lizzie
  21. Hi Amanda. The staff in the unit I attend do encourage you to try the infusion at a higher level, but respect your decision if you say you do not want to, and if you do try it at a higher rate and can't tolerate it, they will turn it down as soon as you request it. I have been up to 3mls an hour but felt like I was going to die, and have never tried it at that rate since. I think their philosophy is that it is better to have some than none. They are also flexible in that they don't stick rigidly to the 6 hours, but let you have the infusion over the whole 10 hours that the day case unit is open. As a consequence the people I have seen having Iloprost when I am in really don't seem to need medication for side effects, other than the occasional paracetemol for the almost unavoidable headache. Glad I go to my unit and not yours! Lizzie
  22. Hi Marlene, I have been having Iloprost every three months for the last four years. In the unit I go to, you used to have to stay as an inpatient, so I chose to have the infusion continuously for 5 days at a low rate of infusion. Since the beginning of the year, the unit has moved to giving Iloprost as a day case. I now go in at 8am each day and finish at around 6pm. I go home with the cannula in place. When you first have Iloprost, they will start at a very low rate for the first hour or so, and keep checking your blood pressure. The iloprost is then gradually increased up to a rate where you can still comfortably tolerate it. They will keep checking your blood pressure and if it drops too low will reduce the rate of the infusion. People's tolerance of the drug varies. The maximum rate allowed for someone my weight is 4 mls an hour, but I can only comfortably tolerate 2mls an hour. Other patients I know can tolerate less, others more. Side effects can include headache, nausea, jaw pain and can be unpleasant, but if you start experiencing side effects, they can reduce the infusion rate and you start to feel better within a very short time. In the unit I go to they do not make you have the infusion rate any higher than is comfortable for you and I imagine it will be the same in the unit you attend. It also tends to make me a bit lethargic. If you are taking something to read , make sure it is easy reading. I find listening to the radio a good way to pass the time as requires no effort and I can shut my eyes! The other thing that often happens is that the cannula gets a bit sore as Iloprost inflames the vein and then the cannula has to be resited. I tend to get through about 2-4 cannulas in 5 days, which is a nuisance as usually takes several attempts to find a vein each time. Once the drip is discontinued, I feel back to normal very quickly - I drive myself home after the treatment. I am no stoic, so no way would I have had Iloprost for 4 years if it was not tolerable. Hope all goes well and let us know how you get on. Lizzie
  23. Hi Lisa, I managed to contact Jeanne Melvin a couple of years ago re this book. I can't now recall her exact reply (although I may still have the email somewhere on my system) but basically I think it is out of print. Having said that, I think there must be old copies out there; it's just how to find them that's the problem :( Lizzie
  24. Hi Jean, just to take up on a point Joelf made re some medications making reflux worse. I have Gerd and found it became much more of a problem when I started taking Nicardipine for Raynauds- I was waking up at night choking and coughing. I was then switched to another med for the Raynauds and have far less trouble- the Gerd is pretty well controlled by Pantoprazole.
  25. I'm in for the dreaded Iloprost again next week. Not pleasant, but does make a big difference - and I'm convinced that my brain functions better afterwards! The Raynauds is in overdrive at the moment due to the sudden change in the weather to cold and windy - just haven't been able to get warm for the last couple of days despite cranking up the central heating and sleeping in a fleece. Have worn a coat and fingerless mitts all day at work today much to the incredulity of my colleagues! Lizzie
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