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Shona Arthur

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  1. Hi Amanda, Sorry it has taken so long to post back. I have spoken to my general practitioner, and he is writing to the consultant re immune suppressants. They have not spoken to me about this and they do seem to have different ideas about how to treat me. When I first met my consultant we discussed my raynauds and stiffness in hands and feet. I said coincidently that the only times I have not suffered from raynauds was when I was pregnant. She said that was because rheumatic disorders often lessen with the increased hormome levels in pregancy, and joked that I should have more kids to keep it at bay over the winter. I can't have any more children though as I had placenta previa with my last one and spent 6 weeks in hospital so they advised the risk of hemorrage is too great. Different people at my hospital do have different views about my condition. it depends on who I talked to. The surgeon who did the small op last year on my lower intestine, was very concered about the sclero, and they took extra care when putting the drips in, as the veins in my hands burst. The staff nurses are great and I always have a phlebotomist when taking blood as it is tricky. But my rheumatologist often makes me feel that I am complaining about nothing, and have a wait and see approach. I often feel that I shouldn't complain and just get on with it. They have told me that I will be worse as I age, so while I am younger I should try to keep the symptoms at bay. Hope that helps. Thanks for your concern. Love Shona
  2. Hi, Thanks for all the comments. I thought I should give you a bit of history about me to see what you think. I will talk to my general practitioner as I have to see him in two weeks to check my bloods and BP after taking these new tablets. I found out I had sclero by accident two years ago. We were training to climb Ben Nevis and the rest of our group noticed that everytime I started jogging my hands went into spasm with Raynauds. I have had Raynauds since my teens. Plus my hand grip wasn't too great. So I went to the general practitioner who took bloods, it came back as ANA positive for limited systemic sclero, and I was referred to a consultant. The consultant sees me every 3 months and I have yearly Heart and Lung scans. I also have gastro involvement, with some oesophical damage and had a small op last year on a tear in my lower intestine. Currently I am taking nifedipine 20mg, lostartan postasium 100mg and prozac 20mg for my circulation (I am prone to the skin splitting on my fingers and have a loss of sensitivity in my hands and feet), plus omerprazol 20mg for heartburn. I have tried a load of other meds but most of them do not help the Raynauds. Increasingly I have been suffering from joint pains in my fingers wrists and shoulders and from migraines and fatigue. I have also lost a lot of the fat from my hands (pity it was not my bottom) they are very wrinkly and spindly. I was quite upset when I wrote on Tuesday as I had explained all of this to my consultant but all she seemed interested in was how my Raynauds was and said there wasn't much she could do about the tiredness or joint pain. I am struggling a bit with all of this, I have 3 kids and try not to dwell on how I am feeling too much. Thanks for all your support, Love Shona
  3. Hi Amanda, Consultant thinks sclero is often hormone related and often becomes much worse after menopause. Initially they told me to have more kids to lesson symptoms. But 3 is enough. Therefore they want me to try as much as possible while I am in my 30s. I dont know, everyone tells me different things not. I dont see my general practitioner as he always refers to the consultant, so I tend to wait for my 3 monthly appointments to discuss any problems. Thanks, love Shona
  4. Hi Buttons and Amanda, Thanks for your replies. I am tested every year for heart and lungs, plus barium swallows. Was feeling quite neurotic last night about the consultant and felt she didn't really understand. I dont see a sclero specialist and they want me to wait until I am a bit older, I am 32. their concern at the moment is to make sure I try all the meds the rheumatologist suggests and see how I get on. Thanks, better go, kids are home from school and it is pandemonium here. Love Shona
  5. Hi, I went for my 3 monthly checkup today feeling terrible. Am suffering from migraines and loss of sensation my fingertips. Found that the pain in my hands, wrists and feet has been getting worse. Told the consultant, who seemed more concerned about how my Raynaud's was. Said that there was not much she could do about the numb fingers as my skin didn't seem too thick yet. She has given me prozac to take along with the nifedipine and lostartan potassium I am already on. I don't know how I feel about the prozac. Is anyone else on it and has it made any difference? It is supposed to help the circulation in my fingers but I am not sure. Any thoughts from anyone would be appreciated. Love Shona
  6. Thanks Amanda I am seeing my Financial Planner tomorrow again and I will pass this on. Shona
  7. Hi, I am 32 and was diagnosed with sclero two years ago. Currently I have hand and feet involvement, plus some gastro issues. I get yearly heart and lung scans plus barium meals - yummy!! Have been not too bad and am coping fine. My problem is that as we run our own farm, we have high levels of life and critical illness insurance. Our financial planner from our bank came to review our policies as they were put in place before I was diagnosed. Apparently as a sclero sufferer no insurance company wants to take me on for any new policies. Is there anything I can do or any advice anyone has. Can I claim on my existing policies? Is sclero a critical illness - I hope not as I plan to be around to be a granny when my children grow up. This has thrown me a little so any advice would be great. Thanks. Love, Shona
  8. Hi jefa I am Shona, 31 and also come from Scotland. husband, 3 kids aged 13, 7 & 4 (yes I was an early starter!), 3 dogs, pony and 30,000 chickens :rolleyes: We live on a free range chicken farm in the hills between Lockerbie and Langholm, so tend to spend my days in boilersuit and wellies. I was diagnosed properly earlier this year with scleroderma but have had raynauds since I was in my teens, this has got progressively worse as I have got older and the only respite from it was when I was pregnant. In fact my consultant said if I had a few more kids between now and my 40s that might stave things off for a while. hope they were joking three is enough to deal with. Currently I am on 2 different types of blood pressure treatment to keep my circulation going but the hospital wants to start me on bostanten however the nice people that deal with the funding have refused as it costs too much so they are taking me in in October and again in January for an Ilioprost infusion plus have told me to stop working outside - but that is easier said than done. Anyway having a nice half hour of peace and quiet while the kids are doing their homework and thought I would browse the forum pages. It is so great to read what everyone else is doing and how they are coping as it is such a strange illness that you never know how you are going to feel next. I feel so much more upbeat this time as the last time I posted I was quite fed up, as I was due to have an operation on my lower diegestive tract to reduce the pain and help things. It worked really well and currently I am feeling great. Everyone has noticed and said how much better I look and am in better form. So I must have been a right grumpy cow for months. Anyway better go and referee the kids. Shona
  9. Hi, My name is Shona and I was diagnosed with systemic scleroderma in January this year. I have had all the heart, lung and digestive system tests, which the heart and lungs are ok but there is some damage to digestive system. I am having big problems with the lower digestive system and am going into hospital on 29th July for a small operation to help relieve the pain and heal tears. Is any one else suffering this way. Also I have quite bad raynauds and am taking 2 types of bloodpressure tablets, felodipine and lorstartan potassium, is anyone else on these and do you have any side effects. I am 31 and have three young children, alot of the time I am exhausted and tend to go to bed when the children go. My poor husband is used to this now but we are both worried what it will be like as I get older. Any advice would be greatly appreciated. Shona
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