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About marlene

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    Bronze Member

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  • Location
    Highlands, Scotland
  1. marlene

    New member

    Hi Sue, Ouch and ouch, I suffer badly from skin tightening over my body which is progressing at a fast rate. I do not take medicine for it but I do everyday clart and I mean clart myself in Epaderm cream which I got from the G.P which keeps the skin really well moistursed. It is very hard when the skin is so tight and it gets so frustrating not being able to move the same. I go to see the physiotherapist weekly to go to her class in a hydrotherapy pool and that really helps with the tightening skin to aid better movement. I don't know if there is anything like that in your area but it may be worth while asking. I hope the red areas clear up soon :) from Marlene
  2. marlene

    Question with various issues

    Hi Jean, I hope you feel better soon and I know this is hard. I have had numerous dental issues too. In January my dentist refused to treat me because of my condition and he referred me to the local Raigmore Hospital oral dept as they are more specialised to deal with patients with auto immune disorders. I was a bit put out at first but on having been there this year they are fantastic and there is no set time for the length of the appointment. They take as long as you need. Because the treatment is in the hospital you don't pay for it which is an added bonus. My systemic sclerosis is unfortunately attacking my gums too and I am in the long process of having a lot of work done. It may be worth asking your dentist if it is an option for you? The pain of tingling Jean is what I get with the Raynauds and the most effective thing is sitting with a cosy hot water bottle in a cover and keeping the hands on it so the hands don't get a chance to get to the white or blue stage. I find this is the most effective. I used to wake up every night as it was really bad at night but I use the hot water bottle for my hands. I am unable to take medicines and I have to utilise whatever methods I can to relieve the pain. It is worth a try. From Marlene :)
  3. Hi Guys, I am starting to suffer quite badly with both of the above. I have the calcinosis on both knees which is painful and is restricting my movement a lot, and it's on both elbows, pelvis, nose, wrists, knuckles and bottom of my spine. The knees and elbows are close to growing through the skin. I am taking really bad with the sclerodactyly as this is progressing at an alarming rate. The physio and the rheumatologist seem shocked at how tight the skin has gone is such a short time. I can no longer grip anything in my right hand. Any advice? From Marlene
  4. marlene

    Referral to the Royal Free Hospital

    I had a fantastic holiday and fabulous weather in Majorca. It was the first trip out in the wheelchair too. The staff at Manchester airport were great and I felt relaxed. They upgraded us to extra leg room seats and at Palma airport they were just as organised and I must say I was so impressed. The doctor exams were really good and it opens my eyes really at how few doctors recognise the disease, but I will continue as long as I am able to do so to participate in them. The more doctors that become aware of the disease can only be a good thing in my book. I got home from holiday to find a letter waiting for me for my referral to the Royal Free hospital in London on 22nd Dec and hope there is no snow then. It will be a 565 mile journey there and another 565 miles back. I am hoping to fly weather permitting. I look back on the year I have had living with systemic sclerosis with intertitial lung disease and what a year it has been...I look back at what I could do then and what I am physically able to do now and am totally amazed at how fast this disease is attacking my body and leaving its mark. It started with a cough and fatigue...the doctors were so amazed at my lungs being so damaged with so little other symptoms. But when the other symptoms started to come, they have progressed at a very rapid, scary rate. When I had the severe reaction to the drugs they gave me and now can't prescribe anything else, I now hear so often...there is nothing we can do for you...the disease progress at its own rate...what are we going to do with you...I can't explain why that is happening, I haven't seen that before... I feel like a very HOT potato that every doctor is scared to handle and keeps passing me to the next one. Maybe at the Royal Free hospital I may get some answere to the lots of questions I ask ? From Marlene................................... Roll on December 22nd :) :) Hope I manage to get some time for holiday shopping :)
  5. marlene

    Referral to the Royal Free Hospital

    Thank you for the info Jo. I was started on cyclophosphamide and prednisolone in Feb 2011 and about 3 weeks later I was in hospital with severe fevers 4 times daily. I had difficulty swallowing etc. I pretty well got every test I think was available and saw more consultants than I care to remember. No one could come up with anything. Then exactly 28 days from when the fevers started, I had all my skin start to shed in huge amounts. This was agony and lasted 21 days. This they put down to a severe drug reaction which is extremely rare but I also suffer from angioedema which is an allergic reaction to the unknown. I will never be given either of these drugs again as I was lucky to survive the drug reaction and I can now laugh about it but at the time I recall asking for my coffin as I was ready to jump in. The other drug rituximab which has been mentioned and I have declined as the possible side effects with a severe reaction is death and it is highly probable that I would get a reaction and I am not ready to take a chance on it as I have children. The crest symptoms are coming in thick and fast now and the lungs are on a downward slope and I no longer see the chest consultant as there is nothing he can do at the moment. The rheumatologist is at a dead end really.... hence my referral. The skin around my eyes are knitting together and the eye specialist has never seen anything like it; he suggests it may be due to the drug reaction as he is not aware of anything being recorded in the disease to suggest that it is down to that. I must say both consultants have been great and I appreciate that. I got referred to a physiotherapist and I attend her puffin hydrotherapy pool exercise class which is amazing. I can't believe the movement I can do in water that I can't on dry land. Good news though is that I am being allowed a week in Majorca and go on the 8th Oct ( only after 2 day stay in hospital for dental treatment and 2 days helping out with the doctors exams) so I am really looking forward to that. I was amazed at how cheap it was for the travel Insurance covering my condition £25 for the week. Thanks to the the info I read here; I would never have thought of them to try. I am looking forward to going to the Royal Free hospital and I hope it is not too long a wait. Marlene
  6. marlene

    Calcinosis and ulcers

    Hi Suze, I have had digital ulcers really bad for over a year now and the only thing that takes it completely away is the doctor giving me erythromycin antibiotic 250mg 4 times a day for a week. My ulcers had got so bad that I had my hands covered with dura dermatologist plaste r( 2nd skin) at hospital in the skin clinic and the dermatologist was so shocked at how effective the week of erythromycin had impacted on them. The infusion I had earlier in the year for digital ulcers/Raynaud's did not make a difference to me. Marlene
  7. Hi, I had a visit to my rheumatologist the other week with regards to my systemic sclerosis with interstitial lung disease which was diagnosed in Jan 2011. I am a real problem case for them and even though I live in the Highlands in Scotland, he wants to refer me to be seen at the Royal Free hospital in London. I don't know how long that will take to organise? Probably quite a few months but does anyone go there at present and what can I expect? Marlene
  8. marlene


    Hi Christine, I have also had problems with my teeth recently and due to the mouth being so much smaller it makes getting treatment a real pain. :) I was lucky in that my dentist referred me to the hospital for all future treatment, and it is so much better. They are more aware of all the issues and they are so patient. I called them and told them I had some pain and they told me to come in this morning and I had the tooth taken out. They were so good and they told me due to the skin tightening I have that they would take it out at a different angle. I did not feel a thing. Marlene
  9. marlene

    Eyes sealing together?

    Thank you Amanda for your reply. I am quite distressed about my eyes really. It is so noticable now, its about 4mm sealed. Thank you for the list of specialists and I asked to be referred to Jill Belch in Dundee as that is the closest to where I stay. Its about 160 miles away. The G.P filled in the form and I understand the delay is with the consultant not signing it as they will only refer when they feel that it can't be handled in this region? I have been asked where I got the list and who advised me to ask to see a sclero expert. I told them I have joined this website which I found by accident and the info and support has been fantastic. I am due to go into hospital on Monday as a day case to have an illoprost infusion and I will push for the referral then and ask to see and eye exper.
  10. marlene

    Eyes sealing together?

    I have had a problem with dry eye and swellings. It is really uncomfortable and when I looked closer, my top and bottom of my eyes are now sealing. I went to my G.P who confirmed they are sealing up. I am still waiting to see if they will refer me to the specialist as it is out of the area that I live in the Highlands of Scotland and there is a great reluctance and dragging of heels. Has anyone had this problem as I can't find anything documented about it?
  11. marlene

    lloprost infusion.

    I am going to have the llprost infusion on the 27th June; has anyone had it and what side effects does it come with? I am due to have the infusion as a day case for 6 hours daily over 5 days. I am dreading it as I suffer from low blood pressure but the rheumatologist says they can regulate it if my blood pressure goes too low..... Does it make a difference to the Raynaud's?
  12. I had a cough and hand sores for about 15 months, I mentioned it quite a few times to my doctor who kept reassuring me it was viral. I had chest x rays and blood tests etc and was told they were okay. I didn't understand it as I felt like I was slowly dying inside and no one could see it. I changed doctor practices and the new doctor saw it right away. I was referred to the chest specialist and after listening to my chest he confirmed that it was highly probable that I had an autoimmune disorder. I had lung function tests, blood tests and a ct scan which confirmed I have systemic sclerosis with interstitial lung disease. My lungs are 50% damaged and the doctor was very surprised. I started a steroid and cyclophosphamide and aquatovone treatment to suppress my immune system but after 3 weeks on it, I started having fevers of 105 and these were about 4 a day for exactly 4 weeks and then 4 weeks of my skin shedding off. It appears that I have had a severe drug reaction but they don't know which one. I have opted not to try the drugs again. I struggle with the lack of knowledge there seems to be about the disease. I am going to be part of the doctors exam next week to try to highlight it more. I have so many answers and the chest consultant and rheumatologist are excellent but I can see that they can't answer a lot of my questions. I got diagnosed at the end of January 2011. I am due to have an illoprost infusion next month to help the Raynaud's. Any advice on the condition would be gratefully received.