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    Baildon West Yorkshire
  1. Peter


    Hi, Update on my side effects since changing days and increasing the folic acid combined with injecting after I have eaten the majority of side effects have dissipated. I am unsure if this is due to the changes or a placebo effect. Any case it seems to have worked. On another note has anyone experienced an increase flare ups during this weather? Best regards, Peter
  2. Hi Bev, Back in the summer St Luke's hospital conducted a seminar for fellow suffers. They are in the process of setting up a contact group for similar people. I am a fellow sufferer and would also be interested a local group. You could leave me your contact details through this site. Best regards, Peter
  3. Hi, It has been awhile since I have been on the forum and have the following question. I have now been on methotrexate for 10 months first on tablets and then on injection for the last 18 weeks. I am getting increased side effects. These consist of nausea, headaches, dizziness, and feeling low and a fuzziness throughout my body. I spoke to the rheumatology nurse and she suggested increasing my folic acid to 3 days and taking travel sickness tablets to counteract the nausea. My question is does anybody else suffer from these symptoms after being on medication for so long? Recently I have increased my activity, I am now working three days, have got back on my bike once or twice a week doing approx 6 miles each time. Also I have been sailing a couple of times. Is there any chance that all this activity could be causing some of of what I am going through. I look forward to any replies. Peter
  4. Peter

    Hi, i'm new

    Hi Caz, Welcome I was diagnosed with systemic scleroderma last November (which affects my joints and skin), after I was admitted to hospital to investigate arthritis symptoms. I had never heard of this condition and when I got home I went on the internet and scared myself witless until I found this site, you will gets lots of support and information. I have now returned to work after being off seven months albeit it being on a phase return but I am finding it hard work mainly with the fatigue. Regarding work colleges I have found them to be very supportive, all of them had never heard of Scleroderma, so I print of a brief description of how it affects me nothing too dramatic, looking for support not sympathy and they have been brilliant. Also I now started to exercise which has helped to improve myself esteem. What I have also found to be beneficial is meditation. Hope this will be of some benefit to you and good luck for the future. Regards Peter :VeryHappy:
  5. Hi Amanda, Thanks for your reply and your reassurance. Everything has changed I am now back at work phase return for 6 weeks in my old position with adjustments, ie reduced contact with customers and try and alleviate stressful situations. I am still not sure if I would be able to maintain a full working week,this will tell over the coming weeks. I have now commenced weekly injections, not as bad as I feared. Will now see if it makes any difference to my condition, I have now started to come to terms and try and live life to my full potential. I am actually back on my bike and have increased the distance I am walking. Once again I have found this forum very supportive and will continue to use it. All the best Peter
  6. Hi everyone, I have systemic scleroderma which is affecting my hands and feet and also suffer from fatigue. I have been off work 6 months and I am having to go down redeployment route (I am a team leader in a contact center for a housing association), as recommended by the occupational health doctor. So far I have only been offered one position which is front line staff on reception and is not suitable as I never know when the pain will get unbearable. They have now sent me back to their doctor to assess for early retirement on ill health; I have only been with the company 5 years. If Scleroderma is covered under DDA would that mean that they would have to find me a position or can they just go down the route of terminating my employment? On another note has anyone noticed the difference when going from tablet to injection for methotrexate? Thanks for a great site Peter
  7. Hi everyone, It is now 5 months since my initial diagnosis. I saw my consultant on Tuesday and finally got a confirmed diagnosis. I have got systemic scleroderma affecting my joints with arthritis and of course Raynauds the hat trick. The specialist is pleased with my progress and he stated that he stopped me going over the cliff. The next thing is I am going onto injecting myself with Methatrexate, not so sure about that but he said it would be better to control the disease and would alleviate the problems I have with my stomach. I do feel at last that things are improving and I am working towards returning to work albeit in an other position as I can't return to my original position due to the nature of the job. I am now getting good support from work which is one worry less. This week I even went out on my bike and I am doing plenty of walking my dog is loving this, she will be sulking when I go back to work. The change in weather has certainly made a difference. I would like to thank everyone for their support and wish you all well. Peter
  8. Thank you for all your replies,it is heart warming to find it is not the be all and end all. I will continue to monitor this forum as there is a lot to gleamed about other people in the same boat. Judy T thank you for your reply in reference to keeping warm. I already use clothing made of Merino wool.I use a company on the Internet that only deals with companies that produce in New Zealand it is really good and they have started using it in conjunction with Possum fur, which I understand is a pest in your country. I have decide to try and go back to work in the next 2 weeks and see how I get on. One problem is it is a very stressful and intense work, having to deal with customers in a contact centre for a housing association One problem I find typing quite painful which is the major part of the job, hopefully they will involve occupational health to find alternative position. On an other note I applied for life insurance as I realised that I need to make provisions for my son. The company decline the application due to this condition. Does anyone know of a company that will allow cover? Once again thank you for all your replies and good luck to everyone. Peter :emoticon-insomnia:
  9. Hi I was diagnosed with Limited Scleroderma in December 2009. I was admitted to St Luke's hospital for test to ascertain which type of Arthritis I had. After numerous tests they came to the conclusion that I had Raynuads and scleroderma, apparently I am the wrong gender. They have put me on methotrexate, nifedipine, losartan, and naproxsen. I suffer from a lot pain in my hands and feet, some of my joints ache and get short of breath. Could anyone tell me if the pain will dissipate once they have stabilized my medication? Prior to this I was very active with skiing,sailing, mountain biking and fell walking. What are the chances of me being able to carry out these activities? Look forward to other peoples idea and experiences. Regards Peter
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