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  1. Hi Dimarzio As I see it the way forward for yourself would be to see a 'Scleroderma Expert'. Your general practitioner will refer you (my general practitioner got me a referral with the Royal Free within 2 weeks of me asking) and you will then have the peace of mind knowing what exactly you are dealing with! They will also discuss with you any medications that could benefit you, carry out all relevant tests and provide you with a firm plan with a Speciality Nurse to help you through this condition. Take care.
  2. Hi Dimarzio I too have Limited Systemic Sclerosis and was fully diagnosed in September 2015 after a rapid decline in my health very similar to yours! I also have insomnia which causes extreme fatigue during the day. I find having a nap when you need it helps! Winter is a very difficult time for me and even when its hot outside, walking into the air-conditioned shops also causes me problems. It is very important to wear lots of layers in the winter. The key is keeping the core of the body warm (thermals and always wearing a gilet). Just wearing gloves will not help! Its the sudden drop in temperature that causes the problems. Medication for Raynauds can sometimes give you a drop in blood pressure causing faintness! I am on a slow release medication because the original medication I had caused my blood pressure to drop, caused severe headaches and faintness! Unfortunately its a matter of tweaking medications to suit your individual needs and this takes time. As Shelley said it is important to get referred to a specialist. My general practitioner referred me to the Royal Free in London. They have all the facilities and expertise needed to treat this condition. It does help! Take care
  3. Hello all! Happy new year to you all! I have been asked to consider taking a drug called Mycophenolate. Has anyone on these forums been taking this drug and if so what are their experiences of it! Many thanks.
  4. Hi Ray I am too a patient at the Royal Free after recently being diagnosed with scleroderma! The hospital is amazing and very knowledgeable. I also use the train and underground (I travel from Lincolnshire) and it is the easiest way and relatively stress free! As Joelf quite rightly says the nearest underground is Belsize Park and then a 10 minute walk to the RF! I hope all goes well for you! Best regards.
  5. Hi everyone! I hope you are all doing good! I have now had my appointment with The Royal Free. It was a really good appointment which was thorough and lasted 3 hours (whereas at my local hospital it would have been 15 minutes). They have confirmed that I have Limited Scleroderma and treated and counselled me for the condition! I had numerous tests and also signed up for their Research Programme. Its now a monitoring exercise and I will be treated for any symptom that may arise by my local general practitioner - unless symptoms get unusually severe - and I will go back to The Royal Free! I will keep you informed of my condition! Take care
  6. Thinking of you all!
  7. Hello Amanda. I didn't realise 'brain fog' was a real symptom! Should I mention this to the Royal Free when I have my appointment? Regards
  8. Hello! Thank you all for your comments and guidance! I immediately reduced the Nifedipine to 1 x 5mg per day from 3 x 5mg the following day after suffering from severe headaches. This seems to help both with the headaches and a very slight improvement with the Raynauds in my hands but not completely! Last week I reduced my Gabapentin from 3 x 100mg per day to 1 x 100mg per day and can honestly say I have not experienced any differences in my symptoms at all! Which makes me wonder if this drug isn't helping at all with my pain relief! I will continue with this small dose at the moment! I will continue on my dose of hydroxychloroquine (2 x 200mg per day) at the moment! I feel a little better that I have reduced a small amount of drugs that I'm taking but can see that it will be a long drawn-out process in getting the dosages to my liking! Thank you for your help! Regards
  9. Me four!!!!!
  10. Hello Good news! My general practitioner has been very helpful. After telling her I wasn't too happy with the treatment I was receiving for my Scleroderma at the local hospital she referred me to The Royal Free! An appointment has been made for me in mid September! WOW! I wasn't expecting something so quick! Very impressed! I will keep you informed! Regards
  11. Hello All Are there any proven results for the above drugs? I have been taking these for one year now! My general practitioner recently asked me if I thought these where doing me any good and I could honestly say 'I Don't Know'! I certainly haven't felt any better and all that has happened is I have produced more symptoms! I was also prescribed with Nifedipine (for Raynauds) yesterday, however, after only taking two pills I developed strong head pains, queasiness and drowsiness. Are all these drugs worth taking when the side effects seem to be ten times as bad? To be quite honest I am absolutely fed up with taking medication as before my condition was diagnosed I ever hardly took any medication at all! This is all so new to me Can anyone share any experiences please? Regards.
  12. Thanks all! Will let you know what happens! Regards
  13. Oh my goodness! I thought my forgetfulness, constant list making, unable to concentrate on TV programs, not being able to understand peoples conversations and simple questions, forgetting how to spell words, unable to think of the correct word to use.......need I go on.........was part of getting old, but now after reading this thread it could all be part of our condition! Another thing to mention to the general practitioner! I best book a whole afternoon with her! Hahahahaha! Will let you all know what response I get from her when I return!
  14. Hi everyone! Not quite the same subject, but an intimate one nevertheless! I went through the menopause and finally had my last period approx 5 years ago..............until...........last week Is this another side effect of scleroderma? I contacted my general practitioner and have an appointment next week to have an assessment! Any advice please!!!!
  15. Hi everyone! Thank you all so much for responding, I now know that there is always someone 'out there' that understands what I am going through and I can always get an answer to any concerns and questions that I may have! I have a consultation with my general practitioner and rheumatoid consultant in a couple of months time so I will ask them if I can get a referral to the Royal Free. In the meantime I will ask your advice on any concerns I many have. Many thanks and take care!