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Everything posted by dimarzio

  1. Sorry to hear that Sclero org is retiring Jo. Is there another forum that we can all gravitate too as I will certainly miss some of the activity here even though it seems to have dropped off a bit lately. Would you mind letting us know what the thinking is behind this decision? Is it simply the lack of support and activity?
  2. I've read about similar reports before and I have certainly had gluelike symptoms on my hands when my Raynauds is bad. My best guess from what I've read and understand is that this might relate to a skin reaction resulting from the changes in the dermis layer below the skin. However, I am not a qualified medical professional, so my view is simply based on information I have gleaned since I started to research the subject.
  3. Flu vaccine in October, Pneumonia vaccine iin October, Covid vaccine a week ago and a Tetanus jab yesterday. Clinician says I need to have 2 follow up Tetanus jabs as well. Now I know how a pin cushion feels :) Tetanus as a result of my severing an artery in my arm gardening yesterday - very messy business :)
  4. Does anyone know what availability of stem cell transplant is like in the UK whether via the NHS or or privately?
  5. I can report that I had my first Oxford AZ jab 3 days ago and have had no reaction so far other than a slightly sore arm (as you might get from any injection). I will of course need to wait for 3 weeks for full protection but feel much more confident now with the recent data published confirming an 80% reduction in serious cases amongst those who have had both Pfizer and AZ jabs.
  6. I feel that the risks and side effects of the vaccine pale into insignificant compared to the risks of getting COVID, so I shall be having it as soon as it is offered. I'm on a FB Sclero group where this has been discussed by a number of us and most appear to be of the same opinion (only one or two said they wouldn't have it). All the medical advice I have read says that we should have the jab, though there may be one or two exceptions, I guess.
  7. I started off very frightened and very negative as a result. Pregabalin helped with my skin sensitivity so much that I was able to go out in the cold and wind again. Being able to get out enabled me to exercise more and more which in turn helped with my tightness, stiffness and made a lot of aches and pains recede (not 100% but enough to make a difference). Lockdown has been helpful in that my wife has been so bored that I have been able to persuade her to come out for longer and longer walks and she has felt the benefits so much that she has got the walking/hiking bug too.
  8. Raynauds often seems to be associated with temperature changes rather than just cold temperatures. I've had it in the summer when a cloud passes in front of the sun for a few minutes and of course walking into an air conditioned shop or cafe when it's 25 or 30 degrees outdoors.
  9. My understanding was that the NIH finally concluded that the case mentioned was unrelated to the vaccine and the trials have resumed. Hopefully, it will not be too long before we get a vaccine, though studies seriously question how long a vaccine wil providel immunity for. In the mean time, everybody stay safe, avoid close contact as much as possible, follow the two metre rule and maintain appropriate personal hygiene.
  10. Hi Aimee. Whilst I do not know too much about Morphea, I would urge you to continue to exercise as much as possible. If one side differs, there are many exercises that will only impact of one side giving you the balance you want Please also consider that symptoms are often caused by the side effects of any medication rather than the underlying disease itself. You might also like to familiarise yourself with the sections of this website relating to morphea. Regards, Dimarzio.
  11. That's odd. Not necessarily the outcome you would have expected. Though the protection Nicotine seems to provide against COVID infection is equally strange.
  12. Thanks Kevin, I'm glad that the progression has slowed down for you. I've also found that increasing physical activity has helped with the painful stiffness, but any longer than 24/48 hours without exercise is enough to bring it all back, so I have to do a long walk, cycle or some gardening every day. I hope that you will be able to find an effective treatment for the Telangiectasia and remain otherwise healthy.
  13. Hi Kevin. As you have been diagnosed for such a long time, I would be interested to know how Sclero/CREST have progressed for you. I was diagnosed in 2015, but like most, have had symptoms for many years, if not for life.
  14. This is a 'Must Read' for any Ssc sufferer, though maybe a bit out of date with regard to Cloriquine bearing in mind what we now know about cardiovascular risks. Dexamethasone maybe a more beneficial treatment for any Ssc patients suffering from respiratory distress after contracting covid-19 though undoubtably as the pandemic progresses, alternative treatments may become apparent.
  15. These are serious observations Jo, especially for those of us with circulatory issues. If I end up in hospital with coronavirus, I think I will be asking for anticoagulants whilst I am still in a fit state to do so.
  16. Rub them with bacon fat and bury it in the garden, my Granny used to say. Strangely, it sermed to work
  17. Hi Ronald, Sorry that you are still having so much pain and problems. I guess that you may get to the point that you feel that the finger is worth less than the pain. I hope you don't, but people live quite happily with a lot less than 10 fingers. Medical grade Manuka Honey might be worth a try if nothing else is working. Good luck, whichever way things go.
  18. In the UK, the health service are about to issue 1.5m letters to those they consider at risk. I wonder how many of us will receive one? Not expecting one as my general practitioner and rheumatologist seem to think SSc is just a minor inconvenience.
  19. These feelings of cobwebs and something crawling on your skin can be a symptom of Fibromyalgia, I believe. I get these feelings sometimes, especially as I am about to fall asleep. To me it does actually feel like a fly has landed on my face, though sometimes it might really be a small insect.
  20. Good Morning Jo, It could be that being on immuno-suppression may help. Some of the most serious symptoms of COVID-19 result from an immune system that is on the rampage rather than a lethargic one. Chinese scientists found an extreme immune system response called Cytokine Storm, a flood of immune cells and biochemicals they produce tears through lung tissue. Let's all hope that this outbreak can be controlled and that our Governments are strong enough to take the necessary containment actions swiftly.
  21. How much higher is our risk from this pandemic? In the UK there have been 4 deaths reported and all seem to be in their 60s, 70s and 80s. It seems that those with underlying health conditions or compromised immune systems are at significantly greater risk than the 3.4% average so far. The virus attacks the lungs, so anyone with a lung condition needs to be extra careful as should anyone taking immunosuppressants. Is there a case for stopping or reducing these, perhaps? Keep safe everyone and look after yourselves.
  22. Hi Carol. I've struggled with Raynauds for a few years and found knitted gloves of little help. You can get rechargeable battery oorated heated gloves which are very good, though I use thermal lined leather gloves which I got from a supermarket. For me, the key is to not let my hands get cold before putting the gloves on in winter. As soon as I go outdoors, the gloves go on or my hands go into my pockets. Another thing I've found is that it is important to keep your whole body warm. I found that if I can keep my head and neck warm by wearing a thermal hat and snood,
  23. Thanks Quiltfairy. That all makes sense. I will endeavour to use more handcream.
  24. En coup de sabre is springing to mind when you all talk about dents in your foreheads. It may be worth at least giving some consideration to this. I would say that it seems unlikely that such dents are stress related and prescribing diazipam for them is flabbergasting.
  25. C channel blocker to keep my bp down and PPI for GERD. Best thing for me has been Pregabalin though as it really helps with the skin sensitivity and nerve pain.
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