JohnLCanuck

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About JohnLCanuck

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    Surrey, B.C., Canada
  1. Hey Clem ~ I was started on Viagra in 2003 for my Raynaud's & finger ulcers. The first thing I noticed was that a lot of the constant pain seemed to be less. It definately helped with the healing process. I was on it for almost 9 months until I got lucky & was put on Bosentan. Couldn't take them both. Also, when on Viagra I had to get off Adalat (in Canada) & Altace, just felt too lethargic. Too much of a drop in blood pressure also. Give it a try, very little side effects. I used to spread it out thru the day . . . 1/2 pill 50mg in am & 50mg 2 at nite. And for the guys . . . you finally get a pill with pleasant side effects!
  2. Hi Pat's Kid ~ I've had 3 amputations because of bad circulation & gangerene. I have to admit that the pain from healing after the "bad" stuff was removed was much less than with that horrible black tissue that is just hanging there. It can't be fixed when it is that bad. And, when the dead tissue is removed the remaining seems to heal . . . at least it did for me. There is no quality of life sitting in that awful pain. Find a surgeon & a Wound Clinic. I wish the best for your mom . . . but sometimes you have to be assertive with the medical people. Good luck
  3. Sheryl ~ Thanks for letting us know about "Sadie". It is so sad to hear of one so young to be taken by this disease. It is really to bad that modern day medicines couldn't give her a longer life. I know she will be at peace now & I hope her family can live with this fact. Living in pain is very exhausting. My thoughts are with her family now, as I know she is finally free.
  4. Hi again ~ I guess I should have read all the replies before I jumped in. But I just so excited about talking about HBO, I sent a reply. Anyway, what I wanted to add was that everytime I was in the "tank" there was at least one person with a toe or foor ulcer that wasn't healing. The HBO works for them.
  5. Hey Tru: I've had two sessions in HBO. One for 40 days, 5 days a week for 3 hours a day, 2006 & another one in 2007 for 30 days. I think it really helped me heal. At the time 2006, I had 5 open ulcers, raw. . . not just the little black dots, & they cleared right up. Then in 2007 I had two calcinosis lumps dug out & was left with big holes. All these surgeries have healed & my finger guy is amazed. He told me to keep in touch with the HBO (@ our big hospital here) in case we have to do another op. The other thing I noticed is that my fingers, hands, are much more useful. I find everyday I'm doing something I haven't done for years. Give it try. It is a bit boring & tiring . . . but for me it worked.
  6. Thanks everyone for your alternatives. I'm never sure if the meds are called the same here in Canada, but some of your descriptions give me something to talk to my phamacist & Dr about. Thanks again . . . have a great week. I'm in the rain again!
  7. Need some help! I think I scatched the roof of my mouth with a chip, crisp for you UK people, a couple of weeks ago & it just won't heal. I've tried salt & water, epsom salts, another mouth rinse that is supposed to reduce the pain so I can eat & my Dr finally put me on antibiotics. None of the aforementioned treatments seem to be helping. I'm sure I've lost a couple of pounds 'cause it's so frustrating trying to eat. It's also hard to talk. Any ideas . . . home remedies please!
  8. Hi Barbara: This is great info. We, our BC Association, tried to get on to radio & TV a couple of years ago, but fell on deaf ears. Maybe it's time to try again. Thanks for your input & continued good luck in you new radio life.
  9. Hi Sam: So glad you got some lyrica. I hope it relieves the pain. When I saw your question recently about lyrica, I looked up my pain meds. I had both lyrica & gabapentin just over 2 years ago when I had open - raw skin, ulcers on 3 fingers & both thumbs. These pills both take a while to kick in, take effect, and you have to keep taking them to get the full results. I really hope they work for you & provide some relief.
  10. Hi Colleen ~ Sorry to read about your pain. I haven't had a alot of success with pills either. It is my experience that most pain pills try to trick the nerves, when in fact maybe there is more pain from just raw openings & even infections. I use an ointment or cream with an antibiotic in it & I try to find one with pain relief in the cream itself. I finally got a tube of topical lidocaine to add to anything I'm using at the time. I'm in Canada & the two best for me are an otc bacitracin/polymyxin ointment & an otc ointment with phenol/zinc oxide. I have a prescription pain reliever that works, but then sometimes I'm not able to drive, so I just take a day off & rest my painful fingers. Good luck in your search for relief . . . let me know how you do.
  11. Hi everyone ~ Seems I've been reading, on various internet sites, about different events for fund raising and other means of adverstising for Sclero. I'm in Canada & June is our "awareness month". We try for various levels of government proclamations, walks, billboard type ads and word of mouth thru friends, clubs, work & associations. So I just got curious about what everyone else around the world is doing. (I feel like I'm on a mission) Please share your happenings with me, and of course, anyone else that reads this topic. Hope you're all having a great day.
  12. Hey Sadie ~ I know the feeling of having need to find something that is a cure all. The best med I found was bosentan. It appears to have slowed down the progression of lung fibrosis, reduced my PAH and most importantly, took away most of the constant pain in my fingers. You didn't mention where or how Sclero affects you so I'm not sure if Bosentan may be your answer. However, it was my rheumatologist that started this process, so talk to him. I use my rheumatologist as my quarterback. I know it's frustating . . . but you've got to keep fighting for relief somewhere. Good luck, and keep smiling . . . it's good exercise for your mouth!
  13. Hi there: What type of O2 chamber r u going into? Is it monitored by doctors? I've tried it & I feel it helped me. The ulcers on my fingers healed up (5 fingers in total) & the thing I found more interesting was that my hands became more useable. I think it's worth a try anyway. As we all know, each of us heal differently & respond differently to various treatments. Give it a go & good luck. Let me know how it works for u.
  14. I've been on Tracleer for almost 4 years now & I never had any side effects. Better yet I call it my miracle drug. I can walk further & faster & the constant pain in my finger tips is almost non-existant. I also take "tylenol arthritis" so my liver test is important & is done every 3 months now. No problemo! However, we may all have Sclero but diff meds for everyone & tolerances all different as well. Good luck John L
  15. Monica: So sorry to read about your ulcer problem. I've had raynaud's for 27 years & dealing with the on going pain, gangerine, calcinousis, little dry spots on the finger tips & even amputations is very frustrating. Unfortunately most Dr's, even dermatologists, don't have a cure for ulcers. I've tried evertyting the doctors have offered, including hyperbaric, but I am now resolved to the fact that once your extremities get plugged up or the nerves turn off, you just have to stay warm & try not to get stressed. I am in Surrey, Canada, & quite ofen I find the humidity is harder to take than the winter cold in Calgary. Most days I have bandages on my fingers to cover the sores & to keep the sores moist. I use either Ozonol or Polysporin with pain relief (Lidocaine) as I find that leaving the sores open they don't heal any faster & if I bump or bang my fingers the pain is just unbearable. I've also had some infections that took antibiotics to clear up so these ointments help to keep the wounds clean. I wish I could offer you a quick & definate solution, but reading all the replies about reading more about what you already know prompted me to share my story. You just have to do what you are comfortable with & you may have to try many creams, ointments & even natural treatments to find your zone. The best treatment I found was Viagra & then Bosentan. These helped to reduce the pain & helped somewhat with the healing. But, as I've had this problem for so long, I think that after awhle I can't change plugged up arteries & nerves that don't open blood vessles. One thing you must do is keep hammering ALL your doctors to try something, anything to increase your circulation & take the pain away. Good luck in your search for a solution. John L. ;)