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Posts (29)

Sep 5, 2016 · ACHILLES TENDON in Bones, Joints & Muscles


Are you asking about treatment of a neglected injury or are you wondering whether its wise to skip surgical repair of an Achilles tendon injury?

Welcome aboard,

May 18, 2016 · Treatment options for Livedoid Vasculopathy (LV) in Skin Health

Hi @prairiesmoke, @marlene64, @patientrea, @mlemieux, et al:

I just wanted to jump in on a couple of points: First, I wholeheartedly agree with Marlene about keeping up a positive attitude. I’ve said it before – in sports as in medicine, having a positive attitude is frequently the difference between winning and losing. Martin – I’m so sorry you are developing new ulcers, but you are wearing so many hats now and serving as Canada’s Ambassador for Thrombosis. You more than anyone I know have shown an amazing resilience in dealing with what is for you a very very long term disease. You are the poster child for LV. In that light, please don’t ever let yourself get down about this disease – too many people including me are looking up to you for inspiration. Hope you forgive me for that little rant, my friend. I know you are hurting like so many others in this group.

I wanted to respond to something @prairiesmoke brought up some time ago and then again recently – the notion that LV may have some genetic implications and/or may have some basis in being triggered by trauma. I also remember a relative – paternal grandfather – who had a severe case of what I now believe was LV. The symptoms I recall from many years ago were very similar to what I have experienced in the past few years. I know this is only anecdotal evidence, but I agree that it would be worth some research. The other aspect – whether LV can be triggered by trauma is a very intriguing question. I did see a scientific study a couple of years ago that suggested such a relationship, although I haven’t been able to locate it again. However, my dermatologist recently brought this notion up in one of our discussions, relating it to my particular history. I suffered a permanent nerve injury to my left femoral nerve resulting from a botched femoral nerve block for a knee replacement. Shortly after this, I began experiencing serious LV outbreaks where they had only been relatively minor previous to that and only appeared seasonally. Again, only anecdotal evidence, but I wish I could find that someone has done or is doing serious research along these lines. Anyone have any thoughts on this?


May 11, 2016 · Mycophenolate for autoimmune connective tissue disorders in Autoimmune Diseases


Please let us know how you fare with getting approval for CellCept and, if you do, how well it works for you.



May 11, 2016 · Mycophenolate for autoimmune connective tissue disorders in Autoimmune Diseases

Re Mycophenolate mofetil (CellCept) & off label use: My dermatologist tried unsuccessfully for several months to obtain Medicare coverage for CellCept to use for my Lividoid Vasculopathy (LV). Despite several written appeals to Medicare then to the Independent Review Board for Medicare coverage disputes, it always came back to the fact that LV was not a listed use for CellCept. Some very closely related diseases are a listed use and my Derm MD tried to convince the reviewers that he believed it should also be successful for LV.

Their argument was there were no peer reviewed studies or other substantiated evidence demonstrating this use to be successful, so no coverage. In the end we found other meds that seem to be working for me. CellCept is very expensive, and would have cost us nearly $1,000 per month without insurance coverage. You may have a different experience with another insurance, but if you pursue it, be prepared for a battle.

Good Luck!,

May 10, 2016 · Looking for info on medications for Bullous pemphigoid in Autoimmune Diseases

Hi @earljohnson5030:

Welcome to the group! I really agree with @johnbishop regarding his experience with prednisone. Mine was very similar. I’m not familiar with bullous pemphigoid so I looked it up. It would be helpful if you would share your age and whether you are being treated for some other condition that may have triggered or somehow contributed to the bullous pemphigoid outbreak.

My experience with prednisone was that of a love-hate relationship. Prednisone was the only drug that controlled the edema from a LV or Lividoid vasculitis outbreak that I experienced for the past 3 years or so. I have since weaned from prednisone but still suffer from its side effects: weight gain (added 40 lbs in less than 3 years), thinning of skin (doesn’t take much to get me bleeding), increased eye pressure (which increases the risk of glaucoma which I already had), high blood pressure (which I already had) and, if I hadn’t already had them removed, risk of developing cataracts. In addition, prolonged prednisone use can thin bones and weaken tendons (I had two Achilles tendon tears within one year), increase blood sugar (I’m borderline diabetic) and increase the risk of infections, which in my case was serious because of multiple open lesions from LV.

Yes, prednisone is a miracle drug. It was keeping me reasonably free from swelling and associated painful issues. And I was getting it from multiple sources (oral, injections, topical gels directly on the LV sites, oral gel applications to control mouth sores, ophthalmic drops to control eye infections and oral inhalants to control asthma). At the time, it was the only thing that prevented my legs from turning into balloons overnight due to LV. Once my doctors realized how much I was getting from various prescriptions, we made a concerted effort to wean me from its use. It was not easy, but I’m so glad that I was able to do it. I am now not taking prednisone or corticosteroids in any form.

But I was left with the extra 40 lbs to deal with. My wife loves to cook and I love to eat. That’s a real struggle as I’m 73 now and not as active as I used to be. Don’t get me wrong – I’m not a couch potato. But I can’t do the extreme outdoor activities that I used to. So I have to be satisfied with home workouts and less risky activities. My LV is on the wane but I will need to continue certain meds for the near future: Plaquinil 400 mg/dy, Colchicine 1.2 mg/dy, Bactrim 1600 mg/dy. Those three appear to be maintaining the LV in an inactive state. I take other meds for other conditions as well, but that 3 drug combination allowed me to get off of prednisone. Not to say these meds would work for you. The point is, work with your medical team to find something or a combination of things that do work for you. But don’t expect a miracle overnight.

These diseases we are dealing with are part of life’s journey. Approach them as you would any life challenge, resolving to win the battle. But that may not mean being disease free. It may, as it does for so many of us, mean learning to live with certain limitations while not giving in to them. On the contrary, learn to fight the battle every day but also live life along the way. And don’t forget the loved ones who give you unconditional support in spite of yourself.

The best advice anyone can give you is simple: don’t ever give up in your quest for answers and don’t ever give in to your ills. Live life and find something to enjoy every day.



May 10, 2016 · Ablation for AVNRT produced RBBB - anyone else? in Heart Rhythm Conditions

Hi @guardian:

Welcome to the discussion! We have a very diverse group of folks who have a large variety of heart related issues. Certainly more than a few who have experienced an ablation procedure of some flavor or another. Personally, my one SVT ablation attempt (about 2 years ago) was unsuccessful so I’m likely not going to be of much help on your specific problem.

However, perhaps for others on this thread, I will say that even tho it was a day surgery procedure, it left me with some significant bruising and pain to deal with for a couple of weeks following. I’ve since met with the electro-physiologist MD who did the procedure on two follow-ups and we decided not to pursue another ablation attempt. Why not? Following the first attempt he put me on Cartia and DC’d the beta blocker I was on and I’ve been relatively SVT free since then. The only significant episode I’ve had since the ablation attempt was early this year, when I went to the ER with pneumonia and had an SVT episode while hooked up to an EKG. Good fortune, I guess. They recognized it, injected adenosine and situation over.

You should know you are not alone. Even though we are all strangers, and have various heart rhythm issues, we share a common bond through our similar experiences and can certainly offer support through that avenue. You may not now be looking for support – only answers to your particular issues – but please maintain an open mic. We’re here if you just want to share your experience with others. Who knows, you could end up having the answers for someone else who may benefit in some way from your story.

But, I get it if you are wanting to talk only with someone who has the specific issue you were left with. We’re all looking for answers for some specific issue. And I hear you when you say you are a 53 y/o physically fit male…I’m an avid outdoorsman and fly fisherman myself. And even tho I’m now 73 and have given up my more risky activities such as mt climbing and ski mountaineering, I refuse to relegate myself to a well padded armchair and accept my limitations. I still push the envelope every chance I get, much to my wife’s chagrin.

So again, welcome to the group. You have a condition that you must be mindful of and you must take care of yourself in all aspects of life to stay healthy in order to do the things you most value. Involve your inner circle – your loved ones – in that endeavor, if you haven’t already. Work with your physician team to balance your medications to get the most enjoyment out of life. That’s really the bottom line here – learn to enjoy life no matter what your condition and limitations may be. And most of all, don’t ever give up. Not on life, not on yourself and not on those around you.



Apr 29, 2016 · Want to connect with people who have Coronary Microvascular Disease (MVD) in Heart & Blood Health

Hi @smiles:
I understand you are looking to connect with others who may have a similar or maybe even an identical condition as you have been living with – sounds like for quite some time. My conditions are not likely the same. In fact I had to look MVHD up to have some understanding of what that is.

As I understand MVHD from very limited on-line research and your posts, you are dealing with Microvascular Heart Disease that sometimes causes angina on exertion. Angina due to MVHD I believe is the Syndrome X (sometimes referred to as CSX) part of the package. Please let me know if I’m incorrect in any of this.

Again from what I understand about micro vascular disease in general, It typically does not lead to catastrophic acute coronary syndrome. Of course, you may be different in this respect. Angina, on the other hand, can be very debilitating. All the more so if you were to live your life in fear of precipitating an angina episode. But that doesn’t sound like you. Rather, if I caught your drift, you are living life not holding back because of your condition. Let me clarify though, you didn’t say – and I didn’t get – that you are reckless with your life. Just not willing to take a back seat to your disease.

Ok, if the above is fairly correct, then I have a glimpse into your world. Here’s a glimpse into mine. I’m a 73 y/o man suffering from a handful of conditions, none of which is life threatening. At least not if I take care of myself. But I’m a bit like you – not willing to sit back and let my conditions dictate what I can or can’t do. I have a wonderful wife of 49 years who’s more than willing to do that for me. So we bargain a bit. She doesn’t want to lose me and I don’t want to stop fly fishing, along with a few other activities. None too dangerous. I gave that stuff up years ago.

So what Are my conditions? I have permanent nerve damage in my left leg from a surgery gone bad. That has left my leg much weaker than the right making it very difficult and a bit dangerous for me to wade into strong currents to fly fish. I have painful ulcers on both legs from Lividoid Vasculopathy (LV) for which I take a number of meds, including opioids. I have serious restless leg syndrome for which I take Mirapex in ever larger doses. I’ve suffered from SVT attacks for a number of years. A cardio-physicist attempted an ablation about a year and a half ago, but was unsuccessful. He changed my blood pressure med from a beta blocker to Cartia, a calcium channel blocker. This has reduced significantly the number of SVT episodes. Because of the nerve damage and painful lesions, I’ve tried a number of meds (most very expensive) but consistent over the past nearly three years has been prednisone. Because of that innocent little drug, I’ve gained around 40 lbs in the past two years. That has caused my asthma to flare, along with the need for frequent inhalation therapy. And so on.

So now that we kind of know each other, what is my message? I can’t really give you any advice related to your conditions. But I can say this from experience: Life has many twists and turns and you can’t always see around that next turn to know what’s coming at you. You seem to have the right attitude about your conditions. I hope you extend that positive attitude to those around you who are affected by them as well. Many years ago, I spent some of my valuable time and energy wondering why I came back from a foreign war while others did not. For some things, especially ‘why me’, there simply is no explanation. Its better to accept our conditions knowing that there are others out there in much worse condition than you or I are or will ever be.

That’s not to say ignore them. You must, or your loved ones must, take good care of yourself. Be kind and humble in all things but unyielding to your conditions – never let yourself give up. If it sounds as if I’m lecturing, I’m really not. These are just the musings of an old man. If I can offer anything, its an ear now and then. Oh, and this: Don’t stop looking for solutions and people who may really be able to help you. They are out there.

Take care.

Apr 8, 2016 · Treatment options for Livedoid Vasculopathy (LV) in Skin Health

Hey Martin:

Glad to see you’re back on the post and congratulations on being named Patient Ambassador for Thrombosis Canada – a well deserved honor! You are a wonderful resource for all of us on this post and I for one am grateful for your shared wealth of information.