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Medical Forum / Diseases and Disorders / Arthritis / June 2006Introduction II
My wife, 55, is becoming increasingly disabled ... She has pulmonary hypertension, phospholipid syndrome (Lupus SLE), osteoporosis (with 2 collapsed vertebrae), primary biliary cirrhosis and to cap it all was diagnosed with rheumatoid arthritis last week in left knee and hip .. she can't have surgery as she's on Warfarin unless they come up with a miracle solution .. We think these problems are a result of her being originally diagnosed with RA @ 17 and prescribed long-term steroids (prednisolone) and which was finally diagnosed as Lupus in her 30s ... She was one of the first in the UK to have a pulmonothromboendarectomy operation in 2000 (freeze you, butterfly you, scoop the blood clots from the lungs and sew you back together) .. She can't walk more than 5 yards without my underarm support .. Hoping there's hope for the future .. Stuart Stuart, My prayers are with you both... I hope she can find the answers you are looking for... I know have a SIL with the PBC. She is not on a liver transplant list yet, but that will be soon. Hugs Cindy > My wife, 55, is becoming increasingly disabled ... > [quoted text clipped - 17 lines] > > Stuart (((((stuart))))) (((((wife))))) Yes, it hurts us when our spouses hurt! Love and prayers, Vickie B. Welcome to asa Stuart, It may take a while before someone posts with information about their experiences with similar symptoms. While you're waiting have a look at http://www.arthritis.co.za/ This is a web site by a Rheumatologist that visits here occasionally. GramPaHugs, Alex, > My wife, 55, is becoming increasingly disabled ... <snip> > Hoping there's hope for the future .. > > Stuart  SignatureAny information is included for informational or entertainment purposes only, is based on my personal experiences & is an expression of my opinion. **************************************************** * Love radiating from 45.10n x 93.30w M/SP Mn * http://home.mn.rr.com/apbiii * http://grampahugs.is-a-geek.org/ * http://www.goldenmist.org **************************************************** > http://www.arthritis.co.za/ That's an excellently informative site .. thanks Alex Stuart Stuart, my prayers for your wife, and for you. Gwen > My wife, 55, is becoming increasingly disabled ... > [quoted text clipped - 17 lines] > > Stuart Dear Stuart and wife, Most of us on this site have some idea of what you are going through at the moment. I wish I could be of help but you are in England and I am in Australia.. Your wife is the same age as me so I know how frustrated she must be feeling - we are still so young. All I can suggest is that you give her support and pray as it may be a long journey before the right medication is found. Gail > My wife, 55, is becoming increasingly disabled ... > [quoted text clipped - 17 lines] > > Stuart Stuart, I am having a minor procedure in a month or two and they are taking me off warfrin a few days before the procedure to let the warfrin get out of my system and are putting me on a shot that is given in the stomach, I will take the shot 2 x a day in the tummy as it leaves the system when you stop the shots. I can't remember the name of it right now, I think the day before the procedure I will go off the shot in the stomach they will do the procedure and I will go back on the warfrin. I also have pulmonary hypertension. Does your wife have the defective gene also? I have to take it the rest of my life. Your doctor must know of this, ask him. But perhaps the surgery would just be too serious for her to do this. But this is what they are doing to me. Lots of gentle hugs to your both. > My wife, 55, is becoming increasingly disabled ... > [quoted text clipped - 17 lines] > > Stuart > Stuart, I am having a minor procedure in a month or two and they are taking > me off warfrin a few days before the procedure to let the warfrin get out of > my system and are putting me on a shot that is given in the stomach, I will > take the shot 2 x a day in the tummy as it leaves the system when you stop > the shots. I can't remember the name of it right now That would be heparin ... I used to give the wife two jabs a day when she was pregnant 28 years ago to lessen risk of miscarriage which, unfortunately occurred .. We have discussed this, but she has about 4 different consultants for her various conditions .. they need to agree strategy between them .. It's currently a wait-and-see how current treatment progresses .. > I also have pulmonary > hypertension. Does your wife have the defective gene also? Not sure ... think it's all down to the lupus .. > Lots of gentle hugs to your both. Thanks and gl with the op .. Stuart >> I also have pulmonary hypertension. Just an afterthought ... are you on Warfarin specifically for the PH? The SO was put on it (9mg daily) to minimise further clotting before PH was diagnosed .. her PH consultant tried a number of things to improve pulmonary blood flow such as Bosentan (they, understandably, couldn't remove *all* the deeper clots) ... A year or so ago he pioneered (in the UK) and subscribed the use of sildenafil (Viagra 3x100mg daily) which has the same effect on ladies' pulmonaries as it does (allegedly - I have no personal experience) on gentlemens' nether regions ... maybe ask your consultant about it .. She had a huge improvement and would now have been great had the osteoporosis not kicked in .. Trouble is, they deliver (monthly) more than her dosage requirements, so we have a cupboard full of the stuff ... maybe I should start selling the surplus on the net ... ;) Stuart >>> I also have pulmonary hypertension. > > Just an afterthought ... are you on Warfarin specifically for the PH? *Not sure what PH is but I have a defective genetic gene that makes me more apt to develope blood clots than the average person. I developed blood clots in my leg and lungs last fall and it took them a long time to give me a diagnosis. I ended up getting a 2nd opinion as I could feel myself loosing ground. I was getting worse and not better, I was coughing up the lining of my lungs when it was finally diagnosed and they found the defective gene. So because of this gene they feel it is better to stay on the Warfrin and just not take a chance for the rest of my life. > The SO was put on it (9mg daily) to minimise further clotting before > PH was diagnosed .. her PH consultant tried a number of things to > improve pulmonary blood flow such as Bosentan (they, understandably, > couldn't remove *all* the deeper clots) ... *I take 4mg. daily and 6 on sunday and it keeps my count right where they want it. > A year or so ago he pioneered (in the UK) and subscribed the use of > sildenafil (Viagra 3x100mg daily) which has the same effect on ladies' > pulmonaries as it does (allegedly - I have no personal experience) on > gentlemens' nether regions ... maybe ask your consultant about it .. *Is the viagra working for your wife? I really hate taking the warfrin because of the danger of bleeding and I bruise so easily. I have heard of another drug advertised on television that is suppose to keep your veins cleaned and I can't think of the name of it. I see the nurse tomorrow who draws my blood for the test. I wish I had wrote down the name of it so I could ask her about it. But I will ask her about the viagara. It seems safer than warfrin. > She had a huge improvement and would now have been great had the > osteoporosis not kicked in .. *Is she taking medication for the Osteoporosis? > Trouble is, they deliver (monthly) more than her dosage requirements, > so we have a cupboard full of the stuff ... maybe I should start > selling the surplus on the net ... ;) *Most likely you would get in trouble if you did that. Use it yourself. ;-) > Stuart > *Not sure what PH is but I have a defective genetic gene that makes me more > apt to develop blood clots than the average person. Simply put, a furring of the pulmonary vessels (due to mini-clots) which make the heart work more .. the Warfarin helps reduce clotting and the Viagra widens the vessels to reduce the pressure .. > *Is she taking medication for the Osteoporosis? Yes .. the usual calcium tablets, she was on Actonel but now has, every couple of months, an hour-long intravenous drip of pamidronate .. Stuart > *Not sure what PH is but I have a defective genetic gene that makes me more > apt to develope blood clots than the average person. Have a wander around http://www.pha-uk.com/ Seems you have Familial PPH .. Stuart >> *Not sure what PH is but I have a defective genetic gene that makes me >> more apt to develope blood clots than the average person. [quoted text clipped - 4 lines] > > Stuart What I have is the Prothrombin G20210A Gene, I called it defective, but it is a mutation. I will have to read the site you gave more intense to understand familial PPH and PH. Thanks for the link.. >> Stuart, I am having a minor procedure in a month or two and they are >> taking me off warfrin a few days before the procedure to let the warfrin >> get out of my system and are putting me on a shot that is given in the >> stomach, I will take the shot 2 x a day in the tummy as it leaves the >> system when you stop the shots. I can't remember the name of it right >> now *That doesn't sound like the name, maybe what I have taken is a generic of it though. I have had to take it a few times. My husband gives me the shots too when we have to go that route as I can't do it myself. > That would be heparin ... I used to give the wife two jabs a day when > she was pregnant 28 years ago to lessen risk of miscarriage which, [quoted text clipped - 4 lines] > > It's currently a wait-and-see how current treatment progresses .. *Good luck to her, I hope they can reach a decision soon to help her. >> I also have pulmonary hypertension. Does your wife have the defective >> gene also? [quoted text clipped - 4 lines] > > Thanks and gl with the op .. *You know it is sometimes hard to stay positive with all that I have, but when I hear what some others go through, I feel very fortunate. You have helped me thanks. > Stuart |
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