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Posts posted by CraigR

  1. No swelling or pain here - just dry, dry, dry!


    Dry mouth was far more obvious at the beginning than dry eye, especially when taking a walk outside, when humidity was low.


    My optometrist told me that I had a severe lack of tear fluid long before my eyes truly felt dry.


    Sjogren's usually makes it very difficult to eat dry food. You never knew how important saliva was! My favorite "test" food is Chinese fortune cookies. Couldn't possibly get one of those down without a glass of water!



  2. I've often thought that Raynaud's seems to get worse with hand trauma/soreness. Recently something happened to me that demonstrated this.


    I haven't had severe Raynaud's for a few years. A few weeks ago I fell on a concrete surface and injured two fingers on my right hand. The injuries appeared remarkably similar to Raynaud's ulcers. For about a week after the injury, I had the worst Raynaud's attacks in several years. Upon healing, the attacks went away.


    It seemed to me that soreness of the hands obviously had a strong effect on the attacks - with a possible conclusion that soreness, whether by injury or Raynaud's ulcers, tends to make the situation worse (Perhaps an inflammation reaction?). A very good argument to be very gentle with those hands and do everything to help the circulation and heal ulcers.


    I'm not a doctor, but I found this incident revealing.



  3. I'd suggest that you ask the doctor how many scleroderma patients he treats. Many rheumatologists are very informed about scleroderma.


    You might also take a list of vasodilating drugs. You should be able to find a number of good past posts on drugs that forum members have found useful.


    I believe I'd be long dead if I didn't take over my medical situation. Some doctors can be incredibly indifferent to pain, especially when it is connected to a rare disease. Sure there's a lot of nonsense on the Internet - but there's also a lot of good info, if you can separate the two - so keep up the research.


    Protect your hands! Bandage them up so you don't injure them. You pay a high price when you bang them around.



  4. Thanks to all for the excellent information. The issue of extending COBRA by 11 months for 29 total months being 1 month short of the required 30 months for Medicare eligibility is sort of a problem.


    My employer is having great difficulty trying to put together a 2009 budget (a major part of what I do) and would probably love to eliminate my position. Maybe they would like to work out a deal to keep me on the payroll a short time, as Mary from Philly was able to do.


    I am currently putting together the paperwork for partial disability through my employer's long term disability (LTD) policy, but it may be wiser just to move to complete disability, if it can be worked out. Should not be difficult at all, considering my medical history (I just got the extensive documentation from my rheumatologist - and it sounds like I should have been dead years ago!).



  5. Thanks everyone for all your help.


    I have LTD insurance through my company for 66.6% of salary, and that is what I am applying for at this time (for the partial - working half-time). But the S/S, Cobra and Medicare will need to be strategized in the event of complete disability.



  6. Recently I heard that after two years of complete disability, one can be eligible for medicare.


    I am working part time and still retain my company benefits. This is very good, but I would like to know the medical insurance options should I become completely disabled. I spoke with a lawyer who seemed to think that 100% disability would be easy in my case, but for now I prefer to work. But if I were completly disabled, I think COBRA would be possible for 18 (possibly 36) months, followed by Medicare after 24 months disabled. Does this sound correct? Does anyone know how to get COBRA benefits for the entire 24 months while waiting for Medicare, if 100% disabled?


    Thanks for any advice that you may have!



  7. The last time I had finger ulcer trouble I got relief with Adalat (a calcium channel blocker) and Prazosin (also called Minipress, an alpha blocker).


    Vasodilating drugs such as these and Viagra and Cialis can be very helpful. They can have the side effect of lowering blood pressure. Your doctor may avoid them because of this. A home pressure testing device can be useful to check on this. They are available at drug stores.


    I've often found it necessary to do my own research, and confront the doctor with my own research and recommendations, asking the doctor what the problems would be if I took these medications. There may be very good reasons not to. But if your doctor won't have such a dialogue, get a new doctor!


    Good luck,



  8. Just want to second what Shelley said about hats - and how so much warmth is lost through the head. I love the knit ski-type caps, and they are usually available very cheaply at the big stores. I keep a few around since, like scissors, they have a mischievous way of hiding just when you need them! They can also be doubled up for extra warmth. Of course my bald head need the extra help. For about six months of the year I wear thermal undershirts - and I live in San Diego. Like Pieski mentions, you can still freeze in a warm climate, what with all the people who like the air conditioning set at about 66 F.



  9. I mentioned that there should be more than one antibody test because I have had times when Sjogren's antibodies did not show - but usually they do. Lab tests often give false negatives or positives.


    Nevertheless, since the symptoms are so intense for me (mouth dry as the desert if I even go for a small walk; impossible to eat dry crackers without water), it's obvious. Sort of like having a creature in the living room that is shaped like a horse, but has black and white stripes. You might want to do further tests, but I'd be quite sure that it's a zebra...



  10. Is your doctor a specialist? A Rheumatologist?


    I would suggest that you do some net searches on both of these medications. I am not a doctor, but I have read that both of these medications, since they effect the immune system, can cause cancer. I believe that Imuran suppress the immune system. Most all such drugs tend to carry cancer risks. Perhaps your doctor has information that Imuran is less of a threat - but I would want to see the documention (as I would for any medication...) before taking/changing meds. My experience has been that there are a lot of uninformed doctors.



  11. I developed substantial Sjogren's about 20 years after my first scleroderma (CREST) symptoms.


    Evoxac is a cholinergic agonist which is supposed to increase the flow from salivary glands, tear ducts etc. I take it, though it seems to have very little effect. Some people report great relief from dryness. There is a similar, older drug called "Salagen" which is said to have less effect.



  12. I was diagnosed with Sjogren's without a lip biopsy.


    First there was the Schimmer (sp?) test. This is when a tiny piece of paper is hooked in the eye, just under the lower lid. After a set time, it is removed and examined to see how far the eye fluid has soaked into the paper. A very small amount is highly suggestive of Sjogren's.


    But more specifically, the blood tests for specific antibodies will tell if you have Sjogren's autoantibodies. More than one test is a good idea, since it can be in error.



  13. I'm lucky to have a rheumatologist who is a wonderful communicator, but I've had to deal with many arrogant doctors.. I usually wonder why they didn't become vets, since they prefer that level of communication with the patient.


    The Internet affords some sites for rating doctors - good for finding recommendations and posting your experiences, good or bad.



  14. JohnJ


    Regarding SSD - the laws are probably different between states, but you probably have to prove that you can't do any work, not just your trained profession. Your background gives you a lot of knowledge that could be used elsewhere, as you mention. If fatigue is a big issue, that may be a bigger problem for working. I'm trying to get partial disability because I've gone to working part-time, since I can't find the energy to work full-time.


    There are finger protective products made - the ones I use are very expensive but work well. PM me if you would like the brand name. I've either used these or bandaged them to avoid hitting (or even touching...) a fingertip ulcer, as it can be so incredibly painful, especially when you're used to using your hands a lot. If I could avoid touching or banging ulcers, avoid tensing hand muscles and keep warm (all over - not just hands), the pain was usually not too bad. However, I only had it to the point of getting fingertip ulcers, not blackened, gangrenous fingers. I take serious pain medication, but that is for peripheral neuropathy brought on by cancer treatment.


    Good that you are accepting that you can't continue to be a mechanic. That will just kill your hands, while you yell every time you hit a sore finger (I speak from many a memory working on pianos). Even gardening, when I spend much time tensing my muscles holding a trowel, worsens my circulation.


    Here are some medications that various forum members have reported as helpful for Raynauds:



    Calcium channel blockers (Nifedepine, Adalat, etc.)

    Nitro cream




    You may have to get very insistent with your doctor. I've found far greater success when I take over being the doctor (so to speak), and do my own research. If your doctor resists this fire him/her and get another!



  15. I always thought the six minute walk only pointed out very severe pulmonary problems.


    I noticed my lung deficiencies while in a strong exercise regimen (vigorous swimming, walking miles a day). I only noticed it when I had to take breaks from swimming to catch my breath, while people in far worse shape swam past me.


    The six minute walk, on a flat surface, was easy to go very fast, leading to a diagnosis of no problem at all. But had I walked up hill, it would have been obvious. Compared with anyone else in the shape I was in, I was a mess.


    Your lungs can be quite limited while still being able to walk a fast clip on a flat surface.


    Again, how you must fight for a diagnosis.



  16. Your history of working with your hands is somewhat similar to my own with Raynauds. I was diagnosed with Raynauds 31 years ago (shortly after, CREST) at age 22 when I developed an ulcer on my right index finger. I was also engaged in work that put a lot of stress on my hands (rebuilding old player pianos). I don't think I would have had such severe symptoms at such an early age were it not for the hand stress. The lesson being to avoid tense, stressful hand use. If you go back to work, you may need a career with less hand stress. I think you're asking for trouble trying to find a way to use your hands for work.


    This disease can be uniquely challenging for the male what with the "no pain, no gain" attitude. Its hard to just rest. Not just Raynauds, but also the fatigue issue. I've found it always troublesome to push things - just makes things worse.


    Have you researched other medications? There are many old postings on this forum regarding the usefulness of different medications.


    Some have found nitroglycerine cream effective (but not for me). The old alpha blocker Prazosin (Minipress) was a great help to me and a few others, though some found it ineffective. It is inexpensive. Everybody seems to react differently to the various medications.


    Be wary of the use of steroids (i.e.- Prednisone). There are many dangers with this drug, especially with scleroderma, though some can't get along without it. This site has good info on that.


    Your doctor may avoid some helpful medication out of fear that your blood pressure may get too low (vasodilators tend to lower blood pressure). This can be helped by getting a battery powered meter at a drug store.


    Also, central warmth can be very important. No amount of hand warming is very effective for me without being warm all over. An icy drink on a hot day can lead to an attack.


    Good Luck,



  17. I had an avascular necrosis of my right hip. I had a complete hip replacement 3 1/2 years ago (age 50), and it seems to be doing well. One theory is that it may have been caused by taking prednisone for an inflammatory condition. Thus I avoid steroids like the plague (not to mention all the other possible ill-effects).


    It started out as just a minor glitch, but got so bad that I had to have the surgery.


    Also, ten years ago I also had surgery on my knee for what was thought to be a torn meniscus, but turned out to be chondromalacia (worn away cartilage).



  18. I had my greatest relief for a terrible bout with Raynaud's with Adalat (a calcium channel blocker, like nifedipine) and Prazosin (Minipress). Both drugs together seemed to provide relief. I currently take Revatio for pulmonary hypertension, but since my Raynaud's hasn't been severe lately, I can't speak to its effectiveness.


    Prazosin is an alpha blocker. Raynaud's is thought to possibly have some contributing causation in overactivity of the sympathetic ("fight or flight") nervous system. Prazosin tends to suppress this. Sympathetic suppression tends to increase peripheral circulation. As with so many of these drugs, the effectiveness varies. For some (me) Prazosin work great on Raynaud's - but others have not had this success. By the way, it is an older, less expensive medication - so the big corporate "pushers" don't tout it. I have had no side effects, and I take many meds. I had a side effect with Adalat - gynecomastia, but not in the senses of true male breast growth. I got some hard, sensitive tissue (about the size of a dime) under my nipples. It went away when I went off Adalat.


    The main side effect (as with most peripheral vasodilators) is lowering of blood pressure (hypotension). Your doctor may be hesitant to prescribe it for fear of hypotension (and may not tell you this - and it's your pain, not his). Get your own blood pressure tester at a drug store or pharmacy and promise to check your pressure. Also, be on the lookout for a feeling of faintness when you arise from sitting or lying (a sign of hypotension). Things might be more complicated if you have heart issues.


    I "found" Prazosin by searching the Net when I couldn't get sufficient relief witht the Adalat, and brought my research to my rheumatologist. Once again - proving that you must be your own doctor, and insist on your points with your doctor. Fortunately my rheumatologist is a wonderful communicator (not a quality common in doctors). Push, push, push - and fire the doctor who won't engage in the dialogue.


    My only other advice is to maintain core warmth. No amount of handwarming is helpful if the core of the body isn't warm (but I'm sure you know this...).


    Good luck,



  19. I take revatio (same med as viagra, but a different dosage). I take it for pulmonary hypertension, and my raynauds has not been very bad lately, so I can't tell if it helps that. No side effects.


    Several years ago, about 10 months after a stem cell transplant for lymphoma, I had raging Raynauds. Nifedipine (calcium channel blocker) helped a little - but adding Prazosin (alpha blocker, I believe) helped more.


    Different therapies seem to work for different people, and there are many drugs available, and experiences documented on this site.



  20. Regarding the children with anger at parents for possibly passing on genetic problems: Have those children considered that the only way to have prevented it would have been some sort of birth control? .. and what the would mean?.. but they are probably a little young to have thoroughly thought out the situation. Better to be able to play the cards you're dealt than not to get any cards...


    Does anyone know of scientific studies of this issue of scleroderma and inheritance? I would like to be part of it. I wonder because all I have heard is hearsay and speculation. With my father and I having had the disease, I'm skeptical of the theory that it skips a generation, and would like to see real research - which must be underway.


    (by the way, I'm not mad at my father for possibly passing on a genetic disease!)


    When I think of the hearsay issue, I'm reminded of a medical text from the 1930s where I first read of Raynauds. The writer said that it usually effected young, Jewish women with a hystrionic personality type. Obviously that was his experience, but very wrong and unscientific (and a bit comical, in retrospect).



  21. Clementine,


    My doctor did the exact same thing - diagnosed meniscus by symptoms and manipulation, but it turned out to be chondromalacia. I believe chondromalacia is "runner's knee" - or some sort of it. It is the thinning and loss of cartilage in the knee joint, very commonly brought on by running and doing stair-climbing exercise.


    I didn't do a lot of running, but it may have related to an injury or incipient arthritis. I had it for a long time, but had to do something when broken off pieces of cartilage interfered with the movement of the joint - kind of like a hinge that doesn't work right because something is stuck in it. Also, when the cartilage gets so badly worn that the bone is exposed ("stage 3"), the pain is so excrutiating that something must be done (cannot put any weight on the leg). If it's anything like that, you'll know!


    The surgery did wonders - and didn't take long to get over. The only trouble I had was a recurrence when in heavy chemotherapy for lymphoma 6 years ago.



  22. Since there is obviously a question regarding diagnosis, you probably need to get into greater detail regarding the blood and lung work information, if you haven't already.


    As others have mentioned, it is possible to have Raynaud's without sclero. However, a major issue about the diagnosis is whether or not the rheumatologist found specific auto-antibodies in the test work. These are the specific antibodies that are attacking the body. They are different for different conditions, and the tests can show different at different times (??).


    So, if the testing shows antibodies for sclero, lupus, Sjogren's or whatever (especially when repeated after a period of time), there is a higher likelihood. If there are none of these antibodies, the likelihood is greatly reduced. None of this is necessarily absolute - there many different ways that people test. These are some very strange diseases, and lab work can be far from perfect.


    The test for telangiectasia seems somewhat suspect. For most of us, these are obvious red dots, especially on the face.


    Lung can't be too bad if he plays racquetball for hours. But you would also benefit from a complete pulmonary function test, and get the results so you can check them out yourself. Be sure that they do a "diffusion" test.


    My father had Raynaud's probably starting in his late twenties - when I was a child, we were told that he just had cold hands because he smoked. It wasn't until his fifties that he had onset of kidney and lung problems.


    I first had Raynauds at 22 - 31 years ago. Other symptoms came a little bit earlier, but haven't gotten worse (now 53). As others have mentioned, the progression of the disease varies widely. It's almost as if each patient has his/her own version.


    I am not a doctor.


    Good luck,



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