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Everything posted by CraigR

  1. Just to add my 2 cents worth: I had a terrible time with Raynauds about 9 months after a stem cell transplant for lymphoma (all fingertips bandaged and in great pain). My rheumatologist put me on Adalat (calcium channel blocker). It helped, but not enough. I searched the net for other vasodilators and found Prazosin (Minipress), an alpha blocker commonly used to treat high blood pressure. The two medications together did the job, and I believe Prazosin is not very expensive (if cost is a problem). I'm surprised it isn't recommended more often. I found it more effective than the calcium channel blocker, and did not have side effects (as the calcium channels blocker did). One of the theories behind Raynauds is that it is caused by the sympathetic nervous system being too strong - set to the "fight or flight" mode. Alpha blockers are supposed to reduce this effect, bringing back peripheral circulation. Since this might be getting closer to the root of the problem, it might be helpful in other ways.(?) Most of these drugs (peripheral vasodilators) tend to lower blood pressure. Since mine is already in the normal to low range, I use one of the automatic blood pressure devices that you can get at any drug store. That way I can check to make sure that it doesn't get too low. This can help alleviate the concerns of the doctor, who might be afraid to use these drugs for fear of excessively low blood pressure. Craig
  2. Went in for second laser treatment for telangiectasias 5 days ago. The doctor turned up the power a bit, since I had no trouble with the last treatment. The laser was KTP Diolite - fairly low power, meant to clear up broken capillaries, and targets each one individually. There is definite improvement. I am pleased with how it has come out, especially after the second treatment. The doctor said that treating telangiectasias is rather rare - so he seemed to learn from the first treatment and did a better job (probably by turning the power up) the second time. Still some variation in facial pigment (like the average person of my age), but now does not have the spotted scleroderma look. The doctor recommended against using "V Beam" laser, which targets large areas and has way too much power, as it can lead to some scarring. In his opinion, these should only be used on "Port Wine" stains (nevus). Craig
  3. Diagnosed with CREST (CRST) in 1977. No face tightening. Fingers a bit shortened from Raynauds ulcers, but otherwise okay (if somewhat lacking the dexterity of someone without the disease). Craig
  4. I like to periodically have a Sed Rate (Erythocyte Sedimentation Rate) test done. It is a non-specific test for inflammation. You can definitely feel fatigued if it's above normal, and inflammation is a big issue with Sclero. I've joked with my rheumatologist that I can pretty-well guess my sed rate by how I feel! Craig
  5. First serious Raynauds attack in 1977, at age 22. Looking back, however, I think I probably always had problems possibly related to Limited Scleroderma (my father also had it). I developed epilepsy in 1970 at age 15, which I suspect is related. Lung problems became apparent in 1996 at the age of 41. At that time I took up rigorous swimming 5 nights a week, and had been working in a job for many years that required walking a few miles a day over hilly terrain. I also get a lot of exercise gardening. I'm always at my ideal weight. After about 6 months on the swimming program I noticed that I still had to stop to catch my breath, while obviously obese, out of shape people 20 years older than me would swim right past me. I also noticed that when hiking, I would be far more out of breath than others. Also, my father had had serious pulmonary fibrosis. I went to my primary care physician who did a lung volume test that consisted of blowing into a gun-shaped device. My scores came out very high, sometimes 200% of the expected volume of air. My primary care physician told me that there was no problem, and that I was just "out of shape" (???????????????!!!!!!!!!!!!!!!). So I went to a pulmonologist. The first thing I learned from him was that very high scores on lung volume are a symptom of early pulmonary fibrosis! (especially in individuals who get a lot of exercise.) I had reduced (64%) diffusion, which means that I was not able to take in as much of the oxygen that I breathed. However, this doctor told me that the diffusion problem was not that bad, and, with my high capacity, I should do as well as anyone (WRONG! - tell that to my hiking friends who have to wait for me to catch my breath...). Again, the usual Doctor arrogance when I tried to explain the situation (maybe I needed a psychiatrist to explain to me that I really wasn't out of breath after climbing a flight of stairs, that it was all in my head...). A few years later, following treatment for Burkitt's Lymphoma that included an autologous stem cell transplant, I developed raging Pulmonary Hypertension. It was originally diagnosed as double lower-lobe pneumonia, and was unresponsive to treatment. It was so bad that the mere act of standing up made me extremely breathless. I was hospitalized at one of the top places in the world for PH. I was tested and had numbers that indicated very serious PH. However, after about 10 days, it went away! I had the "two-week" PH. (though I still have low-grade PH). It confounded the doctors. The said that "I couldn't do that" or "it can't be true". It was hilarious. (what could be more fun than confounding arrogant doctors?) I take Tracleer (Bosentan) for the fairly mild PH.. A major lesson that I've learned is that the field of medicine isn't much concerned unless your symptoms are very severe. The PH clinic doesn't seem to think I have much of a problem, since I walk the "6 minute walk" (flat) quite quickly - but try walking with me up an incline and a serious problem becomes obvious! Craig
  6. Very interesting question. My father, who had CREST scleroderma, same as me, suffered from classical migraines (photophobia, aching hair, scintilating scotoma). According to the literature, migraine is a vascular headache - so, considering the vascular issues with scleroderma, it would not be surprising. I do not have migraine, but I have mild epilepsy. I read in a book that there is a very high concurrence between epilepsy and raynauds - so a connection seems likely. Craig
  7. This fibromyalgia issue is interesting, especially in relation to scleroderma. I get occasional myalgia pain, mostly on my left side (?). Sometimes it is bad enough to make breathing quite painful. Usually (but not always) it follows exercise or stress, and usually includes fatigue. It seems to start around my left shoulder and travel down the left side of my chest My rheumatologist says that it may be some fibromyalgia-like condition. However, I have an elevated Sed rate, which I understand is not supposed to be the case in Fibromyalgia. So, like Patty, might this be some misunderstood aspect of scleroderma/autoimmune disease? Very strange. Craig
  8. Sounds like you need to find another doctor, if your pain isn't being treated. Pain is pain, regardless of the cause. Have you considered a pain clinic? Craig
  9. A woman I know of says that Dr. Furst saved her life. I spoke with him once regarding stem cell transplantation (which I had for Lymphoma). He recommended a major clinic in Seattle (Sloan Kettering?) for sc transplantation for scleroderma. He is locally recognized as tops in southern California - with his clinic at UCLA being one of the top Scleroderma clinics in the country. Craig
  10. I had laser treatment this morning for telangiectasias. It also felt like pin-sticks. I asked the doctor about the laser. It is a KTP laser, Diolite by Iridex, 532 NM wavelength. It is one of the milder lasers that doesn't pierce very far, so good for broken viens/capillaries, but not strong enough for hair removal. The doctor aims a pen-shaped device at the individual spots. I had this done about a year ago, but I didn't follow up to get areas that didn't "take". This time I got another appointment in about three weeks. Unfortunately, I didn't get any "before" pictures. Craig
  11. Congratulations and good luck. I go in day after tomorrow (7-25) for laser on my telangiectasias. Craig
  12. I've had trouble with itching, as well as dry mouth from secondary Sjogrens. Here are some things that I would recommend you try: anti-itch cream containing antihistamine anit-itch cream with hydrocortisone anti-itch cream with benzocaine (this works best for me) body powder with menthol (after bathing) These are all easily available at any drugstore. A good moisturizing cream with lanolin can also be helpful. I experienced a surprising improvement went I switched from taking baths to showers.(???) Doctor says shower has less of a dehydrating effect on the skin. There are meds that can help dry-mouth (Salagen, Evoxac), in case your Rheumatologist hasn't told you, as well as other helpful products from companies such as Biotene. Good Luck, Craig
  13. I've had this procedure twice at UCSD Med Center. Both times, the catheter went in at the groin. A local anesthetic was used (probably lidocaine) at the point of entry. Not a big deal - the worst part is probably the injection of the anesthetic, which stings a little. Craig
  14. I came down with shingles about 7 years ago, which was followed by an inflamation disorder that had me in bed for a few weeks. I've heard that shingles can be stress related. My sister got it during her divorce, and she has no autoimmune condition. Craig
  15. I've had laser for telangiectasias. I agree with Peanut about trying it in on one area first. Everybody's skin can be different. Also, check out photos that the doctor may have. Not a problem for me. I don't know how many different kinds of laser there are, but the type I had did not leave anything like a sunburned patch as some have mentioned. The doctor aims a pen-shaped device at the individual spots only. It was necessary to make return visits a couple of weeks after for follow-up on areas that may not heve worked. If I were you, i'd go for it. Craig
  16. Smoking used to be very fashionable (it still is for some). But how many of us would now look up to a smoker as wise and fashionable? Tanning seems to headed the same way. It's no longer attractive because it points to self inflicted health trouble - with the irony that something motivated by vanity eventually leads to unattractiveness. Don't we have enough problems with scleroderma and the medications required? Craig
  17. Gemma, You mention blood tests - but there are so many specialized tests, especially for autoimmune diseases. I agree with others who recommend a good rheumatologist. My rheumatologist orders a "Lupus Panel", which tests for various auto-antibodies as well as the usual tests associated with this type of illness (such as RH factor). Bad creatinine clearance with high blood pressure points to possible kidney involvement. There are treatments - but you need a specialist. Forget the general practitioner or Family Practice Physician... Good Luck, Craig
  18. I have taken Tracleer for secondary PH. I've been off of it for a while due to some insurance problems, but I will be starting back up soon. I didn't have any side effects, and it seemed to help. Regarding your fingers, there are some older, less expensive drugs that can be helpful. I've used Adalat (Nifedipine), a calcium channel blocker, as well as Prazosin (Mini-press). I found these helpful during a very bad bout with Raynauds. About 9 months after a stem cell transplant for lymphoma, Raynauds came on so bad that I had to bandage all my fingers. The two drugs mentioned above seemed to put it in remission. Most any peripheral vasodilator will tend to reduce blood pressure. Your doctor may be hesitant to prescribe them for this reason. I use one of those automatic BP devices that you can get at any drug store to check to make sure it doesn't go too low. Good Luck Craig
  19. I had laser surgery done to clear up telangiectasias. It was done by an Ob/gyn who does it on the side. He aims a pen-shaped device at them and zaps them with the laser. There's a little pain, but only during the procedure. There's a need to follow up, since some work out better than others. The doctor charges $75 per treatment, so I didn't get caught up in expensive cosmetic surgical treatment (the doctor told me that he had successfully treated some cases with a few $75 treatments for patients who had earlier been charged $1000 for unsuccessful treatment). I think it's worth a try if you can find a good doctor who charges reasonably. Good Luck Craig
  20. I've had laser surgery for Telangiectasias. The doctor (who is otherwise a gynecologist) uses a pen-shaped device. He charges $75 per treatment. It seemed to help, though there is a need to follow up in areas that may not have worked just right. There is some pain, sort of like a little burning, but only during the process - nothing afterwards. Craig
  21. I tend to be itchy on my legs and lower back (if you know what I mean...). Sometimes there are bumps, but I think they come from scratching. Moisturizing cream helps a bit, hydrocortizone cream can help the itch - but the most effective med for me is an OTC cream. You can PM me for the name of it. Craig
  22. Muscles in my lower legs have become tighter - most noticeably in the back of my leg (hamstring). When walking up an incline, my heels may not touch because the muscles have become so tight and inflexible. No amount of physical therapy seems to have a lasting effect. Muscles in my toes ahve also lost their elasticity. Craig
  23. My first tip off came when I decided to get in better shape by swimming. I already walked a few miles a day at work. I noticed after a few months of swimming vigorously 5 days a week, that people older and in much worse shape would swim on by, while I needed to stop occasionally to catch my breath. My general practitioner did lung capacity testing, which turned out to be quite good (too good - which I later learned is an early sign of pulmonary fibrosis), so he told me that I was "out of shape" (??!!). Also noticed, when hiking, that I needed to rest when going up hill. Never a problem with a cough. Specialist (pulmonologist) diagnosed mild fibrosis / pulmonary hypertension, which has become worse, especially after a bout with lymphoma. Craig
  24. Not mother daughter - but father - son. I'm a 52 year old male with CRST and my father also had it. Neither my mother nor my 2 sisters have any autoimmune disease. Goes against the high prevalence of females with these diseases. Craig
  25. I have some trouble with smell - sometimes I mistake odors, like there's confusion. Definitely have hearing problems - tinnitus along with a high frequency hearing loss. I've sometimes thought it might have had something to do with the use of Plaquenil. I haven't been exposed to loud sounds, which is the usual cause. Oddly, my hearing loss makes it difficult to discern words, often even when spoken loudly - Example, I might confuse "health" with "house", even when spoken quite loudly. A voice that enunciates strongly is easy to hear, even when spoken softly. Conversely, a slurred or nasal voice is difficult to make out, even when spoken loudly. Sometimes I think of it as dyslexia of the ears. Craig