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Everything posted by CraigR

  1. I think you should have any persistent joint pain checked by an orthopedic surgeon. When I was undergoing treatment for lymphoma, they asked me how much trouble I had walking, what with the avascular necrosis in my hip, that they saw on a scan. I just that I had a little glitch from age (late 40s at the time). A few years later I had a complete hip replacement. Thus I dodn't try to guess at these things. As for scleroderma pain, myalgia (muscle inflammation) is much worse for me than any joint pain. They can be hard to tell apart. At a time when I was in a lot of pain I had a x-ray of a joint, which showed no arthritis - which narrowed it down to myalgia. Craig
  2. Regarding the questions for the doctor that you forget to ask-- I got so bad with that that I always wrote them down on a 3X5 card for the appointment, or I was sure to forget half or more of them... Craig
  3. There are many reasons why you might want to avoid Prednisone. Unfortunately, nothing else seems to be so effective at reducing inflammation. You may want to do further research on this site, since one of the dangers is increased kidney trouble in scleroderma patients. I had a complete hip replacement done a few years ago due to an avascular necrosis, and was told that it was probably caused by Prednisone therapy. There are many other possible side effects, including reduced bone density, tendency to gain weight, diabetes. It can effect your mood- especially in the higher doses (as others have mentioned above, I also tended to be short tempered and very energetic - so energetic that I would forget to take it easy). Doctors usually want to get you off of it (or at the lowest dose) as soon as possible, due to the possible side effects. I won't touch it, and use pain killers instead. Good Luck, Craig
  4. I agree with the "Balance" and "Know your body" philosophies mentioned above. I have the problem of feeling great one day and overdoing it. The next day I can hardly get out of bed. It's too easy for me to deny my limitations when I feel good. The usual rules of exercise don't necessarily apply. I used to follow the "no pain no gain" philosophy. If I still did that I'd be dead! A little too much activity and my inflammation numbers (Sed rate) go off the chart. Take Care, Craig
  5. Like Jefa, I noticed some difference in itching based on how I bathe. I would always itch more when I took baths rather than showers. I think soaking in the tub draws out more of the skin oils. When badly itchy, ointments containing benzocaine worked better for me than others (cortizone, etc.). As other have mentioned, good moisturizer is also helpful, especially when put on right after bathing (I find that it isn't as helpful when I've already become itchy). Good Luck Craig
  6. Nina, I've had a few specific joint problems (replaced right hip due to avascular necrosis, chondromalacia in right knee), but nothing like you describe. Have you been checked out by an orthopedic surgeon? Craig
  7. Ozzy, One other thing that I would recommend is that you keep track of your "ESR" (Erythrocyte Sedimentation Rate, or "Sed Rate"). It is an inexpensive, common test for inflammation. It is non-specific, which means that it detects inflammation from any source (the flu, cancer, arthritis) normal is around 10 - 15. Higher means that there is inflammation going on. If there is no other obvious reason for inflammation, and the number is high, then there is something going on. I'm not a doctor, but I think that this value tends to be normal with fibromyalgia (one of the hallamarks of fibro being normal tests). So if your pelvis hurts, and your ESR is elevated it might be some sort of inflammation process. I have frequent problems with myalgia (inflamed muscles) form sclero. My sed rate is sure to be high when this occurs. The diagnosis problem is almost universal to those of us with these problems. Far too many doctors blow you off if your symptoms aren't easy for them to figure out. Before I finally got a diagnosis of pulmonary hypertension, my doctor insisted I was "out of shape", even though I was at ideal weight, swam vigorously 4 or 5 nights a week, went on 20 mile bike rides, worked at a job where I walked a few miles a day over vigorous terrain, and spent spare time gardening! I guess he just assumed I was a liar... Good luck taking charge of what doctors can't be trusted with... Craig
  8. Ozzy69, I have also experienced this feeling of deadness in my arms at night. I found vitamin B6 (taken with food) to be helpful. Lack of vitamin B12 (pernicious anemia) can also cause neuropathic symptoms. Good Luck, Craig
  9. Procardia (also called Nifedipine) has helped many people with Raynaud's. There are many other drugs that have been found useful. When I was having a very serious Raynaud's problem (following a stem cell transplant for lymphoma), Procardia alone helped, but not enough. My rheumatologist added Prazosin (Mini-press) (an alpha blocker) which greatly improved things. There are many other drugs that have been used with success by members of this forum (nitro cream, Revatio (Viagra), Cialis, and others. You might want to search elsewhere on this sight. Drugs that work for some don't always work for others. Doctors can be very uninformed about this disease. You might want to see a scleroderma specialist. Otherwise you may be like so many of us who have spent years wandering in the wilderness, without a decent diagnosis or treatment, whether it is scleroderma or some other cause. There are many other blood tests for these diseases. Most doctors don't get much beyond the ANA test. More effective are tests that check for specific autoantibodies for certain autoimmiune diseases (note: autoimmune diseases are caused by your body making antibodies that go after it's own tissue, and these can be detected). Good Luck, Craig
  10. Many doctors are hesitant to prescribe vasodilators because they lower blood pressure. You can get good automatic blood pressure testing machines at most any pharmacy / drug store. My doctor was much happier to know that I was checking my pressure regularly, and thus more likely to provide the prescription. You should be careful to note if you tend to pass out when standing up quickly, as that can be a symptom of low blood pressure. It's a good thing to do anyway, since a rapid change in blood pressure (especially upward) can be very dangerous with scleroderma (and even without scleroderma...) if not attended to. Good Luck, Craig
  11. Some of the things that you mention are definitely possible symptoms of scleroderma. You should find a scleroderma specialist (see listings on this website). Most doctors (and even some rheumatologists) are clueless about scleroderma. There are several good tests for autoimmune diseases. The lab order that I get from my rheumatologist says "Lupus Analyzer Panel". It tests for many specific autoantibodies and is very specific for these diseases (not just Lupus). Don't let them get away with just an ANA test (though this is useful). Another interesting (and inexpensive) blood number to know is your "sed rate" or "ESR" (erythrocyte sedimentation rate). It is a non-specific test for inflammation which means that if it indicates inflammation, it could be from anything - the flu, cancer, arthritis, etc.). It commonly hovers above normal for those with these diseases. Even though non-specific, it's a good way to know if you have inflammation issues. Good Luck, Craig
  12. I have peripheral neuropathy that was caused by high-dose chemotherapy for a stem-cell transplant for lymphoma, coupled with scleroderma (it was supposed to go away, but the scleroderma probably had something to do with its staying. Most of the time it is merely numb, and other times rather painful (especially when trying to get to sleep). Vitamin B6 seems to help, and possibly B12. I've never heard of a blood test for this condition. I believe it has something to do with damaged nerves, so a chemical (easily told from blood test) basis doesn't look likely. It is quite common among diabetics. It's very true what you say about needing to see where your feet are! I avoid driving cars with clutches because of the difficulty knowing where my feet are (I have an old utilty van, and I have to look down at my feet if I drive it!). Craig
  13. I am researching disbability. My lawyer thinks that I have more than enough to qualify. (and be better off financially). My biggest concern, however, is health insurance. The cost of my prescriptions is greater than my salary. Is there a way to get reasonably priced medical insurance that would cover obvious pre-existing conditions? I know group insurance can be extended 18 - 36 months through Cobra, but then what? Does something else kick in, like Medicare for those over 65. Is there any help to be had through HIPPAA? I'm afraid that disability may not be a viable alternative without sufficient health insurance. Any thoughts?, publications that I ought to be reading or...? Thanks Craig
  14. I agree with Shelley. You can expect your local doctor to be clueless. Don't even expect rheumatologist to be up on the latest treatments. There are more tests than the auto-centromere and ANA. There is a panel of tests that look for specific autoantibodies for these diseases. There are antibodies for scleroderma, Sjogren's, Lupus, etc. that the test may indicate. Good Luck, Craig
  15. Leslie, My rheumatologist had me on Nifedepine only - and I did an internet search of "vasodilators" and took the list to her! -asked her which of these we might try, and got my prescription for Prazosin. Sometimes you just have to take over. The doctors don't "feel your pain" (like some phoney politicians), so they often aren't as motivated. Craig
  16. Do you know if your blood test include a panel that would check for autoantibodies? It would seem very strange to have your symptoms and not have any positive autoantibody test for autoimmune disease. Craig
  17. Joe's glacier analogy may ring very true for the diffuse form, however the limited systemic form can be very slow and insidious, with earliest symptoms minor enough to ignore or deny. Craig
  18. To further add to the confusion: wouldn't the "s" at the end also be silent if one is to use French pronunciation? That would be "RAY-no". If there is a following word that begins with a vowel, the s would begin that word, like "Etas Unis" (United States) is pronounced "ay-TAH zu-NEE". Which is why I never care if such a word is spoken with English pronunciation, since we do that with most every other language ("Moscow" doesn't come close to how a Russian would pronounce it). Thus "RAY-nodes", "RAY-nodds", "ray-NODES", or "ray-NODDS"all work, much as most English speakers pronounce the "s" in Paris. This thread may need to be moved to a forum on linguistic philosophy... Craig
  19. There are many useful medications that can help Raynaud's by increasing peripheral circulation. It does not sound as though you are using any of these. Revatio (Viagra), Cialis, Nifepine (Adalat, and other calcium channel blockers), Prazosin, Nitro cream, and others have all helped users on this sight. Different drugs work for different people. Your suffering might be greatly reduced. Check out this website for members' experience. I was greatly helped by Adalat and Prazosin when going through a bad time when all my fingers were bandaged with ulcers. Craig
  20. Has your rheumatologist run a test for auto-antibodies? This test can indicate if he has the Sjogren's auto-antibodies, as well as tell about other autoimmune conditions. The lab order from my rheumatologist says "Lupus analyzer panel", but refers to much more than lupus. There is also a test of tears in the eyes (Shimmer Test, or something like that). Little strips of paper are placed just under the lower eyelids. The ability of the eyes to make tears is guaged by the amount absorbed by the paper, and helps with the diagnosis. Craig
  21. After dealing with this disease and it's secondary effects for 31 years, my greatest recommendation is that you be sure that you are seeing a scleroderma expert - preferably associated with a major medical institution. It's amazing how little most doctors (sometimes rheumatologist!) know about this disease. You may be able to find out a great deal about medication options. Methotrexate sounds like a fairly strong drug for limited sclero, but I am no doctor and every case is different. You will want to be very wary about steroids, which can do wonders for inflammation, but can have dreadful side effects. There is a common, inexpensive blood test for inflammation called the Erythrocyte Sedimentation Rate (ESR or Sed Rate). Unfortunately it is non-specific (indicates inflammation from any source - flu, arthritis, cancer). This test can be very useful to determine if inflammation is going on - and inflammation can definitely leave you with pain and fatigue. The higher the numbers above normal, the worse you feel. I've experienced exactly the sort of issues your son has complained of. I've become so accustomed that I can make a very good guess of my sed rate based on how I feel! Good Luck, Craig
  22. I agree with Snowbird. Those who I've met with diffuse generally begin feeling quite ill, with quick progression to skin involvement. I have limited which started out as Raynauds with a single finger ulcer (age 22). So for about the first twenty years, it was mainly a matter of keeping my hands warm. About age 41, I took up swimming and noticed that, even after several months of training, I had to stop periodically for breath, while people in much worse shape kept swimming. I also noticed this effect when hiking. I never would have noticed the problem, had I not been exercising vigorously. (It took years to get a decent diagnosis - but that's another story). A little later I developed Sjogren's, which was mainly manifested by dry mouth, especially when breathing hard. I guess my point is just how slow and insidious the limited kind can be - in contrast with the diffuse form, perhaps. My father also had limited scleroderma, and wasn't diagnosed until he was in his fifties, and that because of kidney failure. As children we were told that my father had cold hands because he smoked, and indigestion because of a hiatal hernia. Craig
  23. One of the main lessons I learned from getting together with the local sclero meeting was that almost every case is different. Mine is CREST without the "E", but with Sjogren's and lung complications, after 31 years. Never had heartburn in my life! Craig
  24. I've had limited success with laser treatment for telangiectasias. They are definitely less noticeable. The doctor uses a laser that is focused on the exact area, and looks sort of like a pen. It is more commonly used to treat caplillaries that come to the surface with age. It is very rare for any doctor to treat this - mine was the only case he had ever seen. You will probably know much more about telangiectasias than he/she will! I went for three treatments. We found it was necessary to use a rather high setting for the laser, since telangiectasias are more difficult (your doctor probably won't know this). I would not want to get anyone overly hopeful, since these sort of things can work different for different people. Also, I'm a 53 year old man, so I'm not all that demanding! (five years ago, when undergoing cancer treatment, I was quite happy to lose [what little was left of] my hair - one less thing to worry about!) If interested, I can provide the website of my doctor. Since it is unlikely that others would be living nearby, they probably would not see him - but the site has information on he type of equipment he uses, which might be helpful tracking down a doctor. Craig
  25. I've taken Nifedepine and Adalat (a closely related drug) at different times times for Raynaud's. Both were somewhat helpful, though I developed an unpleasant side effect after taking it for an extended period (not a blood pressure problem). I found Prazosin slightly more effective. This site is full of information on drugs used to treat Raynaud's - and there is quite a wide variance in the effectiveness of different drugs for different people. You might search some old threads for this information. I am surprised to hear of Plavix used for this. Since I have a history of blood clots in my legs, I asked my internist (who is also a cardiologist) about Plavix. He said that it only helps with clots in the heart (which explains why it isn't advertised for other uses, such as DVT). Since most drugs that increase circulation tend to lower blood pressure, It is wise to keep track of blood pressure, and to be especially wary should you feel faint upon rising. Simple automatic blood pressure machines can be purchased at department stores or pharmacies. These can be helpful, since some doctors are hesitant to prescribe these drugs for fear of BP going to low. Craig