Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Posts posted by CraigR

  1. Smanda,


    You and Shelley have touched on a subject where I had some very peculiar experiences and difficulty getting a diagnosis.


    Several years ago I took up swimming. After about six months of vigorous swimming, 5 or 6 nights a week, I noticed that I had to stop occasionally to catch my breath, while others in obviously worse condition kept right on swimming. I also noticed a similar effect when hiking.


    I took a simple spirometry test (blowing into a device shaped like a gun), and had values of 120% to 190% of expected normals - outstanding! The doctor said I didn't have a problem (isn't it fun when a doctor calls you a liar?).


    I sought out a specialist and discovered that my "supranormal values" were a sign of lung disease! Apparently, when faced with difficulty, along with a great deal of exercise, the lungs compensate, and this is what happened to me. I think this is what Shelley mentions as "how well the lungs have otherwise compensated for it".


    It seemed obvious to me that, though I was moving plenty of air, I wasn't making good use of it. The test for this is called "diffusion", and measures the amount of oxygen that the lungs absorb. My value was 64%! So now we knew there was a problem.


    But I was told that I had mild pulmonary fibrosis - not enough to account for my breathlessness. It took another specialist to correctly diagnose pulmonary hypertension - not fibrosis.


    So be sure you know your "diffusion" value! For me, it has been the only PFT value that was truly useful, and the hardest to get, since it is not part of the very simple test.



  2. I tend to have this problem, with hands/arms "falling asleep" too easily. I have found it helpful to take a vitamin B6 supplement. It also seems to help with peripheral neuropathy in my feet (left over from cancer treatment). In that case, it was recommended by my oncologist.



  3. I've had termors since I was a teenager. I'm told it is "essential tremor" (which basically means they don't know why... but it might be hereditary). I suspect that it might be related to a drug that I started about that time. It gets worse if I'm hungry, suggesting low blood sugar.


    Regarding your doctor's mention of "postural" tremors. I don't know exactly what that means, but I was told that I have "intention tremors" (sounds the same as postural), which means that the tremor occurs when the muscle is put into action, such as when you lift your hand, or reach for something. This is in contrast with "rest tremor", which (obviously) occurs at rest, like when your arm is resting at your side. Parkinsonism is associated with "rest tremor", I am told. This may be why your doctor excludes Parkinson's. I am not a doctor, but this is what I have heard. There is medication that can help, should it be disabling.



  4. There has been some very interesting research on Vitamin D by the University of California, San Diego. I saw a fascinating TV show put out by the university. Mainly pertains to cancer and diabetes. If interested, try entering "UCSD Vitamin D". Many sites should come up about the subject.



  5. As has been mentioned, this disease effects people differently. I know a person who was diagnosed 47 years ago and recently turned 90.


    Lung capacity can be very confusing. Sometimes very high lung capacity can even indicate disease. This was my case. I had numbers around 135%. I was told that this was because I was getting a lot of exercise, and the body was increasing air capacity to make up for the lack of absorbtion of oxygen (diffusion), and that it is not uncommon. Also, the numbers can change substantially from one test to the next (as is often the case with medical tests), so it may be good to get another test, especially a while after having quit smoking.


    One of the most important tests is lung diffusion. This is a test of the lungs ability to extract oxygen from the air, and is one of the best indicators. This test might not be done with a simple test of capacity. It was the kicker for me - I was moving lots of air, but only absorbing 64% of the oxygen that I should have.


    Also, I passed an echo test just fine, but was later diagnosed with pulmonary hypertension through a right heart catheterization.


    In summary, with this disease you really must spend a lot of time being your own doctor. It is often poorly understood by doctors who don't specialize in scleroderma. My general practitioner first told me that I was just "out of shape" - even though I was exercising vigorously (and told him so - so he was calling me a liar). Keep looking when doctors don't seem helpful or contradict your obvious experience.



  6. This disease effects everyone so uniquely. Obviously you have plenty of energy, and CREST is the slower onset type of scleroderma.


    I had my first symptoms at age 22 (32 years ago!), and, other than cold hands and the occasional finger ulcer, there was little effect.


    The one recommendation that I would give would be to be aware of how you feel and don't push yourself too hard. The "No pain, no gain" approach to physical activity is bad for this disease. Though you may have the ability to keep up with the gang, remember that your body is probably more vulnerable.



  7. Betty,


    You should be able to find Biotene toothpaste and mouthwash at any good drug store. I have always been able to get it at a major discount store. I have found both to be very helpful.


    Your rheumtologist should be able to do a Schirmer(sp?) test. It is a simple test where a piece if paper is set just under the lower eyelid. It measures the amount of liquid that it can absorb from the eye. It is a good indicator. Lip biopsies can also be done, though I've never had that.


    I take Evoxac before going to bed, since that's when I have the greatest trouble. No side effects noticed.


    I also like to keep a glass of water nearby to sip on. Saliva does a lot for keeping the mouth clean. I figure that if I regularly sip water to help clean out my mouth, it should be helpful. That, along with occasional use of the special mouthwash (especially when I wake up with a parched and sore mouth), seem to help reduce inflammation.



  8. I agree with the others that you should not get too carried away with some of the things you can read about. This is a disease that seems to effect many people differently. I was diagnosed with "CREST" (slow-onset or limited scleroderma, but still systemic) 32 years ago. There is a woman in our local support group that was diagnosed in 1962 and recently celebrated her 90th birthday.


    It's very important that you find a good rheumatologist with a good background in this disease. This website has listings of various sclero experts. Many doctors are ill-informed about this disease.


    Best of Luck,



  9. I get this type of pain. I consider it to be an attack of myalgia (muscle inflammation). Usually there is a physical or mental stress situation that seems to bring it on. Generally starts in the neck and works down. The pain is somewhat like muscles that have been extremely overworked and thus very painful When it's in the chest/belly area, it can be painful to cough - or even laugh, and very difficult to find a comfortable sleeping position. Usually there is also general fatigue. If tested, my SED rate is always elevated - usually over 70 (I've gotten so I can guess my SED rate by how I feel).


    Fibromyalgia has been suggested, but I thought (and this may be wrong) that this could not be the case because bloodwork is normal with Fibro (one of the reasons that in early days some doctors considered it an imaginary illness). Many doctors don't seem to recognize the myalgia issue with sclero - but many with the disease know otherwise!


    Acetaminophen seems to help somewhat. Caffeine (one cup of coffee in the morning) can also be helpful - though the extra activity it allows/encourages ultimately seem to slow the healing process (worse the next day). Caffeine is otherwise to be avoided - especially with Raynaud's.


    NSAIDS (aspirin, naproxen, etc.) would probably be helpful, but I can't take them because I take blood thinner. Rest and avoidance of stress are imperative. Good, uninterupted sleep also seem helpful.


    Years ago, for a really terrible attack, I took Prednisone (a steroid) - and it work like a miracle - but at a great cost. I (and my doctor) believe it caused an avascular necrosis in my hip, requiring a complete hip replacement (not fun). Also contributed to osteoporosis, which is otherwise not present in my family.


    Some have had success with Plaquenil for fatigue - I wonder if it has helped myalgia?


    Also, some members report help with inflammation from fish oil. Anything that reduces inflammation levels should helpful - especially if they avoid the dangers of steroids.



  10. I have a similar problem, but it came about after a stem cell transplant for lymphoma 6 years ago.


    In my case, my hemoglobin values never came all the way up to normal after the transplant. The doctors said it probably had something to do with that "CREST/scleroderma thing". Combine this with pulmonary hypertension, and it pretty hard to walk up a hill!


    There is a drug called Procrit (generally used in Cancer therapy to help the bone marrow make red blood cells). It is a weekly subcutaneous (shallow, into the fat tissue, generally at the belly; minimal pain) injection. I give then to myself (got used to that with the cancer therapy). I take 40,000 units weekly. It raises my hemoglobin to normal values. Makes for a terrific improvement in energy.


    The big problem is that it's very expensive (imagine that!). It's sort of tricky to get approval from your insurance company. Some may not approve it at all. My rheumatologist sent me to an oncologist/hematologist to prescribe it based on the anemia accompanying an inflammatory disease. As you can see - you must have the right kind of doctor, along with the right condition. Good luck - it does wonders for me.



  11. A good rheumatologist - familiar with scleroderma, should get you a blood work up of autoantibodies. These can help a great deal with diagnosis of various autoimmune diseases.


    There are specific autoantibodies for Sjogren's that can show up in these tests. However, there is always the chance that you may get a false negative. That makes it wise to get routine testing if you are at risk. I've been tested many times. I'm almost always positive for Sjogren's (and have obvious symptoms), but there has been the occasional negative.


    Good luck,



  12. Thank you for your responses. I guess I will call the local Social Security office.


    My main concern was to keep working until sure that I could qualify. Some people don't go to work with a hangnail, and others drag themselves in, even if near death. I am more the latter type, and have gotten to the point of being sick too often.


    I did hear about scleroderma getting "upgraded" for special concern with SS. I read that this is especially true when there is an additional complication. Since I also have pulmonary hypertension, peripheral neuropathy and Sjogren's, it seems that I would qualify.



  13. You will no doubt discover that there are many forms of Non-Hodgkins lymphoma. Some are very fast growing and some slow.


    I had Burkitt's lymphoma in 2002, treated with chemo. It is the fastest growing of all lymphomas, but responds to chemotherapy. My doctor told me that lymphoma is "associated" with autoimmune disease, though they are usually low-grade lymphomas, not the type I had. You can probably find more information on this site.


    The doctors (or nurses, since they are more communicative) can probably tell you what to expect of the chemotherapy. Different chemo drugs have different effects, and, of course, different people react differently. I found Cytoxan to be one of the mildest drugs.


    There are different chemo regimens for different types of lymphoma, so you will probably want to get involved with the various treatments. I echo the recommendation of a good specialist - for both sclero and lymphoma.


    Good Luck,



  14. Once again I'm investigating this issue...


    My concern regards the sequence of events for qualifying.


    From other posts I've gotten the notion that some continue to work because they cannot be approved for disability. It sounds as though they don't want to risk leaving a work situation unless they can be sure of disability approval.


    Recently an attorney told me that I must not be working (or at least making less than the Social Security minimum) to even be considered. Thus I must cast adrift, losing all possible benefits of my employment, for the chance of being approved. If this is true, then the previous paragraph would be a misunderstanding.


    Last year another lawyer told me that my chances would be very good based on my medical history - CREST scleroderma with Sjogren's, pulmonary hypertension, peripheral neuropathy (requiring that I walk with a cane), fatigue, myalgia, osteoporosis, lumbago and sciatica.


    Is it true that one must stop working altogether for consideration of Social Security disability?



  15. Sounds like you're doing just about all you can.


    The only other thing to consider is whether any drugs that you might be taking contribute to the dryness (many drugs list dry mouth -and presumably eyes - as a side effect). Also, caffeine tends to make dryness worse.


    You might ask your doctor about the drugs Evoxac and Salagen which have helped some people.



  16. Seems like the ADA Act attorneys haven't gotten to this organization yet! Perhaps an opportunity (just kidding...).


    There must be someone higher up with a bit more compassion for the disabled and a little better understanding of the law.




    You might add a thermal undershirt (though I have no idea if they have these for women). I wear them half the year, and I live in southern California.




  17. Distraction works great during the day - but not much help when trying to get to sleep. Pets can be a good means of distraction. Taking care of my little doxie girl keeps my mind off pain.


    I also find exercise helpful, as long as it is very light (otherwise it will cause myalgia), and not jarring. Light swimming is the best. Unfortunately most pools are too cold for someone with sclero.


    Some pain (peripheral neuropathy of the feet, in particular) tends to be worse after a lot of sugar. I notice this pain is worse when I have a big bowl of ice cream before bed. But that might just be me.



  18. I've had secondary PH for at least 15 years, and have been taking medication for 3 years. It has yet to effect my heart. Some forms are very dangerous when the levels are very elevated.


    I've had 2 right heart catheterizations. No big deal. I can't imagine why your doctor doesn't want you to have this done. The minute my doctors thought the echo could indicate PH, they set up he RHC. It's the only way to be sure.


    I was lucky to be near one of the top centers for PH in the world. I'm sorry you're having trouble finding an expert - but keep trying - perhaps a university with this as part of their program? - or somehow, get another opinion, preferably from a pulmonologist with a good background in PH. Fight, fight, fight - it's the only way with this disease and the medical establishment.



  19. I had a stem cell transplant in January, 2003. It was the autologous type (where they give you back your own cells), which I believe is the type done for scleroderma. Mine was for lymphoma, however, not scleroderma.


    I don't have the diffuse type, but rather the "CREST" (CRST) type (since 1977), with Raynaud's and some lung involvement, fatigue, and secondary Sjogren's as the main symptoms.


    For a while afterward the Raynaud's seemed less intense. However, about 9 or 10 months after the transplant I had the worst Raynaud's attacks ever. All my fingers were bandaged. I found some relief with Adalat (calcium channel blocker) and Prazosin (alpha blocker). It has since relented, and my Raynaud's is no longer severe enough to require medication.


    Craig R

  20. With a disease like this you're on your own. Your doctor does not live in your body. Such dogmatic doctors are often foolishly close-minded. Many times new knowledge has proven the old dogma to be nonsense.


    And in addition - how can they claim to be so knowledgeable about a disease that seems to manifest differently in each case?


    Years ago a doctor told me that there was no possible genetic cause of scleroderma - yet my father had the disease!


    4 years ago I was hospitalized with raging pulmonary hypertension, at one of the top centers in the U.S. for treating PH. After two weeks it went away, or rather, back to my normal, mild PH, and I could breathe just fine. The doctors insisted that it was impossible - like they were mad at me for contradicting their knowledge. I found it hysterical!


    The ESR (Erythrocyte Sedimentation Rate, "Sed Rate") is a common, low cost blood test for non-specific inflammation. Should be under 20, I believe, but your "normal" may be higher with scleroderma, Sjogren's, etc. (mine is about 40). Funny how, for me, it spikes way up to about 80 when I'm having what seems to be a "flare", and they can find no other cause.

    My main symptoms are fatigue and myalgia.


    I recommend tracking your sed rate with how you feel. It can give you some insight into your state of inflammation. Since it is non-specific it can detect inflammation from anything (arthritis, influenza, cancer, etc.), but can be a useful window for those of us with inflammatory diseases.



  21. As Karen says, Hydrochlorothiazide is a water pill, or diuretic. It is often prescribed for edema, or water retention, to get rid of the water and reduce blood pressure. However, please bear in mind that I am not a doctor. You might want to find out from your doctor if you have edema, as it can possibly signal issues with other organs, such as the heart and kidneys. The tests that Shennen mentions can signal kidney function. Any time it is tested, I always want to know my creatinine level, since it is linked with kidney health.


    Something to keep in mind is that many of the drugs used to help with Raynaud's by dilating the veins can also have a tendency to lower blood pressure. Thus you can get a two for one effect. But they do not address the edema issue.



  22. Is the doctor that you are going to see a rheumatologist?


    Scleroderma is a rare disease that is usually poorly understood by doctors who are not rheumatologists. Even some rheumatologists do not deal with much scleroderma.


    A scleroderma specialist is your best bet. This website can help you find one.


    There many ways that a doctor who is an expert in scleroderma can be helpful. Please be sure that your doctor is an expert.


    Good luck,



  23. I've had the hands/arms falling asleep problem for many years. It is always worse when I'm using them a lot.


    I thought that Vitamin B6 supplements helped, though I am not a doctor. However, a doctor recommended B6 to me for neuropathy.



  24. JohnJ,


    I probably thought most of you with my original posting. You are so accustomed to using your hands (as I was with piano rebuilding), and it is so hard to change habits. I find that not only obvious trauma, but any kind of repeated tensing of the hand muscles always made the attacks worse.


    Regarding Tracleer: It's my understanding that it is mainly approved for pulmonary hypertension, so it may be very difficult to get it for anything else. Also, it is very expensive, so some insurers may not cover it. I was told that one of the reasons I got quick approval was because I was being treated by a major center for PH. Some on folks on government that I know can't get it because it isn't covered.


    Are you taking or have you considered?:

    Nitro cream

    Calcium channel blockers (Nifedipine, Adalat)

    Prazosin (minipress)

    Revatio (Same as Viagra, but smaller dose and also expensive)



    These and others have been helpful to forum members.


    And be sure you keep your core temperature up. During one of my worst times I was helped by keeping quite warm, perhaps a little warmer than I considered comfortable. Like Mary says, you must pamper your hands.



  25. I have Sjogren's, so I definitely have dry eyes, In my case, dry mouth is much more noticeable - especially upon exertion.


    I cannot eat dry toast, crackers, etc., without a glass of water. That is one of my most obvious symptoms.


    My first knowledge of dry eyes came from an optometrist who told me that I had an unusual lack of tear flow in my eyes - even before I had noticed the symptoms.


    Many drugs cause dry eyes/mouth, so that's also a possibility.


    Joint aches can also be a sclero symptom. I have little of that, but quite a lot of myalgia (pain/inflammation of muscle) from sclero/Sjogren's.



  • Create New...