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Posts posted by CraigR

  1. Another thing that is sometimes recommended is a device that pumps little jets of water wherever you direct it, and is supposed to help.


    I recently got one. My biggest problem with it is that it seems to cause a gag reflex, especially toward the back teeth.



  2. Are you aware of any of the Biotene products for dry mouth? They toothpastes especially formulated for dry mouth (Sjogren's), as well as mouthwash. When I wake up in the middle of the night (and of course, my mouth is as dry as the Sahara), I swish around some of that mouthwash and it is a great help.


    Sensodyne also makes some similar products under the Oasis name. The mouthwash sort of burns my mouth. I do, however, like their little spray bottle of artificial saliva.



  3. Your doctor's "yup, it's progressing" attitude sounds pathetic. As other's have mentioned, you need to find a scleroderma specialist. You might also find a top facility for treating pulmonary symptoms. Recently there have been great new treatments for Secondary Pulmonary Hypertension. A good facility will do a right heart catheterization for diagnoses, and possibly put you on one of the new drugs such as Tracleer (Bosentan).


    As mentioned above, there are many treatments for Raynauds. I had a horrible bout with it after a stem cell transplant for lymphoma. Adalat (a calcium channel blocker) and especially Mini-press (Prazosin) helped a lot. I've never had much luck with nitro cream, but others have. Some get relief from Viagra or Cialis. Different drugs work for different people, so you should be able to get some relief.



  4. Wow. Two drugs mentioned that I hadn't associated with scleroderma. The old gout drug colchicine used for calcium deposits, and Plavix.

    Plavix is advertised to help prevent blockages/blood clots in the heart. Since I have a history of blood clots in my legs, I inquired of my internist (who is also a cardiologist) of its use for prevention of leg (DVT) blood clots. He said that it is only helpful for clots of he heart, not elsewhere. This explained why a search of the web could turn up no information on Plavix for DVT (obviously not approved - and you know that if it were they would let it be known! [increased sales opportunity]). But Plavix for Raynaud's - that's interesting.


    If you need help with Raynauds, don't forget Prazosin (minipress). It came up a while back on this forum with mixed reviews - two of us found it very helpful.



  5. Scleroderma can seem to vary quite a bit among patients. Then there's MCTD (Mixed Connective Tissue Disease) which is closely related.


    I was diagnosed (30 years ago) with CREST. However, if I were to use that terminology, it would have to be CRST, as I don't have esophogeal involvement. Over time, however, I've developed lung involvement.



  6. I would add that you may want to acquire a hygrometer. It measures the humidity in the room. They are usually available where other weather gadgets (barometers, for instance) are sold. You will be able to monitor just how dry the room is - especially when rooms are heated (as Sweet mentioned).


    A humidifier may also be helpful. They are usually available where kitchen appliances are sold, and inexpensive ones are available. You fill them with water. They blow air through the water, releasing it into the room. Can do wonders for getting through the night in a bedroom with dry, heated air.



  7. Sometimes we have to make the best decision for our parents, much as they did when we were children, and that may not be what they desire.


    My mother is in very nice assisted living facility for people with dementia. She frequently insists that she would like to go home - even says she has two cars in the parking lot, but needs someone to point them out, so she can drive home (??????????).


    Granted, your mother sounds far more coherent. Still, the best decision may be for her to take up residence in a good assisted living facilty. This doesn't mean abandonment - you will certainly see her. But you cannot let one person dictate conditions that, in the balance, will likely be hurtful to the physical and mental health of you and others in your family. Since you and your siblings seem to have the responsibility for her, you also must have the power to make the best decision for all.



  8. You don't mention any changes in drugs that you might be taking. Many pain medications are notorious for this. I find the usual suggestions to be helpful - fiber (bran cereal, fruit [like apples mentioned above], prune juice). Stool softener (colase?) might also be helpful.



  9. Two things that I would want to know when looking into this:


    Red blood count. If you are anemic, your heart rate tends to rise.


    Lung testing. You would want to have thorough testing in this area to see if there is any influence. Of course, most of us with scleroderma get this done because it is such a problem.



  10. I developed peripheral neuropathy in my feet after an autologous stem cell transplant to treat lymphoma. It was supposed to go away. The doctor seemed to think that the scleroderma was probably why it stayed.


    Neurontin and other pain meds seem to help. Never got much help from Elavil. It tends to get worse (goes from benign numbness to pain) when I eat something very sugary, such as a bowl of ice cream.


    It seems better when I take my vitamin supplements - but I have not pinned it down as to which supplement it might be. Vitamin B6 is said by some (including my oncologist) to help. Lack of vitamin B12 is sometimes said to cause neuropathy.



  11. I often have this problem.


    After spending quite a bit of time in hospital for lymphoma, I concluded that this is something of an art. Some nurses could fiddle around all day trying to find a vein, while others always found it on the first try. My level of anxiety was always a lot lower when the capable nurse/phlebotomist showed up!



  12. I take Coumadin along with Tracleer (and Neurontin [peripheral neuropathy], Prazosin [minipress], Evoxac [sjogren's] and another pain reliever for peripheral neuropathy. No stomach problems or other side effects. I take the Coumadin at night before bed.



  13. The whole sympathy thing is hard for me to understand. I prefer to keep my illnesses unknown to people who aren't very close (though difficult to do when out from work for year in treatment for cancer..). Why complicate things if you don't need to?


    I share the thought when I hear people complain - that I wish I only had their problems!


    I find that the best thing to do with a person who childishly solicites sympathy is to take an approach of helping them fix the problem. Pretty soon you won't hear from people who only want sympathy. Since this is my nature, I rarely hear from people who don't honestly want help.



  14. I got sores in my mouth while under treatment for Lymphoma and taking cyclophosphamide, but there were several other drugs, so, who knows.
    Fatigue - often, and when I least expect it. I had big plans for a Saturday not long ago, but ended up sleeping all day!
    Muscle issues come up on this board from time to time. Doctors I've spoken with don't seem to think that's related to scleroderma, but I think they are wrong. Too many have tight or painful muscles. I must stretch my leg muscles regularly, and I still don't have the range of motion of the average couch potato without sclero.

    The only thing that seems to help is being very careful not to overdo it or stress muscles. Prednisone helped one time when I had it very bad, but there are plenty of reasons to avoid that drug if at all possible.

    I've taken Effexor, and it didn't seem to cause more fatigue - but everyone's body is different.

    Hope you are feeling better,


  15. I have had great luck with minipress (prazosin), much better than with calcium channel blockers (which gave me an unpleasant side effect). Also, it is much less expensive than most other such drugs.


    It is an alpha blocker, which means that it increases peripheral circulation by suppressing the "fight or flight" (sympathetic?) nervous system. One of the causative theories behind Raynaud's is that the nervous system is too inclined toward the "fight or flight", where peripheral circulation is constricted.


    As with many peripheral dilators, it is also used as a medicine to reduce high blood pressure. Thus it can cause one to faint (especially when rising quickly). It is wise to periodically take one's blood pressure (always a good idea anyway, especially with scleroderma). Good automatic machines for this purpose can be found at pharmacies, drug stores, etc. You need to make sure your pressure doesn't get too low. The fact that you fainted tends to suggest that your peripheral cirulation is improving.


    About nine months after an autologous stem cell transplant for lymphoma, I had horrible Raynaud's, with all fingers ulcerated and bandaged. Adalat (a calcium channel blocker) helped a little, but adding the minipress did the job.


    It's not always easy to predict which drugs will work for particular individuals. Yesterday I had a routine appointment with my rheumatologist (in spite of the emergency situation - I live near San Diego!). She has great optimism for the Human Genome project, as it may allow doctors to clearly know which drugs will work best. Example: Methotrexate works for some cases of Rheumatoid Arthritis, but, if it works for one sibling, it almost always works for another, suggesting a genetic link.


    Good Luck,



  16. Some may want to try internet searches on "hearing hyperacusis" and "hearing recruitment". These are conditions that can involve hearing loss, tinnitus and lower level of sound causing pain.


    As for having difficulty understanding certain speech: I have a high frequency hearing loss and have this difficulty. I am convinced that this is because much of what differentiates spoken sound is in the higher frequencies. Take the word "speak" as an example: The "s", "p" and "k" sounds are all rather high pitched. To those of us with a high frequency hearing loss (one of the most common), the word sounds slurred, almost like "ea", or even just a short "i" sound, since the long "e" is rather high pitched. Add a slight bit of slurring, or a nasal voice, and it's hopeless.

    An example of nasality would be (if I'm allowed to use particular people) is the character of Karen on the Will & Grace TV show (Megan Mullaly). I cannot understand her even with the TV turned painfully loud. To the contrary, people who speak with strong or exagerrated pronunciation are easy to hear - even at a whisper.


    Severe tinnitus makes it worse, since it tends to drown out sounds at the same freqency, which is usually high.


    As for children - I've always noticed that parents tend to become deaf to the racket of children, as many become deaf to a nagging or complaining spouse!



  17. Sorry to hear about the lack of success. My treatments, though not breathtaking in the change, made for a definite improvement, especially the second time, when the doctor turned up the power a bit. Never any bruising, since the treatments were pin-pointed. But different skins can react differently...



  18. I have a hearing loss that I presume to be related to sclero or medication for it. I haven't been exposed to loud sounds much (didn't even listen to loud rock music in my younger days...)

    One evening a few years ago I fell asleep for a short period, then woke up with loud ringing (tinnitus). Since them I have a gradually worsening high frequency hearing loss. At the time, I was taking Plaquenil, which may have had something to do with it. There is also Hyperaccusis, which is a lowering of the threshhold when loud sounds become painful.

    Oddly, the hearing loss is not what I expected - I can still hear, but words tend to sound slurred, since many of the subtle elements that differentiate sounds are in the high frequencies. Nasal voices are almost impossible to understand, no matter how loud. People who speak just barely loud enough to be heard are very frustrating. I often wonder why their parents didn't remind them to speak up! I have hearing aids, and they help somewhat, but often not enough to hear like I used to, and they increase the problem of hyperaccusis.



  19. Hi Jennifer,


    Five years ago I had an autologous (you get your own stem cells back, not someone else, so no rejection issues) stem cell transplant for the treatment of Burkitt's Lymphoma. I did not see any permanent improvements in my CREST/scleroderma. In fact, the weakening that arose from the treatment made it worse (I was very weak about 3 months, largely bedridden - sort of like a much worse version of the dreadful feeling that chemotherapy causes). Also, about 9 months later my Raynauds got much worse - all fingers bandaged and much pain. This went away after a while. I am still much weaker and more prone to aches and pains that I associate with scleroderma than before.


    At the recommendation of Dr. Furst of UCLA, I spoke with someone at a major center that has a protocol for scleroderma stem cell transplantation (Sloan Kettering?). They told me that they only do it when the scleroderma is life-threatening. This is due to the high risk associated with the procedure. There is something like a 10 to 20% death rate.


    Also, I took quite a bit of Cytoxan during the cancer treatment (it is mainly a drug for treating cancer). I imagine that the dose was probably higher than for scleroderma. I would take a very close look at the side effects before taking any of these cancer drugs. Some of the others that I took (not Cytoxan) list leukemia as a possible side effect! ...but when you consider the alternative.


    26 years ago, my father (who also had CREST/scleroderma) was treated with Cytoxan and Prednisone for kidney failure and pulmonary fibrosis. It seemed to work. He did not end up on dialysis, and he was able to come off of oxygen.



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