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Posts posted by CraigR

  1. I've had Sjogren's for about 8 years - CREST (CRST) scleroderma for 30 years. I'm not unusually sensitive to odors - though I prefer plain fresh air to all of the fragrances with which people seem to pollute the air.


    I also use the special toothpaste for dry mouth, as well as the mouthwash. If I get up during the night, I frequently swish around some of the mouthwash. It seems to help with some of the soreness. I was taking Evoxac (which only seemed to help a little), but it seemed to cause itching, so I stopped.


    Also have some neuropathy in my feet - but that came from cancer treatment. I take some pain killers for it.



  2. I've had right heart cath done twice. The worse part is the injection of the anesthetic, which is just a slight sting. They make a small slit to slide the cath in (for me, they went in through the groin), all of which is painless. After bandaging, I was able to walk out. Not a big deal. I wouldn't worry. I'm getting another in 4 months, and it doesn't worry me!


    Best of luck,



  3. I hope the nitro helps. I did not find it very useful - but there are many good peripheral dilator medications - many mentioned on this forum. I've found nifedipine (adalat, procardia) helpful, as well as prazosin (minipress). Rheumatologists seldom seem to recommend prazosin, but I have found it to be the most helpful.


    These drugs tend to lower blood pressure. I got one of those automatic blood pressure devices (available at pharmacies and department stores) to make sure my pressure didn't go too low.



  4. I've had shingles twice. One of the times was during cancer therapy, so my immune system would have been weak.


    Be sure and get to the doctor, as there are anti-viral medications available that can cut the duration and pain.



  5. The thread on antiphospholid syndrome hit very close to me, due to a recent blood clot in my left leg, occuring in February of this year. The pain was so bad that I couldn't walk and I spent 3 weeks in a skilled nursing facility (rest home - what a nightmare).


    I had a blood clot in my right (other) leg 4 years ago during cancer therapy, and was put on coumadin. I was still on coumadin when I got the new clot! However, my blood level was likely below therapeutic level at the time (the dosage had recently been adjusted downward because the blood level was too high, but was now too low). I had also been bedridden for about two weeks with a bad respiratory infection and slight pneumonia, so I didn't get out to get my coumadin level checked. As you may be aware, lack of movement due to being bedridden also encourages blood clots.


    I had a PET scan for cancer, since it can cause blood clots in spite of coumadin therapy. Fortunately, that was negative. Also, I'm at my ideal weight (overweight can encourage blood clots)


    I did my own research and had my rheumatologist check me for antiphospholipid syndrome, which turned out negative, thank goodness (I don't need another disease!). But still no explanation of why the second clot. Blood flow is not great in my legs due to Raynauds.


    My doctor took me off coumadin and put me on lovenox (for life), which is an anticoagulant and a form of heparin, I believe. It is a twice daily subcutaneous injection in the belly. No big deal - and mostly painless.


    The leg seems to be back to normal, aside from some occasional mild swelling. Biggest problem is peripheral neuropathy in my feet, left over from cancer therapy.


    Regarding medications: In spite of it being injected, I prefer the lovenox to coumadin. My coumadin level always seemed to jump all over - too high then too low. I wouldn't want to take it again unless I could do my own routine checks, like diabetics do with their insulin level.




    CREST (CRST) since 1977

    Secondary Sjogrens - 2000

    Burkitt's Lymphoma with autologous stem cell transplant - 2002/2003

    Mild Pumonary Hypertension/Pulmonary Fibrosis

    Complete right hip replacement - 2005

  6. I agree with the others that you should see the pulmonologist.


    I had some lung trouble (not asthma) that was improperly diagnosed until I saw the specialist (pulmonologist), so this is an area where I have little confidence in anyone but the specialist.


    Some years ago I took up swimming - vigorously, for about 45 minutes 5 nights a week - and at my ideal weight. After about 6 months I could no longer understand why I needed to stop periodically to catch my breath, as people in much worse shape kept swimming. My primary care physician did some simple lung tests and said nothing was wrong - I was simply "Out of Shape" (after all that exercise???!!!!). Needless to say, the Pulmonologist diagnosed some mild lung fibrosis related to CREST.


    Good luck with the specialist,



  7. Very interesting that Plaquenil was mentioned regarding tinnitus. I have tinnitus that came on while I was taking Plaquenil for CREST. I can't think of anything else that could have caused it, as I haven't been exposed to loud sounds. There is also a high-frequency hearing loss.


    I also have become accustomed to it. At first I thought it would drive me crazy. I can go days at a time without even noticing it, but it is quite obvious if I think about it.



  8. I've had tingling, as well as occasional complete numbness. I've always figured it was related to CREST Scleroderma/Raynauds.


    I've seem to have gotten relief with B vitamins, especially B6. B6 is sometimes recommended for neuropathy, which seems like a related problem.



  9. Hi,


    I'm Craig, age 52 and live in Escondido (near San Diego), Ca. I work as a financial analyst at a local tourist attraction. I used to be Food Service Director for 20 years, but that was too physically challenging after severe health problems (Burkitt's Lymphoma and stem cell transplant) in 2002.


    No kids or wife - but I have two sisters, each with a grown boy and girl. One niece recently made a grandmother of my sister. Other sister lives north in the California wine country, which I love to visit, by way of the Big Sur coast.


    Interests are gardening (I have a new custom home built in 1 1/3 acres with about an acre of native plants, as well as fruit trees and roses) and restoration of old pneumatic player pianos. Many years ago I restored player pianos as a business. Still have about ten pianos, in various states of repair. I also love to read, especially since I don't get around as well as I used to.


    I live with my best friend Judith; also have a Cardigan Corgi and two cats.


    Diagnosed with CREST 30 years ago (actually CRST, since I don't have esophageal involvement) Raynauds was the worst problem until about ten years ago when I developed secondary Sjogren's. Then, in 2002, I came down with Burkitt's Lymphoma, a very aggressive cancer, which I seem to have beat (knock on wood...). However, the cancer treatment left me much weaker and with peripheral neuropathy in my feet.



  10. Hi Mary,


    Sorry to hear of your many difficulties.


    Regarding SED rate, if mine goes as high as 80 I usually feel so ill that I can hardly get out of bed - so I can't imagine 131! I hope they continue to monitor it, since it is a non-specific test (could go up for any kind of inflammation, even something as simple as a virus [though I'm not a doctor]).


    Warm thoughts and best of luck,



  11. I have some difficulty due to secondary Sjogren's Syndrome, not esophagus problems. I must have plenty of water unless the meal is very moist (soup or stew).


    I share Janey's sentiment about tipping waiters (as well as choosing retsaurants) by how well they keep my water glass full!



  12. I have been anemic since lymphoma treatment 4 years ago. During the treatment I took Procrit injections to bring up my red count. The anemia continued long after the cancer treatment. The doctor assumed this was due to scleroderma.


    The Procrit definitely increases the red count (hemoglobin) so that I am not anemic. It is an injection that I give myself once a week.


    Best of Luck,



  13. There are numerous helpful peripheral vasodilating drugs available. You should not have to go through such pain.


    I've had CRST with digital ulcers for 30 years - but never so bad as 9 months after a stem cell transplant for lymphoma. My rheumatologist put me on Adalat (a calcium channel blocker). When this wasn't enough, I searched the Net for vasodilators and brough a list to me rheumatologist. She decided Prazosin (Minipress) would be helpful, and, together, the two drugs worked wonders with the pain. Elsewhere in the forum you may find other members who've had success with other drugs.


    A side effect of these drugs is reduced blood pressure - so your doctor might be hesitant to prescribe them if your blood pressure is on the low side. To get around this, my doctor had me buy one of those automatic blood pressure devices that you can get at any pharmacy, to check daily.


    Good Luck,



  14. I went through a very similar procedure for the treatment of Burkitt's Lymphoma (UC San Diego Med Center).


    The pheresis catheter was quite annoying, but got better after a while. I had it for about 6 months.


    I got (or gave myself) neupogen (Neulasta) injections during the chemotherapy to encourage the growth of white blood cells. This because the chemo kills them all off, and neupogen helps to get them going and bring back the immune system.


    For the stem cell transplant, neupogen increases the number of stem cells so more can be harvested. Bone pain (mainly in the lower back, for me) is caused (I believe) by the bone marrow going into overdrive making white blood cells and their precursors. A narcotic pain med helped me wih this pain.


    As for the harvesting, it is somewhat like dialysis. Your blood goes into a machine by one tube and then back to your body through another. This went on for 5 or 6 hours on two days. I just sat there and watched TV, read, or slept. Not a big deal.


    The worst part was that it took a long time to get over it. I was exhausted for months.


    I didn't have radiation - just high-dose chemo.


    Good Luck,




    CRST Limited Scleroderma, diagnosed 1977

    Secondary Sjogren's

    Secondary Pulmonary Hypertension

  15. I'm Craig and I post ocassionally. I have CRST/Scleroderma, first symptoms (severe Raynauds) onset in 1977. I have some lung involvement, but no esophagus problems. Also have secondary Sjogren's, epilepsy (since 1970 - easily controlled). I went through a nasty bought with Burkitt's lymphoma in 2002.


    My father also had CREST/scleroderma. He developed severe lung problems in his 50s.


    Neither of my two sisters or my mother have had any automimmune diseases.


    As for environmental exposure, there were so many things years ago - my father was a very heavy smoker, so I was exposed to smoke. I worked on cars often, was exposed to furniture refinishing chemicals. As a child living in Okinawa, trucks regularly drove through the neighborhood spraying DDT to keep down the mosquito population. Now we are much more careful - but it doesn't seem to have reduced scleroderma.


    It might be interesting to find out more about the geographic incidence. I saw a documentary about asthma, where they noted that it almost never occurs among chidren brought up on farms. Might there be similar incidences of scleroderma?



  16. Another thing to keep in mind with allo transplants is that they usually cause graft-vs.-host disease, which can be quite difficult. I know a 12-year old who had an allo transplant for Leukemia (AML), and they've had quite a difficult time dealing with the GVH problems, so that must be kept in mind.


    I've heard that UCLA has a good program for this (or a doctor Furst who specializes in the procedure), but only for very severe, life-threatening scleroderma, since the risks are so great.


    I've suffered from CRST for 30 years, and 4 years ago had an auto stem cell transplant for Burkitt's Lymphoma. Of course, no GVH probelms with an auto transplant. However, there was one CRST symptom that occured about 9 months after the transplant: Raynaud's came on extremely aggressively, with all fingers ulcerated and very painful attacks- sort of like the hands had hundreds of pins going through them or were on fire. I'd previously had finger ulcers, but never with such intensity. Adalat and Prazosin brought it under control, and it has since remitted. The cancer has also gone into remission - essentially considered cured, since it an extremely aggressive cancer that returns in a matter of weeks if not eradicated.


    My experience with stem cell transplantation.



  17. I have had occasional problems with calcinosis on the fingers. Sometimes they would be very small for quite a while, not really causing a problem, then they would sometimes grow. It was very painful if they seemed to press on a nerve (the slightest touch would elicit extreme pain).


    I had a doctor (family practice) who removed them surgically. It was no big deal - and a lot better than being in pain. I would recommend only having one done at a time, since the recovery can sometimes be painful, and you don't want that going on in more than one place at a time.


    I didn't find calcinosis to be a precursor to finger ulcers - though sometimes ulcers were a precursor to calcinosis.




    CRST scleroderma since 1977.

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