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Posts posted by CraigR

  1. My white count is about 3.0, and has been that way since I had a stem cell transplant for lymphoma 5 years ago. It does not seem to be a problem. No infection problems - and it rises when needed by the body (such as when I had hip replacement surgery) Red count (hemoglobin) is about 10.2, which is somewhat anemic, and a much bigger problem when combined with pulmonary hypertension. (both conditions cause shortness of breath. When I was on epogen (procrit) to increase my hemoglobin to about 14, I had much less trouble with shortness of breath). Unfortunately, procrit is not generally given when hemoglobin is above 10.



  2. U.S. Social Security does not allow for partial disability - but I think that you can make a fairly small income and still qualify when taking full disability. You might try entering "social security disability" into a search engine. You will find the information. The states probably have different rules. Some employers have additional disability insurance.


    I've got a similar situation. I've recently gone down to working part-time, by mutual agreement with my employer. However, I need to research the partial disability issue, because there's no way that I can work full-time.



  3. Have you had a diagnosis? Sounds like you haven't. If it never goes away, it could be peripheral neuropathy. It it comes and goes, it's probably some sort of neuralgia (?). I've had trouble with both.


    Some help might be had: avoid caffeine, chocolate and concentrated sugar. Vitamin B6 might also be helpful. That's helped me avoid getting these attacks during the night.



  4. Hello All,


    Recently my employer cut me back to half of full-time hours (they are in a bad way financially). I was given the choice of a reduced full-time wage rate, or part -time (but keep all benefits). Needless to say, I jumped at the chance to go to part-time and keep benefits (they were surprised - they were expecting a difficult discussion). I had been giving disability a lot of thought lately - spending most of my weekends in bed with fatigue, constantly short of breath, difficulty walking, etc. I've always been skeptical of "entitlement" programs - what with having spent years in management and seeing many instances where the only disability was laziness.


    This was my first week on the part-time schedule and I feel like a person again! Able to get a little more done then a quick weekend trip to the store and back in bed!


    But the issue regards going to part-time. If, at a later date, I must take complete disability, will the payment be based on my lower part-time earnings? If that's the case, should I put in for some sort of partial disability now? Could I do this now to supplement my reduced earnings?.


    I know that Social Security does not accept partial disability, and I like wroking part-time. But there are state (Ca) programs that may. Also, I have long term disability insurance through work at 66.6% of my salary (less any government benefits).


    Friends say I'm crazy to be skeptical - that if anyone should be on disability it's me.


    Anyone been in a similar situation? Any advice?






    CREST (CRST) since 1977

    Sjogren's since 1999

    Burkitt's Lymphoma in 2002, culminating in autologous stem cell transplant in Jan, 2003. (cancer seems in permanent remission [it is such an aggressive form that it is usually back in 6 - 8 weeks if not wiped out], but treatment left me with much worse sclero symptoms and peripheral neuropathy in my feet).

    Secondary Pulmonary Hypertension, 2005

    Complete right hip replacement, 2005

  5. I frequently get the same feeling. It usually starts in the left shoulder and spreads. Sometimes it's so bad that it is painful to breathe. Stress (physical or mental) seems to precipitate it.


    I find that acetaminophen helps (I can't take the NSAIDS because I take blood thinner), and a prescription pain killer (prescribed for peripheral neuropathy) is temporarily increased.



  6. To add yet another negative regarding Prednisone: It can make you feel very good and energetic when you are actually in bad shape.


    When I took it 8 years ago for a strange all-over body inflammation (scleroderma related), I felt so good that I became very active (which included felling 90 foot eucalyptus trees!). Needless to say, I got even sicker.



  7. Steroids are definitely known to increase the appetite. The "puffy face" is the result of Cushing's syndrome, a hormonal issue. Steroids can also tend to cause diabetes and bone problems. The main side effect I had was a very short temper. Some people get sort of obsessive - like they want to clean the whole house with a toothbrush. My doctor said "that's just steroid madness". Probably similar to the rage that some athletes get when taking anabolic (muscle building) steroids. By the way, prednisone is a "catabolic" (muscle reducing) steroid.



  8. Caffeine is also a vasoconstrictor, as is the theobromine in chocolate. Thus both will exacerbate Raynaud's. A strong dose of chocolate will cause terrible Raynaud's for me, but smaller quantities don't seem to bother me.



  9. Are you taking any medication for Raynauds? I've had CREST (CRST) for 31 years. First symptom was an ulcer on my right index finger. There are many meds - and each person seems to have different levels of success with different meds. Calcium channel blockers, Viagra, Cialis, Prazosin, Nitro cream. I never found nitro cream helpful - but calcium channel blockers and Prazosin were very helpful. Others have had the opposite experience.


    I've always found that Raynaud's attacks have more to do with my overall body warmth. If the core temperature drops, the body shunts blood away from the arms and legs (even when you don't have Raynaud's - it's just much worse with Raynaud's). Thus it is very important to keep your whole body warm, not just the hands. A cool drink with ice will bring on an attack, even if my hands are not especially cold. Even though I live in a warm climate (southern California), I always wear thermal undershirts in the cooler time of year. A ski cap on the head is also very helpful, since quite a bit of heat is lost through the head (perhaps a problem with a fancy hair-do, but not for an old bald guy like me).



  10. Be sure and read everything you can about side effects from Prednisone. It's a potentially dangerous drug, even though it does wonders for inflammation


    I had to have a complete right hip replacement due to an avascular necrosis in the hip that was attributed to prednisone traetment.



  11. I share the mixed feelings about filing for disability. Some times I feel great and can't imagine not working, and other times I wonder how I'll get through the day - and spend my entire weekends in bed. There would also be trouble with my own sense of self-worth, since that seems heavily tied in with my job (in my case, anyway).

    I'm reducing from full to part time, and keeping all my health benefits. How is health care taken care of when on full disability? Are there different rules in different states (not a problem, I presume, in countries with national health care).



  12. I also agree with Peanut - you definitely need a new doctor.


    I never got a decent diagnosis until I went to a major center that deals with pulmonary hypertension and related issues. You need a full work-up of lung function, probably an echocardiogram and possibly right heart catheterization.


    This is a subject that is notoriously misdiagnosed - even by pulmonolgists. It's also something that can be dealt with more effectively when diagnosed early.



  13. Sounds like you need a good pulmonologist - and one who is connected with a good center for pulmonary hypertension. A RH cath is the only way they can have any idea what your pulmonary pressure is. Sounds like your cardiologist is avoiding it because he isn't all that familiar.


    I've had three RH caths - no big deal. The worst part is the slight sting of the anesthetic. they then slide a little tube in the vein (in my case, near the groin) and up to your heart to get the pressure reading.


    The invasiveness seems minor compared with the potential seriousness of pulmonary hypertension.


    Good Luck,



  14. K,


    Mouth breathing at night can be a big problems with Sjogren's. I find that it is always worse when I sleep on my back (face up). My mouth is always better when sleeping on my side.


    The gum issue would worry me - I'd be afraid of choking if I fell asleep with gum in my mouth.


    Have you seen an ENT (Otolarnygologist)? You might be able to get some help with your nose breathing. Mouth breathing is a definite hindrance with Sjogren's.



  15. Do you have a good pulmonologist? I ask this because you can go through a lot trying to get a decent diagnosis from a non-specialist.


    My first PFTs were remarkable - 125 to 210% of expected. My primary care physician said that there was no way that I had a problem, and said that I must be breathless because I was out of shape (even though I was at ideal weight, walking a few miles every day, swimming vigorously 5 nights a week, and working in my yard...)


    Pulmonologist said that the high PFT figures pointed to a problem - that the body was overcompensating to get the O2 it needed. But he told me that it was so mild that I shouldn't notice it. My protest were met with the usual doctor arrogance, i.e., if your symptoms don't match the doctor's diagnosis, you must be delusional...


    I didn't get a good diagnosis until I went to one of the best centers for PH - UC San Diego. So be sure you're at a top center for PH treatment - since it's a rare disease.


    Echo can give them clues about the situation - but you really should find a good pulmonologist and get a right heart catheterization. This is the only way to truly find out you pulmonary blood pressure. I just had my third one last week. They insert a wire-like thing into a vein, and then up into the right side of the heart. Worst part is a little sting from the injection of local anesthetic. No big deal really.


    Good Luck



  16. Good point made by Shelley about thirst. I have Sjogren's and frequently wake up with a parched mouth, but not thirsty - so thirst could be something else. Dehydration (as well as many drugs) can cause a dry-mouth situation. If you haven't been tested, you should make sure that you have the Sjogren's autoanitbodies to ensure the diagnosis.


    My favorite thing to do if I wake up parched is to swish some special dry-mouth mouthwash (Biotene) around my mouth, then rinse with water and go back to bed. It leaves my mouth feeling much better than water alone.



  17. I get very itchy on my lower legs. Moisturizing creams help, but the only thing that works when it's really bad is a cream containing benzocaine.


    Oddly, it seems to get worse when I take baths rather than showers. Perhaps the soaking is more drying (?)



  18. I had a PICC for several months for treatment of chemotherapy for lymphoma. It had to be flushed regularly (I think daily) with saline.


    I got used to it with time. I took a tube sock and cut the toe out to use as a a protector for the line (in the upper arm).


    Later I had a larger central line put in for a stem cell transplant.



  19. I took Rituxan for the treatment of lymphoma five years ago.

    I didn't notice any bad side effects - especially in comparison with the nasty chemotherapy drugs that make you so sick. But these things effect everyone a little differently...


    Good luck,



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