Lupus FAQ

Question:

Hi Tina: Have you had a chest ex-ray lately? Do you have lower lobe pain? I had Pneumonia and it hurt like hell and they couldn’t see it on an ex-ray but when they did a cat scan they found it and it was bad!! Right lower lobe pneumonia!! I was in the hospital for over a week to try and fight it… Do you have any other symptoms? Fever? Are you coughing up anything? If so they might want to take a sample and haveit tested… Do you have a doctor’s appt. soon? Are you in a cold climate? Do you have the heater on? Maybe try a vaporizer in your bedroom while you sleep and see if that helps… I hope you get to feeling better soon!! Let us know how your doing, mary/az

  maryspeisr.vcf

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Response:

No slamming here…just concern for your breathing problem.  My grandfather smoked quite heavily for many years and subsequently also had serious problems with his lungs.  Granted he didn’t have lupus to contend with; however, I wanted to tell you that quitting smoking did bring about a very quick HUGE improvement in his respiratory function.  Of course, he had to do it the hard way back then.  These days, there are things that can help make it a lot easier.  I hope you’ll talk to your doctor about it give it a try. I sincerely hope things start looking up for you.  You’ve really had a rough time of things. Best wishes, Sandra

Response:

Hi, Earlier this month someone posted about new drs.’ in PA. Below is the info I posted in my reply. Of course I don’t know where in PA you live. Maybe this can help since you wish to find new drs.’ Also contact a lupus chapter in your area. Jefferson Hospital is affiliated with a chapter, they can provide that info. PART 1 Jefferson Hospital has a Lupus Center, in center City Philadelphia, Lupus Center. I was not aware of this until recently. I have heard these doctors are good.      Raphael DeHoratius, MD      Director      Phone: 215-955-8430      FAX: 215-923-5828      The Lupus Center offers comprehensive evaluation and treatment of patients with systematic lupus erythematosus and related autoimmune diseases. The staff employs the newest methods of therapy and is involved in national studies of experimental approaches to treating lupus patients. They also have particular expertise in the management of lupus patients during pregnancy and are actively involved in research and treatment of patients with disorders associated with the presence of circulating immune complexes. For more information about this center, see the Division of Rheumatology, or for a referral or appointment,      contact http://www.jeffersonhealth.org/jeffnow/. PART 2 Monica E. Luchi, MD Presbyterian Medical Center Medical Arts Building, Suite 111 39th & Market Streets Philadelphia, PA 19104 215-662-9292 Dr. Luchi is my Rheumatologist, she had a lot of lab tests done for me. From my experience, I think she is a good doctor. I have an appointment on the February 16th. I’m a patient at the clinic. The above information  is her private office. PART 3  Lupus Center This center provides a comprehensive, multidisciplinary approach to the diagnosis and care of patients with systemic lupus erythematosus, including advanced diagnostic procedures, new therapies, and lifestyle counseling.      Director Peter E. Callegari, MD  http://www.med.upenn.edu/php/physicians/output_doctor.phtml?id+100 Clinical Practices of the University of Pennsylvania http://www.med.upenn.edu/php/physicians/output_practice.phtml?id+188                Rheumatology                Rheumatology Division                Suite G,                3 Ravdin Building                University of Pennsylvania Medical Center, 3400                Spruce Street , Philadelphia PA             Appointments 1-800-789-PENN I don’t know a lot about their center. My PCP is affiliated with Presbyterian. Both the Presbyterian Medical Center and Hospital of University of Pennsylvania are part of  the University of Pennsylvania Medical System. I guess the links will work! Mitchell "Mookeysmom866" <mookeysmom…@cs.comnojunk> wrote in message

news:20000218190549.15864.00000189@ng-cd1.news.cs.com… – Hide quoted text — Show quoted text -> Thank you, I live in Pa, I did have a bad cold about a mo. 1/2 ago, I have not > had xrays, my DR has all but laughed me off to smoking, some days I dont smoke > but 5 ciggs,I told him I never had this before, in the am as soon as I get up, > I do ahh cough a thick white substace up, (sorry gross) then thats it. the > cough is non productive after up. > nothing fever wise to speak of. > Im going to find a new DR he said see you in 3 mo. > Mookeysmom/Tina

Response:

thanks for all of your support, Im going to really try hard to stop smokeing, I feel bad this a.m., my sinuses are stuffy and I coughed all night,& have a bad headache, mon is a holiday so I hope I can atleast get an appt  somewhere that will help me, Im tired and tired of being sick all the time, I need a good day now & then. thank you all, I dont feel alone with this problem, the lupus foundation only wants money from me , on disability its not avail. to give. support groupIve attended were contests & arguments on who was worse off, not my thing either. but this NG I like. Mookeysmom/Tina

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Question:

Hi Group,   Sincere apologies to all !! I am so sorry I printed Prednisone in long term use can cause vasculitis and I meant avascular necrosis please see snip from medicine net below and I think you will see why I made a mistake. Snip>>>> Aseptic necrosis can be caused by trauma and damage to the blood vessels that supply bone its oxygen. Other causes of poor blood circulation to the bone include an embolism of air or fat that blocks the blood flow through the blood vessels, abnormally thick blood (hypercoaguable state), and inflammation of the blood vessel walls (vasculitis). What conditions are associated with aseptic necrosis? Conditions that are associated with aseptic necrosis include alcoholism, steroid usage, Cushing’s syndrome, radiation exposure, sickle cell disease, pancreatitis, Gaucher’s disease, and systemic lupus erythematosus.>>>>>End snip I hope this clears up the coinfusion I caused !! Regards,                socjog@aolcom

Response:

Hi, Avascular necrosis (AVN) of the bone is due to prednisone is one of the gravest tolls it takes, it is usually developed only after long term of high doses. Bone is a living tissue that renews itself all the time. Thus, new blood vessels have to grow into it daily. Prednisone decreases the growth of blood vessels into the bone, when this is very sever, then not enough blood is getting there and necrosis starts. What is less known is that bone cells secrete substance that cause blood vessels to grow into the bone. Prednisone inhibit the production if this substance. But, DHEA causes the bone cells to produce this growth factor, even in presence of prednisone. In many lupus patients there is a primary defficiency in DHEA, in others, the prednisone, by suppressing adrenal activity, causes DHEA defficiency. We can know if a person is in DHEA defficiency by measuring his blood level of its main form there the DHEA-SO4 (DHEA-S) and if there is a defficiency, to provide it and to adjust the dose to that needed to bring blood level to the range presented in young healthy person, which is the optimal level. This may save some from developing AVN. We know that it saved some from steroid-induced myopathy. HTH, Boaz http://www.acor.org/lupus/ http://www.zeta.org.au/~sioux/mira always consult your medical practitioner

Response:

Thanks for the information on AVN, they just did tests on my hip to see if that’s what was giving me all the problems, luckily they were wrong, I need to have steroids injected into that joint to get relief but now I understand also what it can do.  I had never read about DHEA helping with this, but I am on 200mg. daily.  Thanks again and God Bless.  Cindy

Response:

Question:

A close relative has Systematic Lupus Erythematosus (sle).  Can anyone put me in the right direction for some information? Or can anyone give me a brief description of what it is, life expectancy, etc?  (I live in Spain, he

Question:

I’m looking for any informations about surgery intervention for somebody who has this diagnostic. Specially for european clincs where it can be done. Thank you! Dan Grigore —–== Posted via Deja News, The Leader in Internet Discussion ==—– http://www.dejanews.com/   Now offering spam-free web-based newsreading

Response:

I’m looking for any informations about surgery intervention for somebody with "systemic lupus erythematosus". Specially for european clincs where it can be done. Thank you! Dan Grigore —–== Posted via Deja News, The Leader in Internet Discussion ==—– http://www.dejanews.com/   Now offering spam-free web-based newsreading

Response:

I have never heard of any surgical intervention for lupus.  Since it is an auto-immune disease there is no way to cut it out of your body.   The lupus and its complications may lead to conditions that do require surgery.  You should discuss the lupus with any surgeon who will be working with you. debbie

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Question:

TribalNation not feeling any good either Oh I hope it doesn’t last for too long.

Me too! I don’t know much about Lupus and I intend to do a web search soon and look it up so as I can better understand what you are going through.

That’s sweet.  It has a longer name…systematic lupus erythematosus.  I have systematic-discoid lupus erythematosus.  It just says that I (we) are affected system-wide involving major organs and discoid is a type of lupus that localizes on the skin so I break out with lesions.  It’s unsightly. It sounds pretty rotten.

It is. Sending healing thoughts your way, Grace

Thanks Grace and all here.  I’m reading lots on asd but with arthritic running amuck I have to limit my typing.  Today, I pushed a lot to complete, what ended up being, a seven page declaration to submit with child custody papers that I have to file.  I’m sore as a result.  I hope ppl don’t think I’m a selfish moron for not engaging more.  I just can’t do more.  Like getting to respond well to one post feels more satisfying to me than doing little spot responses to a lot of posts.  I’m saving the original posts to hopefully respond to later when I’m feeling better.  Thanks again everybody for the support.  Sierra – Hide quoted text — Show quoted text – Hi Sierra/TN – Terribly sorry to hear about your physical struggles. Yah, it s*cks!  I was going to post about it, then decided not to, then I read your post and said "What the hay! Go for it!" and did. Hoping you can find all kinds of ways to pamper yourself and find some kind of mental comfort if nothing else Been sitting in this bitty apartment during the day with shades fully drawn bc when eyesight goes blurry and already sensitive to UVA/UVB rays, even indirect sunshine hurts.  I did go to my daughter’s open house though – sort of dragging myself along.  The cool night with the full moon was kind of refreshing.  Getting out and meeting my daughter’s teachers was nice too! – and hope the flare-up passes on soon. Me too!!! Celery, huh?  Interesting. Threw me too! I read books on lupus and then another comes out with updated info and I just keep learning as are others about what to avoid.  Granted, sometimes we learn a _tad_ too late!  Same thing happened to me with alfalfa sprouts!!!  Where’s a crystal ball to read into the future when you need one eh? I keep asking people if I am the only one whose tongue gets numb when I eat celery. Goes numb?!  Now, that’s a new one on me! TN – don’t feel you should answer this.  I just wanted to say hi, and sorry you are unwell. Thanks, sort of hard not to respond though. Sending my best – Same here.  I hope you’re feeling better soon too!  Sierra

Response:

TribalNation not feeling any good either Oh I hope it doesn’t last for too long. I don’t know much about Lupus and I intend to do a web search soon and look it up so as I can better understand what you are going through. It sounds pretty rotten. Sending healing thoughts your way, Grace – Hide quoted text — Show quoted text – Hi Sierra/TN – Terribly sorry to hear about your physical struggles. Yah, it s*cks!  I was going to post about it, then decided not to, then I read your post and said "What the hay! Go for it!" and did. Hoping you can find all kinds of ways to pamper yourself and find some kind of mental comfort if nothing else Been sitting in this bitty apartment during the day with shades fully drawn bc when eyesight goes blurry and already sensitive to UVA/UVB rays, even indirect sunshine hurts.  I did go to my daughter’s open house though – sort of dragging myself along.  The cool night with the full moon was kind of refreshing.  Getting out and meeting my daughter’s teachers was nice too! – and hope the flare-up passes on soon. Me too!!! Celery, huh?  Interesting. Threw me too! I read books on lupus and then another comes out with updated info and I just keep learning as are others about what to avoid.  Granted, sometimes we learn a _tad_ too late!  Same thing happened to me with alfalfa sprouts!!!  Where’s a crystal ball to read into the future when you need one eh? I keep asking people if I am the only one whose tongue gets numb when I eat celery. Goes numb?!  Now, that’s a new one on me! TN – don’t feel you should answer this.  I just wanted to say hi, and sorry you are unwell. Thanks, sort of hard not to respond though. Sending my best – Same here.  I hope you’re feeling better soon too!  Sierra

Response:

Hi Sierra/TN – Terribly sorry to hear about your physical struggles.

Yah, it s*cks!  I was going to post about it, then decided not to, then I read your post and said "What the hay! Go for it!" and did. Hoping you can find all kinds of ways to pamper yourself and find some kind of mental comfort if nothing else

Been sitting in this bitty apartment during the day with shades fully drawn bc when eyesight goes blurry and already sensitive to UVA/UVB rays, even indirect sunshine hurts.  I did go to my daughter’s open house though – sort of dragging myself along.  The cool night with the full moon was kind of refreshing.  Getting out and meeting my daughter’s teachers was nice too! – and hope the flare-up passes on soon.

Me too!!! Celery, huh?  Interesting.

Threw me too! I read books on lupus and then another comes out with updated info and I just keep learning as are others about what to avoid.  Granted, sometimes we learn a _tad_ too late!  Same thing happened to me with alfalfa sprouts!!!  Where’s a crystal ball to read into the future when you need one eh? I keep asking people if I am the only one whose tongue gets numb when I eat celery.

Goes numb?!  Now, that’s a new one on me! TN – don’t feel you should answer this.  I just wanted to say hi, and sorry you are unwell.

Thanks, sort of hard not to respond though. Sending my best –

Same here.  I hope you’re feeling better soon too!  Sierra

Response:

Hi Sierra/TN – Terribly sorry to hear about your physical struggles.  Hoping you can find all kinds of ways to pamper yourself and find some kind of mental comfort if nothing else – and hope the flare-up passes on soon.  Celery, huh?  Interesting.  I keep asking people if I am the only one whose tongue gets numb when I eat celery.  TN – don’t feel you should answer this.  I just wanted to say hi, and sorry you are unwell. Sending my best – Beauty — For more information about this service, send e-mail to:

Response:

Question:

Are you sure of the newsgroup name?  I can not find it in AOL. "Time is a valuable asset.  Do not waste yours nor that of others.  Well spent, it affords one the oportunity to choose when and where to use it for relaxation and building relationships, our most valuable asset."

Response:

What is the name of this newsgroup for caregivers..I think my husband could really benefit from it…Bree — May all your days be full and free from the worry of:   "now what is that thingy, you KNOW, that THINGY over          there, you know over there !!!called!" ————————————- Bree Bennett In Missouri

Response:

On Tue, 4 Mar 1997, Harold Bean wrote: > P.S. Could someone direct me to a S.O. NG or is one not available at this > time?

To the best of my knowledge such specific NG is not available. However, our comined list-NG has a lot of space for caregivers (SOs, other family members, friends). Chanoch Weil ccan…@ALUF.TECHNION.AC.IL

Response:

> To the best of my knowledge such specific NG is not available. > However, > our comined list-NG has a lot of space for caregivers (SOs, other > family > members, friends). > Chanoch Weil

There is a general support group for caregivers – alt.support.disabled.caregivers.   I don’t think it is carried by many servers, and it has very little traffic.   There are quite a lot of MS caregivers (like me) in a.s.m-s. Robert Tusler, Surrey, England rtus…@cix.compulink.co.uk http://ourworld.compuserve.com/homepages/Robert_Tusler

Response:

I checked with the NG alt.support.disabled.caregivers and the post were very small. Anyway, I enjoy this NG because IMHO, as most of you know, we SO’s learn alot by your feedback and in turn it gives us something to relate to when you need our help. Just wish I had the "magic bullet" to rid the world of this disease…:-) Harold "Robert Tusler" <rtus…@cix.compulink.co.uk> wrote in article <E6rqtu….@cix.compulink.co.uk>… – Hide quoted text — Show quoted text -> > To the best of my knowledge such specific NG is not available. > > However, > > our comined list-NG has a lot of space for caregivers (SOs, other > > family > > members, friends). > > Chanoch Weil > There is a general support group for caregivers – > alt.support.disabled.caregivers.   I don’t think it is carried by many > servers, and it has very little traffic.   There are quite a lot of MS > caregivers (like me) in a.s.m-s. > Robert Tusler, Surrey, England > rtus…@cix.compulink.co.uk > http://ourworld.compuserve.com/homepages/Robert_Tusler

Response:

Dear Harold, I have a great tenderness for caregivers.  In my case, when we were first married the roles were reversed.  I was strong and my husband was an outpatient at City of Hope in Duarte, CA and was told he had Systemis Lupus Erythematosus.  He  didn’t die, as he and his parents thought he would, but recovered to hike in the Sierras and climb Mt. Whitney several times.  He still has limited movement of arthric changes, was steered away from college by various teachers and guidance  counselors until he finally went to graduate school and then dental school. When  we had been married about 15 years and were ready to move fr om CA to IA I was diagnosed with MS.  We both tangle with despair, depression but have humor, concern, love, and take turns being receiver and giver of care.  How can I subscribe to that support group for caregivers?   Thanks for listening. Susan Dunham  at Clarinda, Iowa sdun…@juno.com

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In article <19970402.194211.13094.1.sdun…@juno.com>, "Susan T. Dunham" <sdun…@JUNO.COM> writes >  How can I subscribe to that support group for caregivers?   >Susan Dunham  at Clarinda, Iowa >sdun…@juno.com

Susan,  There is a newsgroup called alt.support.disabled.caregivers and ofcourse there is no charge to join us. — Geoff Hulance

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