|
|
Home 
Community
Chat
Transcripts-6/26/00
Lupus Q and A with Dr. Susan Hoch
InsightHostKJ> Hey Dr Susan!
DrSusan> HI folks - I found I couldn't get here through Netscape. Had to use Internet Explorer.
InsightHostKJ> Hmmm...will have to check into that Dr Susan
DrSusan> HI KJ - are you recovered from your surgery?
InsightHostKJ> Yup...pretty much...still wearing post op shoe and supposed to be limiting my activity. But you know how well I follow orders
DrSusan> Here in Philadelphia, it's 90 degrees and 90 %% humidity and I'm already working up a sweat. Shall we get started? Do you want to do lupus or should it be a free for all?
InsightHostKJ> Let's see how many Lupus people we have...say "me" if you have lupus!
Guest49> ME
nsightHostKJ> Ok Guest 49...do you have a question for Dr Susan?
Guest49> I can't seem to get any relief from my joint pains. I've been taking Plaquenil & Arthrotec but have to supplement them with Tylenol. Any suggestions?
DrSusan> That't not too surprising. A lot of patients with inflammatory arthritis such as lupus as well as RA need a pain med as well as an antiinflammatory. And Tylenol is a safe, well tolerated pain med.
DrSusan> If the rest of the lupus is not active and you can stay off steroids, taking Tylenol or even something stronger to control pain seems like a good tradeoff to me.
Guest49> But I still don't get relief. I suffer terribly and can hardly walk when I try to work or do anything physical. I was diagnosed in 1984.
DrSusan> The other possibility is that the pain is from something else - avascular necrosis from steroids, osteoarthritis, neuropathy, muscle weakness, fibromyalgia, you get the picture. We often - both patient and doctor - wear blinders and assume that everything comes from the one disease process.
InsightHostKJ> I do...blame everything on the RA
Guest49> Yes, that's what has happened to me. Everytime I complain about anything to the doctor now, the Dr. attributes it to lupus. I recently suffered pleuritis for 1 1/2 years, and they said it was lupus related. I finally had a thoracosopy on June 16, and the surgeon said I had extreme thickening of the pleura probably due to a past pneumonia.
Melanie> Is it very common to develop more than one immunological illness at a time?
DrSusan> Yes.
InsightHostKJ> Any idea why?
Melanie> Any patterns?
DrSusan> It probably has to do with what makes you have autoimmunity in the first place.
DrSusan> If you can't recognize what is you and what is foreign - and you make antibodies (proteins0 that react with your own tissues, you may get lupus or Hashimoto's thyroiditis or diabetes or
DrSusan> For example, patients with rheumatoid arthritis and lupus are more likely to have autoimmune thyroid problems such as Hashimoto's thyroiditis than the general population.
Guest49> What effects might lupus have on the heart?
DrSusan> Lupus has a number of effects on the heart. Pericariditis or inflammation of the sac surrounding the heart is one criteria for lupus itself. In addition, we have now learned that patients with lupus are at risk for accelerated coronary artery disease. And valvular heart disease seems common in patients with lupus, in particular those with an anticardiolipin or antiphospholipid antibody.
DrSusan> Finally, steroids that are used in lupus are associated with increasing blood pressure, raising the risk for diabetes and raising blood lipid levels and hypertension, diabetes and high cholesterol are all risk factors themselves for heart disease.
Guest49> This is the first time I've chatted with you, Dr. Susan. Are you a rheumatologist?
DrSusan> Yes, I'm a card carrying member of the ACR and a board certified rheumatologist.
DrSusan> So back to the heart and lupus - what are things you can do to impact this? First, do not smoke - and this goes for patients with RA as well. Second, get serious about control of hypertension, cholesterol, elevated blood sugar. Get serious means control that blood pressure - don;t tolerate values of 150/90. Get serious about diabetes, even if it may mean insulin.
DrSusan> Patients with lupus just like everyone else with elevated cholesterol benefit from lipid lowering drugs. And we are now learning that some of these drugs, the statins, may have other benefits such as protecting from osteoporosis.
Guest49> What is the life expectancy for lupus patients nowadays?
DrSusan> I don't know exactly what nowadays means. What I mean is that the life expectancy is at least a 95%% probability of living 20 years and it may be higher. That is based on patients diagnosed in 1980.
DrSusan> If you look at what patients with lupus die from these days, they don't die from lupus because we can control lupus acutely.
InsightHostKJ> What do they die from?
DrSusan> They die from complications of treatment or long term kidney disease, hypertension.
DrSusan> They die from infection (due to meds), pulmonary embolus (due to antiphospholipid antibody syndrome), myocaridal infarction (heart attack) due to accelerated atherosclerosis.
DrSusan> And still from suicide.
InsightHostKJ> Can you have a negative ANA and still have lupus?
DrSusan> Yes, but 99%% of lupus patients will have a positive ANA at some time in their illness.
DrSusan> ANA negative lupus is historically associated with skin disease, with what is called subacute cutaneous lupus and not with kidney disease or more severe CNS disease.
DrSusan> the last two points I want to make are public health points about lupus.
DrSusan> Patients with lupus appear to be more at risk for pneumococcal infection and benefit from getting the Pneumovax vaccine. In addition, since many lupus patients may have underlying valvular heart abnormalities, and appear to have an increased risk for heart valve infection, endocarditis, many rheumatologist give these patients prophylactic antibiotics before dental cleaning or surgical procedures.
Guest49> Can you explain a little bit about elevated DNA?
DrSusan> It is elevated antibody to DNA, not elevated DNA.
Guest49> Okay, so what exactly does an elevated antibody to DNA?
DrSusan> Patients with lupus make antibodies that bind to parts of the normal human body.
DrSusan> One of the most characteristic antibodies seen in lupus is an antibdy that binds to double stranded DNA. DNA, is the same stuff that was reported to be sequenced today - the code for human life. And patients with lupus make antibodies to their own DNA!
DrSusan> Why, we haven't too many clues although a recent study suggests that they may be lacking an enzyme DNAase.
JBug> When I was 16, my docotr prescribed daily meds for an underactive thyroid. He said that I would always continue taking them. Then about 10 years later, someone stopped the meds. Since that isn't supposedly curable, why does my rheumatologist refuse to consider that I might need this and still have the problem?
DrSusan> My guess about the thyroid is that you have antibodies to either thyroglobulin or thyroid microsomes and that the thyroid level fluctuates.
Betty> If I had testing for Lupus 15 yrs ago, do I need another without symptoms?
DrSusan> Why were you tested if you had no symptoms?
Betty> When I started with Arthritis they tested for everything, I guess
DrSusan> I see no reason to repeat testing for lupus unless you develop symptoms consistent with lupus. Since arthritis is a symptom of lupus, rheumatologists always test new patients with inflammatory arthritis for blood tests that could indicate lupus or rheumatoid arthritis.
Guest166> I was just diagnosed with elevated RA, also have hepatitis C from Von Willebrands, and just dx with DIC. Is this from autoimmune process? or 7 11 chromosomal translocation? or both? i have elevated alpha 2 antiplasma. what does this all mean??
DrSusan> Guest 166, you are going to be a challenge to any rheumatologist.
DrSusan> I wonder if the hepatitis C and rheumatoid arthritis are related and whether what you have is hep C arthritis not RA.
DrSusan> von Willebrands to my knowledge is not associated with RA.
DrSusan> I think guest 166 has violated the three disease rule.
InsightHostKJ> I think so too! You must return one 166!
Guest166> all of a sudden my joints hurt and ra is elevated
DrSusan> 90%% of patients with hepatitis C infection will have a positive rheumatoid factor.
Guest166> oh i did not know that!
InsightHostKJ> wow....I wasnt aware the number was so high
Guest166> what is this DIC, is it autoimmune?
DrSusan> Patients with hepatitis c arthritis have pain and swelling but do not appear to get nodules or erosions on Xray.
DrSusan> Do you know what your viral load is? Or liver biopsy?
Guest166> cannot have liver bx due to risk of bleed.. viral load way up there.. had interferon but had subarachnoiid hemorrhage....lft; s are okay tho
DrSusan> Back to DIC. DiC stands for disseminated intravascular coagulopathy and obviously you are at trememndous risk for bleeding, both from the Von Willibrands and from the DIC.
Guest166> but now DIC and three lesions on spinal column
DrSusan> Did you bleed into the spinal cord? What kind of lesions are these?
Guest166> i bled during the subarachnoid hemorrhage in 93...lesions are on c7 c6 c5
DrSusan> Guest 166, I am so sorry to hear of your complex situation - you must be a brave and courageous individual.
InsightHostKJ> Guest 166....you sure do have your hands full!
Guest166> i know:) being brave here !!
InsightHostKJ> 166...we're always here when you need support!
TRANSAM> Got my BP down to 130/85 last visit. Have been taking the lorazepam. Does that help take BP down?
DrSusan> Sure, lorazepam is an anxiolyitc - treated anxiety and many people respond to anxiety by raising their blood pressure.
DrSusan> Obviously watching the salt, fighting the battle of the bulge and taking your meds help.
TRANSAM> So if I take higher does will it lower it even more??
DrSusan> Maybe, if it doesn't put you to sleep. LOL.
Melanie> What are symptoms of lupus?
DrSusan> The skin symptoms most commonly seen are the classic butterfly rash, discoird (a scarring rash) often on face and ears, and photosensitivity -getting a rash and getting ill on sun exposure. Oral and nasal ulcers are another feature.
DrSusan> The arthritis of lupus is symmetircal, small joint and large joint, hand involvement with swelling and morning stiffness but it does not tend to be deforming unlike rheumaotid arthritis. Pleurisy and /or pericarditis are a feature. Kidney, blood and central nervous system involvement wiht seizures or psychosis are other symptoms.
DrSusan> And of course there are the characteristic antibodies we discussed before.
InsightHostKJ> quite a list!
Melanie> Thanks, I know very little about lupus.
DrSusan> i hope you never have to learn any more.
swimmer> How does RA change life expectancy?
DrSusan> We think it may shorten it but I must caution you that all the studies are based on patients diagnoses in the 70's and early 80's.
DrSusan> Patients with rheumatoid arthritis seem to have more cardiovascular disease. So things like getting enough folic acid - even if you are not on methotrexate and being serious about your other cardiac risks just like lupus patients are important.
DrSusan> Exercise too, and treating hypertension, and elevated cholesterol and controlling diabetes. And not smoking!!!!!!
InsightHostKJ> I think she means that! ;-)
DrSusan> With regard to cancer, patients with rheumatoid arthritis are at higher risk for lymphoma but much lower risk for colon cancer than the general population.
Marsha> Is there such thing as ANA-neg lupus, or does RA have several lupus features in common? I have the malar rash and have had kidney inflammation..docs have tested for lupus and I had only 1 ANA come back mildly pos
DrSusan> Yes,there is ANA negative lupus.
Marsha> ...or does it matter if they know if it's lups or ra, since the treatment seems to be so similar?
DrSusan> Yes and no.
DrSusan> That's very helpful, LOL.
InsightHostKJ> Gee thanks for that answer! lol
DrSusan> What I mean is that yes the treatment is similar but there are differences. For example, we
don't use Enbrel or remicade in lupus.
Guest172> With lupus what do you do for low white counts and low red counts?
DrSusan> And we don;t use sulfasalazine or gold in lupus either. We tend to use more cytoxan in lupus than in rA.
InsightHostKJ> Why no Enbrel or Remicade?
DrSusan> A low white count in lupus usually is a low lymphocyte count and is indicative of active disease. The count itself does not have to be treated per se.
DrSusan> Low red counts in lupus could be due to a hemolytic anemia related to an antibody against the red blood cells.
DrSusan> Patients on Remicade have been reported to develops antibodies to double stranded DNA and there is a concern they might get drug induced lupus.
Guest172> what antibody is that for red blood cells
DrSusan> You can see drug induced lupus in RA in patients on penicillamine, sulfasalazine and minocycline.
DrSusan> Guest 172 - the classic anti red cell antibody in lupus is a Directo Coombs antibody.
DrSusan> Marsha, it sounds to me as if you developed bone marrow toxicity from the gold you were taking for rheumatoid arthritis.
DrSusan> It was a good thing they stopped the gold before you damaged the bone marrow more.
Guest49> Yes, thanks. Will you discuss the pros and cons of methotrexate?
DrSusan> In RA?
Guest49> No, lupus.
Guest172> In lupus too...
Guest172> What about ARAVA in treatment of lupus? Is that better"
DrSusan> In RA, methotrexate has been shown to slow down erosive change on xrays. In lupus, methotrexate is a steroid sparing agent, not exactly a disease modifying agent.
DrSusan> Similarly Arava slows down erosions in RA.
Guest49> Does it relieve joint pains when other medications don't?
DrSusan> In SLE, it is being used to control disease and taper steroids. In lupus, the initial drug of choice to control disease is steroids.
DrSusan> All the other immunosuppressives, methotrexate, Imuran, Cellcept, cytoxan, Arava are used to maintain disease control.
Marsha> My autoimmune fun began with Graves in '95...now dx with ra/fibro/apnea/mvp....is there research that shows connection between thyroid stuff and all these other problems?
DrSusan> Yes, yes, yes Patient's with autoimmune thyroid disease are at higher risk for other autoimmune diseases.
DrSusan> And vice versa.
DrSusan> If you haveRA or lupus, you are more likely to have autoimmune thyroid problems.
DrSusan> The thyroid ought to be relatively easy to control. It's usually the RA or lupus that is the bigger problem.
Marsha> Will the mtx control other autoimmune problems other than ra/lupus?
DrSusan> Yes, it's a good drug for dermatomyositis and polymyositis. However, for some other autoimmune diseases, other immunosuppressivesare better. For example, cytoxan isthedrug of choice for lung disease in scleroderma and for Wegener's and for lupus kidney involvement.
swimmer> you mentioned pneumovax for people with Lupus. what about pneumovax for RA patients who take Enbrel? Would it be good to get the vaccine?
DrSusan> The Pneumovax question - anyone who is immunosuppressed with steroids or other immunosuppressants should, in my opinion, receive Pneumovax. They should also get a flu shot unless they are allergic to eggs.
swimmer> side effects?
DrSusan> Side effects of Pneumovax?
DrSusan> None - it's not live bacteria, just bacterial products. Very safe, well tolerated. Been around for a long time. At least 20 years.
InsightHostKJ> Any closing thoughts Dr Susan?
DrSusan> I actually had hoped to mention a trial that the N.I.H. is sponsoring for the treatment of lupus that is interesting.
InsightHostKJ> Please tell us about it
DrSusan> This is the high dose Cytoxan ablation.
DrSusan> The N.I.H. has asked several centers to compare the standard therapy for lupus nephritis of 750 mg to 1 gram of Cytoxan oncea month for 6 monthsand then once every 3 months for 2 years with 200mg/kg dosing. It's a very high one time only dose of Cytoxan. It wipes out the bone marrow but not the stem cells.
DrSusan> It was pioneered by Robert Brodsky and Michelle Petri at Hopkins. They are now expanding it to several centers.
DrSusan> The risk is that you are basically giving the preparation to wipe out the bone marrow as if you were going to give a bone marrow transplant.
InsightHostKJ> If this does work for Lupus...would it work for RA and others?
DrSusan> So there will be a period of weekswhen you have no white cells, no platelets and no red cells.It is dangerous.
DrSusan> However, DRs Brodsky and Petri have patients in whom the lupus has gone into complete remission.
InsightHostKJ> wow
DrSusan> They arealso using it for other autoimmune disease including neurologic illnesses such as CIDP.
DrSusan> There is no experience yet in RA and again, the N.I.H. study is only for lupus nephritis.
InsightHostKJ> sounds encouraging
DrSusan> So, maybe in a few years, we will be treating lupus differently. Let's keep tuned.
InsightHostKJ> Please keep us posted!
DrSusan> I hope to, unless I have more technical difficulties. LOL
InsightHostKJ> LOL! Dr Susan thanks so much for putting up with us once again!
Donna> Thank you Dr, Susan, a pleasure as ususal
DrSusan> See you all in cyber space.
swimmer> thank you Dr. Susan
KenA> many thanks Dr.
InsightHostRon> Thank you so much Dr Susan
InsightHostKJ If you didnt get a chance to ask you
question..don't forget you can always ask Dr Susan and our other advisors at
/medical/advice/
|
