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Transcripts-5/1/00
Everything You Wanted to Know About Arthritis
But Were Afraid to Ask with Dr. Susan Hoch
DrSusan> I guess it's time to talk about ARTHUR.
InsightHostKJ> Sure is Dr Susan! Who has a question?
Guest0> Dr. Susan... I have FM but what are the chances I have lupus too?
DrSusan> OK, guest O - are you aware that there are criteria for the diagnosis of lupus Why do you think you might have lupus?
Guest0> I have been to 3 rheumatologists and one GP. I have had major surgery a year ago
DrSusan> And what do they say?
Guest0> "they said I had thoracic outlet syndrome..surgery caused phrenic nerve palsy...which I still have. I believe I am having kidney problems due the symptoms of pitting edema X 5 months, swollen abdomen, BUN 22, tea-colored urine, swollen eyes (and face too at times)... ??
DrSusan> Certainly, you need to get the kidney checked out. Do you have high blood pressure? Have you done a24 hour collection for protein and creatinine? Is your ANA test positive? How about double stranded DNA? Are c3and C4 normal or low? Those are the kinds of tests that might lead to a diagnosis of lupus. However there are many other causes of kidney disease and it sounds like you would benefit from seeing a nephrologist.
DrSusan> Fibromyalgia can be associated with lupus but also with other diseases that can give you kidney involvement including Sjogren's, hepatitis B and C and HIV.
Guest0> I have told all 3 Dr.s that very thing and they all have ignored me...as a matter of fact, today I waited in a rheumy's office and exam room for 3 hours for him to see me for less than 10 minutes .He simply did not want to hear what I had to say.. At THEIR request, I wrote a 10 page HX...should I just TELL my GP to refer to a nephrologist?
DrSusan> Yes, if you have kidney involvement and your GP can;t give you ananswer, see a nephrologist.
Guest0> I am pretty sure I have Sjogren's, too...all the symptoms...and Hep has been mentioned somewhere down the line briefly
DrSusan> I'd start working up either what is causing pain - the fibromyalgia or whatseems to be serious - kidney involvement. I'd also get copies of all my relevant labs - BUN, creat, ANA, 24 hour urine and make sure that all the docs have the labs they need.
Guest0> Thank you very much, Dr. Susan !!!!!
InsightHostKJ> Dr Susan, since dropping my MTX my SS is really flaring...short of going back on MTX any other options? Ra is still doing fine...if it aint one thing it's another!
DrSusan> What piece of the SS, KJ? Eyes, mouth, or what?
InsightHostKJ> eyes mouth skin...horribly dry
DrSusan> Have you tried either Salagen or the new med, Evoxac? They are both meds that stimulate glandular secretions.
InsightHostKJ> No was going to ask about Salagen next RD visit
DrSusan> Evoxac is new but is supposed to be longer acting. I am also a great fan of tear ointments, artificial tears, and punctal plugs for eyes.
InsightHostKJ> i was hoping plaquenil and azulfadine would keep it in control....I have being using thera tears
DrSusan> I like the Biotene mouth products for dry mouth and Salivart spray isn't bad for aspray of saliva. By the way, I am not paid by any of these products to endorse them.
InsightHostKJ> LMAO
InsightHostKJ> Thanks Dr Susan...I'll ask about the meds and get some spray
Melanie> Maybe we could discuss flow of RA (like last night) - synovium, cartilage, joint, etc. How it moves through areas?
InsightHostKJ> OK>.. We were discussing RA's plan of attack last night
Melanie> Disease progression?
InsightHostKJ> Can you give us a quick run down Dr. Susan?
DrSusan> I wasn't there last night. Do you mean that the lining cells of the synovium proliferate so that there are more of them. There is an influx of lymphocytesand macrophages, cells of the immune system. The lymphocytesand macrophages produce substances called cytokines.
InsightHostKJ> Stop that! In real english please! LOL
DrSusan> Levels of a chemical called Tumor necrosis factor(TNF) are elevated in patients with RA. So Immunex produced adecoy molecule - called Enbrel which blocks the raised levels of TNF from binding to the receptor on the cell surface and activating that cell.
DrSusan> Remicade is an antibody that binds to the TNF receptor itself. These new meds work by blocking the substances called cytokines from driving the inflammation.
Melanie> When you are newly diagnosed and experiencing pain, that is probably high TNF attacking synovium?
DrSusan> Pain is initially from inflammation, as is stiffness.
DrSusan> Then what happens, if the process goes on long enough is that the synovium and enzymesfrom the cells erode bone. We see these bony erosions on xray. Cartilege is also eroded by various enzymes. YOu can end up with bone on bone and that itself causes pain. That is the pain people with end stage osteoarthritis get. Is that enough? Whew!!!!!
InsightHostKJ> You said a mouthful!
DrSusan> So the ways to stop RA are 1) keep the synovium from proliferating 2) keeps the cells out 3) block the cytokines or turn them off and 4) prevent erosions.
Cathi> Can you explain dexa results? I was told 75% of ideal at spine and
85% at hip
DrSusan> Cathi, do you have your DEXA report at home? If not, let me explain the numbers to you.
Cathi> I have a letter from the Dr.
DrSusan> OK, does it have T and Z values? Bone density is arbitrarily compared to the peak bone mass a person of your race and gender had at age 30.
Cathi> No, bone density at spine is 0.772 and at hip is 0.754
DrSusan> If you are more than 2.5 standard deviations from that value, it is considered by the World Health Organization to be osteoporosis. So, for example, last year, my T value at the fourth lumbar vertebrae was 2.52, consistent with osteoporosis.
DrSusan> Between 1 and 2.5standard deviations from peak bone mass at age 30 is defined as osteopenia - thin bone. For example, my Ward's triangle value was 1.89, so I am osteopenic at the hip, not osteoporotic. I'm on Fosamax, calcium and D.
DrSusan> The values in your letter are bone mass values in grams/cm2. We generally look at the T values for com[parison to population. Does that help explain DEXAs at all?
Cathi> Do you know what the numbers I have mean? Or where I can find Tvalues?
DrSusan> Yes, those numbers are bone mass measurements but I would have to have a comparison peak bone value. They should be on the report that the doc got.
Cathi> Thanks, I'll call tomorrow. He just got certified and we did the test at his office.
marsha> Is TNF attacking synovium also what causes RA to affect organs/blood counts?
DrSusan> Interesting question - I don;t think we really know why some people with RA get vasculitis or eye inflammation and others don't. We know that smoking increases risk of rheumatoid lung disease. But we don;t know what the co-factors are that make RA be extrarticular in some people. And there are other cytokines besides TNF involved. TNF is just the best studied. But it is clear that not all people respond to Enbrel or Remicade and presumably the disease in those people is modified by other cytokines and factors.
marsha> It's a complicated process...Is it TNF that distinguishes Lupus from RA?
DrSusan> Certainly, raised TNF levels are not a lupus feature. But there are other differences at the genetic level between RAand lupus and the diseases have differences. For example, 90%% of lupus patients are women; 60%% of RA patients are women. RA gets better in pregnancy; lupus may flare in pregnancy. Lupus can involve the brainwith seizures or psychosis. RA does not.
DrSusan> Both can give you pleurisy or pericarditis. Lupus affects the kidney much much more than RA.
DrSusan> I like to think of them as cousins - you know how cousins may be similar but clearly are not sibs.
swimmer> Regarding a bone density test. I have been diagnosed with osteopenia. Just wondering. Do all bones have the same degree of damage? Or, can leg bones be much worse than spine or hip show?
DrSusan> The bones that we usually measure are the ones that we can predict fracture risk and the ones where fracture is very significant.
swimmer> I have had two stress fractures
DrSusan> The disability from a toe fracture is so much less than a hip fracture, for example.
swimmer> leg (after ankle fusion surgery) and foot
DrSusan> Stress fractures can be associated with osteopenia/osteoporosis. I'm make sure you have enough calcium and vitamin D in your diet.
swimmer> if I am having fractures with osteopenia, how bad will osteoporosis be?
DrSusan> If you are postmenopausal, you should look into an antiresoprtive - either estrogen, Evista, calcitonin or a bisphosphonate.
swimmer> thanks...now taking Vitamin C and D and reducing pred
DrSusan> Where's the calcium?
swimmer> sorry....not Vitamin C,,,,meant calcium
DrSusan> are you on an antiresorptive to prevent steroid induced osteoporosis?
swimmer> not yet....
DrSusan> How much - 1500 mg calcium per day is recommended if you are on prednisone with at least 400IU of D.
swimmer> waiting to see if things improve? after lowering prednisone and trying to start exercising again
swimmer> 3 mgs now of pred
DrSusan> Trace minerals like magnesium are probably necessary too.
DrSusan> Swimmer, as long as you are on prednisone, you will be losing calcium from bone and losing bone!
swimmer> ok...good to know. Prednisone sure helps though
DrSusan> If you can get off the Prednisone, whoopee!!! If not, you will need anantiresorptive.
swimmer> thanks
TRANSAM> what does it mean when your leg muscles are sore to the touch, just touching them hurts, and weakness with
exertion. Also think I am running low grade fever on and off.
DrSusan> I would be concerned about muscle inflammation - myositis.
TRANSAM> does that cause temp to go up??
DrSusan> It could.
TRANSAM> does RA cause that?
DrSusan> Are you on any medications that can cause muscle inflammation? The statins thatare used to lower cholesterol do this all the time.
TRANSAM> Im on minocycline,naproxyn
DrSusan> RA itself doesn't usually cause a myositis but some of its cousins like lupus, Sjogren's, CREST, and of course polymyositis are associated with myositis.
TRANSAM> And a apo renatidine for stomach and ace inhibitor for high BP
DrSusan> Minocycline has been associated with rare cases of drug induced lupus but not to my knowledge a myositis.
DrSusan> i'd see your doc, have him/her examine your muscles for weakness, tenderness, check reflexes, check sensation and strength. A blood test for CPK and aldolase would reveal muscle inflammation.
Donna> 11 yrsof pred,still on 5 mg,taking 1800 calcium and myocalcin spray, do I need something more
DrSusan> Donna, it depends on whether you are holding your own bone wise and where youstarted from.
Donna> need to get another density this year
Donna> haven't had a stress fx for 2 yrs now!
DrSusan> For example, if you started out with high peak bone mass, it will take longer to lose bone, even with 11 years of prednisone. However, if you have other factors such as the most important, a family history of osteoporosis, and then were on prednisone, you may not have too much bone left to lose.
Bandit> I have psoriatic arthritis, I am currently on 35 mgs mtx weekly, my dr is trying to get me remicade so we can come down on the mtx. There is a VERY strong possibility that I will not be able to get this drug (finances might be a problem) Enbrel is not an option either... so where does that leave me on options. My pa is still VERy aggressive and the dr is not happy with me not responding to mtx. What else is there?
DrSusan> I sure hope you can get Enbrel or Remicade. If you can't, how about cyclosporin? Either with or without methotrexate.
Bandit> ok thanks
TEXAS> HAVE YOU EVER PRESCRIbed antibiotic protocol with arava? would this be realistic after ll yrs. of ra?
DrSusan> I have not personally. But people do prescribe minocycline with methotrexate and Arava is a methotrexate like drug so I don't think it is necessarily unreasonable.
Guest12> You covered the T value earlier; what is the Z value for?
DrSusan> Patients do seem to do better with minocycline early in disease but it is certainly something one could consider - and especially if there are insurance issues about using Enbrel, Remicade or Prosorba.
DrSusan> The Z value isnot used to define osteoporosis. The Z valuescompares you to individuals of your same gender and age. So you can use to to tell a patient, for example that she has 60%% of the bone mass at the lumber spine of a woman her age.
DrSusan> In terms of fracture prediction - which is the goal - you would like to predict who is at risk for fractureand what is their risk and therefore who should be treated and how aggressively. For those predictions, most studies have used T values.
Guest12> Oh, so zero would be norm, a + better than, and a - less than? Did I get that right?
DrSusan> Basically guest 12.
JR> Is it realisitic to get off prednisone? I have been on 5 mg ofr four yrs. Currently kmaking progress on Enbrel adn plaquwnil?
DrSusan> Might be. I'd taper very very very slow. No more than 1 mg per month and maybe 0.5 mg per month.
JR> Thnaks. Every time I try to cut down I am tired and achy, but I am not patient. I try to cut down 1 to 2.5 mg.
DrSusan> That is too fast. No more than 10%% of the dose per week! So if you are on 5 mg, that is 0.5 mg
Guest0> You spoke about hips and eyes...I have had Iritis several times..but what I'm interested to know is, what is necrotic vasculitis? what are the S&S?
DrSusan> Guest 0 - do you mean necrotizing vasculitis?
Guest0> I think so...I have lots of pain in my right hip...along with pitting edema, etc.
DrSusan> If you do that means that there is inflammation of blood vessels with damage to blood vessel walls and damage to the tissue served by the involved blood vessel. There are many kinds of necrotizing vasculitis and they tend to be classified by the size of the vessels involved.
Guest0> I am driving myself crazy...I hurt and I'm swollen and I don't know where to go...
DrSusan> The classic kind of necrotizing vasculitis is polyarteritis nodosa which affects the medium sized arteries in the skin, liver, kidney,
DrSusan> However, patients with rheumatoid arthritis can get a necrotizing vasculitis, as can patients with hepatitis B and C infection.
Guest0> Thanks again, Dr. Susan
DrSusan> I always start with things i can measure. If you have edema, for example, you either have a problem with the liver making enough albumen, a problem with the intestines absorbing protein, a problem with the kidney spilling protein or heart failure.
DrSusan> So if someone comes in with edema, you measure the BUN and creatinine for the kidney, liver functions, check out the heart and check the urine for protein, for a start.
Guest0> You are the only MD who is listening to me! Thank YOU!!!
DrSusan> Guest 0, you need to get a doc who listens to you!
InsightHostKJ> I'll second that!
DrSusan> In the flesh!
Dee> what if there is a trace of protein in urine?
DrSusan> Probably doesn;t mean anything.
DrSusan> Chances are the next time you test the urine, it won't repeat. If you are on gold, however, I'd watch your urine quite carefully.
Guest12> By chance, could Vioxx cause intense itching (no rash or redness) in the lower arms and other odd spots, or perhaps it can in conjunction with a diuretic? Have you encountered this at all?
DrSusan> NO. But any drug can cause an allergic reaction in any person!
Guest12> Even after many many months?
DrSusan> If you've been on both drugs for many months, it's probably something else.
Guest12> I have been on all my drugs for a long time. It is getting worse and I can figure it out.
DrSusan> Dry skin is a very common cause of itching but I would also worry about your liver.
TRANSAM> Real fast ?. How long can you stay on minocycline??
DrSusan> If it works and there are no side effects, I assume for years. In the O'Dell study, some people had been on it for at least 3 years.
TRANSAM> How long does it take to really take hold? Ive been on it for 10 months now
DrSusan> Minocycline seems to take 6 to 9 months to do its thing. Is it helping you?
TRANSAM> Oh ya, have had dramatic results form it.
DrSusan> One advantage of minocycline is that we know its long term side effects - the major concern is hyperpigmentation. But if it works for you, I'd stay with it.
TRANSAM> No more swelling or too much pain, but is not stopping the destruction
TRANSAM> What it that pigmentation thing??
DrSusan> However, if you are having xray progression on it, you may wish to either add a med such as methotrexate or consider switching to another DMARD. The pigmentation thing is that minocycline can cause a black-blue pigmentation to be deposited in the skin with long term use in some patients. Laser can help clear it up.
TRANSAM> Ive got funny white maps of pigmentation on my chest, like white spots and blotches
DrSusan> I don't know what they are but they are unlikely to be related to the minocycline.
TRANSAM> Ok , thanks a lot DrSusan, appreciate it greatley. You are a very gracious person and a good doc
DrSusan> Thank you Transam. It's always a pleasure to hear from you.
InsightHostKJ> OK I think we'll let Dr Susan get to bed, her patients tomorrow will appreciate it!
IndyRon> Nite Dr Susan and Thank You
Donna> Thank you Dr. Susan . It is always a pleasure to have you
swimmer> Thanks Dr. susan
Melanie> Thanks again, Dr. Susan. Good night
DrSusan> You are not kidding. Good night. I've be back in June if you want.
marsha> THank you so much Dr. Susan...We appreciate you!!
InsightHostKJ> Wonderful chat as always Dr Susan
InsightHostKJ> If we want? Of course we want!
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