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Transcripts-4/3/00
Arthritis Q and A with Dr. Susan Hoch
InsightHostKJ> How ya doing Dr Susan?
DrSusan> Busy. What did you think about the Osteoporosis Consensus Conference stuff?
InsightHostKJ> Very interesting...I hope to get some time tonight to write something up.... Thanks for sharing it!
DrSusan> I think it's important for all of us. Maybe most important for those who have adolescent daughters.
InsightHostKJ> I was surprised to hear them say it wasnt just for old folks
DrSusan> That was the message totake home. That osteoporosis is preventable. And that prevention starts in childhood.
InsightHostKJ> Hopefully that'll spread
DrSusan> It will have to get down to the pediatricians.
InsightHostKJ> that might be tough
JBug> Is the message more milk and calcium supplements?
DrSusan> But you know, in my medical lifetime, pediatricians have become more aware that arteriosclerosis starts in childhood and are now starting to think about high cholesterols and triglycerides in kids.
InsightHostKJ> thats true...you do hear more about that now
DrSusan> The message is 1) Build up peak bone mass in childhood and adolescence by adequate calcium intake - 800 mg per day for kids 3 to 8 years and 1300 mg/day for kids 9 to 17 years. And adequate vitamin D. It is less important what the source is.
JBug> Interesting. Many of us arthritics don't drink milk. I didn't even drink it as an infant.
Donna> I have always been a big milk drinker
DrSusan> And the second part of the osteoporosis picture is that whether you end up with low bone density depends on where you started from (peak bone mass) and how fast you lose it.
InsightHostKJ> thank goodness my daughter is a milkaholic
DrSusan> Patients with rheumatoid arthritis are at high risk for secondary osteoporosis. The RA itself contributes as do the steroids that many patients are on.
InsightHostKJ> I was surprised to find that the RA itself contributes to it, I found that out researching the article on extra articular activity
JBug> My doctor has never done a bone scan; but it's a little late now.
DrSusan> Never too late to build bone...bone can be built in the osteoporotic patient.
InsightHostKJ> Bug...maybe you should ask for a DEXA scan
JBug> I hear that Kelloggs is coming out with cereals containing the minimum daily requirements of ALL vitamins.
Donna> I use 1800 Cal ,myocalcin, and eat calcium laden foods
swimmer> Hi everybody
InsightHostKJ> Hi Swimmer. We're discussing osteoporosis while we wait on everyone
swimmer> oh good....
DrSusan> Donna, where do you get the D? From milk/dairy or from a vitamin?
Donna> From Dairy and added to my Calcium, OJ too
DrSusan> Good for you. You need 400 to 600 IU of D per day.
InsightHostKJ> Hmmm....I should probably be taking a supplement, I know i get enough calcium...but I dont know about D
DrSusan> How about a good multivitamin KJ, like a Centrum Silver.
I<i>nsightHostKJ> sounds good to me DrSusan...I'll grab some tomorrow
JBug> Isn't that for us older folks?
InsightHostKJ> LOL Bug....and us young gimps
swimmer> bad ankles, so I can't do weight bearing exercises....how important is that... I now have osteopenia
DrSusan> No question, it's a problem. The best exercise for bone mass is weight bearing. However, you ought to be able to do resistance training on your leg and arm muscles with weights in a sitting position.
swimmer> is biking considered weight bearing at all?
DrSusan> Probably for the spine but not for hips.
swimmer> I am trying to decrease pred...down to 3 mg, however I feel more achey overall and don't feel like exercising.
DrSusan> How fast are you tapering?
swimmer> very slowly. 1 mg over 8 weeks. have been on 5 for 15 years
swimmer> how bad is it to increase pred to 5 mg so I can be active
DrSusan> 6 of 1, half a dozen of another. It's a risk benefit ratio - you need to discuss this with your doc.
JBug> Is there an "average" dose for Vioxx? I'm only taking 25 mg a day.
DrSusan> The company has just released 50 mg Vioxx to be taken for 4 to 5 days at the initiation of treatment. The plan then is for patients to go down to a maintenance dose of 25 mg/day.
JBug> OK, thanks
DrSusan> To my knowledge, there are no studies looking at intermediate dosages such as 37.5 mg of Vioxx.
DrSusan> Now Celebrex has some interesting dosing data. As some of you know, it has been approved for patients with familiar adenomatous polyps at a dose of 800 mg/day.
DrSusan> And it doesn't appear to have any more GI toxicity or edema at 800 md as compared to 400 mg in those patients.
swimmer> I take celebrex....would the increase give RA patients better results
DrSusan> But there are not RA studies to my knowledge of Celebrex at more than 400 mg/day which is the approved dose for RA. So it's not clear whether increasing the dose from 400 mg would give any better antiinflammatory efficacy in RA.
Bandit> I have been reading a lot of good things about Infliximib(sp).....remicade and mtx ...have you personally seen the results of this treatment?
DrSusan> OK Remicade. My associates and I have treated only a couple of patients with Remicade and methotrexate so far. It seems to be effective for some patients but requiresthat the patient be able to tolerate methotrexate. There is no experience yet with other immunosuppressants and Remicade.
Bandit> I am on 35 mgs mtx and tolerate great
DrSusan> People are different.
swimmer> Does menopause create any changes in RA.....just wondering about hormones and all.
DrSusan> RA doesn't seem to either predictably worsen or improve with menopause. Estrogen is perfectly safe in rheumatoid arthritis and doesnot worsen the disease.
DrSusan> Patients with rheumatoid arthritis are at increased risk for coronary artery disease as are post menopausal women.
DrSusan> The studies are still out as to whether hormone replacement of postmenopausal women reduces their risk of coronary artery disease.
Bandit> when the monthly cycle hits I have more ra pain
DrSusan> Interestingl. Were you ever on birth control pills? There is some evidence that use of the birth may decrease your subsequent chance of having RA.
Bandit> 16 yrs ago I was for about 1 year
DrSusan> Besides menstrual cramps seem to be precipitated by prostaglandins, the same chemicals which cause inflammation in the joints in rheumatoid arthritis and are inhibited by nonsteroidal antiinflammatory agents (NSAIDs).
DrSusan> Vioxx is after all approved for dysmenorrhea (painful menstruation).
Bandit> its not my menstruation that is painful its just at that time my ra seems to flare more..why?
DrSusan> Probably some hormonal swings. Not very scientific. LOL.
Donna> I am in the Harvard Medical study re coronary disease studying Antioxidents and they also check hormone replacement
DrSusan> Are you on hormone replacement? Tell us about this study.
Donna> It is a nurses study started 40 some years ago with RNs
DrSusan> Oh, the nurses study. My bestfriend, a nurse practitioner, is part of that study as well.
Donna> we have been subjects for studies of hormone replacement, am now on the antioxident study for the last 4 years. I have found it to be very informative
DrSusan> I think studies like the nurses' study aswell as the Women's Health Initiative will finally tell us whether hormone replacement iseffective or not for preventing heart disease in postmenopausal women.
Donna> Well I am certainly post menopausal!
InsightHostKJ> When can we expect results from those studies?
DrSusan> I think the Women's Health Initiative is aiming for 2006. I don't know about the nurses's study.
Donna> I wish I knew KJ,they have not given us a time limit
InsightHostKJ> Just wondering how close to postmenopausal I'll be by then!
DrSusan> With regard to lupus, ther SELENA trial is in its second or third year. This study seeks to ask whether hormone replacement of postmenopausal patients with lupus is safe or causes lupus to flare.
InsightHostKJ> Hmm...I would think with lupus it would flare
DrSusan> That is what everyone has thought for years and avoided estrogens as well as birth control pills in lupus but we really don't know for sure. So there is a multicentre trial funded by the N.I.H. called the SELENA trial (Study of Estrogen in Lupus Erythematosus National Assessment)
InsightHostKJ> Dr Susan, we were discussing Bandit's options the other night. If you had some with PA and RA that didnt respond to MTX, what would you try next?
DrSusan> Re Bandit, she has failed methotrexate at 35 mg/wk is thatcorrect?
DrSusan> Is insurance a limitation? Usually is?
Bandit> no insurance
DrSusan> A problem. Can you get into a clinical trial?
Bandit> I was going to ask Dr. I think I can get financial aid though
DrSusan> All the other choices are pretty expensive - Enbrel, Arava, Prosorba, Remicade or even cyclosporin. If there is a clinical trial near you, you might beable to get in on some of the combination trials or even a new agent such as the Il-1RA.
DrSusan> If you have failed methotrexate, adding Enbrel or Remicade would be arelatively standard approach, except for the cost. Another accepted combination would be methotrexate and cyclosporin.
Donna> new agent II-1ra?
DrSusan> In clinical trial, another biologic response modifier, like Enbrel.
Bandit> I havent heard of that one
DrSusan> Not available yet.
InsightHostKJ> arent there a couple in clinical trials right now?
DrSusan> Down the road, I think we will be using combinations, perhaps of different biologic response modifiers.
DrSusan> That's why I suggested that Bandit find out what clinical trials are going on in her neighborhood. Look at Gloria as an example of someone who was in an early clinical trial and benefitted.
InsightHostKJ> No kidding....she had nothing short of a miracle
DrSusan> I've seen that same Enbrel miracle with my own eyes in some but not all patients.
InsightHostKJ> too bad there isnt one drug that worked like that on all of us
Bandit> is Enbrel something they would use with mtx?
DrSusan> You can use it without methotrexate but it is more effective with methotrexate.
DrSusan> I am also using Enbrel with Arava in at least one patient but it has not been studied.
DrSusan> The final thing for you to consider if you have no insurance is that Immunex has a program for patients without insurance. And some of the other companies do also.
Bandit> ok Immunex?
InsightHostKJ> Immunex makes Enbrel Bandit
InsightHostKJ> Dr Susan, do you think Remicade will turn out to be the miracle Enbrel is for so many?
DrSusan> My bias (and I admit it is a bias) is that Remicade and Enbrel will target the same patients, those in whom TNF isdriving the disease.
InsightHostKJ> that is what my RD said too...didnt think Remicade would work for me since Enbrel didnt
Bandit> TNF?
DrSusan> If you look at the studies, you find that about 70%% of patients respond to Enbrel and 70% of patients respond to Remicade. No one has yet looked at Enbrel nonresponders to see if they are also remicade nonresponders. But I'll bet they will be.
Bandit> what is TNF?
DrSusan> TNF is tumor necrosis factor, a chemical made by lymphocytes that is increased in rheumatoid arthritis patients and seems to drive the inflammation (and is blocked by both Enbrel and Remicade).
OldRetiredMan> Was that English, Dr. Susan?
DrSusan> I think that there is something different about the Remicade nonresponders compared to the Enbrel responders. I know that people are looking at this right now and I expect that next year's ACR meetings - which are to be in Philadelphia 4 blocks from my office - will have some of these questions answered.
DrSusan> ORM, please forgive me, it was doctorese.
OldRetiredMan> Forgiven, ma'am.
DrSusan> What didn't you get?
OldRetiredMan> necrosis. sounds like a dirty word
TRANSAM> Dr Susan, should you have your neck xrayed by an RA doc if its making really bad sounds inside, and can a bad neck cause nerve compessions which in turn could cause vertigo? Oh ya and will U marry me so I can have my own personal RA doc. Im very good looking.
DrSusan> Question number 2 - I'm married already - and I think bigamy is illegal in PA.
InsightHostKJ> ROFL
TRANSAM> shucks
DrSusan> Question number 1 - rheumatoid arthritis can seriously affect the neck - there are synovial lined joints there and patients with rheumatoid arthritis with neck pain should have flexion and extension views of their neck taken. In addition, having rheumatoid arthritis doesn;t spare you from anything else people can get - including degenerative arthritis, disc disease, arteriosclerosis of the blood vessels to the brain etc.
Melanie> So, this could effect your entire spine?
DrSusan> So, I'd certainly mention my vertigo problems to my doc.
DrSusan> For some bizarre reason, rheumatoid arthritis does not affect the thoracic or lumbar spine, just the cerivcal spine. In contrast, ankylosing spondylitis can affect the entire spine.
DrSusan> But ankylosing spondylitis tends to prefer the larger joints such as shoulders, hips and knees rather than the small hand joints. Go figure.
InsightHostKJ> Nothing about arthritis makes sense Dr Susan
DrSusan> We're ahead of where we were when I started in this business in 1978.
TRANSAM> The ringing in the ears will get louder if the neck is in a certain position. Does that makse any sense doc??
DrSusan> But, we are not there yet.
InsightHostKJ> We sure are getting closer tho.
OldRetiredMan> Way ahead of 20 years ago. My mother had RA, too, and we used to have to ship her all over the country to specialists
DrSusan> I would wonder about a vascular problem, Transam, or maybe a neurologic problem.
OldRetiredMan> RA was a lot less understood and less aggressively treated back then
InsightHostKJ> Do you think they'll be a cure in our lifetime?
DrSusan> KJ question: Cure in our lifetime? I like the word, control, rather than cure. Take Enbrel when it works - it's not acure but it clearly controls the disease in patients like Gloria.
DrSusan> Cure implies it is gone forever. I think control is a more realistic goal.
Melanie> Can you explain how Sulfasalizine is supposed to help RA?
DrSusan> Sulfasalazine. Bizarre drug. We've had it since the 50'sand we still don't know what it does. It's history is that it was synthesized supposedly for RA. It is a combination of a nonabsorbed salicylatefor inflammation and a sulfa molecule that gets cleaved in the gut. The sulfaisabsorbed and the salicylate stays there and reduces inflammation.
InsightHostKJ> so is it a DMARD or a NSAID?
DrSusan> It works for Crohn's and ulcerative colitis because the salicylate reduces inflammation in the intestine.
DrSusan> It's aDMARD in rA because it hasbeen shown to slow radiographic progression as compared to placebo which is definitional for a DMARD.
DrSusan> So why does it work for RA. Two theories at least - 1) either there is
subacute intestinal inflammation in RA - a theory that Don Wiss and others would like - that the salicylate acts on or the sulfa which is an antibiotic acts like an antibiotcs - which is a theory that Soc Jog and the Antibiotic therapy people would like.
InsightHostKJ> snickering
DrSusan> But it does work for some people and it is good in combination with hydroxychloroquine or hydroxychloroquine and methotrexate.
DrSusan> No snickering KJ
InsightHostKJ> sorry! lol
DrSusan> You know, minocycline works for some people too. Just not everyone. It'srelatively slow acting. In my book it's slightly better than hydroxychloroquine alone which I do not use in RA. And it can have side effects too.
Eddie> Why don't DMARDS eventually stop the pain? Do you always need NSAIDS?
DrSusan> First, DMARDs tend to be slow acting. Second, many patients get joint damage early with secondary degenerative arthritis and no DMARD is going to reverse that. That's why we are moving to hitting this diease earlier and harder because we recognize that erosions and joint destruction happensearly.
DrSusan> Still, I have patients on Enbrel or Arava or other drugs whoare not on NSAIDs or take alow or prn dose.
OldRetiredMan> Unfortunately, Dr. Susan, I think that a lot of us put off getting help while joint destruction is in the early stages because we think it's just aches and pains
DrSusan> It's not just you. A lot of docs were trained before we realized this. They think it's only arthritis and haven't learned this lesson.
DrSusan> One of the thingsI try to do is make sure that my students, residents, and fellows learn how serious a disease RA is, that it is not "Just arthritis".
InsightHostKJ> And we all thank you for that!
InsightHostRon> hear hear
Melanie> Amen
OldRetiredMan> Right On!
DrSusan> On the other hand, lots of patients are afraid of the big
guns and ask me, do I have to take these medications with all these potential side effects?
higgy> thats me
OldRetiredMan> The side effects can definitely stink, Dr. Susan
higgy> What do you think of minocyclene?
DrSusan> I think the evidence shows that it is effective for some people.
I think it is more effective than hydroxychloroquine alone.
DrSusan> The O'Dell trials show that it is effective in early RA and it is certainly a very reasonable first drug for many patients. However, it does take longer than some of the other drugs to have an effect and if it
doesn't work, you may have lost time and Time is Bone and Joint Space.
higgy> Good, im trying it along with arava,
DrSusan> Why not? Sounds good to me.
DrSusan> Arava is relatively fast acting so the combination may prevent erosion while you are waiting for the minocycline to work.
higgy> How often should i have my liver checked? Im very healthy and 41
DrSusan> On Arava, it isrecommended that you have blood tests for liver function every month for the first 6 months and then less frequently if the tests are ok. Minocycline itself can affect the liver but there is no specific protocol for testing liver function on minocycline that I am aware of.
Melanie> On Arava, any help for hair loss?
DrSusan> We don't know. It is very much like methotrexate, so I have patients try all the methotrexate stuff like B vitamins and grapeseed extract. There is always Rogaine as well.
InsightHostKJ> Dr Susan thank you sooo much for being here tonight (and putting up with trans)
Thank you for your time Dr. Susan It is very much appreciated
InsightHostRon> Thank you Dr Susan
OldRetiredMan> I enjoyed my first experience listening to you, Dr. Susan
Bandit> thanks Dr Susan
swimmer> thanks for the info Dr. Susan
DrSusan> KJ, thanks for inviting me. If you wish, I'll be back first Monday in May which is I believe May 1.
InsightHostKJ> Wonderful!
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