Home Community Chat Transcripts-3/5/01

Arthritis Q & A with Dr. Barry Waters

InsightHostKJ> Our guest tonight is rheumatologist Dr Barry Waters. Dr Waters will be answering our questions about arthritis. Please type a ? if you have a question and wait to be called on to ask it. DO NOT ask your question until I call on you. Let's stop the general conversation and get started with out Feature Chat

InsightHostKJ> Thanks for coming Dr Waters!

DrWaters> You're welcome

Crystal> I have just been diagnosed with AS (Ankylosing Sponbylitis), but the gene that goes with it, I tested negative for it, does that mean that I can still have it?

DrWaters> Yes - only 85%% are HLA B-27 +, the rest are not.

meredi11> First, I have JRA. I have a build up of synovial fluid on right hand surrounding knuckles on the hand itself...I am now experiencing not being able to straighten my hand completely, is this why? it is very painful for me.

DrWaters> The fluid is because the inflammed synoviaum (joint lining) leaks fluid. The fluid and subsequent joint and tendon damage make it hard to move,

meredi11> I am going to have surgery for the removal of the fluid in May, because of college classes, is it possible that they fluid has already caused a lot of damage? I have had the surgeries before on both hands (twice on left, last being Dec 2000) and I have never had this problem with not being able to straighten my hand.

DrWaters> I never heard of surgery to remove fluid from a hand. Normally this is treated with medication. If the arthritis is not being treated aggressively enough deformities will develop.

meredi11> they call it a synevtomgy (spelling?)

InsightHostKJ> Medreddi....do you mean a synovectomy?

meredi11> I already have the deformities

DrWaters> Normally that's more of a last resort kind of thing.

meredi11> i am on Vioxx and gold injections

DrWaters> You need much more aggressive treatment such as MTX + Remicade (or Enbrel).

meredi11> i was on MTX, wasn't working very well, on it for 3 yrs this last time, so went to gold injections

DrWaters> We can't get into individual treatment here, but suffice it to say you need a second opinion.

Vickie> I have RA , am taking enbrel, Is high blood pressure a side effect?

DrWaters> that's not a usual side effect.

Crystal> I was wondering what medications to ask my doctor about, so far I have taken Naparoxen, IB Proffen, Lodine, and Vicaprofen, the Vicaprofen is the only thing that is helping so far, and I can only take it at night, so if it hurts during the day I have to suffer. I would like to know what you suggest?

DrWaters> What's your diagnosis?

Crystal> AS

DrWaters> Enbrel is the best for AS, ask about that. It's a miracle drug for AS.

InsightHostKJ> Dr Waters what has your experience been with Arava? Effective? What side effects have you seen?

DrWaters> Arava is very effective. It can cause diarrhea, loss of hair, anemia, liver test elevation. I'd say around 75%% have no significant side effects and it works around 75%% of the time.

InsightHostKJ> If someone was already very anemic would it still be okay to try it?

DrWaters> KJ - yes - because often effective treatment of RA improves the anemia.

sheryl> Would it be unusual for systemic onset jra to be confused with erythema multiforme in a 2 1/2 year old.

DrWaters> E. multiforme and systemic JRA could look very similar in the beginning.

sheryl> Is the distinction length of time and/or presence of arthritis?

DrWaters> The distinction is the eventual appearance of the rash. The rash of E. multiforme is different than the JRA rash when it develops.

oops> You said that enbrel is a wonder drug for AS. I have AS and my doc prescribed Remicade before he tried thje Enbrel. Does this makes sense to you?

DrWaters> Remicade should work as well.

oops> ok, ty. am curious be cause the remicade has lost its effectiveness

DrWaters> Remicade can be increased as high as 10mg/kg every 4 weeks. You need to ask about that.

Crystal> I have AS started in my pelvis, I was wondering about having children, if it would effect it

DrWaters> Bad AS is rare enough in women that it's not well known if it's a pregnancy problem. I would be surpised if it will be much of a problem except for increasing chance of needing a C-section.

ecs> Have had alot of problems with Plaquenil, just diagnsoed in dec. Had CNS type problems. what is probably next for me, or what should I aks about.

DrWaters> Your doctor should recommend something based on the whole big picture. There are a lot of good options, so no point in staying on Plaquenil if it's causing problems.

TweetAngel1977> I was taking Ridaura (gold pill) and when i got my blood work done they told me i had to stop cause my white count was too low.. less than half of what it should be..coudl that be from the Ridaura or is that just a symptom of RA?

DrWaters> Either, but better safe than sorry.

DonnaM> I seem to have perodic bouts of hoarseness several times a day. Could this be associated with the RA

DrWaters> Yes, you could have Sjogren's syndrome, or athritis of the little joint by the voice box, etc.

DonnaM> what to do about it?

DrWaters> See ENT doctor.

meredi11> you mentioned Enbrel and Remicade as possible meds to ask dr. about. Are they NSAIDS and what are the common side effects with both?

DrWaters> Meredi needs major refresher course. I'll let KJ send her some info later. Obviously there's a big problem with her doctor's communication with her on one side or the other or both.

InsightHostKJ> med...email me at tina@arthritisinsight.com and i'll send you some links

Vickie> After trying gold shots, methotrexate, arava, and enbrel, what would be the next step for RA?

DrWaters> You mean all together?

Vickie> Separately.

DrWaters> Usually MTX one day each week + Enbrel (or Remicade).

nsightHostKJ> Dont most DMARDS work better in a combo than alone?

DrWaters> Yes. Most of my patients are on 2 or 3.

Vickie> I can't take methotrexate anymore

DrWaters> Vickie - Arava + Enbrel is good. Often I use doxycycline with the others, too.

oops> Have the doctors found a link between nemia and arthritis? Is there a scientificly known reason for so many arthritic people to have anemia? ( many arthritics i have talked to have had the anemia before taking arthro meds.) Just wondering if docs have found a reason for this

DrWaters> All chronic inflammatory disease cause anemia, it's fairly well understood how and why.

ecs> Another problem I have is that I feel like someone is sitting on my chest. Since off the Plaquenil, I am just on 5mgs Prednisone and Flexeril at night until I see him again in april. No colds etc. going on. Can this be due to such a small amount of prednisone. It happens mostly in the am and at night. I also have heart murmer which seems to be more active.

DrWaters> Prednisone would not cause chest pain. You could have fibromyalgia, reflux, etc. It needs to be checked out.

suzie> my daughter takes 20 mxt a weekend 20 mg prednisone daily and 150 mg sulindac twice daily with folic acid and tagament.. she is 11 and weighs about 100lbs her flare still isn't totally under control what is next???

DrWaters> Should have been on Enbrel or Remicade long ago. 20 mg Pred is high.

Di> D.R.Waters have tingling pain and numbness in thumbs. Were splints it helps but when taake off its right back.Any suggestions?

DrWaters> If you have carpal tunnel then cortizone shots might be next treatment.

Giggles> have you heard if Arava can cause lung problems at all..since being on it (7 months now ) I have had two doses of Pneumonia..and just waiting for results to come back to see if I have it again. just coincedence?

DrWaters> Arava can cause infectious pnumonia by suppressing immune system, just like other DMAR's. Whether it can alone cause noninfectious pneumonitis, like mTX can, is still not known.

ecs> Are there any complementary therapies that are showing promise in RA therapy, supplements, herbs, etc. I know we need to be careful, but wondered. I do take my calcium with D everyday.

DrWaters> No, not really. So far, herbs are for the birds.

InsightHostKJ> Dr Waters....you use doxycline for RA? Does it work well?

DrWaters> In some patients it's incredible.

InsightHostKJ> what doseage?

DrWaters> 100 mg bid

InsightHostKJ> any side effects?

DrWaters> Sun burn too easily, yeast infections, anything else is rare.

Marsha> I'm in the midst of a nasty ra/fibro flare...hips and hands worst...would trying to walk on treadmill do worse damage? Should I wait until pain is gone?

DrWaters> RA/Fibro flare is a oxymoron. Which is flaring?

Marsha> RA in hips and hands

DrWaters> Unless inflam bad, walking would provide more good than bad.

InsightHostKJ> Alrighty then..any closing thoughts Dr?

DrWaters> I know everyone is different, but it still amazes me how many patients with RA are being undertreated. The thing with Meredi makes me sick.

InsightHostKJ> What should we as patients do to prevent that from happening?

DrWaters> Do you think there are really that many bad rheumatologists, or do the patients share the blame?

InsightHostKJ> I think its a little of both..but I do know people have told me that their RD's wouldnt use Enbrel or Remicade the first two years, they wanted to wait and see how others did on it, i think that is horrible

DrWaters> That is very sad, especially in JRA so bad a college kid is having her 3rd hand operation.

meredi11> would be 8th

InsightHostKJ> We as patients need to be as educated as possible about our options

meredi11> but not all synevectomies

DrWaters> How many years have you had JRA?

meredi11> 17

InsightHostKJ> And we need to find doctors willing to listen to what we say...there are still some docs that dont like having an educated patient

DrWaters> I guess then its not so much an issue of treatment as someone taking the time to teach you about the different medications, the mechanism of the disease, etc. We need more patient education.

DrWaters> Last ?, ok.

DonnaM> DR Waters have you decided to join us in Chicago in May?

DrWaters> Sorry, just too busy. Also, can't trust people you meet on-line. How do I know you're not serial killers?

DonnaM> come find out

DonnaM> 3-6 of May

DrWaters> KJ - can you email me the itinerary and stuff and I'll reconsider, but very doubtful.

InsightHostKJ> Okay dokay Dr Waters....thanks so much for coming

DrWaters> OK, bye.

InsightHostKJ> Thank you!