"Medication Management & Lupus" Chat Transcript for Dr. Joan T. Merrill
May 29, 2008Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Joan T. Merrill.
Joan T. Merrill, M.D., is the Medical Director of the Lupus Foundation of America. She is currently Head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation (OMRF), OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center and Assistant Professor of Medicine at Columbia University in New York City. She received her medical training at Cornell University Medical College, New York, NY, followed by an internship and residency at St. Luke’s/Roosevelt Hospital Center, a fellowship in rheumatology at NYU Medical Center and a basic research fellowship in the Department of Pediatrics at Columbia University.
Dr. Merrill’s research focus is the study of genetics and pathophysiology relevant to atherosclerosis risk in lupus and antiphospholipid syndrome, for which she has received multiple foundation and NIH grants. She has numerous publications in journals such as the Journal of Immunology, the Journal of Clinical Rheumatology, and the New England Journal of Medicine. She is a sought-after speaker at clinical symposia both nationally and internationally.
Dr. Merrill is a member of the Lupus Foundation of America’s Medical Scientific Advisory Council. She is the Co-Chair of the American College of Rheumatology’s Study Group and member of the Food and Drug Administration’s Arthritis Drugs Advisory Committee, in addition to many other active professional appointments.
We welcome Dr. Merrill, and thank her for joining us this afternoon.
Without further delay, let's begin. The first question comes to us from Omaha.
Moderator
My daughter has class 4 lupus nephritis. She is on Myfortic. She takes two 370 mg pills in a.m. and 2 in p.m. What is the time frame for being on this med? Are there any adverse affects for being on it a long period of time? -- Omaha, NE
Dr. Merrill
Usually the treatment at higher doses of immune suppression is a MINIMUM of six months, but could be longer if the response is slow. The important thing is to handle the nephritis. There are lots of possible side effects of this treatment but the doctors are very likely monitoring your daughter and can nip most of them in the bud. The main thing that could happen in between visits would be increased susceptibility to infections, but those are usually pretty evident and treatable.
Moderator
CellCept had worked well for me for 2+ years. By year 3, it became ineffective. Having been off of CellCept and now on Imuran for 9 months, is there any data to support that going back to CellCept may be worthwhile? May be harmful? Why do most of my drugs seem effective for 1-2 years, then I need to switch? -- Denver, CO
Dr. Merrill
It could be that your body is struggling to figure out how the immune system is going to do its "real business" with the drug on board ... so in surmounting the effects of one treatment it might stop working as well. The problem answering your question is that I am not sure what aspect of lupus is being treated. We do find clinically that you can switch back to an old medicine that used to work and stopped working after an interim on another but it depends on what’s wrong with you now AND importantly, it doesn't ALWAYS work.
Dee
I developed an allergy to Plaquenil and had to stop taking it. I haven't been on anything since. Is it possible that my lupus is in remission as I don't seem to have many symptoms, and if so, how long can remission last?
Dr. Merrill
If you are being followed by an experienced doctor then you will be monitored for anything that needs to be treated. You can certainly talk to this doctor about what tests are being done and why you should or should not have confidence you are really in remission. Lupus can be active in people who feel clinically well. Remissions are unpredictable and can last variable amounts of time, occasionally even forever … the good news is that this can happen. The important thing is to be sure it has happened.
john
Dr. Merrill, I am a 39 year old white male and was diagnosed with discoid lupus 1 year ago. I am having patches of hair loss and have recently been having an itchy scalp. What do I do?
Dr. Merrill
There are a number of possible treatments. The best person to see is a dermatologist who might be able to provide immediate relief with injections in the scalp. There are some new treatments available for discoid lupus. It is likely (but of course I am not certain) that this hair loss is related to discoid flare.
Moderator
What are the current medications being used to treat lupus with kidney involvement? -- New York City, NY
Dr. Merrill
In the last five years, the standard of care had evolved from being primarily cyclophosphamide to being more often CellCept (mycophenolate mofetil). NEITHER of these agents is approved by the FDA for lupus and you should be very angry that after forty years we do not have approved effective treatments. Each of these is only known to induce a little over 50% remissions within six months which should be the gold standard. Right now there are several ongoing clinical trials of biologics for nephritis and the idea is to add them on to these baseline drugs to improve that 50% mark … we will not know the results of these studies for another year or more.
ExhaleBabs
I was recently placed on prednisone again on 4/24. The past four days, I began to gain weight and then began to experience water retention, edema in my feet, ankles, legs, hands, and stomach areas. (The most painful area has been in my feet and I cannot wear shoes or socks). I have found that when I elevate my feet, that the swelling lessens. Is there anything else I can do to relieve the pain, reduce swelling, and get rid of the water retention?
Dr. Merrill
Prednisone is well known to cause these symptoms. I am a little concerned about why your feet are THAT MUCH swollen. If you have nephritis and are spilling protein you need special treatments that can keep the kidney from spilling that much protein. I am guessing from what you are saying that this MIGHT be the case but I don't know that from what you have told us … ask your doctor if you are spilling more than 3 gms of protein/day … if you are you need an ACE inhibitor or an angiotensin receptor blocker or both.
jess
Is it safe to be on pain killers such as Percocet for long periods of time? Are there any side effects of doing so?
Dr. Merrill
There are a number of side effects the worst being interaction with your other treatments and addiction. Addiction does not mean you are a bad person; it just means that you need greater and greater doses to have any effect until it doesn't work at all. Optimally you should not stay on painkillers, but have the cause of the pain treated as aggressively as would be appropriate.
Moderator
How do you feel about the use of prescription strength Ibuprofen vs. Celebrex? Would it be as effective? My health insurer wants me to make this change. -- Bainbridge Island, WA
Dr. Merrill
Ibuprofen at high doses is probably more effective and definitely a lot more toxic than Celebrex. If Celebrex works for you, your insurance company ought to go jump in a lake.
(sic) my original statement was much more inappropriate.
labmonkey
Do you have any thoughts on Prasterone for maintenance therapy?
Dr. Merrill
Yes I do. I had many patients in the original Prasterone study and although it did not meet its primary endpoints, I was impressed by how many of my patients thought it REALLY helped their fatigue, something that plagues my patients. I think it is reasonably safe, but if you are a man you need to do a PSA and if you are a woman there are issues with long-term exogenous use of androgens.
Moderator
How can you keep lupus in control when you have diabetes too? -- Phoenix, AZ
Dr. Merrill
Well, it would be nice if you could avoid steroids, but you can't always avoid them. So … you need to be on a home finger-stick regimen of regular insulin any time you are on, or tapering steroids. Remember as you taper steroids you could get hypoglycemic from certain oral meds or insulin unless you are watching your blood glucose (sugar) closely.
Ayanna
Is baby aspirin effective in terms of antiphospholipid syndrome?
Dr. Merrill
There are some data that it is effective in preventing recurrent strokes and miscarriages in people with APS. But this is not true for all patients. This is a controversial and understudied area.
We hope that some companies are getting more interested in developing better drugs for APS soon.
Moderator
Can you speak to the use of human growth hormone (HGH) for SLE? -- Dripping Springs, TX
Dr. Merrill
No.
john
Have you ever considered researching any homeopathic type of care? If so, great. If not, why not?
Dr. Merrill
Actually, this is not exactly homeopathic, but it is certainly natural. Vitamin D deficiency might be an issue in SLE and is currently receiving a lot of study. I don't really know anything about homeopathy.
Moderator
Being diagnosed with RA and Lupus (SLE) on my 50th birthday, how can I best manage meds as I get older? (I am 51 now) -- Saint Paul, MN
Dr. Merrill
There is a whole study of medications in older people, but you aren't that old yet … basically meds can be a little more toxic as metabolism changes … often smaller doses are used in the elderly (often quite effectively). However you are an individual and you do not meet my definition of old.
Which is that you must be older than me.
Dee
I've had a real problem with insomnia for over 6 months now. My dr. has tried almost every sleeping pill there is and nothing helps. It takes me hours to get to sleep, I've tried every holistic way also, but as tired and exhausted as I am, I barely can get to sleep. Do you know of anything that can be used, Dr. Merrill? Thank you!
Dr. Merrill
Yoga. That is not a joke. It really works.
Moderator
I've heard there is a blood test that can help determine the right dosage of Imuran in an individual and help reduce toxicity. What is the blood test and why don't doctors routinely order it for patients on Imuran? -- Decatur, AL
Dr. Merrill
Yes, it has to do with how people metabolize 6 mercaptopurine. I myself do not usually order it, because all it does is predict that you might get lower white blood counts or elevated liver enzymes at somewhat lower doses than you would if you did not have this positive blood test. It does NOT tell what that specific dose is for you as an individual. So it’s equally safe and effective to start Imuran at a reasonably low dose, check the much cheaper WBC and CMP and gradually raise the dose as tolerated and/or needed. It’s really just as good medicine.
Mom
How do estrogen patches affect patients with lupus when we think estrogen could be a factor in the lupus diagnosis?
Dr. Merrill
Because there was an NIH funded study of the safety of estrogens (both oral contraceptives and hormone replacement) in lupus that showed that this is actually reasonably safe in most lupus patients. The estrogen story is a little complicated. In fact you might have noticed that you tend to flare a bit just before your period. That is when estrogen is low, not high. Also, there is some work suggesting that people with lupus metabolize (break down) their hormones to different types of estrogen. This might not have a whole lot to do with whether you can tolerate estrogen in pills.
Moderator
I was diagnosed with SLE and Level IV nephritis 2 1/2 years ago and have been on 1 gm. of CellCept a day and 20 mg of Prednisone every other day, since. I have no symptoms of lupus except an occasional bout of pleurisy which lasts a few days. What is the recommended length of time to continue with CellCept and prednisone if lab values are normal and I am relatively symptom free? -- Tokyo, Japan
Dr. Merrill
This completely depends on the urine tests. If you are still spilling protein you probably need to be on at least CellCept. However, if you are spilling NO protein, if your anti-dsDNA test is NEGATIVE (which is not too common after Class IV) and if all else is fine, it would be reasonable to start tapering. You need to talk to your doctor about the reasons you are still on both CellCept and prednisone. There may be good reasons.
Tiana
I have lupus nephritis, myositis and I had P.Embolism and DVT. What is your opinion about being on coumadin for life?
Dr. Merrill
Yes!
Moderator
My lupus was under good control with 1500mg CellCept + 15mg Prednisone a day, until I Zoster Ophthalmicus from being immuno-compromised and had to stop the CellCept temporarily. After several months my eye is finally back to normal but now I'm afraid to go back on the Cellcept. Is it better in the long run to deal with more symptoms of active lupus or risk getting some type of illness like the Zoster from being immuno-compromised? -- Des Moines, IA
Dr. Merrill
You are right about the issue, but the answer is not one size fits all … optimally we would make that decision weighing your particular risks from the type of lupus activity you have versus the increased risks of infection. That’s really an individual judgment that you and your doctor need to discuss.
Moderator
We work in a hospital in Saudi Arabia. My friend Liza is diagnosed systemic lupus. She is a medical clerk in our ER. I wonder if she would qualify to take part in some of the medical trials with new medication. I am from TN but work in Al-Khobar in Saudi Arabia. -- Chattanooga, TN
Dr. Merrill
Each clinical trial has its own set of entry criteria and rules, so we can't know if your friend would qualify for any of them. I do not know of any clinical trial sites right now in Saudi Arabia, however, there are more international trials going on now.
Jana
Is it possible to develop tolerance to Plaquenil such that it becomes less effective over time? If so, what might be the next step in medication to control the symptoms of fatigue, joint pain, etc.? Thanks.
Dr. Merrill
Sometimes if it is just fatigue and joint pain, without too much swelling in the joints, I try either raising the Plaquenil dose for a couple of months or just a steroid shot to get the person through the "hump." Otherwise you could consider low dose azathioprine or Prasterone. Only Plaquenil and prednisone are approved by the FDA for lupus … however, most experienced lupus doctors use many other treatments.
cjr
What is intractable arthritis? I have lupus and the arthritis keeps progressing. I have been on prednisone for six years, Plaquenil for five years, and now methotrexate for one year. I had to stop Imuran and ARAVA due to liver test results.
Dr. Merrill
I don't know what dose of Methotrexate you are on but you could consider (with your doctor) raising the dose if you are not on top dose already … otherwise you could try CellCept or ARAVA, or enter one of the biologic drug trials if you want to and if you are qualified.
lupusgirl
I was placed on prednisone for 2 years now I'm off of prednisone. I gained about 40 pounds and I want to lose the weight. What do you suggest? I still take Plaquenil daily and Mexthotrexate once a week.
Dr. Merrill
Time will help you in losing the weight, but unfortunately it may not be enough … when you figure out an easy way to lose weight please let me know … the hard way is daily exercise and a responsible diet.
Moderator
My son is taking CellCept 3000mg/day for what has been diagnosed as lupus cerebritis. He is currently weaning off of prednisone, and is down to 7mg/day. He is having symptoms return of confusion, headaches, tremors, bright redness over all the joints and face. Is there another medicine that can suppress his immune system and not cause PML? His doctor said that PML can come with the lupus, and maybe not from the CellCept? I read about the warning letter from Roche. What should we do? -- Stow, OH
Dr. Merrill
PML from CellCept is rare. PML can also come with other treatments for SLE. His doctor is right. It is definitely not OK to let these symptoms come back. I would not worry about the PML … that is a lightning bolt that rarely strikes. I wish I knew of a way to modulate the immune system without allowing any increased risk for infection. Many people are studying this but right now we have to work with what we have.
Ayanna
Is it normal to respond well to a low dose of Plaquenil and no other medicine for lupus? Are there different degrees of lupus?
Dr. Merrill
Lupus is very very very very variable from patient to patient and from time to time even in one patient. If you have responded to Plaquenil you are LUCKY because it is one of the safest medicines we have.
Totallylupee
How many people on average have low blood platelets, with lupus?
Dr. Merrill
If you include people who have platelets a little bit low it could be as high as 20% … the very low platelets are probably less than 10%.
oreo
I have been diagnosed with lupus for 10 yrs. and have been diagnosed with polymyositis in the last 2 yrs. My doctor has me on cyclosporine. How do you feel about this drug? He said this was the only drug that he knows that will treat both. Is this true?
Dr. Merrill
Cyclosporine is highly effective. Make sure he watches your kidneys. I don't know if its the only POSSIBLE drug but its a good choice.
Moderator
I have had two strokes that were caused by lupus vasculitis (?) and now on a regiment of 1500 mg of CellCept and will be increased to 2 grams later in the week. How effective has this worked in the past with lupus patients and even though it is not "curing" the disease has it proven or helped so that the vasculitis does not return? -- Sisters, OR
Dr. Merrill
I am not sure what type of vasculitis you have, but CellCept is a good choice to try. There is no way to predict which patients will respond to which treatments at this time and there are no scientific studies (of good caliber) to tell us what percent really respond. But in the clinic, we have had good success in some patients. If you do not respond, your doctor will find something that helps you.
Twiggy
I’m on Plaquenil indefinitely. Why? Also my memory and the ability to retain information and focus is very poor. My doctor does not feel that this is related to the lupus because my blood test does not reveal any lupus activity.
Dr. Merrill
Cognitive dysfunction is very common in people with lupus and it is thought to be from many causes. Lupus is only one possible cause. Chronic illness is very stressful and can cause depression. Fatigue is a MAJOR cause of cognitive dysfunction. My patients do stay on Plaquenil indefinitely because it is very safe (as long as your eyes are monitored) and may help decrease low grade blood vessel inflammation … and data from Canada suggests that it prevents flares.
Moderator
Do you have experience using supplements like L-carnitine or CoQ10 to alleviate fatigue symptoms and, in turn possibly help memory problems? -- Toronto, Ontario
Dr. Merrill
No. I am ignorant about this.
Moderator
I have lupus and Crohn's disease. I am to participate in a clinical drug study that suppresses the IL12 blood component. Will this have repercussions or cause a flare for lupus activity? -- Florham Park, NJ
Dr. Merrill
I am presuming that this is a Crohn's study. It is interesting that many clinical trials require someone to NOT have two autoimmune diseases. You should ask the study nurse if you are allowed to be in this study if you have lupus … the question about IL12 is very interesting, and I might be a little bit concerned.
john
I have discoid lupus and have had several ANA tests which have come back negative. What does this mean? Is it possible to have a positive ANA without having SLE?
Dr. Merrill
Many people with discoid lupus have negative ANA, and many people with positive ANA don't have any lupus at all … the only thing an ANA is good for is to help confirm a diagnosis of SLE because MOST people with SLE have a positive ANA.
Lyn
I have been recently diagnosed with lupus, and other than some weight loss, nothing "looks" wrong. How do I convince my family that I am ok but I get so tired easily?
Dr. Merrill
I am not sure what your position is in the family. If you are a daughter then you need to tell your parents that you are not planning to put your life on hold, you will be responsible, but you are going to do things. If you are a mother or wife, you need to say "well I am too tired to do this particular thing, but I am NOT too tired to make some alternative plan … " educate them about what to expect and help them help you to get on with your life.
Moderator
My daughter is 33, diagnosed 6 years ago with SLE (antiphospholipid) now with cerebral lupus and daily seizures. She has been changed to Lovenox because of many clots and is on prednisone (Cushinoid). Now MD has started MTX and wants to include whole brain irradiation. Another Dr. suggested IVG, but BC/BS won't pay for it. I am worried about the effects of radiation and in my own research haven't seen any evidence that it will help. And what about IVG … is this really a treatment? -- Southborough, MA
Dr. Merrill
Prednisone CAUSES cushinoid symptoms but is probably being used to try to treat the lupus. I don't know any evidence that radiation would help here. I really like the idea of IVIG … your doctor needs to fight with your insurance company. Insist on it.
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Joan Merrill for joining us.
Please join us at a special day, Tuesday, June 10 at 3 p.m. Eastern, for our guest Dr. Jennifer Grossman, who will host a chat called “Men’s Health & Lupus.”
Help spread the word about our lupus chats. See you on Tuesday, June 10th.
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