Chat Transcript - Dr. Joan Merrill, December 6, 2006
Live Chat with Dr. Joan T. Merrill
What Is New for Lupus Research and Treatment
Moderator:
Good afternoon. Welcome to the first live lupus chat on our website, www.lupus.org. These chats are a service of the Lupus Foundation of America (LFA), the nation’s leading nonprofit voluntary health organization dedicated to finding the causes and cure for lupus.
For our first chat, we are pleased to have as our guest, Dr. Joan Merrill. Dr. Merrill is the medical director for the LFA. She also is Member and Head of the Clinical Pharmacology Research Program at the Oklahoma Medical Research Foundation (OMRF), and OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center.
She received her medical training at Cornell University Medical College, New York, 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 at Columbia University. She is the Co-chair of the Lupus Biomarkers Working Group, a member of the Systemic Lupus International Collaborating Clinics, and part of the Planning Committee for the International Lupus Congress to be held in Shanghai in 2007. She is working closely with the LFA to organize the patient education symposia in Shanghai during that meeting.
Dr. Merrill’s research focus is the study of genetics and pathophysiology relevant to lupus and antiphospholipid syndrome, for which she has received multiple foundation and NIH grants. She has authored numerous publications and is a consultant on clinical trial design and outcome measures for pharmaceutical companies developing new treatments for lupus.
If you would like to submit a question for Dr. Merrill, you can e-mail the question to question@lupus.org or click here to use the “Submit a Question” form.
We will try to get to as many questions as we can during the one hour time period. We apologize if we are not able to get to your question. However, if you would like to receive a response, please send your question to info@lupus.org and include Chat Question in the subject line.
During the chat there will be an obvious delay from the time we pose the question until Dr. Merrill can submit her answer. Please be patient.
Let’s begin by welcoming our guest, Dr. Joan Merrill. Good afternoon Dr. Merrill.
Dr. Merrill:
Hello, everybody. I am sitting here with a cup of strong coffee waiting for the questions.
Moderator:
That’s great. Our first question for Dr. Merrill comes from Sarah in Elkhart, Indiana. Can you please discuss the mediations CellCept and Rituxan in lupus. Are they the new drugs of the future for lupus?
Dr. Merrill:
It is very exciting that several new drugs are being studied, targeted to areas of the immune system that are disordered in lupus. Right now both of the treatments you mention, CellCept and Rituxan are in what are called Phase II or III studies. This means that they are thought to be promising but we are still waiting for study results to be sure exactly where they might or might not fit into the care of most lupus patients.
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Moderator:
Our next question is from Lori in Rockford, Illinois. After being on prednisone, plaquenil, methotrexate and cytoxan for most of the 12 years since being diagnosed, I am hoping that soon a new drug may come on the scene. Is there anything new in the works regarding treatments? Thank you.
Dr. Merrill:
Well see my first answer, but the real excitement for me is that not only are treatments like CellCept and Rituxan, which are approved to treat other illnesses now being studied for lupus, but some totally new agents are being investigated….specifically DESIGNED to treat lupus…we know of 15 of them right now in early clinical development….but we will not know how useful they will be for a few more years.
Moderator:
From Amy in Boise, ID: I have just been reading about new medications that suppress menstrual periods to something like only four times a year. Would these products be a good idea for women with lupus? It seems like symptoms are worse around that time and I am wondering if suppressing the cycle would be more helpful or harmful in management of the symptoms?
Dr. Merrill:
No, this would not necessarily be recommended. Although there is an interesting relationship between hormones and lupus, it is poorly understood.
Moderator:
Our next question is from J.D. in Holem, WI: I have Primary APS. Can plaquenil help me? My doctor says it is only for lupus patients.
Dr. Merrill:
I think there are some good reasons to use plaquenil in primary APS and they are as follows: 1) some people with primary APS do have fatigue and joint aches which are lupus-like symptoms, even if they do not have systemic lupus; 2). Plaquenil has a mild anticoagulant effect….it dampens down one of the blood clotting elements, platelets. 3). Several preliminary studies suggest it might have some protective effect in blood clotting…. Others do not confirm this…4). Plaquenil is very safe. There is a rare, potential eye toxic effect but that is not something you need to worry about if you are appropriately monitored by an eye doctor.
Moderator:
This question is from Lonie in Baton Rouge, LA: I’m a 44 year old male and have had systemic lupus for 5 years. I take Plaquenil 200mg/day, prednisone as needed, Toprol for blood pressure Ativan 2mg 2xday. I have no major organ activity. My main problem is cloudiness when I get overloaded with work, when I can't solve a problem, when a stressful situation occurs, or when there is a change in the weather. The Ativan helps but then it wears off in about 3 hours and also the Ativan makes me tired, sleepy etc. when I have the cloudiness my b.p.rises and I feel like my nerves are on edge. I feel like I am totally dysfunctional. Any recommendations of drugs that I could ask my doctor about that would keep my nervous system on an even keel. Thanks.
Dr. Merrill:
Lonie: I do not know the cause of your symptoms. It could be a combination of fatigue, drug interactions from your other treatments, possibly thyroid dysfunction (make sure they have checked that) or depression. Or it could be something more serious. So there is no easy way to diagnose and treat this fog you describe….but….what you need is a lot of patience and possibly some consultation with various specialists relative to what I listed above.
Moderator:
This question comes from Sharon in Sault Sante Marie, MI. What is actually happening inside your body when you are experiencing a flare with lengthy fatigue, and how do you know when it is time to seek a specialist, I am leery of crying wolf so to speak.
Dr. Merrill:
If you were my patient, I would say the following: I recognize that you don’t want to cry wolf, but it sounds to me like this fatigue is really bothering you. I might not be able to help you with this immediately, but at each visit we will see what we can do to get to the bottom of this and try different treatments. Fatigue is very common in lupus patients and you can try all the reasons I listed in my last answer PLUS the chronic inflammation. So little by little we need to see what range of things is going on and try to address them.
Moderator:
This question comes to us from DRP in South Padre Island, Texas. My son was just diagnosed with lupus nephritis 2 months ago 09/25/06. He is doing very well with treatment of prednisone and IV Cytoxan. Is he getting the right treatment and what does the future hold? I am a very concerned parent. It is hard for me to accept this since he is only 12yrs old. I was diagnosed with the same problem 8 yrs ago and today I am back to normal without medication. Please let me know what the future holds for my son. Any new treatment, and research in the future that might help?
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Dr. Merrill:
Your son is getting aggressive treatment and this is totally appropriate in a boy his age with lupus nephritis. Lupus is very unpredictable. But lupus can be quite severe in children and males sometimes. So early, aggressive treatment is totally warranted. If they got to the problem soon enough you can be cautiously optimistic that this will go into remission. He will still need close monitoring and maintenance treatments for some time to come and aggressive treatment for any new flares. If all goes well he can have a completely normal life.
Moderator:
The following question was submitted by F from Detroit. My 19yr old daughter has lupus. She is s sleeping a lot. Is this a sign of lupus getting worse? She has lupus nephritis we found out when she was 17.
Dr. Merrill:
There could be a few reasons why she is sleeping a lot. Teenagers have a very tough time with lupus. Prednisone, which they frequently have to take, causes acne and weight gain. It is common for teenagers to get depressed. The best way to be sure the lupus isn’t flaring is to have a thorough check-up with the rheumatologist. If it isn’t the lupus, the whole person needs treatment, and she may need counseling or support (the local foundation may have resources for that).
Moderator:
Here is a question from KS in Reno. Can you explain to me the significance of anti-neuronal antibodies in the course of someone with lupus? In this case, the average range is from 1-10 and the value for this patient is 55.
Dr. Merrill:
If the patient has no symptoms there is no reason to worry about these antibodies. They are often found in people where there is no known damage from them. However, they can be associated with some symptoms in the brain. Severe brain (CNS) lupus is very rare, however. And, interestingly, it is usually very responsive to treatment. So, scary as it is, most of the patients I have treated for that have been back to normal in less than a month.
Moderator:
Phillip from Temecula, California submitted: Hi. I've been diagnosed with lupus approx. 1 yr ago, prior to that, it was Fibromyalgia. My question is, can SLE cause everyday pain lasting for 3 1/2 years. It's been that long since my muscle & bone pain started and is everyday, especially after any light activity, even prolonged standing. I'm finding it hard to believe it is lupus. Please provide any insight on this dilemma. I thank you for your time and response.
Dr. Merrill:
Pain is a complicated issue. Sometimes the treatments that are used to treat pain cause pain as they are withdrawn. This leads to a vicious dependency on them. Sometimes depression causes pain, or a sleep disorder (which is what people think Fibromyalgia is). However, if you have lupus arthralgia (joint pain) or myalgia (muscle pain) you might respond to more aggressive immune suppression.
Moderator:
Roy in Buffalo, NY asks: My 17 year old son was diagnosed last spring with some initial symptoms of SLE (butterfly rash). Will his condition inevitably develop into full-blown SLE?
Dr. Merrill:
This is a hard question to answer. MOST people with primary skin lupus (primary cutaneous lupus) do NOT get systemic lupus. However, in a 17 year old boy I would be very careful and make sure he is followed by a rheumatologist, because he may have a somewhat higher risk of getting other organs involved.
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Moderator:
Here is a question from Jocelyn of Manila in the Philippines. My daughter, 15 yrs. had been diagnosed with SLE last September 2005. She had a flare last 12/20/2005, had meningitis (slight only) and she suffered a stroke (right side paralysis). She was given pulse therapy and antibiotics for meningitis. She is doing well now and is back to school. Her maintenance is aspirin, 15 mg. prednisone and calcium. Her menstruation came back 2 months ago. However, she is complaining of severe joint pains (shoulder, knee, fingers) every morning for about a month now. Her doctor only gives Tylenol 650 g. for pain. The pain does not disappear until we give ibuprofen 2 or 3 times a day. My question is: How can we lessen the pain without the Ibuprofen 3x day. I'm afraid of the long term effect.
Dr. Merrill:
It sounds like she might have arthritis. Have you called the doctor to be sure the doctor is aware of this problem? Teenagers are not always good communicators in a doctor’s office. She needs to be examined for arthritis or severe arthralgias or muscle inflammation and treated for those if they are still active. Another possibility is that rarely some muscle problems can be caused by prednisone. The doctor really needs to be made aware of the problem.
Moderator:
Our next question was posed by O.K. from New York City: What can you tell us about treating Lupus when it is diagnosed in a cocaine dependent patient?
Dr. Merrill:
People who are addicted to cocaine and are diagnosed with lupus have two potentially life-threatening conditions. So while treating the immediate problems related to lupus, there needs to be careful attention to the following immediate issues: a.) keeping the blood pressure under control, b.) being sure the cocaine has not already damaged the heart, and c.) getting that person into a program to stop the drug and rehabilitate them. Otherwise it might not be possible to give them the best care.
Moderator:
Donna from Liverpool, NY writes: I have been out of remission for about 6 months. It seems every time I come out of remission, it takes me longer and longer to go back into remission. Is this common? Also, I am taking Cellcept (2500 mg) daily. Is there a cheaper version of this drug that I can take or a generic form?
Dr. Merrill:
There is no generic CellCept now but it will not be this way for too much longer….it will come off patent in the near future. Other agents such as azathioprine or leflunomide can be used instead of Cellcept for some but not all conditions and in some but not all patients. Azathioprine is much less expensive but the dosing can be limited by the side effects in many (but not all) patients. Many pharmaceutical companies have patient assistance programs, depending on your income and insurance coverage you may be able to apply for some help in getting the Cellcept as well.
Moderator:
Here is a question from sunny, warm Nassau in the Bahamas. Andrea asks: How effective is the drug CellCept in the treatment of lupus nephritis.
Dr. Merrill:
There have been a number of studies published now, and it looks like it is at least as effective as the standard treatment (Cytoxan) and has fewer side effects. But some individual patients might do better on Cytoxan, just as others might do better on Cellcept. Also, I am not happy with how well any of them do. I hope someday soon we will have treatments (or combination of treatments) which will put people into remission in a more reliable way than any of these ….and keep them there. That’s why we are happy to see so many new drugs being tested for lupus now.
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Moderator:
Melody from Sun City asks: I wanted to know if my son could develop lupus from me? He shows the butterfly rash over his face. I also wanted to know if Plaquenil and methotrexate are not working, what would work? I am tired of constantly getting sick. Thank you.
Dr. Merrill:
Lupus is not a contagious disease. Some children get red faces in the sun, and that’s OK but if the rash is raised up he does need to be seen by a doctor for this. Lupus can be inherited by it is not common for a person’s son to get lupus. There are other agents on the market to treat lupus but it depends on what kinds of problems you are having which one your doctor might pick….other treatments include steroids (shots or pills), azathioprine, leflunomide, and others….too long to list. If you are constantly getting sick you need to talk to your doctor about your condition. If you don’t get the kind of communication you want then you should look for a second opinion….remember, lupus can take some time to respond and we sometimes have to be patient and try different combinations of treatment, but you need confidence that your doctor understands your concerns and is actively working on them and communicating with you about it.
Moderator:
We have about 25 minutes remaining on our chat. From Pittsford, NY, Mary asks: if you have a 2 year cycle of Cytoxan, would you ever have to get it again when you get sick again.
Dr. Merrill:
Unfortunately, it might happen. I mentioned this above. Even our very strongest drugs only put some of the people into sustained remissions. We have learned in recent years to keep people on maintenance treatments that are at high risk for recurrence of severe lupus, such as kidney disease, but what we are HOPING to have in the near future are treatments that would make this unnecessary.
Moderator:
This question comes all the way from across the pond. Shelley from York in the United Kingdom asks: Currently 31, I was diagnosed with MS 8 years ago and having recently received a dual diagnosis of MS and antiphospholipid syndrome. I am currently experiencing horrendous arthritic type pains in arms and hands and wonder if you have any advice as to how to deal with this new symptom. I would appreciate any comments. Thank you.
Dr. Merrill:
I think you should be evaluated by a rheumatologist. Although what you describe could be nerve pain (parasthesias) from MS, it could be arthritis and/or myalgia, giving you a very mixed autoimmune picture. I recommend going to see Dr. Isenberg at the University of London…. there is a train down there from York.
Moderator:
From Natasha in Bridgeport, CT: Is it true that lupus patients bleed more when visiting the dentist? Are there other things that can be done to minimize gum bleeding besides warm water and salt?
Dr. Merrill:
There is no general reason for a person with lupus to bleed when they see a dentist more than anyone else. However, some patients are taking pills that can increase bleeding such as ibuprofen or naproxyn or aspirin or coumadin or one of the other blood thinners. It makes sense to ask about whether these can be stopped for dental procedures.
Moderator:
From Roni in St. Louis comes the following question: For 8 years I have had lupus. Suddenly, extensive testing last month shows no signs. Yet, my body has been through extreme stress – ICU for bleeding to death and respiratory failure. Is that possible? I thought stress would activate the lupus. Can getting 11 new units of new blood make a difference?
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Dr. Merrill:
You probably got a lot of steroids when you were in the ICU. I would wait a few months and get retested. Lupus autoantibodies can come and go. We will have to wait and see….
Moderator:
From Jose in Matamoras, Tamps., Mexico. Hello, I am a father of a twelve year old non-identical twin girl that was found sick and identified with lupus since last January (2006); I am concerned of the side effects, if there are any, of the actual medication she is actually taking (Plaquenil). Could you tell me if there are any risks for my daughter that I should be aware of because of this medication?
Dr. Merrill:
The major concern with Plaquenil is a rare problem with eye toxicity. Be sure that an eye doctor examines her retina every six months and does testing of “visual fields.” Other than that, if she seems to be tolerating it well it is likely to be very safe. Dr. Jorge Sanchez Guerrero at the University de Nutricion in Mexico City is one of the most famous lupus doctors in the world.
Moderator:
Paul in Alton, IL submits: Have you seen improvements in children with skin lupus as they get older?
Dr. Merrill:
Sometimes.
Moderator:
Karla in Little Rock, AR asks: For lupus patients that also have Raynauds, what is the easiest thing to do as far as staying warm? Is there such a thing as electric gloves or heated socks. Raynauds can really be painful at times. I have had lupus for a year now. What is the long term affect of Raynauds.
Dr. Merrill:
Usually, if the Raynauds does not go past the second knuckles from your fingernails, it will not progress to any serious problems for the hands. There are a small number of people who can get some special lung problems associated with severe Raynauds, so I think all people with Raynauds should be followed by a knowledgeable doctor. I don’t like gloves; for Raynauds, pockets are better, so your fingers are not separated from each other or from your palm. If you have to take you hands out of your pocket use mittens or socks. There are hand warmer systems sold in sports stores, you heat them in the microwave and crush them to release heat.
Moderator:
Diane in Atlanta, GA writes: I had lupus for over 25 years. I am 61 years old. I only take all natural herbs, no medicines. I have been talking a home brew called Kombucha for ten years. My question is, my joint pain is getting worse. Is there anything new to help?
Dr. Merrill:
At your age it is not clear why your joint pain is getting worse. Of course, it could be the lupus coming back but it could also be osteoarthritis which would call for different types of treatment. I think you should see your rheumatologist for a diagnosis!!!
Moderator:
Here is a question from your state of Oklahoma. R.T. in Quapaw writes: Is there anything that can boost my immune system because I am sick all winter with everything from tonsillitis, sinus infections, kidney infections, etc.? Also, why do I hurt so badly when the weather changes?
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Dr. Merrill:
You need a good diagnosis, too, just like the last person who wrote in. It is not easy to say why you have these illnesses. In general there are no “immune boosters” other than a healthy diet and plenty of regular daily vitamins….and moderate lifestyle with exercise.
Moderator:
Valerie in Chicago asks: What kinds of treatments are available for lupus patients who are sensitive to the sun? Are there more ways than just sun block and hats to prevent flares when exposed to the sun?
Dr. Merrill:
It is really important to be up to date about sun blocks. We now know that you need protection from both UVA and UVB light and there are new products on the market that protect against both of them. I would speak to your doctor or pharmacist about this. There are also special clothes that are designed to protect against the sun….they are advertised in the Lupus Foundation of America’s magazine, Lupus Now.
Moderator:
From our friends up north, Candace in Anchorage, AK asks: I’m 23 years old, and I’ve had discoid lupus since I was 19. I was just wondering if a person with discoid lupus has the risk of getting vasculitis. This really scares me because I have been getting lesions that are dark red, on my toes and fingers. Thanks, I hope you will have time to answer my question.
Dr. Merrill:
I do not know whether what you describe is vasculitis, but if it is, don’t be scared; go get some aggressive treatment. I say this because skin vasculitis is NOT the end of the world and should be responsive to treatment …. But don’t WAIT …. We don’t MESS with that!!!!!
Moderator:
Cynthia in Gadsden, AL submits: I was tested for lupus approximately 5 years ago. I was told I have lupus and also the whole lupus of family. Is weight gain normal with lupus? This has never been a problem with me until I began taking a lot of medications for lupus. Also, blood tests reveal abnormality of my liver enzymes; however, no one has sent me to some liver specialist or blood specialist. Is this normal with lupus also?
Dr. Merrill:
The most likely reason you are gaining weight is from steroids, such as prednisone or medrol. This is very common. The good news is that if your doctor can get your lupus under control and bring in some other treatments, and if you can be tapered off the steroids, you might be able to get back to your normal weight….although it sometimes takes a while and it sometimes takes an unfair amount of diet and exercise to do so. The liver problem (presuming your doctor ruled out infectious hepatitis) is probably either a medication side effect or from the lupus. In either of those cases, your lupus specialist can usually handle that without an additional specialists … but the person to ask that direct question is your doctor….you need to be a partner in the decisions that are or are not being made and you need confidence that all of those problems are being addressed in a way that you want them to be.
Moderator:
For our final question, Vicki in Winter Springs, FL asks: My daughter has been experiencing some digestion problems. mainly constipation and acid reflux, could this be a result of lupus. The other question is, if she hasn’t experienced any organ involvement as yet, (she is 22 and been diagnosed for about two years) are the chances of organ involvement low? One more question, she is experiencing a lot of depression and obsessive behavior. Could this be as a result of lupus. Than you for your time, it is much appreciated.
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Dr. Merrill:
Problems in the GI tract can be seen as a result of lupus but are very rare. The common reasons why people get problems with digestion are side effects from their medicines or gastritis or ulcers or stress symptoms. If you don’t have major organ damage within the first two years of diagnosis it is a good sign, but there are no promises, since lupus can be unpredictable. Finally, it is unlikely that depression and obsessive behavior is due to brain inflammation which CAN happen in lupus but is RARE. However, there can be many reasons for these and we need to think about treating the whole patient. Maybe she would be less depressed if the rest of her felt better…..etc….
Moderator:
Unfortunately, we are out of time for today’s chat. I would like to thank our guest, Dr. Joan Merrill, LFA Medical Director and Member and Head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation (OMRF), and OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center. Thank you Dr. Merrill
Dr. Merrill:
You are welcome. I hope some of this was helpful.
We apologize if we were not able to get to your question. We will try to answer as many of them offline as time permits and eventually post them with the transcript at a later date.
Our next chat will be Wednesday, December 13, at 3:00 p.m. Eastern time when our guest speaker will be Dr. Robert Phillips, Director of the Center for Coping on Long Island, New York. Dr. Phillips is the author of “Coping with Lupus,” and co-author of “LUPUS: Everything You Need to Know,” as well as author of many other books about coping with chronic conditions. Many of these books are available through the LFA store. Dr. Phillips will take your questions about ways to cope better with lupus.
To submit your question to Dr. Phillips in advance, send your questions to question@lupus.org or click here to go to the "Submit a Question" form.
A transcript of today’s chat will be posted later this evening. Thank you for your participation and again, thank you Dr. Merrill for taking time to chat with us.
This concludes the live lupus chat for Wednesday, December 6, 2006.
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