"Medication Adherence" Chat Transcript for Dr. Sam Lim
Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Sam Lim.
Dr. Lim is Assistant Professor of Medicine at Emory University School of Medicine in Atlanta, Georgia and Chief of Rheumatology at Grady Health Systems.
He heads two large lupus clinics and is involved in several federal, state, and privately funded projects, including the CDC-funded Georgia Lupus Registry (part of the National Patient Lupus Registries). He also serves on the Medical Scientific Advisory Committee of the Lupus Foundation of America and its Georgia Chapter.
We welcome Dr. Lim, and thank him for joining us this afternoon.
Without further delay, let's begin. The first question comes to us from Virginia.
Moderator
Because I moved to a new state I had to find a new rheumatologist. He wants to lower my dosage and eventually take me off of Plaquenil. My previous Dr. (highly respected) told me the first thing she does is put her patients on Plaquenil. I don't want to change. Am I out of date on research? -- Farnham, VA
Dr. Lim
It is important for you to better understand why your new rheumatologist wants to take you off Plaquenil. There are side effects that could potentially harm your eyes or muscles, though extremely uncommon. Without a clear reason to stop, in general, I agree with your previous rheumatologists. There are so many reasons to keep you on it, if you can tolerate it: may decrease the number and severity of future flares (prophylactic use), acts as a mild aspirin (important since lupus can accelerate cardiovascular disease), lowers bad cholesterol and increases the good (again, important for decreasing heart disease risk).
The big theme here is ensuring that you have a good line of communication with your rheumatologist. If you don’t want to change, tell him/her. And if he/she disagrees, make sure you understand his/her rationale.
Moderator
Dr Lim, I have been taking this medicine CellCept 250 mg/3 times per day since April 2008. Will there be side effects that I should be concern since it’s over a year? -- South Orange, NJ
Dr. Lim
I would say that the first question to ask is do you need a long term immunosuppressive, whether it’s Cellcept or not. It’s not an easy question to answer in the general sense. So, make sure you and your rheumatologist have a good dialogue on that: how long should you be on CellCept? What is the goal and what conditions will cause change (lowering or increasing the dose, changing medications etc.)?
Assuming you and your rheumatologist are satisfied with the reasons to stay on an immunosuppressive for an extended period of time, you need to discuss your choice of drug. CellCept, like any immunosuppressive medication, has potential side effects. But generally speaking, its side effect profile is relatively good, particularly compared to moderate to high dose steroids and agents like Cytoxan. We don’t have very long follow up studies (>5+ years). But over time, we will get a better sense of this type of use. But in your case, we are seeing many patients like yourself who have been on CellCept for over a year in moderate doses and relatively tolerating it well.
Moderator
I have SLE lupus / mixed connective tissue disease / fibromyalgia / with CNS involvement. I have had good lab results for two months straight but having severe stomach issues. Current meds are Neurontin (600 mg), Methotrexate (20 mg), Plaquenil (2aday), Cymbalta (120mg) - what other immune suppressant or medication options are available that would help the stomach issues such as GERD / IBS? -- Frisco, TX
Dr. Lim
As you will tell, I like to bring up general concepts that all people can benefit from first. And in your case, the concept is that not all bad things that happen to you are due to lupus and would need an immunosuppressant. Remember, you are a “normal” person who also has lupus; meaning, you have all the reasons to have any symptom that anyone without lupus might have. In your specific case, I would make sure that you discuss your “stomach issues” with your physician, whether it be a primary care physician or rheumatologist.
Occasionally, medications, particularly over the counter anti-inflammatory medications like Advil, can cause stomach problems. People with “mixed connective tissue disease” can often have GERD or reflux as you suggested. Treatment should include conservative measures such as avoidance of late night eating and certain foods that make reflux worse. But most of the time, treatment is needed with more powerful stomach acid suppressants known and proton pump inhibitors (PPIs). There are both over the counter and prescription forms.
Lorger
I am 38 and am taking Plaquenil and CellCept 100mg a day. I would like to be pregnant in 2 years. What steps should I take? -- Queens, NY
Dr. Lim
First, having lupus doesn't mean that you will have a bad pregnancy or your child will suffer. But there is much you can do to maximize your chances of this. The number one thing is to have a planned pregnancy where you enter pregnancy having "stable" disease for several months.
Then, obviously, there are medication issues. CellCept is a big NO NO in pregnancy. In fact, there is now a special warning since there have been unusual malformations seen in children born from mothers who have been on CellCept. Plaquenil is a different issue. Though the textbooks say to avoid it (like almost every other medication), there has been enough experience with Plaquenil and pregnancies to suggest a favorable side effect profile.
This is also coupled with the fact that since pregnancy is a higher risk period for flares for lupus, it may be worth considering. But like everything else, it really depends on the individual weighing their tolerance for risk and benefits. Discuss this carefully with your doctor. If you choose to continue any medications with the support of your doctor, keep in mind many medications do show up in the breast milk and will need to be discussed with your rheumatologist and/or your OB.
Moderator
Are DMARD drugs more powerful than immunosuppressants for treating SLE Lupus? -- Frisco, TX
Dr. Lim
DMARD stands for disease modifying anti-rheumatic drugs. To my knowledge, the term really got its start in rheumatoid arthritis, which is another rheumatic, autoimmune disease that predominantly affects the joints. In RA, there are certain medications that have been shown to influence the course of disease, limiting or reducing joint damage over time. In lupus, the concept of DMARD is a little more complex. But bottom line, I think most people interchange the use of DMARD and immunosuppressants.
Moderator
It is difficult to find research on the use of Remicade in lupus and associated OA/RA. Please share what you know about the results and the major dangers/concerns. -- Dallas, TX
Dr. Lim
When I search on clinicaltrials.gov (the government’s database of all active clinical trials), I don’t see much going on now in lupus with anti-TNFs, which is the class of agent Remicade is in. There are rheumatologists who don’t hesitate to use anti-TNFs in lupus, especially if there are strong overlap features with rheumatoid arthritis (bad arthritis). There is an underlying concern in some that anti-TNFs may not be good in lupus because of the observation that some patients who received it develop auto-antibodies and even lupus-like disease, though uncommon. Anti-TNFs are to be avoided in those with severe or unstable heart failure.
mslupie
Hello Dr. Lim. I have been on prednisone since I was diagnosed with lupus in 2003. I am currently 35 years old. I started on a high dose and then reduced to 2.5mg per day since 2006. As of May 2009 I am taking 2.5mg every other day. My rheumy wants to eventually discontinue since I fractured my spine last year. I started taking CellCept 500mg 2x/day and Imuran 50mg once a day in 2005-2006. Since I'm on these two other immunosuppressants, would you say that discontinuing prednisone is a good treatment plan? I'm worried because I am well aware of the side effects associated with stopping this drug. Thank you.
Dr. Lim
First of all, congratulations on successfully tapering your prednisone down to 2.5 mg. I know it can be a long and arduous journey at times.
The answer really depends on your level of disease activity. If the CellCept and Imuran did its job as expected, you will have stable disease and, therefore, your prednisone should theoretically be amenable to taper. I share your concern that disease can return whenever you go down or off a medication that is working. But 2.5 mg of prednisone is such a low dose that I suspect you will do well.
At lower doses, small changes can be felt by patients frequently. It's more that your body is getting used to the withdrawal than the lupus returning. As long as your taper is slow and monitored, I think you should do well. Good luck!
elane
Hello Dr. Lim. What are your thoughts on the new drug Benlysta?
Dr. Lim
I will not be addressing questions about new medications for lupus and the results of clinical trials, in particular Benlysta, today. But I will make a plug for an upcoming Benlysta Research Update webinar by Dr. Joan Merrill. It will be on Nov. 30 at 7 p.m. (EST). She is much smarter than me anyway. Links will be put up in the webinar again for those who will look for it later.
Moderator
To learn more about the BENLYSTA webinar, go to this page http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2784&zoneid=76.
Moderator
I was diagnosed with lupus rash in September. The doctor put me on Plaquenil. How does it work? And is there anything that can be done for the "stains" left on my skin that look like small bruises? -- McMinnville, OR
Dr. Lim
Plaquenil is an immunomodulator whose properties are still being fully elucidated. But we know it works! Particularly for those with mild skin and joint lupus activity. The lupus activity is basically inflammation and one can think of skin inflammation as a type of “burn.” And if you ever had burn, small or big, anywhere on your body, you see that there are 2 major phases. The first phase is the body healing itself from the skin damage. The second phase occurs after the healing and is the scar that remains. I believe the “stains” you are describing are the scars. It really depends on where the scar is, how big it is, and the type/color of your skin. Generally speaking, you could wait a while. If the scar is not in a socially obvious area, the lesion may fade and become less noticeable over time. You could try asking around for good make-up tips. Finally, there are some cosmetic tricks you could discuss with a dermatologist.
Moderator
My doctor has me on CellCept daily for controlling my lupus. Three in the am and three in the pm. I often wonder should I be taking this much of this medication because it does have a lot of possible side effects. I have been taking it now for over a year. I have Systemic Lupus and was diagnosed with it 4 years ago. I have had one bad flare up about 3 years ago, but since then I had maybe one minor one a year. My doctor has said on my last visit that he may lessen the dosage to 4 per day instead of 6 per day. But I was just wondering how bad it is to take so much for so long. -- Florissant, MO
Dr. Lim
I think everyone agrees with the general principle of your question: you want to take as little as possible to adequately control your lupus without unacceptable side effects. So, the question is how well your lupus is being controlled, and what are the potential side effects if you remain on the drug. Since your MD is considering reducing your dose, it sounds like you are doing relatively well. Regarding CellCept, in general, it seems to be well tolerated long term.
Moderator
Why are doctors so afraid to increase medication when they see increased flare symptoms in a person? Why do they want to see the four alarm fire? Why not put out the flame before the fire is out of control? -- Elizabeth, CO
Dr. Lim
Your logic is right on the money. You absolutely do not want to wait when disease activity can be managed earlier with milder interventions. But perhaps a part of the issue lies in the challenge of attribution of your symptoms. In other words, the question is not that you are having problems. Only you can tell us that. But for the physician (and you), part of the challenge is evaluating for ACTIVE lupus vs. other causes. By active lupus, I mean the assessment is that the immune system is actively attacking and contributing to your symptoms (the fire in your example). Obviously, this would be a situation when immunomodulators/suppressants would help (the water for the fire). But there are situations when the issue may be more damage (the fire damage, ash, etc.) related to the fire. This would not be treated with immunosuppressants. And, it may be something not directly related to lupus at all, even though it may feel similar to a previous lupus flare to you. To make it even more complicated, it could be a combination of all of this and may take time for you and your physician to sort through. Again, you should be able to discuss any confusion or frustration with your physician.
mslupie
Thank you Dr. Lim. You may not be able to adequately address this question, but have you seen in your practice many patients who suffer severe complications as a result of discontinuing prednisone? I have heard that the risk of stroke, death and accelerated heart disease and kidney failure are highly likely as well as the development of severe flares. Particularly in African American women, which I am. I would like to know your thoughts. I am as afraid to stop taking Prednisone as I am in continuing to take it ... lol. Thank you.
Dr. Lim
In general, we often don't know when disease will flare or re-flare... It's the unpredictable waxing and waning nature of lupus that many of you live with day in and day out. So, whenever we advise someone to take a medication to prevent future flares or reduce the chances, we must always weigh it against the potential side effects. Plaquenil is a classic example where in most people it would be acceptable to do so.
Prednisone probably should not be in the same category, but it depends on the dosage. I think doses less than 10 mg per day (obviously, lower the better) may be acceptable depending on the other issues of a particular patient (other alternatives, comorbidities, etc.).
Now, regarding African American women ... this group has one of the highest rates of lupus in the world and can certainly be more severe. But we don't know enough information about different responses or other factors in black women that would make us change the risk/benefit ratio for you compared to other ethnic groups. So, my long winded answer is that it is always best to be on as little as you can while achieving proper control of your lupus. I hope I got at the essence of your question somewhere in there.
Moderator
Hello, I have been so confused and wanted to know if lupus patients can take HRT? I have other autoimmune diseases, CNS, RA, atrophy, and was so concerned after my hysterectomy in May. I have been very ill. -- Lorain, OH
Dr. Lim
People with lupus are not absolutely forbidden to take hormone replacement therapy (HRT). But you need to know the relative risks and benefits and discuss with your doctor, who knows your situation the best, in order to come to the right decision for you. The concern about hormones, estrogens in particular, comes from the observation that most people with lupus are women who develop lupus in their pre-menopausal years and that flares can often be triggered by high estrogen periods, such as pregnancy.
However, some studies have shown that low dose estrogens for birth control and menopause can be safely used. It’s important to note that the patients in these studies were very specific: disease was under good control prior to starting HRT and there is no history of clots/recurrent miscarriages or other risk factors for blood clots, such as smoking. And this is all balanced by how compelling your reasons are for considering HRT.
Val
Are there damaging effects for long use of Imuran?
Dr. Lim
Much of the adverse effects of Imuran are detected early: blood count abnormalities and liver irritation. Many of these patients can be detected with abnormal levels of an enzyme that degrades Imuran in your body. This can be ordered by many physicians. If you have been on Imuran for a while, chances are you will continue to do fine. Many of you will be concerned about the mention of cancer in the label. But Imuran has been used in certain cancers and we can see a slightly elevated rate of certain cancers in lupus. It is very difficult to tease out how much more the Imuran contributes to those risks above and beyond what is already there. Oftentimes, the benefits of Imuran outweigh the risks.
NYCgirl
Are there any differences between Plaquenil and hydroxychloriquine?
Dr. Lim
They are the same thing. However, the name used can often be related to generic vs. brand. Theoretically, both brand and generic are similar enough on a molecular level that there should not be a reason to think one is better/worse than the other. However, many people swear there is a difference and could be related to other factors, like the fillers used in the pill.
Moderator
I have been advised in past years not to get flu shots. I have had lupus for 33 years. -- Sagamore Beach, MA
Dr. Lim
There is no evidence to support the complete ban of flu shots to patients with lupus. People who are immunosuppressed (and lupus can be one example) are at higher risk for complications from having flu. You can read more by searching the CDC website. There is also information produced by the American College of Rheumatology, which is geared for doctors and focused on H1N1, at http://www.rheumatology.org/publications/hotline/2009_09_29_h1n1.asp.
In short, the flu and H1N1 vaccines are something to be strongly considered for those with lupus. The shot CANNOT give you the flu or H1N1. However, the nasal spray form of the vaccine does have small amounts of live virus. Those with immune diseases and/or on immunosuppressive medications (most people with lupus) should avoid the nasal spray.
Moderator
I was diagnosed with SLE in October 1998 and have been taking Plaquenil 200 mg twice a day everyday since then. So far my liver function tests have been within normal limits. Can I be on this drug indefinitely? It does seem to keep my skin lesions under control although I have major arthritis symptoms for which they have already replaced one knee. I am 64 years old. -- Bluffton, SC
Dr. Lim
Plaquenil, given in the correct doses, can be tolerated for many years. Liver abnormalities from Plaquenil are rare. The most common side effect is related to medication effects on the retina (back of the eye). And even then, it’s also rare if given in correct doses. The take home message is that even if you’re doing well on a medication, you need periodic evaluation by a physician to monitor for side effects from medications (blood counts, liver monitoring, eye exams, etc.). If you wait until you are feeling poorly, it may be too late.
Moderator
Does it really matter if I miss a dose of CellCept? Plaquenil? And I hate taking prednisone. So I don't take it at all. I am doing fine. But the doctor thinks that I am taking it still as prescribed because, I don't tell him different. -- Pottstown, PA
Dr. Lim
Missing a dose of medication depends on how long the drug stays in your system. A drug that needs to maintain a constant level in your body but stays in your system for a short period of time may be more problematic if you miss a dose, even one dose. Specifically to you, there should not be a problem missing a dose of CellCept and/or Plaquenil from time to time.
However, I sense a much larger issue here, which pertains more directly to the title of our Webchat: medication adherence. This is a very important issue in a way that you might not expect to hear from a physician. It’s not necessarily that it is important for patients to take what the doctor prescribes. It is true that physicians are prescribing based on the perceived best interest of the patient. And in some cases, there could definitely be harm if certain medications/treatments are not given appropriately and in a timely fashion.
But what is most important is the communication between the doctor and patient. It is very important that the doctor-patient relationship is such that you can and want to tell your physician that you’re not taking a medication that has been prescribed. If the physician thinks you are taking prednisone (or any other drug) and the disease flares, you may be exposed to other medications that have side effects that you might otherwise not have been exposed to had the physician known you were off the prednisone to begin with. You may be embarrassed to tell your physician or afraid of how he/she will react. But a good physician for you will really appreciate your honesty, knowing that this is vital information that is in your best interest in the long run.
Missing or not taking your medications (lack of medication adherence) is definitely more widespread than most doctors or patients may realize. It shouldn’t be surprising. It’s difficult to remember taking medications, especially if you’re on many and they have lots of unacceptable potential side effects. But there are usually other options. And this really underscores the need to continue to fight for new medication options in lupus that are safer and work better!
Moderator
When I was first diagnosed with Lupus I was told to take my Hydroxychloriquine at the same time everyday, but the German research I read says it is best to take the morning medication by 8 a.m. How far apart should it be taken if I take it twice a day? -- Granite Falls, WA
Dr. Lim
Hydroxychloroquine (Plaquenil) stays in your system for a while. Therefore, slight changes in the daily timing of when you take it won’t make a difference. As long as you average your prescribed dose within a 24 hour period, it doesn’t matter. You can take it all at once or split it up throughout the day. The time of day shouldn’t matter much either.
Moderator
I have been receiving Simvastatin 40mg as an anti-inflammatory after my doctor read an article in a medical journal. I haven't had a flare up in 2 yrs. Is the drug still considered anti inflammatory as well as cholesterol reducing drug? -- Kfar Yona, Israel
Dr. Lim
Part of the reason why Simvastatin and other “statin” cholesterol medications are proposed to work is through their anti-inflammatory properties. Atherosclerotic plaques can form and be worsened by inflammation, which is why atherosclerosis and heart disease can be a problem in lupus, an inflammatory condition. However, there is no evidence to date that statins should be used primarily for control of disease activity. Now, if you have heart disease or high cholesterol, which many people with lupus do, it is completely appropriate (and important) to be on lipid lowering therapies, of which statins are the mainstay.
Val
Dr. Lim: Can lupus patients take probiotics from a health food store?
Dr. Lim
First, let me clarify my philosophy on probiotics and other alternative medications. As a physician, I try not to dismiss something just because I don't understand it. And I am sure there are things outside of our traditional medications that could help people with lupus. However (you knew this was coming), I'm more concerned about the unknowns. We have not done many formal studies with probiotics. And we don't know how it interacts with the medications you already may be taking. I think that in most situations, it's riskier to introduce this level of unknown information given the alternatives (though not nearly as great as we would like). In any case, if you do choose to take it, keep your doctor informed so he/she can best interpret what may be going with you, whether it's improvement, worsening, or more of the same. And yes, we need better and safer medications!!
Moderator
I have stopped taking my Plaquenil a couple times because of severe stomach pain. Each time I've stopped the pain goes away. My rheumatologist says that this is not a side effect of Plaquenil. Should I go back on the Plaquenil or trust my instinct that this is the cause of the stomach problem. -- Bellevue, WA
Dr. Lim
Any medication can cause stomach problems, though it is not reported to be significantly common with Plaquenil. However, if you’re the one with stomach problems from Plaquenil, it’s significant to you! An ideal physician-patient relationship should allow for significant input from you and your instinct. After all, you know your body best! The repeated timing of your symptoms do suggest, to me anyway, a relationship between the Plaquenil and stomach. You could try taking it at different times of the day or with/without foods. There could be medications to make the stomach less irritable. In any case, you need a physician who will listen and work with you to try and interpret these things.
Debra
It seems like I'm seeing a half dozen specialists right now -- dermatology, neurology, immunology, pulmonology -- and they're all prescribing different things for various problems I'm having. Should I loop back to the rheumatologist every time a specialist gives me an RX, even if the specialist knows what I'm already taking and that I have SLE/Sjogrens, before I start the new meds? I'm worried about things not working together like they should.
Dr. Lim
It's football season ... And if you know football, a team would be completely disorganized and ineffective without a quarterback. And with a condition like lupus when there can be too many cooks in the kitchen (ok, too many analogies), it's important to have someone coordinate your care. You are absolutely correct. I think a rheumatologist would be in the best position to be that quarterback. But it could be one of your other specialists too, depending on what issue is predominant.
Moderator
My doctor prescribed hydroxychloquine when I was diagnosed with lupus. I have a friend with lupus that lost her sight in one eye that was determined to be caused by hydroxychloquine. So I'm scared to death of it. Do the benefits outweigh the risks? Is there something better I should be taking? Or, should I start taking the hydroxychloquine again? What does hydroxychloquine do? What are the benefits of it? -- Vancouver, WA
Dr. Lim
It is extremely rare to have vision loss from Plaquenil given the right dosing and proper monitoring. But that’s not to say it doesn’t happen. I am very sorry to hear that it occurred in your friend. However, I do believe that the benefits outweigh the risks in the vast majority of cases. I would focus on my statement of “given the right dosing and proper monitoring.” As long as you are doing both, retinal changes, if it were to occur, can be detected before any significant impact to your vision and Plaquenil stopped before any significant progression. But even after these reassurances you still do not want to take Plaquenil, there are alternatives with different side effects and issues. You need to discuss this with your rheumatologist who knows your specific situation best.
Moderator
What are the alternatives to prednisone? It helped but my blood glucose (sugar) went haywire. -- Marlinton, WV
Dr. Lim
The reason many of use prednisone frequently in lupus despite its potential side effects is that we have no other medication that modulates the immune system as quickly and effectively as prednisone. Believe it or not, docs don't own stock in lupus manufacturing plants. The reason other drugs are started later is that they take time to get into your system and become effective. If disease activity is prolonged or anticipated to be prolonged, your rheumatologist needs to work with you and active proactively to institute a "steroid sparing" drug, like Imuran, Methotrexate, CellCept, etc.
Prednisone has saved many lives... But it also has wreaked havoc in many others because the replacement for prednisone wasn't sought after or found quickly enough. Be sure to communicate well with your doctors and emphasize your concern about the side effects of steroids. If your disease is active without steroids or on low doses, in almost every situation, a suitable alternative can eventually be found. Best of luck.
Moderator
Dr. Lim ... do you have any final thoughts?
Dr. Lim
The way I see it, we can build the fanciest car in the world. But it won’t make any difference if the driver isn’t happy with it and it doesn’t get us where we want to go. Medications are defined by their effectiveness and control of their side effects. However, if those with lupus don’t understand it, accept it, and take it, we are not doing our jobs.
Thank you all for your wonderful questions and comments. I hope this chat has helped you and the many others around the world who battle lupus bravely and on a daily basis. You are our best weapons against lupus and we, the doctors and the LFA, are glad you are on our side.
Moderator
Help spread the word about our lupus chats. See you next month.
That is all the time we have for today’s chat. Thank you to Dr. Sam Lim for joining us. Please join us for our final webchat of 2009 on Wednesday, December 9 at 3 p.m. Eastern Time. Our guest expert will be Dr. Graciela Alarcon, who will discuss “Medications.”
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