Providing Answers, Support and Hope in the Northeast

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Host 0:00
Welcome to The Expert Series brought to you by the Lupus Foundation of America. Our speaker today is Dr. Anca Askanase. She is an internationally renowned lupus clinician, diagnostician and researcher. Dr. Askanase trained as a rheumatologist at New York University, where she remained for more than 15 years on faculty, directing clinical trials, training fellows and residents and treating challenging cases of lupus. She is the founder and clinical director of Columbia University Medical Center's new lupus center and the Director of Rheumatology Clinical Trials. Welcome Dr. Askanase. It's a pleasure to have you.

Dr. Askanase 0:37
It's a pleasure talking to you and providing information that I hope may improve the lives of people with lupus.

Host 0:44
In this segment of The Expert Series, Dr. Askanase, as we'll be discussing tips for managing medication side effects. More specifically, we will be going over steroids, Plaquenil, CellCept, common medication questions and tips on how to stay organized. So to start off, Dr. Askanase, can you provide a little background on steroids prescribed for lupus.

Dr. Askanase 1:07
Steroids are probably one of the most prescribed medications for lupus. And just to make it very clear, these are not the steroids that weight lifters or athletes take to increase their strength or bulk up. They are designed to decrease inflammation and lessen the immune system response. And as a consequence calm down lupus activity. Because of this, it has been the main drug used to treat lupus.

There are several versions of the medication that are used. Prednisone is the most commonly used. Some others are prednisolone and methylprednisolone. And there are some others that are more potent, like decadron. So you might have heard about these, and they all come in different ways of administration. They come in a pill form, they come in creams or gels, they can be injected into the muscle or into the vein. Because they're so commonly prescribed, I think we need to pay attention to their side effects. And here are some of them, weight gain, a round face, skin changes and infections. Unfortunately, weight gain or weight changes are very common with steroids because they increase the appetite and slow down the metabolism. So it's hard to curb this. So if you find that you have an increase in appetite, be sure to have healthy snacks on hand with low caloric value like fruits and vegetables. It's a lot easier on the body and it's a lot easier to get rid of the extra couple of pounds as opposed to you know many more. That might happen if you indulge in potato chips or Cheetos or ice cream. So anyway, be mindful.

You may also experience a redistribution of the weight. And this produces that round face. So the doctor will work with you and try and reduce the dose and make it less duration so that by the time you get off the steroids, these things should start going away. And of course, unfortunately, there are some skin changes which include acne, the same thing as you get off the prednisone, they go away. Steroids lower the immune system. So one of the big side effects of steroids can be infections. If you suspect you have an infection, if you notice changes that are suggestive of an infection, be sure to contact your doctor so that this can be treated quickly and effectively. Some other side effects of steroids include irritability, depression, you may find it hard to sleep, while thinning osteoporosis, muscle weakness and cataracts. So not everybody experienced all of these. But most people will experience some of the side effects. And as the dose goes up, the risk of side effects is a little higher. As the dose starts going down, they start resolving. The lower the dose, the less likely that any of these are going to happen.

So with all of these side effects, you're probably thinking why on earth would my doctor prescribe this to me? And the answer is inflammation from lupus can cause permanent damage to the organ that it's attacking. And steroids are very powerful and quick in treating this inflammation and preventing damage. So steroids are really important. We don't have a good alternative.

Host 4:54
Moving on to Plaquenil: Can you help us understand a little bit more about what it is and it's side effects?

Dr. Askanase 5:01
So Plaquenil or hydroxychloroquine, is an anti malarial medication. It was invented to treat malaria. And as the as doctors were treating malaria, they noticed that it had other effects on arthritis - arthritis got better. So they started looking at Plaquenil to treat arthritis, autoimmune diseases skin rashes. As time went by, and we've been using Plaquenil to treat patients with systemic lupus, we noticed that it is a critical piece in the treatment of lupus. It decreases inflammation, and as such tapers and well, we use the word taper elsewhere in a different with a different meaning. So it slows down the arthritis, decreases its symptoms, decreases rashes and fatigue. It is a medication that's prescribed for long term. And as people take it for long term, it starts to decrease the flares, it starts to calm lupus down, it has a good effect on cardiovascular disease, it has a good effect on clotting. So these are the reasons for everyone to be taking Plaquenil.

There are other anti malarial that can be used in the treatment of lupus. However, Plaquenil has been our our first go-to medication when treating lupus to help with lupus control. Now, Plaquenil has side effects too. So the good news is that it's much less in terms of side effects compared to the steroids. And the most common and the most feared side effects of Plaquenil is eye toxicity. All that being said, it's still extremely rare, somewhere in the range of one in 1000. And this risk increases that people have been taking the Plaquenil for a long period of time, so five to 10 years.

So this is what we need to do to prevent eye damage from Plaquenil. You need to get your eyes checked as you start the medication, and then once a year--or, depending on on the duration of time that you have been on it twice a year--you need to have your eyes checked, Plaquenil gets deposited on the retina. And in particular, on the side of the eye at the periphery of the visual field. So in the beginning, the changes are very subtle. And it is only by looking at the retina with special instruments that the ophthalmologist can tell you that something has happened. And the concern is that if we don't catch that very early on when you don't notice anything, this might progress and lead to irreversible vision-loss, blindness. Now, we've looked at the incidence of blindness in large cohorts of lupus patients and there isn't so much, so it's very rare. I've not seen anybody go blind, and I've probably taken care of 1000 lupus patients myself. So be reassured: blindness is extremely rare.

Another common side effect is an upset stomach from Plaquenil. It goes away as your body gets used to it. So there's no reason to not try and work around the side effect. It does not damage the stomach. It doesn't cause ulcers, it just makes the stomach contract. So the best way to try and get around this is try and start with a lower dose than the two pills a day. So start with the pill, if the pills feel rough on the stomach, tried do half a pill. So these are some thoughts about getting around the side effects of Plaquenil.

Host 8:46
Great. Now let's go on to talk about Cellcept. Can you provide a little background on what that is?

Dr. Askanase 8:53
CellCept or mycophenolate mofetil is an immunosuppressant. We use it to treat lupus nephritis but we also use it to treat non-kidney lupus from moderate to severe lupus. It is another big piece in what we use to treat lupus. Lupus is a hyperactive immune system, we're trying to slow it down. So because we're trying to slow down the immune system, with medications like prednisone or CellCept, we may increase your risk for infections, but that risk is low and most of the infections are easy to treat, like a urinary infraction or bronchitis or a cold, occasionally zoster. So these are things that you and your doctor can manage. It is very unusual to have devastating life-threatening infections from the immune suppression of CellCept, prednisone or actually lupus because the hyperactive immune system is not really directed at protecting you. It's more directed at attacking you. So if you notice seeing unusual symptoms that might suggest an infection, communicate with your doctor quickly. The quicker you treat the infection, the more likely that it's not going to get worse, and you're going to prevent damage.

On a practical note, CellCept also upsets the stomach. So the same thing that we did with Plaquenil, we can do with CellCept, which is get up on the dose slowly. That makes the stomach less irritated. And then if there's, you know, we start with a pill twice a day, and then we increase it gradually. And then if that doesn't work, we can also try and change you to a medication that is a little less harsh on the stomach. An active metabolite of the CellCept which is called mycophenolic acid, or sometimes give you a little stomach protector so that we can get around the stomach upset from from CellCept and allow you to take this medication that is very important in the treatment for your lupus.

Host 11:06
Thank you Dr. Askanase. So just want to move on now to common lupus medication questions. Our health educators have received inquiries where callers will say that they have an allergy, for example, to hydroxychloroquine. So when one medication proves not to be a good fit, what should a person with lupus do next?

Dr. Askanase 11:28
So I think it's critical that you work with your doctor to find the correct alternative. And that depends on how bad the allergy was, what the main symptom is being treated. So depending on these questions, and the answer to these questions, the correct course of action would be to use another malaria medication, a different immunosuppressant, low dose prednisone. So it depends. Obviously, if the doctor decides that maybe it just an intolerance and not an allergy, that is absolutely worth attempting to use hydroxychloroquine, just because hydroxychloroquine is such an important piece of the treatment.

Host 12:09
Thank you Dr. Askanase So moving on to our next question. We all know that Lupus is a mysterious disease, and that what happens within your body is not always visible. So someone could feel okay, but could still have lupus activity going on. With that said, how often should someone check in with their physician if they're feeling well?

Dr. Askanase 12:31
So always the answer to this question is that it depends. I think that one of the most important things that lupus patients need to learn is to know their body, to know the symptoms, and to get the perfect balance between ignoring some things that we can't fix, and responding to the others. And I think that, you know, in the early days of the diagnosis of lupus is important to work with your doctor to sort out this balance, and know what to ignore, and what to react to. So ideally, your follow up visits need to be based on how severe the lupus is, and what is expected in terms of the time that things might evolve. So if you're in the midst of a big lupus crisis, you might be seen twice a week, or even be in the hospital. But if things calm down, that may stretch out to once a month, once every two months, once every three months. And of course, if lupus is completely quiet, once or twice a year may be good enough. So it all is about sort of reacting to what's happening in the body. So I think that it's important to have a good relationship with your doctor, to have a doctor that you trust, a doctor that's available and knowledgeable so that if there's a change in the pattern, the reaction to that is quick and swift, and calms things down as quickly and as effectively as possible.

Host 14:06
Thank you, Doctor Askanase. So what are some ways that people with lupus can manage their disease on a daily basis?

Dr. Askanase 14:13
So just like for everything else, a healthy body is critical for people with lupus. So eat well, exercise, attempt to engage in some activity that helps with mindfulness and stress reduction. So all of these are things that should be incorporated in the everyday life of lupus patients. And then I could not urge more people with lupus to keep track of things that are happening in their life. Much like we all had diaries, and now people have you know their little electronic virtual diaries. I think it's a good idea as a lupus patient to keep track of things because if something happens once every three months or every two weeks, probably you don't need to do much about it. But if something happens every day, then you do need to pay attention. And of course, there's everything in the middle. So keeping track of things is probably a great idea for lupus patients. And of course, if you're feeling well, like, it's very likely that the entries in the diary are going to be very limited. But if you're not, I think it's a good idea to keep track so that you and the doctor can come together and sort of understand the pattern of what's happening and react to that pattern.

Host 15:35
So moving on to our next section, it is common for those who have lupus to take several medications. What strategies do you recommend in regards to managing their medication?

Dr. Askanase 15:45
So you need to know your medications well. You need to know their names, you need to know their dosage, you need to understand the side effects. You don't need to remember everything. But sometimes writing things down on a piece of paper, or somewhere in your phone. If it's hard to remember all the details about the prescription, just take a picture of the label, have it handy, in case you need to discuss with your doctor or someone else in the healthcare team. When it's too complicated to to take care of all the pills, get a pillbox, small or large, depending on how many pills you're taking, or how complicated things are. Keep notes put up on the phone that remind you to take the meds. All these are things that would help you manage the many number of pills that sometimes you need to take.

Also, just keep handy your name, your address, the phone numbers of your doctor so that in case of an emergency, you can communicate these quickly to your doctors. And they can call your doctor or they can get in touch with the other people that help take care of you so that the best treatment and the best understanding of what's happening can happen quickly. You can also use the Lupus Foundation of America's symptom tracker to track symptoms and keep track of your medication and side effects. Also, it's good to be able to tell your doctors how effective the medications are, or ineffective or if there are new symptoms.

Host 17:21
Thank you Dr. Askanase. So just wrapping up now, what are the key takeaways that you would want our listeners and those who are watching to know?

Dr. Askanase 17:30
So I think that it's very important for lupus patients to know that there is information out there, they need to ask their doctor, maybe they need to ask a friend. Maybe they need to ask LFA, but ask the question. Chances are somebody will have the answer. You're not alone in this. There are lots of people that care about you and about lupus and they will get you the answer that you need. So when in doubt, ask your questions.

Host 18:00
Thank you Doctor Askanase. And thank you so much for sharing such important information about medications for lupus and tips for managing their side effects. For those who are listening in, we invite you to check out next month's presentation on diet and nutrition with Dr. Laura Coleman. And if you'd like to learn more about living well with lupus, you can find additional resources on the National Resource Center on Lupus or you can call one of our health educators at 1-800-558-0121. If you would like to connect with others who are impacted by lupus, we invite you to check out our online community LupusConnect where you can share your experience of lupus find emotional support, and discuss practical insight for coping with the daily challenges of lupus. Thank you.

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Providing Answers, Support and Hope in the Northeast

The Expert Series: Managing medication side effects