"Medication" Chat Transcript for Dr. Graciela Alarcon

Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Graciela S. Alarcón.

Dr. Alarcón is currently Emeritus Jane Knight Lowe Chair of Medicine in Rheumatology. She joined the Division of Clinical Immunology and Rheumatology at UAB in 1980 as a Research Fellow under the sponsorship of the American College of Physicians after having spent seven plus years as a Faculty member at Universidad Peruana Cayetano Heredia in Lima, Perú. While in Perú she developed and organized the first Rheumatology Unit and the first clinical training program in Rheumatology. During her UAB fellowship she received a Traveling Award and a Senior Rheumatology Fellows Award, both from the American College of Rheumatology. In 1981 she joined the Faculty, ascending rapidly through the ranks; she became a professor in 1988, an endowed professor in 1998 and an endowed chair in 2001.

Dr. Alarcón has devoted her academic career to study the impact rheumatic diseases exert in the patients afflicted with them and how to ameliorate such impact. In fact, for her seminal work in reducing toxicity from methotrexate she, in conjunction with Drs. Kremer, Weinblatt and Hoffmeister, received in 1997 the Virginia Engalicheff Award for improving the quality of life of patients with arthritis. Since 1993 her career interests have shifted towards the study of lupus, particularly among minority population groups (PI for the LUMINA study). She is currently a member of SLICC group, an international organization of lupus researchers conducting large scale lupus studies, she is also the Clinic Director for the Genetics of SLE Program Project (PI: Robert P. Kimberly, MD); in this capacity, she is responsible for the constitution of the PROFILE and LUMINA multi-ethnic US lupus cohort.

We welcome Dr. Alarcón, and thank her for joining us this afternoon.

Without further delay, let's begin. The first question comes to us from the Philippines.

Moderator
Are there any new medications for lupus aside from steroids, Plaquenil, Methotrexate etc.? Can you give me an update?

Dr. Alarcón
No new medicines have been approved for the treatment of lupus for the last several decades. There are several medications under investigation … some with promising results but not yet available outside the clinical trials. Other medications currently in use have been studied with variable results and are being used but are not approved (CellCept, Methotrexate, Cytoxan, for example).

Moderator
Is it harmful to my body to be on prednisone (5mg) for 6 years? What could happen to me? -- Norristown, PA

Dr. Alarcón
No matter how small the dose, there are long-term effects from the use of prednisone. Bone thinning and cataracts are examples of these side effects (but there are others).

Moderator
I have been taking Plaquenil, and added CellCept after last flare up. Would you recommend that I keep taking them even if I go in remission? I am concern about the side effects. -- Sunrise, FL

Dr. Alarcón
It is not appropriate to make individual recommendations. However, it should be noted that flares of lupus are more common among patients who discontinue Plaquenil than among those who continue taken it.

Moderator
How does Arava help lupus? What about Plaquenil and prednisone? These all have been helping but what do each actually accomplish? Why do I need to talk all three? -- Silver Spring, MD

Dr. Alarcón
Again, individual recommendations cannot be made. Arava (Leflunomide) is an anti-rheumatic medication used in patients with RA, and in lupus patients with prominent articular manifestations. You may need to take all three medications at some time. The goal will be to keep your disease under control with the fewer number of meds and smallest doses. In general, we tend to taper the dose of prednisone first, then of Arava, and stay on Plaquenil to prevent the probability of flares.

Juana
Is Rituxin good medication to treat lupus and thrombocytopenia?

Dr. Alarcón
Rituxan has been shown to be very effective in patients with thrombocytopenia (without lupus) and in lupus. It has also shown to be beneficial in the clinical setting but not in the clinical trials.

Moderator
I take 20 milligrams of Methotrexate a week, along with 3 mg of folic acid. Can you explain to me how those work together to offset toxicity? -- Frisco, TX

Dr. Alarcón
The beneficial effect of adding folic acid to Methotrexate to counteract toxicity relates to the fact that the toxic and the beneficial effects of Methotrexate occur at the two different levels in the metabolism of folic acid; so adding folic acid prevents toxicity without significantly affecting efficacy.

Moderator
My lupus is not affecting my liver yet but I was wondering how does Methotrexate and Arava affect your liver? Is it okay to drink socially while you're taking these medications? -- Grand Junction, CO

Dr. Alarcón
Methotrexate and Arava are metabolized in the liver and in the long run may cause liver damage, so the need to carefully monitor laboratory tests to detect problems early on. It has been my practice to recommend NO alcohol at all, knowing that most people will have an occasional drink. I am not in favor of approving social drinking, because such definition is too vague and may be interpreted differently by different people.

Moderator
How does this CellCept help with treating lupus? My doctor has been giving me this medication for almost a year. I feel the same but she says it does help. I have had lupus for almost 30 yrs -- since I was 15 years old. I also have the antibody that causes blood clots. My first clot was when I was 15 years old. -- Indio, CA

Dr. Alarcón
When your doctor says you are better, he probably is referring to some laboratory parameters he is following very closely and which do not have a subjective clinical correlate.

Moderator
Because of extremely low blood platelets I was put on Imuran. Can you please tell me if this drug is safe? I have had a lot of nausea and vomiting. -- East Islip, NY

Dr. Alarcón
Your doctor may need to adjust the dose to diminish the GI side effects. In addition, laboratory tests will be necessary to be sure that the drug is being well-tolerated.

Moderator
Because medication regimen for lupus often involves multiple medications Imuran, Plaquenil, Prednisone, etc. … how can we be truly sure of long term medication impacts? -- Kensington, MD

Dr. Alarcón
All medications have long-term impact. Your doctor monitors you for side effects during clinical examinations and by performing laboratory tests (and other tests, DEXA, for example).

Cathy
How does hydroxychloroquine help control lupus?

Dr. Alarcón
It has many beneficial effects over the immune system and thus it has been shown to prevent flares, prevent the occurrence of damage, and even retard mortality.

Moderator
I am beginning Rituxan infusions for the second round. The first two infusions a year ago went well until my kidneys acted up again. I have had renal failure and my kidneys are a big issue in which treatment to use. Right now my creatinine is at this time 1.85. I am worried the next set of infusions will cause possibly more kidney damage. Should I be concern or look for another form of treatment for my lupus? -- Charleston, SC

Dr. Alarcón
Rituxan did not cause kidney damage; your lupus did. As to other treatments, you need to discuss this with your doctor who is fully aware of the details of your case.

Cathy
What are the side effects of hydroxychloroquine?

Dr. Alarcón
In general, Plaquenil is well-tolerated. Less side effects (GI) occur with the brand name than with the generic. The main concern (long-term) is eye toxicity which is largely preventable with periodic eye examinations.

Moderator
What are your thoughts on using stem cells to treat lupus? What would be the pros and cons? -- Lewisville, IN

Dr. Alarcón
Stem cells for the treatment of lupus should be an extremely well thought of decision in patients who have failed conventional therapy. The potential complications are quite serious, death included.

CindyH
I tried to take Plaquenil when I first found I had lupus, but had a reaction which caused terrible itching. Would it be worth something to try again, or just keep with the prednisone and Methotrexate?

Dr. Alarcón
It may be worth it to try the brand name before giving up in this medicine. Your doctor may need to justify the brand name so your insurance will pay for it.

cocoa30
My 12 year old daughter has lupus, and for some reason, she keeps getting ringworm outbreaks. Increasing the prednisone and Imuran doesn't help. Also, putting ringworm ointment don't help either. What do you suggest?

Dr. Alarcón
This infection is facilitated by the medications she is taking for lupus. She may need a systemic anti-fungal to suppress the ringworm. Her doctor may need to consider this or other options so that both, her lupus and the ringworm are under control.

Moderator
I want to have a child next year. I've been free of lupus flares for over six months. I'm currently on CellCept, prednisone, Inderal, and Mavick. I had some problems with my kidney but everything is okay now. If I become pregnant … which medication should I take during my pregnancy? -- Saraland, AL

Dr. Alarcón
The fewer meds you are on ... the better. Inderal, CellCept and Mavik are contraindicated during pregnancy and if lupus activity allows for it, these medications should be discontinued prior to conceiving.

Moderator
I have been suffering with lupus for over 10 years and the older I get, the more pain I have. What type of medication should I ask my doctor to prescribe to alleviate some of the pain that I am experiencing (lower back, legs, neck and just about every other pain you can imagine)? I have been taking Aleve but it does not seem to work. I have tried Tylenol P.M. which leaves me drowsy the next day. And I have tried Tylenol 8 hrs, which works better except when the pain really gets worse. -- Memphis, TN

Dr. Alarcón
The pain you are describing is probably not caused by lupus, and thus it will not be alleviated by the medications used commonly in lupus. Have you asked your doctor if you may have concomitantly fibromyalgia?

Moderator
I was on Celebrex for a number of years with good results. My doctor has now taken me off as she says that I had been on it too long. I take 2mg Prednisone daily and over the counter pain meds as needed. I am having an increase in my pain level. Is there anything else that I could take? -- Burbank, CA

Dr. Alarcón
Long term anti-inflammatories like Celebrex should be avoided. I will use OTC anti-inflammatories as needed but will avoid their regular use.

pEGGY
If you are taken off hydroxychloroquine because of eye toxicity, will Plaquenil do the same?

Dr. Alarcón
Yes, Plaquenil is the brand name of hydroxychloroquine.

Juana
My doctor does not want me to start Plaquenil because my platelets keep dropping to 8, 6, 4 and have been at 2. I am currently on Imuran and 60mg of prednisone, and danazon. Is there any medication I should take? I have a lupus flare and I feel that my breathing and chest pain have been getting worse for the past week.

Dr. Alarcón
Plaquenil only rarely causes low platelets and thus it is unlikely that it will cause further drops in your platelets. I would not want to have anyone in 60 of prednisone for a long time. Rituxan may be an option but only your doctor can make such a decision given that he knows everything about you and your lupus.

Juana
Is the stem cell therapy approved in the United States?

Dr. Alarcón
Stem cell therapy is done only in a very few places. My understanding is that it is done under protocol and only in patients who have failed conventional therapy.

compassion
Hello, my daughter has lupus and sometimes the pain from it leave her so weak she cannot get out of bed unless she is help by her children or husband. What do you recommend?

Dr. Alarcón
It will be necessary to find out what exactly the cause of her pain is. Lupus is accompanied by arthritis (pain in the joints), and in some cases by myositis (inflammation of the muscles). But many patients who complain of the generalized pain your daughter is experiencing may have fibromyalgia in addition to lupus. She may need meds for this condition rather than an increase in the lupus meds.

eastsiders
What medicine is recommended for the pain of fibromyalgia along with lupus?

Dr. Alarcón
There are a number of new meds being used for fibromyalgia; some of which have been approved. Of course, they also have side effects. Your Dr. will be able to prescribe them on a trial basis.

cocoa30
Can herbal medications help with lupus, such as echinacea, or chamomile? They are supposed to help the immune system. Or are there any herbal treatments that can be used?

Dr. Alarcón
I am not very familiar with using these herbs in lupus. I know for sure that chamomile is innocuous but I cannot say the same about echinacea. Moreover, these preparations may be poor, and may contain ingredients that may be also deleterious (especially when dispensed in powder form).

Moderator
I have had a rash appear on occasion that very closely resembles the discoid lupus rash. Red, circular with raised area in the middle than turns white and scaly after about two weeks. They leave scars, do not itch or cause pain, and usually last about a month. My doctor did a biopsy and the pathologist ruled out discoid. My doctor thinks it may be from my meds. I take 10mg Prednisone, 400mg Plaquenil, 1200mg Ibuprophen, 87mg aspirin daily. My rheumatologist has diagnosed me with Sjogren’s syndrome, Systemic Lupus and Rheumatoid Arthritis. I've been on these meds for 4 years with "ups and downs" in the amounts depending on my symptoms. This rash has only appeared in the last year. I'm VERY careful about sun exposure. Could this be my meds? -- Clarkston, WA

Dr. Alarcón
If a biopsy has ruled out discoid lupus, it is probably neither discoid nor any other form of cutaneous lupus. Of the medications you are currently taken Ibuprofen and Plaquenil could be involved. You may try, in conjunction with your doctor, to discontinue one at a time to find out which one is the one causing this problem.

Sue
I take gabapentin. Is this okay for lupus? I noticed no one else has mentioned this medicine.

Dr. Alarcón
This medication is used primarily for pain control in patients with lupus who also have fibromyalgia. Thus, it is not considered a "lupus" medication per se.

Moderator
I have lupus and am under treatment. I am taking the following medicine. Deltacortel 1/2 tab daily; Plaquenil 200mg 1 Tab alternate day and Zobix 15 mg when required for pain. Please let me know is there is any other medicine is available for permanent treatment, as this is temporary relief. -- Lahore, Pakistan

Dr. Alarcón
Probably the dose of Plaquenil can be increased to daily. Consult your doctor.

Moderator
I have several doctors, and the medications they prescribe often have interactions to each other. How important is that fact? I am on Tegretol, prednisone, multi-d, Coumadin, Methotrexate, lasix, potassium, and a multi vitamin. -- Reynoldsburg, OH

Dr. Alarcón
Every doctor who sees you should be aware of the medications you take to give you specific recommendations.

casper1
I have a question about Bliss. I apologize if you've already gone over it earlier in this Webchat. It was my understanding that Bliss was being developed for use by those with moderate to severe SLE. However, a woman I know with mild to moderate lupus recently told me that she has been in a Bliss trial for almost one year and that she believes it has really improved her health. If Bliss is approved by the FDA, will it be prescribed for people with mild to moderate lupus, like me? When do you anticipate that the FDA will approve or disapprove of it?

Dr. Alarcón
It has not been approved or even submitted to the FDA. Our moderator will post information about BENLYSTA.

Moderator
You can learn more about BENLYSTA here.

Moderator
I have a few questions about the best way to take my medication: Does it matter what time we take long-term medication such as those for lupus? Is it detrimental if the medication is not taken at the same time every day? Is it alright to take it with beverages other than water? -- Singapore

Dr. Alarcon
It is always better to take medications at the same time. Moreover, there are medications that should be taken before meals or in the morning rather than in the evening for maximum effect. Ask your doctor about the meds you take for specifics.

Moderator
I am new to lupus and according to my doctor; I cannot seem to get out of active disease with many wicked flares! He is planning to start me on Imuran so my question would be regarding this drug. Is this a good step? What would the side effects be and anything I need to be careful while taking this drug? Any questions I need to discuss with my doctor? -- Las Cruces, NM

Dr. Alarcón
Initially you may experience some GI problems. The most concerning side effects are those in the bone marrow with lowering of the white cell count and increasing your predisposition to infections. Periodic lab tests help preventing such complications since your doctor may proceed to properly adjusting the dose of Imuran.

Dianne
Are severe leg cramps that are helped by Plaquenil perhaps caused by lupus?

Dr. Alarcón
Leg cramps are probably not directly related to lupus. However since Plaquenil is such a good medicine for lupus, I am glad they help you with the cramps.

Moderator
What are the long term effects of hydroxychloroquine (Plaquenil) medicine? My eye doctor has me coming back to her office in three months based on pictures of my eyes she took last week. Should I be concerned? -- Chicago, IL

Dr. Alarcón
Ask your eye doctor what specifically he is concerned about, and follow his recommendations. If unclear, get a second opinion from an experienced eye doctor. Three months is a shorter interval than recommended.

glo
I have lupus, and in this chat I have heard a lot about fibromyalgia. How is that test done? Is it just a simple blood test or something more?

Dr. Alarcón
Fibromyalgia is a clinical diagnosis. So far there is neither a blood test not any other test to diagnose it but most experienced clinicians (rheumatologists in particular) can recognize and diagnose it.

cocoa30
When on prednisone and other medications that increase weight gain -- what is the best remedy for losing the weight other than exercise? Seeing that we really don't have the time to exercise.

Dr. Alarcón
It is true that patients on prednisone tend to have more appetite and thus their weight increases. However, maintaining weigh is a balance between the amount of calories ingested and the ones utilized. So, you either consume less calories or burn more. There is no other way.

Dianne
Could you explain how Plaquenil modifies or slows down the progression of lupus? Thanks.

Dr. Alarcón
It prevents the occurrence of flares. Since flares (or disease activity) are a big contributor to damage (and damage to mortality), Plaquenil slows the progression of the disease. Furthermore, Plaquenil helps with lipids, the cardiovascular system etc, so it is overall quite beneficial.

Moderator
I have lupus (no organ involvement, but joints are affected) and fibromyalgia. What is recommended medication for joint stiffness, pain as well as the flu-like aching of fibromyalgia? Will the new drug reduce fatigue? -- Birmingham, AL

Dr. Alarcón
Meds that are used for fibromyalgia may be of help to you.

Moderator
How to reduce the side effects (nausea, fatigue) of CellCept? When will Benlysta be available? -- Summit, NJ

Dr. Alarcón
There is an alternative preparation (mycophenolic acid) which is much better tolerated. Please refer to the BENLYSTA link above for more information.

Moderator
I have cutaneous lupus and I get the lesions on my face, neck, and head. I am on Plaquenil. Is there any other type of medication that will control the massive amount of lesions? Especially on my head. -- House Springs, MO

Dr. Alarcón
This should be addressed by a dermatologist. In general, prednisone may be necessary during the acute phase of cutaneous lupus.

Moderator
I'm 52 and diagnosed with SLE (and Sjogren's) about 3 years ago. I was just started on Arava 3 days ago. I'm having side effects of all over body pain, chills, chest pain, headache, coughing, but none are long lasting. I want to try to hang in there to see if the side effects subside because I'm so desperate for some relief from this lupus. I also take Plaquenil twice daily. I have to take Coumadin for A-Fib, so I have been told not to take NSAIDs. Steroids caused a lot of weight gain so I am in the process of tapering off of that. Can you give me your opinion on whether you think Arava is a good treatment option generally speaking, and am I right or wrong to hang in there in spite of these side effects? I'm in the midst of changing doctors. My current rheumatologist is not meeting my needs and I have an appointment to meet with a new rheumatologist in February. -- Athens, GA

Dr. Alarcón
The initial side effects of Arava tend to diminish. Hang in there.

Moderator
Can depoprovera injection shot harm lupus patients? -- New Orleans, LA

Dr. Alarcón
The risk of flares has not been specifically studied with depoprovera, but not containing any estrogens it is probably not very substantial.

Moderator
What medications are usually prescribed when one has mild kidney involvement (symptom free) and joint swelling and pain? -- San Leandro, CA

Dr. Alarcón
Individual recommendations cannot be made. However, I think Plaquenil is indicated in your case; whether you need something else or not ... will depend on reviewing your entire case.

Moderator
Certain medications that I have used were temporary; however my doctor believes I will use Atacand (16mg) for my lifetime. How can you stop using this medication? Do you need to be in remission in order to quit? -- South Orange, NJ

Dr. Alarcón
This is a blood pressure medicine. If your doctor thinks you need to take it, please do so; do not quit taking it unless your doctor says so (your blood pressure is normal off meds or with a different med).

Moderator
I recently went to the doctor; I was having chest pain all the time. I am taking CellCept, prednisone, Plaquenil, and coumadin. The doctor gave me a drug for gout called Colchicine. I was surprised but it’s really working. Is this a normal medication used or am I one of the few? -- Winchester, VA

Dr. Alarcón
It is hard to know exactly why your doctor prescribed this med, which as you correctly pointed out is used for gout. Please ask your doctor.

Moderator
I have been taking Plaquenil for awhile and found it was toxic to my body. What damage have I done and what is out there for me to take now? My white count is at 200. -- Queen Creek, AZ

Dr. Alarcón
This is a very dangerous level of white cell count. You should see your doctor immediately!

Moderator
Mi pregunta es cual es la repercucion del uso de micoflavin durante el embarazo ya que mi cunada sufre de lupus en Honduras y esta embarazada y su doctora la esta tratando con micoflavin durante su embarazo?

Dr. Alarcón
The question is about the use of CellCept. I will give the answer in English and Spanish.

This is medication is the same as CellCept and thus not recommended during pregnancy.

Esta medicina es la misma que Cellcept y por lo tanto no esta recomendada durante el embarazo.

Moderator
That is all the time we have for today’s chat. Thank you to Dr. Graciela S. Alarcón for joining us.

Our 2010 schedule will be posted in the coming weeks. Happy holidays!