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scarlett2418
07-14-2008, 03:45 PM
my name is scarlett. my mom was diagnosed with lupus (internally and externally) at 24 by UAB (University Of Alabama at Birmingham). she was put on the drug plaquenil by UAB while she was pregnant with me. my mom recently went to a doctor. the doctor did some tests. she doesn't have lupus internally. the doctor asked her if she smoked while taking plaquenil and my mom said yes and the doctor said well any doctor knows plaquenil becomes inaffective if you smoke. so my mom took it and made me high risk for no reason (i don't blame her i blame the doctors). i'm 15 years old and i have a fast pulse rate, high cholesterol, thyroid problems, menstrual problems, and anxiety problems. i take 6 pills a day at 15 and the doctors don't know why. i don't have a family history of these problems. is there anyone else who has these problems? any info is greatly appreciated! i'm about to drive myself crazy trying to figure it out :mad:

cheryl_v
07-14-2008, 08:11 PM
Hi scarlett2418, sorry I have no info for you. Hopefully someone will come along and be of some help. I just wanted to say I'm so sorry you have so much to deal with at a young age. I hope docs can give you some answers soon, its very frustrating dealing with so much at once. We all understand that to well. Vent all you want, it helps to let it out. Praying for you and your mom to feel better :D .

Saysusie
07-14-2008, 09:07 PM
Nicotine from cigarettes can affect almost all medications. I've not heard about nicotine making plaquenil completely ineffective. There was/is some concern about nicotine's affect on the eyes while taking plaquenil, but still, nothing about nicotine making plaquenil ineffective. That is not to say that the way that cigarettes affect plaquenil is to lessen its effectiveness, I just could not find any proof of that.
Because lupus is a disease that strikes predominantly young women in the reproductive years, pregnancy is both a practical and a research issue. For most women with lupus, a successful pregnancy is possible. This is an immense change from the 1970's, when most women with lupus were counseled not to become pregnant. Studies of the immune system in pregnancy are of interest for what they have taught us about the effect of hormones on lupus flares.
Prednisone is largely metabolized by the placenta, and is unlikely to cause any fetal malformations, but will increase the risk of diabetes and hypertension in the mother. Plaquenil may appear in breast milk and could affect a nursing infant. Although concentrated in breastmilk, Plaquenil is on the list of medicines that the American Academy of Pediatrics says is usually compatible with breastfeeding. The AAP lists no reported signs or symptoms in the infants of mothers taking this medication. It is reassuring that it is not on the AAP's list of medicines that are not compatible with breastfeeding or which should be used with caution.
As such, I am not quite sure how your mother's use of Plaquenil opened you up to the maladies that you listed. Children are especially sensitive to the side effects of hydroxychloroquine (Plaquenil), but I've not read anything about Plaquenil during pregnancy causing you to be at high risk. Could you, please, tell me exactly what your doctors said as to how your mother's taking Plaquenil during pregnancy put you at high risk because I could find no studies to that effect.

Peace and Blessings
Saysusie

scarlett2418
07-15-2008, 07:50 AM
thank you for the concern and info. saysusie: i find it very interesting that the AAP says plaquenil is compatible because my mom was told by the doctors at UAB that i could not be breastfed at all. which is why i'm so confused because none of it makes any sense. and to answer your question the doctors at UAB said that i was high risk because of my mom taking plaquenil and because she had lupus. which now we've found out that she doesn't. its pretty scary on a day to day basis for me because i'm 15 years old and i'm at risk for heart attacks, stroke, and even heart disease. i'm pretty sure my dad has cholesterol problems and blood pressure problems but that's all i can think of. but that still doesn't explain the fast pulse rate and thyroid problems which just suddenly appeared one day. i have lost a brother at 18 and a grandfather. i'm starting to wonder if that has anything to do with it.

Saysusie
07-15-2008, 09:55 AM
I'm still not understanding the doctors saying that having Lupus and taking Plaquenil puts the child at "High Risk". There have been many studies about Lupus and heredity and/or Lupus and genetics. Heredity does seem to play a role in persons who develop Lupus. Ten percent (10%)of lupus patients have a first-degree relative (sister, daughter, son, mother) or a second-degree relative (aunt, uncle, first cousin) with lupus. But, if only 10% have a relative with Lupus, then 90% of people with Lupus DO NOT have relatives with lupus. It is suspected that people might inherit something from their parents that predisposes them to develop lupus. They are not pre-destined to develop lupus, but they may be more susceptible. Relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it.
Now, nothing about having Lupus and taking Plaquenil during pregnancy pre-disposes the child to having heart problems (fast pulse rate etc.). You may be pre-disposed to having Lupus and the disease itself can cause problems with the heart. Those issues are due to the disease, not to your mother taking Plaquenil during pregnancy. Yes, plaquenil is absorbed into breast milk and, as such, the infant might experience some of the side-effects (nausea, dizziness, etc.).
Now, here is an important issue that you should understand. Plaquenil was originally used to treat Malaria. As such, it was given in very high doses (starting at 800 mg/day). At those high doses, Plaquenil could (on rare occassions) cause heart problems in the patient! BUT, when using Plaquenil to treat Lupus, the dosage is very small (starting at 200 mg/day) and, therefore, heart problems are NOT listed as side effects when used for treating Lupus unless the dosage is substantially increased or the drug is used for an extensive period of time (more than 3-5 years). It would seem to me that the cigarette smoking would be more damaging to an unborn child!
In any event, your heart problems should be treated, regardless of their origins. Have you received a diagnosis of Lupus? What treatment are your doctors recommending for your heart problems?
Try not to be too frightened, I know that is easier said than done. You are very young and I know that this is all a bit much for you to have to deal with. But, I am glad that you came to us. We will always be here to try to help you in any way that we can and as much as we can.

Peace and Blessings
Saysusie

scarlett2418
07-15-2008, 02:03 PM
i haven't been tested for lupus yet. but i think my mom plans on it. my mom was on plaquenil since she was 24 and she had me at 30. my mom smoked but when she found out i was pregnant she quit just like she did when she had my brother and did not start back until i was in kindergarten. the doctors have done an ECG of my heart and they said my heart was normal. well apparently its not because i have a high pulse rate. i'm on beta blockers to keep it down and i've been on them for at least a year now. i'm trying to come off of them but i still have to take them when i excercise. my main point is why was my mom taking plaquenil if she doesn't have internal lupus? are the tests for lupus always accurate? also where are you getting your information? is there any website i can go to that tells me all this?

laurid8967
07-15-2008, 04:18 PM
Scarlett,
Im sure Saysusie will be along to tell you where you can look up information. I will say, however, that in all my years researching this disease, that I have met NO ONE who has more accurate information about lupus (ALL forms of lupus) than Saysusie.
It sounds as if maybe you misunderstood your doctor? Or maybe he didnt have his facts straight. That is in no way an insult to you....MANY MANY doctors are underinformed or misinformed when it comes to this disease. Plaquenil is, by far, the safest medication (and most widely used) to treat lupus. The other options are prednisone -which can have some horrible side effeccts, or chemotherapy - which Im sure you know about.
Many people have an increased heart rate - with no reason for it at all - its just the way their heart is. My blood pressure, for example, is always EXTREMELY low - like 90/60. This is considered dangerous for some, but very normal for me...
You need to try and stop worrying, relax and enjoy your youth!! All that anxiety can only make your heart rase WORSE...Be very grateful that you DONT have lupus, honey. Just because your mother has it, does NOT mean you will have it. Not ONE person in my family has lupus, and neither do any of my kids, OK?
Please, try and relax, and get another doctor if need be....take care!
Love Lauri

laurid8967
07-15-2008, 04:23 PM
Also - I smoke and plaquenil has worked for me in the past, and is working for me right now.
Maybe your thyroid problems or your anxiety is making your heart rate increase? Thyroid can absolutely do that, as can anxiety.
You are so sweet to be so nervous about such things...Have you tried breathing exercises to relax? They work wonderfully if you are taught the right way. Im sure youre rolling your eyes right now (I have a teenage daughter lol), but it really works. I hate to think of someone so young in the best years of their life worrying away the days....
Take care of yourself, and keep posting. We are here for you, OK?
Love and prayers coming your way -
Lauri

scarlett2418
07-15-2008, 05:13 PM
no offense taken. I KNOW that doctors can be very misinformed. and so does my mom. that's one of the reasons i looked for a website like this. because i wanted someone to talk to who wasn't a doctor that knew alot about lupus. i can't tell you how many blood tests, doctors visits, pills, and everything else i've been on. its just kinda like none of the doctors i've been to can tell me why or if there is even a reason why. i would be happy with just a "there is no reason its just the way your heart is" than a "i have no idea". but now that i've learned some facts about plaquenil i can rule that out. i guess i'll just have to keep searching for a doctor that actually cares. and about the breathing excercises, i haven't tried that. but i do yoga. and i work out everyday. thanks for info and support. i'm happy to know that there is somebody in this world who actually cares about me besides my mom.

laurid8967
07-15-2008, 05:45 PM
We do care, honey, and keep us posted on how you, and your Mom are. Good luck in search, too.
Love, Lauri

Faith
07-15-2008, 08:46 PM
Hi Scarlett,

We haven't met before, but I have been catching up and noticed you had questions about a high pulse rate.

I was originally diagnosed with hypothyroid (underactive) and picked up tons of weight. After exercise and diet, I lost a lot of the weight. I was then diagnosed and then 18 years later diagnosed with Lupus.

I was constantly tired and have blood work every 2 mos. At one point, I had a very high pulse due to my thyroid meds being too high even though still tired from the fatigue. My thyroid changes constantly and has to be monitored; my doc lowered my levothyroxine and the pulse dropped to normal range.

How often do you have your thyroid checked and do they run a TSH, T4, T3 free? If not, you might want to talk with your doctor about it. I also had menstral problems and learned that taking Cinammon capsules 2x daily during your menses controlled it. For cramping and uterus contractions, I take 2 liquid filled Advil and slept with the heating pad at night. I totally sympathize. If you are worried about having Lupus, get into a rhuematologist and ask to have the tests run under the subsection "newly diagnosed" and it lists tests that can be run for Lupus.

We do care, keep us updated and take care,

Faith 8)

scarlett2418
07-16-2008, 09:02 AM
i was originally diagnosed with underactive. but i just recently had it checked again and now its overactive. so mine is changing. i'm off my beta blockers and i only take them when needed and my pulse has been really good (except for the times when i have panic attacks and i have meds for that). i'm starting to think it was my thryoid that was causing it. and my mom has an appointment with her doctor and she is going to see about me getting tested. i definitely will keep you guys posted. anyway thanks for the info and support!

Saysusie
07-16-2008, 10:49 AM
Scarlett;
I want to go back to your question about being prescribed Plaquenil when lupus is not internal. Aside from what Plaquenil can do for Lupus if internal organs are involved, Plaquenil is one of the best treatments for dermatological issues with Lupus. If most of the symptoms of the disease involve the skin, Plaquenil works very well on treating and healing those issues. So, it is a drug that is prescribed for and works well for treating Lupus, both for internal symptoms and for dermatological symptoms.
I know how scary it can be to be so young with heart problems. Let me say that the #1 cause of a rapid pulse rate is emotions (anxiety, nervousness, worry, and stress, etc.). Sometimes, we do not realize that we are living in a constant state of stress which can cause many problems, some which can be life threatening. The biggest enemy to those of us with Lupus is stress. Stress causes our disease to re-activate, causes our symptoms to worsen, and causes our flare-ups to occur more frequently, to be more severe, and to last longer. Sweetie, it is IMPERATIVE that you take steps to alleviate your anxiety, worrying, nervousness and stress!
Now, there are many, many conditions that can cause a rapid heart rate, one of those conditions is hyperthyroidism (as Faith mentioned). The reason that I've mentioned that condition is because Lupus can often cause thyroid problems (hyper and hypo). Also, anemia can result in a rapid pulse rate. Many of us with Lupus are also anemic. Have you been tested for this? High blood pressure (hypertension) will also cause a fast pulse. Lupus often causes a disorder known as pulmonary hypertension (this involves the lungs) whose symptoms include a rapid pulse rate.
So, as you can see, the causes for rapid pulse rate are quite numerous. Your doctors will have to run thorough tests in order to determine the exact cause of you rapid pulse rate. But, until that is done, I (again) must reiterate the importance of taking immediate steps to lessen your stress.....please do that!
We are here for you, everyone here cares about you. Please keep coming to us so that we can help you as much as we can.

Peace and Blessings
Saysusie

scarlett2418
07-16-2008, 01:07 PM
yeah i know alot about that. when my mom gets stressed her lupus on her skin gets really red. the last time i was checked for anemia which was a couple weeks ago the doctor said i was slightly anemic. but i'm sure when i go back she'll check it again along with my thyroid. my blood pressure is perfect. i'll keep you posted if i found out anything. but until then thanks for the support and info.

Saysusie
07-17-2008, 10:44 AM
You are very welcome :lol:

Peace and Blessings
Saysusie

tnatemark
08-24-2008, 09:22 AM
Saysusie,
I am interested in your knowledge of Plaquenil while breastfeeding. I have a 4 month old, and was just prescribed Plaquenil even though my diagnosis is yet undetermined. Most reumatologists are leaning toward RA, though all originally suspected lupus due to my severe sun sensitivity. Anyway, my immediate problem is how to weigh the risk of delaying treatment for myself versus health risk to my infant by weaning early. Half of my reumatologists said that Plaquenil is safe, while the other half say wean immediately and start the drug. Just curious if you have additional information on the drug's safety wile breastfeeding.
Thanks and regards,
Christine

Saysusie
08-24-2008, 10:03 AM
tnatemark;
Plaquenil has been found to concentrated in breastmilk. However, Plaquenil is on the list of medicines that the American Academy of Pediatrics says is usually compatible with breastfeeding. The AAP lists no reported signs or symptoms in the infants of mothers taking Plaquenil, although this is not based on many studies or observing large number of infants, so you should still discuss the risks vs. benefits of taking the drug while breastfeeding. It is, however, reassuring to know that it is not on the AAP's list of medicines that are not compatible with breastfeeding or which should be used with caution.
Studies on Plaquenil (hydroxychloroquine) and breastfeeding have shown that the drug passes through breast milk, but in relatively low amounts (too low to provide any malaria protection for the infant ). Studies also suggest that the risk of eye damage in the infant is very low (eye damage is a known Plaquenil side effect). In general, the benefits outweigh the risks when Plaquenil is used for Lupus. But, still, discuss its use with your doctor!

Peace and Blessings
Saysusie

scarlett2418
12-21-2008, 10:47 AM
Its been 5 months and I just found out exactly what is going on with me. I went to an endocrinologist on Friday that one of my teachers recommended me to go to. She told me that I have an autoimmune disorder called Hasimotos. Its basically a disorder where my cells attack my thyroid and therefore I don't produce enough hormones. I got blood work done and she said she would see me back in a couple weeks to see what dose of hormones I should be put on. All is well now that I have found out what the true problem is. But I wanted to come back and post to let you know how much I appreciate your support and that I haven't forgot about you. Thanks again. Scarlett :)