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  1. #1
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    So, yesterday I went to the rhumatologist an was diganosed with lupus!! I'm not sure what to think..... I left there and went on with my day to day acting like nothing had happened. I didnt let what he said affect me at all...Am I crazy or what?? I really havnt felt any emotion about my diagnosis yet....i guess its a little surreal.. I was perscribed prednisone and something else..not sure the name of it. I havnt started taking them yet...Im super freaked out about taking meds. ...I really don't like to take anything. I take about two advill a day, and for me, thats a milestone!! I ask myself how much pain do I have to be in before I actually take something ..how bad does this disease have to get before I take the nxt step wich is taking the meds. Since i've been dealing with the pain with no medication for so long, why start now?? Then I go to stand up, and my knees, feet and ankles hurt...My hands are so swollen and hurt sooo badly... I'm not sure what to do. So this is my first stop...an online support group!! I have to get some insite on this disease and the meds, and hopefully some alternate treatments.. Thanks!!!

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    Hi Sarah,
    Welcome to WHL. You've come to the right place for understanding and information. It is a little overwhelming at first. Like you, I was never one to take meds. Gee, I never even had any kind of medication when I had my five babies.
    That said, it is important to start to take your meds. I'm guessing that the mystery one might be Plaquenil (also called hydroxychloroquine). It takes six months or more before you notice that it is helping, but it does help. I've had a few unpleasant side effects (the trots), but I always take it with food and I've gotten used to it.
    I can't take prednisone, or any steroid because I have Avascular Necrosis. If you read the threads, you will see lots of discussions about steroids. Many docs start people out on them to bring the inflammation under control, then taper them off. The next step is Methotrexate, or another immunosuppressant. This seems sort of scary, but it is a great way to keep AI diseases from progressing. I think that slowing down the progression is very important.
    Feel free to look around this site, read the threads and the stickys, and chat with some of us. We all understand what you are going through.
    Gentle Hugs,
    Marla

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    Hi Maria. Thank u for responding!! I am super overwhelmed.. but am going to continue to do more research before i decide to take the meds or not. And yes, the other med they perscribed is hydroxychloroquine. My question is, what is the trots?? I really need to read more threads and pick up the lingo.... Like I said, I'm a new-be

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    Hello Sarah,

    i don't take the meds. the plaquenal made my gi tract so upset. and i won't take the steroids either. i see a pain management dr. for pain she gives me rx for i only take those when i can't stand it anymore. i also have fibromylia and osteio arthritis with the lupus. sometimes i get confused which one is acting up so now i just wake up each morning and say ok this hurts this doesn't i have energy or not and get out of bed an move on. you know your body the best. try the meds if they work take them if not than stop but you should at least try them before making up your mind. this site is great to vent and get information on. sorry that you have lupus but at least you know what it is.
    Keep Smiling

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    Thank u Gina!!! U are exactly what I am looking for. Someone who has tried the meds, but dosnt now and knows the difference. I havnt rulled out trying them...im just dragging my feet... So gina, you have all of this pain, and just deal with it on a daily basis? Thats what I do, i wake up and say, this hurts, but I still have a ton of things to do during the day, plus I have a 21/2 yr old son that makes it impossible to let the pain take over anyways. ....but i'm not sure of any long term damage not taking meds is gonna do to my body. I was reading about changing my diet and other things to control the desiease. Im young and eat super healthy all ready, i'm also training for a triathlon in april, so i think I have the diet and exercise part under control.. Do you, or have u tried anything thing else alternitave?? Please let me know. Thanks again for your advice.

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    Hi Sarah,

    Welcome to WHL. I remember when I got my SLE diagnosis. It was way back in 2004. I know what you mean about it being surreal. Wanting to simply go on with life and not think about it is a natural, and common thing. Resistance to taking meds is too. I used to take almost no meds at all when I was healthy. Maybe a tylenol for a headache, but it was rare. The meds prescribed for treating SLE can have some serious side effects. But, you need to weigh the possible side effects against the possible damage Lupus can do to a person when left untreated.

    I know you don't want to hear this, but you need to really think about taking the meds your Dr./rheumo prescribed. You don't want to let the disease get out of control. I am on Plaquenil, and it really does help. Before I was on it I had maybe one good day a month, and now I feel pretty good 3-4 days each week. What was oppressive pain and fatigue, has become manageable.

    Like Marla, I am assuming the second med is Plaquenil. Between the Plaq, and Prednisone, Plaq is definitely the one with fewer side effects. Maybe you could consider just starting the one med for now, leaving the other for later down the road if needed. Of course, ask your rheumo about this first. Also, you can help yourself right now by avoiding the sun as much as possible. Good quality sunscreen, and a wide brimmed hat can really help with this. Also, stress reduction, proper diet, and appropriate exercise will help too. I would caution you about so called "Natural" treatments. The vast majority of products sold as alternative/natural treatments have little to no therapeutic value, and are terribly expensive. None of the lofty claims of "curing" Lupus with these products are backed up by any clinical evidence at all. Buyer beware.

    I hope I don't come across as lecturing you, as that's not my goal. You can certainly make your mind up for yourself. Just consider that the meds can be your friend, and not something that necessarily works against you. Much of the pain you are living with could be significantly reduced, and that's a good thing.

    Once again, welcome to our group. Please make yourself at home!

    Rob

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    Hello welcome
    im newly diagosed 3 weeks and on planequil at full dose now,i was on meds before also but more for rheumatoid arthritis i can say i was on medication for that and went into remission then when the rheumatoid arthritis came back i did not take medication until desperate then self emdicated i strongly suggest against this as a result of my choice my rheumatolgist is now battling to control my discease and ive also gone onto to develop lupus for which im no right medciation now.
    i dont like to take pills but ive learnt hard way to accept why i need them.

    and ive seen how i was without them the improvement from planequil has made no end difference to my skin rashes all gone.
    fatogiue ahs improved.
    and im no track to try for child soon as methotrexate out of my system.

    whichever way you decide your choice.
    just thoguth good to share.
    take care
    melly

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    Sarah,
    LOL - The trots is a nice way of saying diarrhea, as in trotting to the potty!
    As Rob and others have said, plaquenil is a fairly mild med and it does help. It's worth giving some thought to, since it is supposed to slow down the progression of the disease.
    Hugs,
    Marla

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    Hello and welcome to our family
    You've been given some very good advice and I hope that you will seriously consider some of it. I just wanted to add something to help you in this decision. Lupus is a progressive disease. Meaning that, if left untreated, it can get progressively worse. It can attack your internal organs causing serious problems which can become fatal. The organs most often attacked are the heart, lungs, and kidneys. Now, a malfunction in any of these organs can lead to life threatening symptoms.
    The purpose of medications, in Lupus, is to slow the progression of the disease; to hopefully, reverse any damage that has been done; or to prevent the disease from causing damage. Because of this, it is important that you take your medication. Holistic treatments rarely work on Lupus (even though you can find tons and tons of testimonials on the internet, none of these have the backing of verifiable research!). In fact, many herbal remedies actually worsen or can initiate unwanted symptoms in Lupus.
    If your medications are Prednisone and Plaquenil, it would behoove you to start taking those meds. As has been mentioned, Plaquenil is a cumulative drug, so it takes a while before you can see the true benefits. Therefore, the longer you postpone taking it, the longer it is going to take before you start to see/feel relief. The two drugs together often have remarkable outcomes and have allowed many Lupus patients to maintain a reasonably normal lifestyle. But, you must take the medications.
    Lupus is not a disease that you can just "grin and bear it". It is not like a torn ligament, or a flu, or a headache. It is a chronic disease, meaning that it is a lifelong disease. You cannot wait it out or simply deal with it. It will not get better and it will not go away on its own. Left on its own, it will progress to a dangerous and even fatal point. You DO NOT want your disease to get to that point. You want to slow or possibly stop its progression and that can only be done by taking your medication, making appropriate lifestyle changes, eating healthy, exercising regularly, and learning how the disease affects you.
    Please consider seriously taking your medication!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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