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Life With Lupus

Anyone with Lupus who doesn't take meds for it?


#32

Lone Wolf, I have seen many lupus patients die before they are 50, and all that I knew about had been on massive doses of many meds, that cause more serious side effects than lupus. I am sure the drugs contributed to their death.The way I feel poisoned when I take them, I can see how meds can keep you sick and be a self-perpetuating business, but I also know that some people absolutely need the strong cortisone. I just feel sad for those who do need that poisonous drug. I have needed a week's worth, but not on it permanently. Now learning more about anti-inflammation diet and foods that are anti-inflammatory. Curcumin, the active chemical in Turmeric, is a wonderful pain med and anti-inflammatory. You can buy it in capsules. Some have been able to go off cortisone due to curcumin. It also heals the stomach and liver, unlike other NSAIDS.


#33

Hi Lynn,

So I think your question is an interesting one as it relates to where I am in my journey. There have been times when I have been non-compliant with doctors' indications. Once it resulted in a huge flare involving my kidneys and it scared me s_&*less!! I am like many here who would never advise anyone to just stop taking their meds. I am currently however at a place in my life in which I am trying natural alternatives. I'd rather not have to get up every day and take six different medications. I am working towards that. Sometimes I'll go a day or two without meds and there is no notable difference. I'm actively working towards the day when I can wake up and worry about what to eat for breakfast or my tasks for the day instead of how many pills do I have left and when I have to re-order. For me, these types of worries are not normal. I want to be normal again.


#34

Some people are 'fortunate' in that their lupus does not affect them with life threatening issues and by all means they should try alternate methods healthy lifestyle etc. However some of us are not so blessed and even worse often do not have warnings of impending disasters I am one of those My first critical illness I didn't feel well, tired, aches pains, rash The day I crashed I was at work and had been seen by 3 different doctors that very day- no meds were deemed necessary just something for pain. Within 5 days I was in intensive care with blood values not compatible with life, total kidney shutdown, congestive heart failure etc etc etc I was 19 yo and given less than a 20% chance of survival for 5 years. As well as being advised that I would be on dialysis should I survive. I have had 4 episodes like this over the years the last being in 2010 and the ONLY thing that has saved me is medications. And each episode was preceded with a period of 'remission' where I was being maintained off of medication. I have been fortunate to have superb doctors to support me and I fully accept that medications are necessary to PREVENT these life threatening flares I am older now and don't believe I can survive another crisis I feel pretty good right now but you couldn't pay me to go off my medication- In 2010 I went off my plaquenil and ended up in the hospital again with blood values not compatible with life- a direct result of stopping the plaquenil. It has taken a full 4 years to even begin feeling near normal The "Toxins' of medication is actually far less than the ramifications of no meds So KUDOS to those that can safely cope without medications but be aware of your individual disease and how it affects you cause this disease can still be a killer even in this day and age.


#35

So, for the original question. I was taken off of my medication for one month. I had a new doctor, who had a new theory and wanted to be sure that I really had lupus.
I had such a horrid flare up and so much pain by week 3 that the doctor took blood, restarted the meds and sent in a referral to a specialist.
She further told me that now, since I have gotten insurance there are much better medications available.
I am grateful to have gotten my job, and wonder how much I suffered prior because I worked at a non-profit and could not afford health insurance.


#36

Thanks so much to everyone for their personal stories and inputs-- definitely appreciated!!


#37

I agree with poobie. It really is a case by case matter. I recall what my life was like before the medication. I see what life is like today even with my medication. Translation; Mindy will keep taking her meds. LOL. I have a friend, Winnie, who has been mostly in remission for about 15 years. She gets small flare ups once in a while. So, until those small flares, she does not take medication. She controls her Lupus through diet and rest. I know another woman who does the same. She can even do Yoga nearly every day. I would not be able to do that. I can barely take my dogs out to the bathroom. I feel really good the days I can walk them around the block. Proud, actually, of those days. Their lupus is different. Just like every case of cancer is different, each case of Lupus is different. Don't allow the ignorant to make you doubt that. Just be glad in your heart that such ones will never know what it is like for us. Then be grateful for those among us who do not have it as badly as we may. Also, give encouragement and love to those of us who have it so much worse than we do. They need it. We all do. So keep sharing, my friends.


#38

I think about quitting the plaquenil everyday and I want to stop it but....I don't want to feel bad. I am exercising again and doing well. For now I will keep taking it...


#39

My dr. Decided to take my Lupus meds off the table and delete it from my medical records because down the line it may benefit me in some way. But I am being treated for each symtom separately. So I still take lots of meds but J. Don’t get the benefits of the meds I need. So stay on you Lupus meds, you will be glad. My hair still falls out, my pain is still unbelievable and depression is always there, I’m still sick and tired and have no social life, my tv and closed doors are my friends.


#40

Huh? Is your doctor a rheumy? Deleting information on a medical record is against the law. This all sounds really whacked to me because you're suffering. If the doc was worried about a pre-existing condition, insurance companies can't do that any more. I really question his reasoning.


#41

Life insurance companies can and do use pre-existing medical info also disability insurances


#42

Hey Carrie, Do you mean that that your doctor deleted the med from the list of current meds being taken? Not the diagnosis or symptoms?

I have to agree with Lone Wolf...this is more of a Spiritual path then a health issue...it just looks like Lupus.

When we are brought to our knees by suffering we learn the truth of who we are. Although, I appreciate and respect the good most doctors provide...

many of my medical problems were by mistakes and poor judgement by various doctors...meanwhile I put my faith in them.

Not Gods but mere mortals...My lesson is to learn to forgive and move on...each of us is so special...but make no mistake about it...meds have side effects...know what is going into your body...one that is all ready immune dysfunctional.

I go without meds until I have a flare up...then I chose depending how severe it appears to be. I am concerned about my liver and kidneys first. When well.... I try to support my GI tract and skin. Our skin is the largest detox organ of the body.

Protect myself from the sun, lights and fires that might trigger a photo-dens reaction.I wish you all well moments that last

a lifetime. Wingwalker


#43

Still question the reasoning.

poobie said:

Life insurance companies can and do use pre-existing medical info also disability insurances


#44

I think that if you ever decided not to take prescription meds for lupus, you ought to look into alternatives. If you don't take anything at all, your organs can fail in a heart beat. Talk to your doctor(s) before making the decision to stop your lupus medicine(s). NEVER and I repeat, NEVER stop your meds without speaking with your doctor first.


#45

I only take a few meds and they are for symptoms I.e. Pain med or sleep aids.


#46

Hi lynn4545,

You have asked the very question I myself have been pondering. At this point in time, I have been fighting this battle for over 15 years now. Lots of meds have been tried, most have failed. I had tried at one point to stop taking plaquenil and in the space of four days, I could barely function. Now that I know what I am truly dealing with, I believe the results would be different. I will keep you updated if I decide to try stopping my meds. I wish you the best if you decide too. I think I would lower the dose a little at a time though. Can't imagine it would be in our best interest to stop all at once. I plan on keeping a journal to keep track of what is happening and how I am feeling. I can't remember details as well anymore. Again, best of luck and please be careful.


#47

Hi elfin66:

I am thinking of stopping my plaquinil in the fall. Have you already stopped yours? How are you feelinhg?

elfin66 said:

Hi lynn4545,

You have asked the very question I myself have been pondering. At this point in time, I have been fighting this battle for over 15 years now. Lots of meds have been tried, most have failed. I had tried at one point to stop taking plaquenil and in the space of four days, I could barely function. Now that I know what I am truly dealing with, I believe the results would be different. I will keep you updated if I decide to try stopping my meds. I wish you the best if you decide too. I think I would lower the dose a little at a time though. Can't imagine it would be in our best interest to stop all at once. I plan on keeping a journal to keep track of what is happening and how I am feeling. I can't remember details as well anymore. Again, best of luck and please be careful.


#48

i remember i went to the emergency department because i had a terrible coughing fit. It disturb everyone and myself in class so i finally go to the hospital. The nurse is a friend of my mom and she said she had lupus too but not to the extent of prescribed medicine by the doctor, then she said one of the prednisolone’s side effect is decrease in bone density but my mom told me to ignore her and continue taking my meds but i’m so sick of it. I was mad when i found out what they side effects were and i was more upset that it caused my weight gain.
I was fine when i was wearing NGT, so i can’t taste the medicine (and i admit, it felt nice when cold liquid enter my stomach), now i have to take it orally, i hate it so much.

I know If i can jsut change my diet and lifestyle, have a way to relieve stress and whatnot, I can live my life without taking medicines…(well atleast i think so…)


#49

I’m 58 and I’ve had Lupus since about the age of 18. I’ve been mostly drug free (after dumping all my meds in the trash many years ago over frustration of all the side effects). I know some people need meds because of organ failures etc., but I believe that I’m one who does much better without all the meds. I recently returned to meds for various reasons and once again…the meds are going in the trash! I still have no organ involvement, so I’m going to take a more naturopathic approach. I take Turmeric but maybe I’ll try Curcumin. I’m assuming it’s stronger since it IS the active ingredient in Turmeric? How much do you take a day? It’s wonderful that it is working so well for you! I need to get this inflammation under control…naturally! Good post!


#50

I had a five year period when I was in remission and didnt take anything but when I flared again it hit me hard temps of 106.8 since then I have been trying to find the right mix between natural treatments and traditional protocols I have found for me red borneo kratum worked wonders for my pain but drove my potassium so high I almost landed in the hospital currently I am trying CBD with the goal to get off the oxycodone and tylenol So I read everything I can about new treatments and potential cures knowledge is powerful God Bless


#51

Last January 3 days after I was diagnosed with Lupus I ended in urgent care for pericarditis. I was given medication and sent home. Two weeks later pain was not better and I ended in the ER. The Dr sent me home and said he couldn’t find anything wrong with me. One week after that I managed to make an appointment with my regular Dr and she sent me back to the ER. I was hospitalized for 3 days. My kidneys were failing and my pericarditis turned to pericardial effusion. It took time for me to get back on my feet and to stop feeling pain, to be able to breath and walk w/o feeling out of breath. I really thought I was going to die. I am now taking plaquenil as well as other meds. I have not had a flared up in a while. When I don’t take my meds for more than 3 days I start feeling some pain. I’m in a path of trying to change my eating habits and live a healthier life. I am lucky in the sense that my Lupus is not as aggressive as many others and I am thankful for that. When i was in constant pain it was hell. I don’t ever wish that on anyone. I can’t imagine what life would be like without the meds that I am currently taking. Would I like to try holistic alternatives? sure, i don’t want to poison my body, but it’s not always possible to live w/o meds. When I was diagnosed I was working out every day, I was eating healthier and I was also in the worst pain. Going to the gym every day was painful but I pushed through. I think I’m ranting now. I’m just thankful that I feel better today than I did a year ago and I thank the meds that I am now taking.