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Life With Lupus

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


#21

Oh and Crystal says a mouthful! Trying to manage your body and symptoms is most important when Off Meds. I tend to over do it too when I feel good because I remember how my body used to be and what I once could do. Rest and meditation help me a lot. I love Qi gong as well. Very relaxing and centering.

Take care


#22

A ohsu doctor put my sister on a.m.p floracel. Put her in remission. She stopped all her meds. Although if she stops taking this natural product her symptoms do start to return. Take care, Jeff


#23

I have lupus but most of the time feel pretty good. I have had A few scares and trips to the ER. I have had some pain management and a hospital stay also. For the most part I feel good though. I thought to myself, why should I take meds. I feel fine. I didn’t dare talk to my dr. About it. Hee hee I thought I would ask someone I know who worked in the field of many people with lupus at John Hopkins. He looked straight into my eyes and said are you crazy? You have no idea what’s going on with your organs. It really impacted me. It’s better to stay on them . I didn’t ever think of going off them anymore.


#24

The important thing to remember is that the organ damage is PERMANENT and it can occur with minimal symptoms The fatigue, rashes and joint aches and pains are minor compared to what is going on internally. Like the tip of the iceberg- its a warning that inflammation is occurring. If you are lucky its only some aches and pains but many of us are not so lucky Rheumies do treat symptoms cause those symptoms are a mirror that something is wrong Back when I was diagnosed (1960's) lupus was a death sentence but with advances in knowledge and medications we now can live a near normal life span Much as I hate medicines I surely like living those extra 40 years cause I took my pills!!


#25

I only take anti-inflammatory meds and steroids when it gets really bad. I don’t take pain meds because there is a history of addiction in my family. It’s hard though. I’m in constant agony and I know it changes my behavior too. It’s a tough decision to make, and I’m not sure how long I’ll be sticking to it…


#26

My doctor (who i moved across country to become a full time patient of hers, she is a miracle) and I have discussed medication at length. She was a pharmacist before she got her M.D. So she has a bit more insight than I think mist doctors do.

I had my first major flares (presenting in my kidneys) when I was 22. I spent the next three years being poked and prodded until a friend of mine asked about my symptoms. She had been sick with lupus for nearly 20 years at that point and said my symptoms matched with hers, so my next appointment was with a rheumatologist who gave me my first diagnosis. I subsequently went to three more rheumatologists with just a list of symptoms and test results and each one gave me an independent lupus diagnosis

I was started on Plaquenil very shortly after, my doctor saying that Ina few short days my symptoms would diminish. I was over the moon happy until the truth struck me. I am one of those people who has a very bad adverse reaction to that drug. I was violently ill for three weeks, having to go get iv infusions every couple of days because of dehydration. My doc told me to wait it out, the side effects should diminish, but they never did. I was on the drug for almost a month, I didn’t have a single day that I felt even remotely better. I stopped that pill and that’s when my mom talked to her doctor (who is the one I’m seeing now) about what was going on and she told me that I need to be careful with the lupus medications because they are so harsh on your system, especially mine as I learned. I stated being seen by her when I would visit my mom, and finally moved out here.

Our goal is to keep me as comfortable as I can. I’m on daily pain pills, muscle relaxers, anti-nausea meds, anti inflammatory meds and a handful of others to be taken when needed. One of the reasons we have chosen how to treat my lupus (and fibromyalgia) is because I got sick so young, hopefully I will live for a bit longer and I don’t need medication that is toxic (to me, I know lots of people who have had great success with these meds) so I don’t want to hasten any damage to my organs, on top of what the lupus is doing. Same thing with my pain meds, I’m on a fairly low dose compared to how much pain I’m in. I take what is needed to take the edge off and can bump it up a bit if I have a big day planned or am having a particularly bad flare. I know there comes a time when your pain meds will reach critical mass where there isn’t anything stronger you can take. I’ve had friends who have gotten to that point and nothing can be done to help the pain anymore. I have never had a euphoric feeling or felt high or giddy on my meds, they just get swallowed up by the pain and keeps me from banging my head against the wall.

There my come a time when one of the lupus drugs will become viable for me, and my doctor and I will revisit it but for now, I’m ok with having more pain than my meds help because I know I won’t run out of bigger doses for a while. I wish I hadn’t been one of the people who reacts badly to those drugs but I deal with things the best way I can.


#27

This sounds so much like me. The meds make me sicker than the Lupus does. I also got lupus when very young. They are also just trying to keep me comfortable, as most of my organs and endocrine system are not working very well after 50 years of this. I'm also on a low dose of pain meds like you.

VouxDouxDoll said:


I was started on Plaquenil very shortly after, my doctor saying that Ina few short days my symptoms would diminish. I was over the moon happy until the truth struck me. I am one of those people who has a very bad adverse reaction to that drug. I was violently ill for three weeks, having to go get iv infusions every couple of days because of dehydration.

Our goal is to keep me as comfortable as I can. I'm on daily pain pills, muscle relaxers, anti-nausea meds, anti inflammatory meds and a handful of others to be taken when needed.



#28

So nice to know I’m not the only one Sheila. I stopped going to a chronic pain support group years ago because they said my illness must not be that bad if I don’t take every pill available to me. They see my dose of lortab is low compared to what they were taking and say I’m a phoney. In reality most days it’s a struggle to walk to the kitchen or wash my hair. Sure I could be on a stronger dose than I am on now, and my doctor has asked if I wanted her to bump me up but I’m willing to fight through the pain and save my energy for special days so I can have more of those special days not lost ones from taking a drugs that in fact probably have killed me before my disease did. I was only on plaquenil for a month, years ago, my doc can trace back some of my side effects I’m still having from the pat months pills. Like I said before, I wish I was one of the ones who those drugs do wonders for, my body violently reacted to it and I always listen to my body. Endless it’s telling me not to eat that last piece of cayenne dusted dark chocolate…that will always be a yes from me!


#29

i tried several of the meds and they made me sicker so i dont take any thing,i use all natural and i changed my diet ,no preservatives and no artifical flavors,and try to eat organic as much as i can and it seems to be working,thank God,my last blood test came back neg.to lupus,yea.


#30

PS.

So it has been my experience that the doctors are often baffled and some get angry as they think we are hypochondriacs and they don't like things they can't fix...I am a retired Dr of Chiropractic...so I know both sides of the Healing Journey.

I have mostly Not taken meds...only when I have a flare up. But we are all so different. Becoming more aware of what

sets you off is very important. Sun, stress, some nuts (both kinds) the ones on 2 legs and the kind you eat! Alcohol and

some meds can all make things worse or bring on a flare. Sitting next to an open fire, grey overcast days can be the worst as still get rays that can trigger photosensitive reaction. I have trouble with mall lighting. Rather then repeat check my response to WORRIED on flax seed and how to use it.


#31

Lynn,
Before my meds I was in so much excruciating pain I could barely walk couldn’t put any weight on my joints slept 2 hours if I was lucky had blisters on the palms of my hands couldn’t touch anything or even lift a spoon to feed myself my joints were so swollen I looked like I was having an allergic reaction to something couldn’t hold my 23 month old son couldn’t even brush my teeth? Had blisters in my mouth and nose my knees were so swollen I had a very hard time standing. Right after I started my treatment with my rhumy and he gave me steroid shots in each shoulder and knees the healing process was immediate by the next day I started to move easier and the swelling had gone down. The next few days all those symptoms started to go away and was able to hold my son was so happy I cried to be able to lift him in my arms. I wouldn’t stop taking my meds if I went want back to that I have a very healthy diet and am in physical therapy but I thank god everyday for my rhumy and hemotologist and because my treatments are working for me I am aware that they can cause liver and kidney damage in the long run but I know my doctor and have trust in him and god will know what to do when that time comes am being closely monitored to make sure everything is working well and will never want to put my family seeing me like that again. I would stay strong and not cry or complain in front of them but come on seeing me was more than enough to know I was seriously ill. Now I have some pain some days better than others but can’t compare to how I was I have LUPUS SLE and Sjörgens sundrome and am aware that there will be more diseases added to the list but will cross that bridge when I get to it one symptom at a time. Have a wonderful supportive family and God by my side so I know anything that comes my way I will handle with them if I could go thru that excruciating pain for months can’t imagine not getting thru what’s to come so I stay as positive as I can and pray and enjoy feeling good now to the fullest. Best of luck hope that helped whatever you decide it’s your choice to make you do what you think is best for you.


#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.