Have you ever refused treatment for lupus? - LUPUS UK

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Have you ever refused treatment for lupus?

GhostfaceMcGee profile image

What would be a reason why someone would decide not to be treated for lupus?

Is it ever realistic to manage lupus without treatment?

What has been your experience?

Thanks!!

16 Replies

I am in the process of considering going against my rheumatologist and hemotologists recommendation to add HCQ to my regiment at this time. I feel with the warfarin and plavix that I need for the rest of my life I do not want to add another drug with some serious side effects plus blood thinning properties into the mix at this time when over all I am feeling great.

In December I had very high titers plus many odd symptoms mostly neurological but not attributed to my stroke and my neuro recommended behavioral health therapy for my anxiety. Mindful CBT plus ACT for pain has changed my life. Therapy mixed with a very high fiber diet, Consistant sleep and exercise plus adding, with my doctors approval vitamin D has me feeling better than ever and my antibodies in March were almost non detectable.

I do believe much of our illness can be managed with lifestyle changes, but if I begin to have organ involvement again I will not hesitate to add pharma to my treatment mix and I will always follow my hemotologists recommendation for blood thinners to prevent more heart and brain involvement.

Good luck!

KayHimm profile image
KayHimm in reply to Roarah

Yes, organ involvement seems to be what necessitates serious treatment and what can be managed with medications that pose little risk. It will be interesting to hear what your doctors say when you tell them your decision. Totally understand your concern.

Xk

Lupus is a spectrum from “ mild “ to severe organ and life threatening disease.

Whether it’s realistic to manage without treatment depends on organ involvement and other factors. The answer may be as complex as the disease itself.

When I was first diagnosed I refused the meds. It was more about not wanting to spend the rest of my life on a drug regime. I found the diagnosis hard to come to terms with. I have a cousin with lupus and she has had a terrible time with it changing her life. After a year I relented and life was better.

Now, my Hydroxychloroquine has been reduced and I have been offered the chemo drugs. I tried two and had allergic reactions so have said I won’t try anymore. Due to a horrific steroid reaction in my twenties I will not take them.

So, I have had to listen to advice and adapt my life. I have gone part time at work, I am trying acupuncture and am looking at diet changes. I know the bits of my life that make my lupus worse and so I will try manage those. But, lupus is an evolving thing. Symptoms I have now I didn’t have last year.

For me the drugs often make things worse as I am either allergic or reactive. To take one drug, I was offered 4 other drugs to enable me to take it without side effects. That is mad.

I am someone who will try to avoid drugs, I have been the same with chronic pain from two back surgeries. But, it might not work for you. For me the pills are the greater evil for others it’s the pain and symptoms. My view may change.

Managing lupus is what works for you in your life, what compromises you can realistically make and what compromises are not acceptable. Only you know you and your body and your family and their needs. Any regime needs to work those or it won’t work.

For now I have decided not to take Hydroxichloroquine, but I have joint pain, my heap, my shoulder, my knee, my back, I am so tired...I sleep 7-8 hours and than I have a maximum of 7 hours of working ability, afterwords just simple stuff becomes a burden. I take my vitamins, I do not drink, do not smoke, sleep at 22.00 max 22.30 every night. I am so tired, so tired and I so much like not to feel like this.

I am sort of decided to give Hydroxichloroquine a chance and see how it works.

Recently I started high fiber after reading posts from this forum. After 7 days I feel somehow it works, I totally stand by it, doesn't change the other symptoms though. I will give it time.

Good luck with your decision!

I'm also in this situation right now of deciding whether to accept treatment or not. At my last Rheumatology visit I was offered Azathioprine but told I don't have to take it if I don't want to 🤔. For me personally that gave me the impression that it is not essential at this stage that I take it and has led to a lot of thinking about my current symptoms and treatment plan. I'm not saying I would never consider medication and if I was advised to take it otherwise my health would deteriorate I definitely would but at the moment as Roarah says, CBT counselling has been extremely helpful in accepting this chronic illness and reducing anxiety to a manageable level. I have found that the pain levels have reduced and along with diet changes and leaving my job everything seems more in control. Best wishes 😊

What side effects are you referring to? Hydroxycloroqinin is the safest drug of all for lupus and even has some anticancer properties. Having said that if you feel fine without meds maybe you could wait and see, as lupus could manifest from very mild to serious depending on the individual. In my case I felt I was about to die until I was put on steroids. Hydroxycloroqinin made me not have joint pains anymore. I reduced steroids over the years but can't imagine getting off of hydroxycloroqinin as my joint pain symptoms (can't even hold a spoon) come back immediately.

Roarah profile image
Roarah in reply to miccika1

My concerns about HCQ is the retinal damage. I tore my retina in my 20s due to my very nearsightedness. I live with constant black spots in my vision already and am terrified of more damage but my doctor reassures me that it is a rare complication and eye exams help to prevent it from causing great damage but using it for greater than five years increases the chances of damage happening. I feel great now so thought maybe saving it as a possibility if things worsen might be a good idea. But much science is showing it is indeed a wonder drug for many lupus patients.

miccika1 profile image
miccika1 in reply to Roarah

Well to deal with that concern you just need to check for hydroxycloroqinin toxicity each year and each six months after 6 years of use. If they notice toxicity you have time to stop it before the irraparable damage occurs. Eye doctors are able to assess before any symptoms of toxicity appear.

But if you feel great why are they even putting you on medication. Do they suspect you will get worse? How did they diagnose if you feel great. Maybe you don't have lupus if you have no symptoms that bother you. You can also always get a second opinion if you are unsure they are suggesting things in your best interest...

Roarah profile image
Roarah in reply to miccika1

Thank you! I am just weighing my options. I hate phama to be honest and as I need to take plavix, Lipitor and warfarin for the rest of my life I would like to avoid taking another drug without benifits outweighing risk.

I have lupus with secondary APS. I was diagnosed in my 20s with SLE some 27 years ago after a doctor noticed a butterfly rash and high levels of protein in my urine at a yearly exam. He ran an Ana it was positive I was put on steroids for months and it resolved and I was very healthy until last November, when I suffered a massive stroke blamed on secondary APS and my primary lupus.

HCQ is showing lots of promise in preventing primary strokes in APS/ lupus patients and as a secondary prophylaxis by significantly lowering beta2glycoprotien antbodies. For me it is being offered as a prophylaxis by lessening clot causing antibodies it is hoped to prevent my reclotting. I will still need to stay on both plavix and warfarin as HCQ is not enough of a safe guard for me now that I have a history of clotting.

My team is incredible, they have worked with a lab at the Yale medical school and their work is all abuzz in many lupus and APS news forums today with a press release into potential causes of APS and one doctor is presently working on a patten for a vaccine to prevent APS.

I am going to see how high my Apls are next week, if they are high I will most certainly go on HCQ. If they remain low I will most likely wait for now.

miccika1 profile image
miccika1 in reply to Roarah

good thinking... i do feel you do not need to be afraid of hCq as we have something off with our bodies and you can consider drugs as supplement to help the body function better.

you might be interested in this article I just read yesterday... you should ask your smart docs what they think of it: sciencedaily.com/releases/2...

miccika1 profile image
miccika1 in reply to miccika1

actually it's this article... newscientist.com/article/22...

Roarah profile image
Roarah in reply to miccika1

Much of that research is out of the kriegel lab, at Yale ;). Don't have to ask what they think , it is what they think. Xo

Hi, I'm on HCQ and they want me to go on Azathioprine however I'm really not sure if I want to. Before I start I'm doing everything I can to get better. Therapeutic levels of vitamin c and d, mindful CBT, yoga, cutting out meat and gluten and most dairy. Def feel better x

When I became ll originally,I dreaded the idea of taking steroids.on emergency admission to hospital,I took them along with other meds. They didn’t make me feel much better,but they stopped me from getting worse.

Now 8 months down the line I am 3 weeks into Azatropine,struggling a bit,b up my kidney bloods have improved very slightly.

Am hopeful. I may start to feel better in the next 3-9 weeks.

Lupus has played havoc with my health,my lifestyle,at this stage I think I need to do what medics suggest.At this stage I dont

On a positive note,I had a few tests last week.

My arteries are registering 8 years younger than my actual age.

I’m not diabetic and my aorta is ok.i also have CTD NSIP caused by the lupus

If you have SLE Lupus that can potentially damage internal organs - then - to put it bluntly - you will probably die without medical treatment.

Do not muck about if this is you - or anybody else on this forum with SLE. Take you're medications.

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