I have systemic Lupus. Has anyone justed stopped ... - LUPUS UK


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I have systemic Lupus. Has anyone justed stopped going to the doctor?

krisdy profile image
20 Replies

I have SLE. over 4 years diagnosed! I did a whole year of high doses of steroids and plaquiel. And I ended up on a vent. I had steroid phycosis. My bood work is fine right now and I dont want to take steroids they make me crazy!! Thanks Krisdy

20 Replies
krisdy profile image

I just wanted to know if anyone else has felt that the treatment for Systemic Lupus is just as bad as the illness itself! Thanks, Krisdy

SRamkin profile image
SRamkin in reply to krisdy

Hi Krisdy

Well, I did! I haven't been to a doctor for over a year. I have Lupus Nephritis and arthtis and trust me, I will take the swelling and the pain any time than that stupid treatment.

Caroine profile image
Caroine in reply to krisdy

yes i feel most of the time is a waist of time visiting my consultant especially when the condition is on relapse any complaints that I make is not really taken .......cheer up

beckside profile image

My earlier answer seems to have gone astray. I totally agree Krisdy with your view. Lupus is a nasty disease that creeps up on you equally horrible is the effects of the medication used to treat it, particularly steroids I think my Rheumy just guesses how much prednisolone to prescribe for me. At my last appt apparently the pred is no longer effective and I have been prescribed Cellcept so I have decided to taper myself off steroids. Steroids have left me nauseous, bloated and grossly overweight. I'm sure I could cope with Lupus better emotionally if I did't have to stress about my weight. People and friends say don't worry about the weight just get better I know they mean well but I just want to fit into my clothes. I can't bear to look in a mirror I no longer find buying clothes a pleasure, I purchase clothes and styles that I would never have looked at or considered wearing. This is my personal view and I know many will disagree hopefully ther will be some else who agrees.

krisdy profile image
krisdy in reply to beckside

beckside, I was grossly overweight and very bloated. I took myself of prednisone. And I agree with you!!!! Let me tell you sweety, I before I got sick weighed 130 pounds and I am 5 feet 7 inches tall. well after 1 month I weighed 198! No joke and I topped of at 250!!!! So I gained 120 pounds in a very short time!! I was wearing my sisters old maternity cloths!! I never tried to loose the weight but after stopping the steroids it slowly went away, and now I weigh 120 and I now look like a starved rat!!! to skinny!!!! you know this lupus is just a big ass kicker!!!! Dont worry it will come off!!! I feel your pain because I was there!!! and when someone tells you how to feel and not to worry tell them to walk in your shoes for a while, because they dont know how it feels unless they have lived it!!! I live in the USA. and trust me over here no one wants to gain weight. tell them you dont want to talk about this with them because ( I am speaking for myself) It made me worse!! You hang Tuff!! and It will come off!! I promise!! Love, Krisdy

Maya23 profile image

I've just had a horrible couple of weeks when I reacted badly to steroids (shaking, sweating, hyperventilating, detached from reality, mania and depression leading to planning to take my own life) and I'm just in shock really. What ever happened to 'first do no harm' that the doctors are sworn to? SO yes I do agree that the meds can be just as bad -if not worse- than the disease itself!

I think you have a complete right to refuse medication, but I would continue having tests and continue going to appointments. Lupus can be dangerous if not monitored. There may be complementary therapies that help you too. Take care xx

krisdy profile image
krisdy in reply to Maya23

Dryad, That is how I was and I was writing suicide letters because I could not stand it anymore. Thanks for responding and yes I will continue to go to the doctor, Just not that doctor, He did not want me anymore because I refused to take the steroids anymore so to him I was being non-compliant but I could not do it anymore! Ya I agree what ever happened to first do no harm that the doctors are sworn to? Because They have really messed me up! Thanks, Love, Krisdy

Maya23 profile image
Maya23 in reply to krisdy

I'm really sorry to hear that you also reacted badly AND they didn't take you seriously... that's terrible! I know how awful that must have felt. I was very fortunate that the doctors I dealt with were very understanding and took my suicidal thoughts seriously and helped me. It is very dangerous indeed to be feeling like taking your own life and on a drug that seems to give you the energy to act on those thoughts. My GP admitted it had been a cock-up -he called it an "unmitigated disaster"!!

Better luck with a different doctor who will hopefully treat you like an intelligent human being! xxx

Mylupus profile image

I agree with all of you on all that you just said. I have Been down that road too. Im taking control of my own Lupus! I have had No more steriods, Etc. Been off it all for almost 2 years. I feel the Drugs are Worse than the disease. This is how I feel. I just try and eat really good. And take certain vitamins etc. I just do the best I can. The reumi. Doctors don't want anything to do with me. Because I don't believe the drugs they give us help. So I moved on.... I will never give up though... : ) your stories have helped me. Thankyou to


Caroine profile image
Caroine in reply to Mylupus

quiet agree always after pumping in new drugs.I have refused changes to my medications on three ocassions,Started with predinsolone,then offered hydroxychloroquinesulphate,I made a fuss before i went for it ,then Azathioprine now Azathioprine propOsed to be dropped for another.In fairness when my joints were really playingup hydroxychoroquinnesulphate was great in calming my joints but with its side effects.The truth is once you start with all these meds its difficult to go back

Melinda profile image

I've just told i have osteopenia, which is bone thinning and they want me to take a drug that prevents osteoporosis. Having looked up the side effects, i just find them completely unacceptable although i accept some people may be okay taking them. I've decided to try and strengthen my bones through diet and exercise although i am limited to what exercises i can do.

krisdy profile image

I agree the drugs were going to kill me! I do the same with taking vitamins I am also very Anemic. I live in the USA, I love this site much better! But everyone it seemed like over here do so much worse with the constant drugs. I did it for a full year. No more. But know I will not give up! I always say I have lupus but it does not have me!!! You hang in there! Love, Krisdy

witch2 profile image

I so interested to read this blog last year I was given steroid without my permission and was very ill after( I got official Appol as it was. Locum) the upshot is they are very careful have just been diagnosed with arthritis in hands and feet so my immune system is going to be suppressed. This is the last treatment I will try mainly because I do not want to be unable to walk or use my hands. The big difference this time was that my rheumy sat with me for 40 mins discussing the pros and cons how they will monitor me. It was an informed discussion and I fet my consultant actually had listend and put me on a drug you take once a week so the side effects will avoid the days I teach.

Nanuuk profile image

Last year my gp & rheumy put me on steroids after weeks of plotting murder, suicide & other psychotic behaviours I weaned myself slowly off them & only when tbey were completely out of my system did I see my rheumy & gp in turn to sweetly tell them if they EVER think of prescribing them to me again I am moving in with them & will spend every waking moment with them, describing EXACTLY how they made me feel/do. I now have a new rheumy & gp as both announced retirement within a week of seeing me!! Nothing will bring back relatives & friends I lost through the mind set steroids caused., that damage wwas it seems, permanent.

So yes, I know where you are coming from but do have regular checks, give them a chance to treat you "right'.

Maya23 profile image
Maya23 in reply to Nanuuk

Ha Ha!! That's a great way to hit home to them how awful steroids make us feel!! There HAS to be a better way to treat lupus than this! I'm sorry you lost relatives and friends through your ordeal... perhaps you should just show them the list of side effects on the leaflet that comes with the pills.. perhaps they'd understand then that you weren't in your right mind?

krisdy profile image

Yes i do get check ups just not from there anymore!! I just cant believe loosing my sister and so many other family members and friends because of how I acted I was OUT OF MY MIND!!!! You would think they could try and understand but I cant worry about that anymore!! you hang in there!!!!! Krisdy

tintin49 profile image

thanks to all the posters on here your stories are enlightening and give me hope. as i have said before i had mild symptoms stiff hands and feet,tiredness etc but the planequil after 12 weeks has made me so ill i could hardly walk.in the worst pain of my life,suicidal muscle fatigue etc, i think the medication does not agree with me and the side effects have mimicked the illness full throttle and then some. i may have lupus but my diddery old body managed to keep me from suffering this way and the rheumatologist are just experimenting on us they really dont know all the answers.lupus is unpredictable and the treatment is hrsh foe some. all the best to those of us who have to take a different route and take back our lives x

krisdy profile image
krisdy in reply to tintin49

very sorry to hear you our in so much pain! No the planequil did not do anything for me! Right at this second I dont feel too bad. But I have a back brace on. but about the past 3 days I hurt so bad I almost went to the hospital I could not stand it anymore! I have been off all those drugs for 2 years now. and I am doing better then when I was on them. Maybe that year I was on them It did help, I dont know but It almost killed me too!I am not seeing a rheumataologist right now! I have read every medical book know to man and I had my Gyn doc. draw my blood I told him all the test I need and so far so good! that dont mean I still dont have my bad days! That is my situation and I dont want to mis lead you! I pray for all of us! You hang in there and if you want to ask me anything at all that is no problem! I will pray for you! Love, Krisdy

Smiler1 profile image

Well done to all of you who've seen through convention meds! :0)

I have DLE, (diagnosed November 2011) which has spread inside my ears etc.

I very occasionally use corticosteroid cream, as it's not working so well now & I don't like conv meds. I refuse to go on all the other meds that conv Drs want to prescribe me.

I haven't been to my newly allocated dermo & my new Dr doesn't know anything about Lupus (hence she just fobbed me off with a recommendation to have a dermo appt) & so have not had any more tests done since my bi-opsy last year.

I seem to be managing a LOT better than the majority of folk on conv meds (why on earth do conv Drs prescribe meds that generally have long lists of side effects etc!?! Because it's BIG BUSINESS of course! (also ignorance to alternative therapies), prescribe something that usually causes more illness etc & therefore they prescribe something else to cover-up those symptoms & so on & so on...what a money maker for the pharmacutical industrty etc!!!!

Crazy that the so-called 'anti-cancer diet that a lot of Drs etc put cancer patients on is on a par with 'The PH Miracle' book by Dr Robert Young (a brilliant read & well worth trying :0) & I personally know that it can & does work (a client of mine cured his ''in-curable'' stomach cancer by using this book. Thank goodness he didn't let them remove his insides!!! & that I told him about books that may help, 'cause they did :0), the conv medics said it's a 'miracle' that he became totally cancer free within 3 months of following The pH Miracle :0).

Some of the conv medics know that the majority of illness is due to an over acidic body, I hope for a day when they stop using conv meds & actually 'cure' folk through the only real way that there is-by allowing the body to get better via nature.

Thumbs up to all that turn away from conv meds & let the body do what it does best-'cure' itself through creating a balanced pH via eating & drinking truly healthily, exercise & basically getting your body back in balance :0). Good luck :0)

Tigerlily4 profile image

Yes Krisdy - I only ever deal with my Consultant Rheumy (apart from prescription repeats) treatment-wise. GPs generally don't have enough specialised knowledge to treat/manage SLE and have been known to prescribe drugs they shouldn't!

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