I apparently only have 'mild' lupus and am only recently diagnosed, so I have yet to start any prescribed treatment. I can tell you how I feel now, exhausted, tearful, and in dreadful pain (I've took two paracetomol with codine and two ibuprofen earlier and they have had ZERO effect). So I'm guessing if you stopped treatment, that would be how you would feel. I have had persistent and increasingly worsening pain in my hands and feet like this for about 3-4 months, and have been in tears many, many times during that time because I'm in so much pain and feel so exhausted. Prior to that my symptoms were more random and milder, just odd aches and pains, and repeated bouts of rashes with fevers, but the fatigue has been with me persistently for years.
I would not like to think what would happen if you have more serious forms of the illness with organ involvement.
Either way, I would not like to be without treatment, I can't wait to start my medication because I am literally going insane with fatigue and pain.
If a person stopped all their meds they would find out what difference the meds were making. This would be both short term depending on long it took for the medications to clear the system and longer term depending on how the disease might progress including running the risk of incurring permanent damage. If medical attention were refused the risk of permanent damage would increase because hidden signs of it happening would not be detected.
Depending on how the lupus was affecting the person there could be a risk of avoidable death. If a healthy person refuses all medical care there is a risk of death from serious but easily treatable illnesses such as infections. There is also a risk of serious damage from untreated chronic & progressive conditions such as the anemias, that are probably more common in people with lupus than in people without lupus.
There is no simple answer. It would depend on a whole range of factors including how your Lupus affects you, what medications you are currently on, what way your antibodies are going to perform if left untreated, etc.
I've never tried it so cant even speak from experience but even if I had my experience would likely be very different from someone else's. Right now all I now is that I have been working for several years to get off one medication, prednisone, and managed to do it two weeks ago. Unfortunately they have been two solid weeks of over-powering pain, inability to function half way normal and subsequent feelings of depression as a result.
Some people with organ involvement would likely get very ill quite quickly and stopping medication could even prove fatal. Of course stopping prednisone without tapering can have very serious consequences if one is on it long enough or a high enough dose.
Others who stop medication might slowly return to a state where they can hardly function with the inflammation and pain. Im sure there are probably others who have found that they managed quite well without medication but nine times out of ten I suspect that its a relatively short lived 'remission'. Its a very sneaky, serious disease and its just too difficult to predict.
My old Dr. retired.........don't like the new one, first thing she said was "well, I didn't look at your chart, so tell me what's going on".....did to the best of my lupus brained ability.......she reduced my pred from 7.5 per day to 5mg. and changed my appt. from every 6 wks to 3 months to now only every 6 months, then called 3 months later and left a message on my machine to cut in half the pred again without seeing/speaking to me. I am still on 400 mg. of plaquenil a day.......but at 5 mg pred. a day, I began having those lovely 3-4 day long headaches from Hades, much more finger and hand swelling and extreme chest pain and racing/palpitating heart.......It has only been 3 days on 2 mg. a day......My lower abdomen is broken out in scle, my arms are covered with a wierd red rash, I have splotches on my face, it is an effort to leave my bed to go to the bathroom, my hips hurt so bad it is difficult to sleep, my left ankle pops continuously............I now have no doubts that I have lupus and it is one WICKED, DISGUSTING,HORRID, life sucking disease. I am firing this Dr., whom I figure is the same as no Dr.......unfortunately have to wait til June 26 to see new Dr..........I don't want to know where I'd be without all of the drugs.......just missing half has let Lupus use me for a door mat, as for going without a Dr.....It sucks I haven't been 100 percent for a while but I was at least 75.......now more like 40.
Please tell me you are not willingly considering such a thing!!!????:worried:
thanks for your thoughts. i guess i'm asking because i just feel like throwing in towel on all of this. i'm on chloroquine 500mgs, cymbalta 60mgs, dilaudid 8mgs in the morning. in the evening i take trazadone 100mgs, soma 350mgs, gabatril 4mgs and dilaudid 4mgs, then at bedtime i take 8 more mgs of dilaudid, i also take 50mcgs fentanyl patch every 48hours and have IViG infusions 2sessions once a month.
i'm still exhausted, and my pain still pops up but its usually around a 3,but somedays goes to a 5. my joints swell a bit. my neuro issues are still the same, numb leg and arms, droopy eye, blurred vision, pain in eyes, white flashes of lite, invoulentary jerky movements (quite pronounced movements) headaches, and can't walk straight in the dark. sometimes i can't walk due to right leg won't move.
i guess i'm just wondering if going thru all of this is worth it. i can't work, i can't drive, i don't go out except to the doctor (yippe). i can't wear my manolos or other heels or dress up. my partime husband comes over on sundays with groceries and a visit, i feel like his crazy great anut agnes.
Wow, that's a lot of medication, and a lot of issues you got going on there. Rather than chucking the towel in though, would you not be better off getting a review and trying to find a better programme?
My mum has fybro, high blood pressure, IBS, and she was on so much medication (I think I counted about 30 different tablets at one time), the side effects were making her sicker than her problems! She was on incapacity then, incapable of working, and didn't really go anywhere other than the doctors and church. Her life is totally different now, sure she's not going to run any marathons, but she's back working 5 hours a day and has a much better quality of life. She's taking much fewer medications and they're working better for her.
((((Hugs)))) and hope you get some relief soon, sounds like you're going through some crap and not getting much support.
It is not always that simple. I had to stop going to doctors, did not have anything for the lupus or pain, and at best would be able to have some over the counter stuff. I did not do this by choice, I want to make that part clear to everyone that does not know my story.
The first time I did this the joint pain started to increase, the swelling got a little worse, I got migraines at least once a week, and all in all felt like it got worse all together. I just counted the days that I could see anyone again and take anything for the discomfort that I had everyday.
The second time was not too long ago, and well most of you know I have not fared very well. In August of 2008 I was able to start seeing doctors again but meds were a problem. It was just 18 months off of it all. I finally figured out a way to help myself get the meds that I knew I needed. In September of 2008 I was told to drop hours that I had done damage to the joints and to the body that could not be fixed. I asked the doctor why, if the damage is done and can not be fixed then that is that right? Reply was no it can only get worse from here. So that is what I did dropped hours. It cost me income that I needed to take care of me and my daughter. It has cost me better health then I had before. She told me if I had been taking my meds and seeing a doctor this could of all been avoided for the most part.
I finally got on my plaquenil in December 2008, and I am waiting for it to kick in still. If all of the above is not enough for you to consider than talk to others like me on the site that have had to do without the help of the doctors and the meds for some time. I would not wish that on anyone. It is hard enough having lupus but not having treatment and meds for it, is like give the keys to a candy store to a child to watch it. My biggest fear this whole time was that something would happen to me before I figured out a way to help myself get what I needed.
I do hope that before anyone willingly stops treatment that they talk to people that did not have a choice to stop treatment, it might give you cause to rethink what you want to do. I know the pills and the dont's of lupus become overwhelming most of the time but it is far better than being in pain with nothing to help take it away. I hope you are doing well and feeling well.
The key question to ask yourself and your doctor is: has there been an improvement in your symptoms and is it worth all the medication and the side effects? If you go off medication are things likely to get worse?
Has that new doctor planted a little seed in your head of doubt? Try to remember what it was like before and compare to now; I don't think it is wise to go off all medication, but it may be wise to look into a change of medication and/or trying some different things.
I was told to go off my lupus medication when I was breastfeeding (was taken off it actually) and I deeply regretted that decision that was imposed on me. Caused a major flare about 4-5 months after stopping that didn't let up for nearly 2 years. So I'm a bit biased!
:sad:I don't think I'd risk going off my meds. Lupus used to be a 'death sentence' , but with meds , it's now manageable. You are on alot of pain meds! You might go thru withdrawal, if you just quit. If you're not happy with your doc, find a new one. I'm sure you feel horrible with all the meds you're on, but you probably need to decrease meds with medical supervision. Cathy
just me again saying thank you for all ofyour stories and suggestions.
the meds are keeping me somewhat stable. i'm not really questioning my treatment plan. nor do i dislike my doctors (except for the she-wolf ).
i just don't know why i do all of this. i feel like i'm just taking up space and air on the planet. i make no contribution to society. my social life consist of the tv, and i've been come very close friends with the people on my soap oparhs (spelling brain fart). i doubt that i will be able to drive again thanks to my brain deciding to do things when it wants to not when i want it to.
guess i'm feeling sorry for myself huh?:umm:i don't wish to sound like i'm special and i think it would be awful for those who could not get treatment, sounds a bit like i'm selfish, guess i am :sorry:. i meant no disrespect.
i'm still not doing well with my marital situation and its been over 2yrs. gosh i'm really really sounding certifiabley pathetic now so i'll sign off.
thanks again for your support take care and be well hugs and kisses
Well I can tell you this much. Back when I had the diagnosis of MS and deep down inside I knew I did not have this disease...............I woke up one day and threw all of my meds in the trash. All my needles, pills, everything. My husband thought I had gone mad!!!
About 6 weeks later I landed in the hospital. Now hindsight being 20/20 I can look back on this knowing it was Lupus then and not MS and I can tell you first hand how quickly I went downhill.
Please, I know your frustrated and I would also love to let all of the drugs hit the can and never, ever go see another doctor but that would be disastrous.
I am sorry your feeling down and out but know that we care about you and we truly understand your thoughts, feelings and frustration too.
Keep your chin up as best you can. Gently hugs are being sent to you.:wink2::wink2::wink2:
I'm with Alimonkey on this one. You need a complete review of your meds. Maybe if you were on a stronger medication to regulate your immune system you could eliminate some of the pain meds. I'm lucky to have minor pain that I don't usually have to medicate for and that's because of the Plaquenil and Imuran. The pain was bad before those meds kicked in. I know many people still need pain meds, but the need for them is reduced if your immune system is regulated as much as possible.
My sister was on Plaq., prednisone and Ultram for ten years and recently had to stop the Ultram because she started having seizures. When she stopped the Ultra she found that she really didn't even need it. They also cut back on her Plaq. and she's doing fine with half the earlier dose and low dose prednisone. My point is, for so many years her doctor just had her on the status quo and never reviewed her meds and the possibility that she may not need the same routine. The very best thing you can do is talk to your doctor, or maybe even a different one, and go over every medication and see if there might be a better option for you. It's certainly worth a try. You're suffering much more than you should and you may even be having problems because of the interaction of some of your meds. That happens all the time. Please let us know how you make out.
I'm actually quite worried about the fact that you seem to think you have no place in society. You sound really low hun. Do you have any support? Family? Friends? I'm rubbish at talking to people I know (well I never shut up about normal stuff, but nothing that matters) but I have absolutely no problem whatsoever about ranting for England to counsellors - I just started counselling this week to help me cope with my illness and now diagnosis. Do you have access to any services like that? ****, if you need to just have rant here. I say stuff on here I would never dream of saying to my nearest and dearest - not because I don't want them to know, I just hate talking about how I'm feeling.
You do make a contribution to society, it's just a different one to the one everyone expects. Hey you're keeping doctors in a job for one thing :rotfl: I don't know you, I'm new around here, I don't your history, but your relationship with your husband sounds like a nightmare. You don't need crap like that when you're ill. Is there anything you can do to resolve it? Relationship counselling maybe? Has your husband learned how to deal with your illness? I've been with partner for 15 years, and he wrote me off as being lazy for some time, now he knows I'm really ill he's doing that annoying there, there thing. I don't want sympathy, I need to work out what will help me practically, and that's not doing everything for me either. It's working out what to let go.
You've every right to feel sorry for yourself, you've got a horrible illness. But don't let feeling sorry for yourself destroy you. Is there anything that you can do to make you feel better about yourself - I've just painted my toe nails bright florescent pink - it's made my red inflamed toes look less obvious :lol: I've learned to value the small things in life, because if I looked at everything else I would literally give up. Sometimes I open my wardrobe and see all my beautiful high heeled shoes, I can't wear them anymore, but looking at them still gives me pleasure. I can't believe I'm going shoe shopping at lunch time tomorrow and the primary criteria is a pair of comfortable sandals. It sucks, I hate it, but have painful feet that swell up so tough. Doesn't stop me putting on my Miu Mius and looking at them
Sending you massive hugs, and hope you feel better about things soon. Look after yourself :calm:
I would imagine that it wouldn't be very nice. It depends on how active your lupus is and what your syptoms are but I guess all the aches and pains etc would come back pretty soon.
I have always had a huge fear of forgetting my meds and going back to that pain. The inconveinence of taking the cocktail of drugs every day, constant docs appointments and blood tests is a small price to pay to never go back to how I was.
reading a lot of posts on this site it seems to be that loads of people have really horrible side effects from their meds and I can imagine that if that was the case they might well think about getting off everything.
I'm not going to comment on the med question as I think the others have replied well and I don't have much to add there. I think that deep down you too know that throwing meds away is far from a good option.
I hope you won't mind me saying this but I can't help wondering if you might not be suffering from some depression here. Feeling awful and down in the dumps from time to time is quite normal for anyone suffering from a chronic disease but you have to watch it when that starts to last a little longer.
As you know, depression can be a part of this disease and is not anything to be ashamed of but very much something that needs addressing. It seems to me that you have more than enough going on in life which might contribute to that.
From reading your posts I can only encourage you to go to your doctor and talk about this. I don't know if you have already tried things like counseling but there are several options that don't necessarily include meds. We can offer support but you might just need a little more help on this one.
I am sorry you feel so bad. You most certainly have a place here with us! We can be "Society" to you.
It took me a long time to find the right balance of meds. and having found the balance most of the time I would NOT willingly change any of them.
My Repeat Prescription consists of 20 different items but my Docs. allow me the freedom to adjust my doses as needed which actually tends to mean I take less than I might otherwise because I know if I need to I can top up.
I know Prof. Hughes said years ago when a personality claimed to have come off all meds and "cured" her Lupus- that many sick patients do not have that luxury! Certainly I can't see a single good thing would come out of it for you-but I do understand why you are fed up.
You are not alone spellbinder, you are not "not contributing". Think about it, even one post you make on here may give someone some comfort or some knowledge they didn't have before. We are all up n down with this illness. I see it like the snakes and ladders game, that analogy helps me when I slide down in despair and keeps the highs in some kind of perspective.
Some of us work to pay the bills and even though we're "out" in the workforce are only on the perifery. I have no social life, no real friends to speak of and no family except my daughter who leans on me till I am breaking. The grass always looks greener on the other side of the fence.
I have struggled to get treatment and it's not working. My illness is progressing, I can feel it. I have been where you are now and know how lonely it is and how quickly your sense of self can diminish. Come here and wallow in as much self pity as needed. No one will judge cause were all walking in the same shoes
Do make sure the meds are doing what they are sposed to if you can get a review. Hope you feel better soon xxx
I am sorry you are feeling so low and alone.
Just a word about medicines.
I came off plaquenil for a couple of months to see if it was causing my perrenial headaches.
After about five weeks the pain crept back, then the fatigue. I went back on it.
I recently had a minor flare with some joint pain but nothing like the everywhere pain I experienced before taking Plaq.
i guess i fell down that deep hole and couldn't find a way out. with all of the dancing around and uncertainty of my doctor and treatment plan i went thru a couple of weeks ago it just became to difficult to deal with. i use to be such a strong person, me helping others not others helping me.:shrug: kinda stupid huh? and tho' i want my marriage back i have to keep reminding myself to stay positive, whats that saying..."if you love someone then let them go, and if they don't come back...go hunt them down and shoot 'em ". i just hate being so pathetic. so after reading your replies to my posts i started writing in my journal again, and reading my bible to remember what is important. i'm a bit ashamed at how i've been acting. so i apologize to you all. you all have been great and i should know that you all are my friends, allbeit my invisiable friends :wink2:.
my meds and treatment plan is fine. and no i don't really want to be back in so pain and crying not being able to move. its taken a long time to get the right treatment plan, and tho' it hasn't made me all that well, it has at least slowed down the progression and i'm very greatful for that.
i hope i did not offend anyone by being so selfish, and whinning about poor pityful me, i meant no disrespect.