I haven't been diagnosed yet but am sure I have Lupus. The consultant is reluctant to get a move on and tell me what's wrong with me so I'm not on any medication whatsoever.
Today I popped in on my neighbour who has recently been put on pred and I couldn't believe how her cheeks have ballooned! I know she has to take them, she has no choice. But in the back of my mind I was thinking how I would hate that to happen to me! I know so many of you on here are on a cocktail of drugs, and getting the benefit of it. Having just read another blog about a little girl not wanting to take her tablets, I kinda agree with her!!! I'm the type of person who would put up with a headache rather than take some paracetamol. So I can't see the point of taking lots of pills with horrible side affects when it doesn't seem to make much difference!!!
For instance I read on here about 'side effects' that people are having and they are writing to ask if anyone else has experienced their symptoms when being on a certain type of medication. They think the medication is causing the symptoms. But I sit there reading it, feeling all the same symptoms and I'm not on any medication at all!
This makes me believe that the symptoms are the lupus itself and the medication is not preventing it, so therefore why take the meds?
I suppose I'm just a bit scared really like that little girl, that my life is now going to depend on drugs. What I really want to know the answer to is:
Do I only need the drugs to improve the quality of my life, or by not taking the drugs will my health be compromised?
I would really like some advice so that the next time I go to see the consultant, if he finally agrees to diagnosing and telling me I'm going on x,yand z drugs, I can discuss them with him and make an informed choice about my own destiny! I don't just want to be put on a drug because it's protocol and he's ticking a box.
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Angelcake
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I agree with your sensible idea, to question the consultant about whether to take certain drugs or not, and not to be put on it due to normal protocol. I think it's very important to establish whether you are at risk of developing any organ involvement which can be life threatening, in which case you will be glad to take the drugs. If however it appears that you are not likely to develop organ involvement you have more choice in whether you take the recommended drugs.
I was diagnosed with Lupus last year and I do not have organ involvement, I too am the sort of person who would rather not take drugs unless absolutely necessary. Last Summer I tried taking Plaquanil (I was fearful about what lupus would do to me) but Plaquanil didn't agree with me at all, every morning I woke up and I felt so nervous like I was about to do my exams... every day! Most unpleasant. Then this Summer, again concerned about persistent burning pains in my arms that was not getting under control with anti-inflam painkillers, I decided to try Steroids. This was a disaster for me, as one of the side effects I got (after only 2 weeks) was feeling suicidal and planning to take my own life. So I had to be quickly weaned off them.
Needless to say I now feel even more wary of taking drugs unless absolutely necessary. everyone can react differently to prescribed medication and I seem to be one of those people who are very sensitive to it. When the side effects are worse than the Lupus itself something is very wrong!!
I think we should always question what we put into our bodies. I include food in this. I try to eat the healthiest food I can afford, take natural anti-inflammatory remedies such as Turmeric and omega 3 oils and I am weaning off my daily painkillers, which my GP supports due to my track history of being sensitive to drugs (I am not happy with the side effects of the painkillers). I will be doing my next set of blood tests in a few weeks, so we'll see how I'm doing without much medication and using more natural methods to control the inflammation... I'm hoping for a result that shows that the ESR is not getting higher.. may be even reducing? We'll see.
Just curious did that work well for you. I was diagnosed with lupus week an have ago maybe! Prior to this I had been sick An sluggish for quiet some time I had been constantly recieve steroids shots an antibiotic shots as well as by mouth! I'm sure my body had no good bacteria at an An my diet didn't help i evently got diagnosed with mono as Well as had a miscarriage. The symptoms are so similar they didn't know what was wrong! After three months of suffering with insomnia flatigue An two flares I got diagnosed with lupus I been on plaquenil for five days initially it made me feel better now my stomach burns no appetite to eat extreme constipation causes me to pass out this is my second day off my meds I feel a ton better experience some head ache some stomach irritation due to digestion maybe leaky gut or IBS and gas and occasionally weird chest pains not extreme! Not sure if I should be concerned ? I run a fever here An there over all more energy I got up An walked down the road An back An managed to do a tad bit of yoga I still don't eat that much do to my lost of appetite and weight loss almost 14 pounds now weighing like 95 which I'm concerned about Ima bag of bones! I've been completely vegan in hopes of remission! Initially more fruits than veggies because I was not able to get anything down but apple sauce An blue berries! I'm not to crazy about the meds so I'm wondering if I should stay off them
It's interesting you should ask - 5 years later and things have changed. My Lupus is now 'dormant' and I am testing negative for ANA and my ESR reading has come right down to normal levels (over the past 3 years and continuing). I have however now been diagnosed with Fibromyalgia. And that has been tricky to manage, but I am managing it OK with the use of diet (cutting out more foods I react to, taking more supplements and herbal remedies) and with drugs (I take a low dose of Nortriptyline at night and low dose Citalopram antidepressant in mornings). I didn't want to take the drugs but they have been useful in reducing the burning nerve pains and the acheyness. And I do have a little more energy now I'm sleeping better.
I did a food intolerance test with Cambridge Nutritional Science and this showed a number of foods I was reacting to, and I noticed an immediate improvement in pain and energy levels after cutting them out. But it wasn't easy to live on a restricted diet. But I'm eating well anyway - lots of fresh fruit and veg, some meat and fish, very few carbs. I must have 'leaky gut' because some foods do make me bloated in windy and give me IBS if I cheat on my diet. I'm healing the gut with bone broths and with herbs. I see a herbalist and she'd great.
I have always discussed every step with my rheumatologist, and I would urge you to do the same. It can be dangerous to stop the drugs without a doctor being aware of what you are doing and monitoring your progress. It's a case of trial and error really because we don't have a 'Doctor in the House' to help us, but it's worth trying everything out.
If you have systemic lupus and it is active then it is advisable to take medication that is prescribed for you. Definitely don't stop taking medication without first discussing it fully with your consultant.
In many cases, when medications are first started, you may experience some unpleasant side effects, and you may feel worse than before you were on treatment. However, some of the more serious symptoms of lupus, such as kidney damage, don't present with any discomfort, but can lead to organ failure if not treated.
There are some patients who experience medicated remission if they receive good treatment, in these cases they are often able to withdraw from all treatment.
There are lupus patients who take no treatment, but these tend to be the exception rather than the rule. Your consultant should advise you on what is best for your health.
I totally agree with both the above comments. I also dont want to take meds as i feel that i have just swapped 1 set of symptoms for another, however i have done some research and learnt that my meds are protecting my kidneys as i have organ involvement so its a doulble edged sword. I will say that i think i have had lupus since my early twenties but as no organ involvement it never was diagnosed. I only got a diagnosis when it was too late and had started attacking my heart and kidneys so i have learnt the hard way. Write down any questions you may have before you go to the doctors and keep a diary of pain, food, activities etc and that way you can tell if you are getting worse or not. Good luck and keep us updated
Sometimes you do not get the choice whether or not to take medication. Prior to being ill I considered myself to be relatively fit & healthy. Rarely had time off work. I would never have dreamt of taking a painliller for minor aches/pains. As I mentioned in earlier blogs I developed flu like symptoms achy joints,muscles and fever (GP also thought it was flu). Anyway five weeks later I was admitted to hospital and after a battery of tests was diagnosed with Lupus and eventually started on prednisolone and within hours the pain started to ease for the first time in seven weeks.
It is my belief that anyone with SLE is at risk of organ involvement and a doctor can't really tell if the individual is at risk. Despite an echocardiogram, xrays, bloods tests, MRI scans of head neck and lungs and numerous examination of my chest, when I got home I found I couldn't walk upstairs. The reason being I had developed pleurisy ( organ involvement can develop silently ) which despite medication 9mths later there has been some improvement but the condition is now chronic whereby minimal effort causes shortness of breath.
I have asked my Rheume ( I think he does Lupus as a sideline) to reduce my steroids due to the side effects, mainly the weight gain which causes me great distress, but he says "you don't want the aches and pains back" so I have decided on my own to reduce them slowly and see what happens. I feel if I felt better about my physical appearance this would help me in the healing process. Now I will have to wait and see.
Hi Angelcake very good question..... there is much you can do for yourself: from diet with anti inflammation foods like Dryad, to acupuncture, to healthy lifestyle and good attitude.
I'ave chosen not to take drugs, although I had a long battle with long term pericarditis, some less serious heart and kidney symptoms. I do take pain relief periodically to give myself a break from it when I need it. And I put up with a bit of 'aches and pains' often.
I consciously build my health every day.
Have I not overcome lupus.
But after talking with my GP, I too. considered that at least I'm "only" dealing with sle symptoms, not with the side effects of drugs as well.
I found a chinese acupuncturist very helpful in teaching me chi gong[like tai chi ] for building vitality and a medical herbalist for herbs to help strengthen various organs.
Only you can make that decision re medication but remember that most GPs and consultants only have training in medication and of cause they want you to be pain free and reduce the future "risk" of problems.
One last thing. My cardiologist with 25 years experience with lots lupus patient said "what ever you are doing to keep doing it as a have not seen anyone with such a history of pericarditis with so little damage." Now its very rare for me to have pericarditis even a touch of it in winter.
All the very best to you Angelcake and to everyone else.
It is the same with everything - balancing the positive with the drawbacks. Which is why you need to get on top of what sle means and what it can do to the body and research what each drug does. It is not a hard and fast rule, I do not believe in doctors knowing it all nor do I rely fully in my assessment of a medical condition, given that I haven't spent years studying and working as a doctor. It is a combination between what the doctor believes is appropriate for the circumstances that are presented to him/her and what you ultimately experience once you take the drugs. I for one do not mind joint pain at all but I often suffer from recurrent pericarditis and pleurisy and numbness in my left hand. The latter things scare me no end, they are too close to heart and make me worry all the time about whether I should go to a&e because likely heart attack. That gets me so stressed that I would rather take the steroids etc to resolve it. I too am avoiding looking in the mirror and see my now so wide face, I am just hoping I will stabilise at some point and get off the meds. It is a choice each of us makes, it is a huge responsibility to our bodies, I know how worried you feel, but there is no straight answer. Good luck with it all.
Hi Angelcake, I have to say I asked that very same question! I was told by GP he thought it was lupus, and had never heard of it! After looking into it and joining a group I asked the same, as was getting all these symptoms that people were saying were side effects! I genuinely thought well what is the point of putting all that crap in my body when I am getting all that anyway!!! I was put on hydroxy and stronger pain meds and then told to reduce hydroxy after 3 months. I did this and I have to say thought that none of it was doing any good until few weeks after the reduction of the hydroxy! I am back on 2 x daily of hydroxy and various other meds, (which I hate as never took medication in the past and usually very intollerant of meds) I can not say I am good at the moment, but last 6 months have been better than previous 2 years! I have had to go on the preds but will come off again tomorrow after 2 weeks. I try not to take meds but dont feel like I have much choice at the moment! I do understand your concerns and think you have to talk through with your gp and consultant to see what is best for you. I wish you luck and hope they find a different answer to your condition than this one! x
I have read all these posts - and from my own experience, i battled for 11 yrs with Dr's, Specialists etc as I knew i had Lupus and they didn't think that I had and had NO treatments. The conclusion it will be 2 yrs 26th Oct that I was admitted into ITC with multiable organ failure and critically ill. I was one of the lucky ones! I take a concoction of med's, now monitored to the hilt - the med's saved my life and are controlling this terrible disease.
What Paul has stated above - I have been told by my Rheum Consultant - i will be on MMF for the next 3 - 5 yrs, I am being weaned off steroids and recently started plaquenil, i will be taking ramipril - possible for life ( as I now have a slight heart condition). From a person who never took any medication - the amount i first had to take approx 30 per day - i have seen over the past 18 months reduce.
I attended a recent Lupus AGM in Warrington were i met a very inspirational woman who has battled Lupus in its worst form for years! She is now in remission ( her lupus is inactive) and has been weaned from all med's. She is monitored regularly and is aware that it may be a possibility that she probably would have to go back on med's if her lupus was to flare again in the future.
I hate the med's - but I know i wouldn't be here today without them.
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Good news not so great...and I'm really angry.
Update: to have lupus or not have Lupus...
Do I or don't I, what do you think ?
Going to take me of medication
