• Lupus The Patients Experience

Sufferers of Lupus – please tell us how you treat flares! :

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Lupusgirl | 10/04/2007 10:51:00

Hi My doctor plans to put me on cellcept. Have any of you taken this one? How have you found it? Thanks

wendy | 10/04/2007 15:01:00

i have been on cellcept for 2 years. It has been good so far. I do get hot flushes and feel a bit sick sometimes. I also get a lot of chest problems due to picking up viruses easy. ive just got over pnumonia and plurisy, which is one of the problems of haveing Lupus. I have been on steroids for 5 years and i have tried lots of treatments for Lupus, Cellcept seems to work for me at the moment.

janet clark | 10/04/2007 15:25:00

it was a long complicated drawn out process - i have other health issues too. No to Nephritis - yes it could have been they are not certain, could have been a virus, was on steriods on and off since 10 - also had mild strain of yellow fever etc. Continuous medication, steriod injections when required, painkillers and alternative therapies for relief, stress free enviornmnet when possible, relaxation has affected mobility all over, breathing, eyesight, along with contenance problems - apart from our usual visits, blood tests etc a more active role as us as individuals as opposed to that of groups of people with the same disease - treatment so far is ok could be better - learn something like Reiki, admit to yourself you have this disease and cope with it on a daily basis - remove all things and people who dont accept this from your lifestyle - we cant run up mountains any more hehehe! oh and smile everyday after all we are still alive

rose | 10/04/2007 15:40:00

I have been on mobic for a few years, seems ok with me. I have and will continue to refuse steroid treatment. Mainly because I have other health problems, diabetes and epilepsy. Steroids would play havoc with both diabetic and epilepsy controll. Flare ups are frequent, the hardest thing to cope with is the tiredness, but as I say, I do what I can when I can and worrying about it only makes things worse. As with long term illness of any kind both yourself and family become complacent to it. It ends up annoying others as when on a bad day its difficult even to get out of bed let alone do anything else the complacency turns to resentment . From everyone. You sadly get used to that. Lupus realy is a very difficult thing to deal with on many levals. The mind wants to do things and the body wont let you.. But..... like me .. you can with determination and will power cope with whatever comes along with it. Iv recently found a great bonus in lessining the joint pains by using olive oil and fried tomatoes. bread fried in four tablespoons of olive oil with an egg and two fried vine tomatoes, most mornings for breakfast during a flare up realy seems to help with the joints, much less hand discomfort. It works for me...I do hope anything Iv said helps you. Every morning I look in the mirror and smile and say "today is going to be a good day" and every evening I do the same and say thankyou for todays blessings no matter how small they have been..

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MELODY REDHEAD | 10/04/2007 16:37:00

I was diagnosed with lupus 7 years ago this month.I had felt unwell for 10 years plus with lethargy aching all over and depression.I had a massive attack where I was so swollen all over I couldn't even get my tongue in my mouth.I was admitted to hospital and tested all over and diagnosed after about 10-14 days.It took me along time to feel almost well.I was off work for 3 months.I take a large concogtio of medications.Prednisolone, Azathioprine,Calcichew, chlordiazepoxide,omeprazole,ferrous sulphate,citalopram,hydroxychloroquine,furosemide,simvastatin,and pain killers by the bucket. for the last few years things have been well and i am in remission but my darling husband passed away last tuesday so i have been in shock and i am scare in case i have a flare up

Julie | 10/04/2007 16:40:00

I was diagnosed with lupus 5 years after having had my daughter. In that time I had numerous infections, was hopitalised with severe kidney infections and pneumonia. Even after all that the consultant still said I was a hypochondriac. My GP believed something was wrong though and kept sending me back to the hospital for more tests. It wasn't till I got the facial rash and could barely walk that I was diagnosed though. I've had lupus for 16 years now and take steroids, anti-malarials plus 6 other different tablets. The steroids made me put on a lot of weight, which doesn't help the arthritis. I suffer with arthritis, hair loss, severe fatigue, facial rash and very sensitive skin, muscle pains, depression, severe headaches and neck pain, and other symptoms come and go. If I have a day out, I need to rest for two days to get over it or I end up bedridden. I haven't been going to the hospital as the treatment there has been appauling. I just go to my GP when possible and she takes my blood. If I'm very bad I go to A&E. It's very difficult as my mum has MS and is housebound, so my dad and husband tend to have to do more than they should. I take one day at a time, but I do have to push myself to get things done. If I didn't have kids I probably wouldn't get out of bed till lunchtime. I still go out and have fun, just have to restrict myself a little on what I can and can't do. I've never heard of cellcept though. What sort of a drug is it and what does it do?

Dirt Diva | 10/04/2007 22:51:00

Hi, Thank you for connecting up with me on MySpace. I had no idea this website existed. I appllaud you for being a voice to those of us who are desperately ill. I was dx'd with Systemic Lupus Erythmatosus 4 years ago February. Initially, I was told that it would be a mild, arthritic disease that would make me tired. That was then. This is now. About a year after my diagnosis I began feeling increasingly unwell. By Oct. of 04 I was in my doctor's office because I suspected (finally) that I had the manifestation of kidney disease that plagues 50% of Lupus patients. My suspicions were confirmed. I was given Cyclosporine and 5 months later they did a kidney biopsy as I was not responding to treatment. It turned out I had Lupus Nephritis class 4. The one kind of nephritis that responds poorly to Cyclosporine. I was then put on Cellcept. From there things only got tougher. Sure my aches subsided somewhat, my hair finally grew back but nausea, stomach aches and lack of appetite brought me down from about 150 pounds to 106 pounds. I was still on steroids too! About a year and a half later my kidneys began to show improvement. I will never have function that is 100% but at least, the damage wasn't continuing. Presently, I'm struggling with headaches, swollen lymph nodes, shortness of breath (not associated with the chronic anemia) and a heart abnormality that was just detected. For my birthday this year I get to spend it at the cardiologist's office. I'm only 36 but my body hates me. It has launched an all out attack to destroy me. I question my survivability now. I didn't used to but I do now. I made a promise to my husband that I would not die but I may not get a say in that afterall. Lupus will kill 20,000 Americans - maybe more - this year. 1 out of 185 Americans is diagnosed with Lupus. There haven't been any new, approved medications for Lupus in over 40 years. The meds used now are toxic and almost make you sicker than the disease itself. For instance I was recently tested for multiple myeloma. When I asked why I would be tested for such a rare, devastating cancer I was told it was because I've been on the Cellcept for two years. Is this really a way to treat illness? Are steroids the answer? It makes me mad that treatments can bring about whole other diseases like cataracts and diabetes. It also raises blood pressure and makes you overweight. Is that really a treatment or are we trading one set of problems for another? In the news today President Bush will veto federal funding for stem cell research. Those of us who are sick - and I'm not just talking about Lupus but every disease combined - need to get politically involved to bring about changes toward healthcare for those who are sick. Here's a list of my meds: Prevacid - for prevention/treatment of ulcers, acid reflux from taking Lupus related meds like Prednisone and Cellcept. Prednisone - to suppress the immune system thus suppressing flare ups. Cellcept - typically used for treatment of Lupus with organ involvement - usually, kidneys but can also be used to treat multiple organ involvements with heart and brain. Lyrica - to treat Post Herpetic Neuralgia. Because of the Cellcept I developed Shingles that I mistook for Lupus rash. As a result of letting it go and because I had Shingles back to back three times I developed painful nerve damage. Enalapril - I was recently put back on Enalapril even though my blood pressure is low/normal to begin with because I have 'ventricular restriction' in my heart. Furosemide - Diuretics to help my kidneys remove fluid build up. I also get IV iron treatment and a shot called Aranesp to help with my bone marrow deficiencies that cause severe and chronic anemia. On April 17th I am sure this medication list will change when I begin treatment for 'decreased cardiac output' and 'ventricular restriction'. I haven't the faintest notion of what those mean for me but considering how things have gone in the past I'm not holding my breath (OK, literally, I'm not because I can't breathe well right now anyway!) that it'll be an easy or minor complication to address. May your creator be with you. May he or she bless you during your difficult journey with Lupus. May you have peace and calmness of heart to prevail iover challenges you have to endure along the way. May there be an abundance of love and understanding from family and friends. And finally, know that youre not alone in this. There are many others like you facing similar and difficult challenges.

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Renaldo | 10/04/2007 23:16:00

I am a 54 year old male. I think that I was dxed with discoid lupus when I was around the age of 9 or 10. It was after multiple cases of mono and strep throat. In the early 70's the dx became systemic. Lupus attacked my lymph system and I was dxed with Hodgkins disease. They cut me open and took some nodes and then decided that it was lupus flaring up. I have had spinal meningitis twice. The first time was in 1995 and was bacterial the second time was in 2001 and was pneumococcal. Ironically both cases happened at the end of March. The second time I had it, I was in Havana Cuba and the Drs. told my family that death was iminent. I obviously didn't die, but I was left with a white matter brain disease, possibly leaucodistrophy or leauco encepholopathy. I refused the brain biopsy since I still getting around just fine. I think that my rheumatologist is calling it Lupus Vasculitis. Been on and off prednison for most of my life. I take skelaxin for the fibro, ibuprophen, amidrine and vicodin for the headaches. I have been trying to wean off of the pred for the last five years. I am on a very low dose and was almost off, but suddenly my back is covered with lesions. This usually indicates with me that other stuff is going on inside of me. I am just hoping for the best. I refuse to let this stop me from living. I am a musician and play with several different groups in various styles of music. Getting to the gig is the hardest part. A lot of my friends say that music is keeping me alive. They might be right!! After all of these years of being a pawn in medical industry, I am perfectly willing to believe in magic. All in all, I believe that the long term use of prednisone has done as much damaged as the diseases. Sometimes it takes a couple of stabs to find a vein in me.

CellCept | 11/04/2007 10:20:00

Hi Julie Found this link on Wikipedia which you may find of use http://en.wikipedia.org/wiki/Mycophenolic_acid Thanks Belinda

Irene | 11/04/2007 11:36:00

Hallo,I wes diagnosed about 14yrs.,ago,yet I have had SLE since the age of 15,I am now 59,with me it was epilepsy for 3yrs.,since then,I have had migrane for 8yrs.,my lupus is now cerebal for more than 16yrs.,and I had to give up work 9yrs ago.You live each day at a time,enjoy the good days,and ride out the different flare ups,I have been twice wheelchair bound,the 1st time I lost the use of both legs,rushed to hospital,which is in Bath,and I live in Wales,2yrs of the chair,hydro again and again,eventually I could walk again,with a stick,but walking I was!!!!The next major flare up,was DVT,when I nearly died,but after hospital,again the chair,this time for 7mths,hydro again,I am walking again,this time it took about 18mths all told.!I am in remission at the moment,looking after our grand daughters is wonderful,as I could not,for so many times,when every joint was in agony,the amount of medication was and still is!!!Methotrexate,which I take on a weekly basis,folic acid for the terrible side effects,hydroxicloriquin,diclofenic,sotolol,domperidon.co codomol,mebeverine,loperomide,lansoprazole,but I have never heard of the drug you are asking about.I also have osteo arthritis in both knees,and parts of my fingers,and hands,but I look a picture of health,but it is not the face thats sick!,plus make up hides the rash,we can all get.Iritis is another bug to bear,16 attacks,in as many years,last attack took 2yrs to clear,and lost 5% of the sight in 1 eye,prickly heat,another bug to bear,on holiday factor 40 and I still get prickly heat!!Anyway,thanks for letting me tell my story,the fatigue is so much better lately,but still have to rest every day,but life for now,is good!!!!

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Irene | 11/04/2007 12:53:00

ps.,I suffer with memory loss,so bear with me,!!My consultant knew I had SLE,but as I was responding to the drugs,and injections for arthritis,he would not treat me for SLE,UNTIL,I ha d2 attacks of pericarditis,then boy oh boy did he move!! I have also had arthritis of the jaw,6wks,could hardly talk,and eating was a nightmare.The worst part of SLE,is when you do have a flare up,but not severe enough to go to hospital,is the lonliness,being bedridden for wks.,on end,sometime months,for me is hell.!!! Now some years ago I found Mobility shops,these scooters,are amazing and give you such a quality of life,I wish I had known about them sooner.Once again I did not know I was entitled to the use of tha ambulances,and for years forked out for taxis,at some expense.When I was rushed into Bath our doctor sked me how I would get there,I had to wait 2days for a bed,and our GP was asked to take care of me till then,and my hubby had to take the day off work and take me,I was not told that I could have had an ambulance on the NHS.,so many other things happen to you with SLE,too many to mention,these are just some of the things I have suffered.Bye,thanks.

linda | 11/04/2007 13:51:00

I was diagnosed in "92 after suffering badly since the age of 6,but tested and diagnosed with everything but lupus,also constantly told I was depressed,until I ended up nearly dead in early in "92,doctor paniced,was sent to rhuematoidologist,who was useless,told me basically to go home,do nothing,and waste away,nobody seemed to know anything about the illness,my G.P.started to find out for himself,then 12 months later I found the adress for the Lupus Society and started to research it for myself,by then I was on steriods and 29 other man made drugs,mostly medication for the side effects of other drugs,I got fed up not getting any help from the medical profession,so started to wean myself off the steroids and other drugs,and now take only morphine and anti inflamatory,came down from 130 mil.of morphine they had me on to just 20mg.per day,found that co-enzym Q10 gave me my energy back,along with a magnesium tablet daily,slowly got my life back to some independance,live alone and manage with a little help with my shopping being done for me,do everything else myself,in my own time and at my own pace,take every day as it comes,and do whatever I can manage each day,all the medication I was on until 1999 made the whole condition much harder to cope with.I was like a zombie,racked with pain and lethagy,I was also diagnosed with breast cancer in "95,got through all the ops.and chemo.and radiation,now have a list of chronic conditions,including lung disease,I have never heard of a lot of the treatments other people have mentioned,never even offered anything besides prednisilone in high doses,have not seen a specialist for this since "99 seem to manage things better alone with the good care of my G.P.but when I have been in hospital I am used like a guinea pig,with young doctors and nurses asking me to explain what lupus is,how it affects me on a day to day basis etc.seems not many in the medical proffesion know anything about the condition even though they say they have heard of it,all sufferers out there,try not to let it get you down,keep your mind ocupied at all times and hopefully you will feel better for it,I do

Blueunicorn | 11/04/2007 18:24:00

I've been diagnosed with Lupus 6 years this June. I take loads of different drugs. I manage my flare-ups by upping my Steroids from 7.5 mg to 10 mg if it goes on longer than 4 weeks I see either my GP or my Rheumatologist.

Lesley | 12/04/2007 22:50:00

I first had symptons of lupus 2 weeks after my first daughter was born, when I had horrendous pains in my wrists, knees and ankles, but didn't get an accurate diagnosis until 10 months later - by which time I was a wheelchair case. I was tested for Rheumatoid Arthritis twice. When I was finally diagnosed and treated I improved slowly - the first anti malaria liquid medicine did cause renal and liver problems but when changed to a different preparation these problems disappeared. My main problems now are chronic fatigue, joint pains, and depression. My treatments are anti inflammatory drugs, malaria treatment and occasional steroid injections. I have trouble with my eyes due to irregular weakening of the eye muscles. I have also lost some toe joints. I did have another baby surprisingly 6 years after the first, but almost lost her at the end of the pregnancy when the placenta gave up and she was induced a few weeks early - thanks to the excellent care of the medics - and is perfect in every way. I find taking good quality vitamins and mineral supplements helpful. I suffered with 'growing pains' as a teenager which I now believe were the start of lupus, I've had pleurisy twice, plus a couple of 'funny turns' when I had long faints. Now after 22 years of lupus I no longer remember what normal is but just have good and bad days - its all relative.

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Lesley | 14/04/2007 12:26:00

Ps I was told the placenta breaking down was another symptom of lupus. I also forgot to mention I suffer from memory lapses!! My other big problem is migraine - they have been horrendous for years - I have been hospitalised with these presenting systoms of a stroke - thankfully not. With the advances of treatments for this I can now control them better. I have to take antacilds regularly as the anti inflammatory drugs can be severe on the lining of the stomach. With careful monitoring I can continue with these drugs which seem to suit me best. I have tried a few alternatives - names now forgotten but they didn't control the pain sufficiently for me.

Wilma Flintstone | 15/04/2007 19:44:00

I have been ill since my early teens but Lupus was not diagnosed until I was 35. My main symptoms used to be blisters from the sun, my GP's advise (shrugged shoulders) "Stay out of the sun!" So I stopped seeing him. When eventually SLE was diagnosed at hospital, I was given leaflets, nothing else. About ten years ago I was finally given medications and regular check ups, where Raynards Decease was diagnosed. I find the worse part of SLE is people you work with, who complain when you have yet another cold or flu symptoms, I have never worked out why they are so callous, I still attend work no matter how ill I feel. They have to go to bed for a week if they sneeze. Since menopause about six years ago I have never felt so well, I still get the odd days where I wish I didn't have to feel so ill all the time, but at least I can now go out in the sun, (with sunblock) I still blister a little if I overdo the sunlight, but it's nice not to have to stay in the shade. My advice: Look forward to menopause, it's fantastic.

Heather Trelfer | 16/04/2007 13:56:00

Hello fellow sufferers! SLE was diagnosed for me in 1977. In the early 80's a Cerebral flare caused kidney failure and lung collapse.I was hospitalized for 4 months. I was treated with massive steroid doses which damaged my hip. Because each flare up damages the kidneys more and more I attend a Renal clinic every 10 weeks. Because of Nephritis I am unable have a hip replacement so getting about is a problem. I have just retired from work at 65 - a huge achievement for me! I had very understanding work colleagues. I am taking Cellcept as well as steroids and when I have a flare I have found that just taking 1mg more of steroids (I normally take 7mg daily) does the trick! Doctors scratch their heads at this but it works for me! I guess you get used to and adapt to Lupus over the years. I can lie in bed and conquer the world! Then my feet touch the ground and I know I am going to struggle! But hey! laughing and smiling make the day wonderful and worthwhile. I do have very bad spells sometimes lasting for weeks and depression can set in, but somehow I give myself a good talking to and pull myself out of the doldrums. Having a very good and understanding family has meant everything to me. I wish you all better health!

Misty Laughlin | 17/04/2007 17:17:00

I started having weird joint pain at the age of 11 or so. I'd go to bed fine, then wake up with a seemingly sprained wrist. I knew something was wrong, my doctors knew i was a hypochondriac. I started having seizures when I was 14. I started breaking out in rashes at 16. I became photosensitive at 19. My doctors still knew I was a hypochondiac. Two years ago my little sister was diagnosed with SLE at the age of 15. I again raised questions with my doctor about my symptoms. He said if I had it they would have found it by now. One month later, at the age of 25 ( last August), I was hospitilized. They thought it was staph infection, meningitus, then they ran out of ideas. Sunlight induced vasculitus. I finally got my SLE diagnoses but it took 14 years. I'm now on Prednisone and Plaquenil amongst everything else to control those side effects. I have an appointment tomorrow because I was diagnosed 8 months ago and they still can't control it. It appears if they had caught it faster it wouldn't be this bad. Go figure. Now they say chemo is my next option. I sure hope this works because if this is how 25 feels, who wants to live to see 60?

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Jane | 18/04/2007 08:49:00

This site is incredible...I am fighting SLE without much support it seems msot of the time. Family wears out of the conversation about the meds, etc, but they do not realize that SLE is a day to day fight for me. I was diagnosed at age 53 when I could not breathe (pleurisy, inflitrates and pericarditis). I had been major stressed out after taking care of my Mother after she had a stroke & was sent home to die. My sister and I knew that Mother had always declared that she never wanted to go into a nursing home. ANyway, at the funeral, my friends noticed that I had blue nails & lips and shortness of breath and I went to the doc who said (and I fiooishly agreed) that it was "anxiety due to her death and her dying", staying awake for days and not eating or drinking, etc. He never even put a steth to my chest. Let me stop and say here that I am a RN & I knew of Lupus but considered it to be a butterfly rash& athritis. I was sooo ignorant! Anyway, days later, I returned to that doc, I could get little or no air & I ended up on oxygen..I had to have muscle biopsies for ALS and spinal tap for MS.I have been on heavy doses of steroids for over 2 years and 4 different chemos/immunosuppressants. Dodged a bullet because I almost married the man who later would desert me while I was in ICU to go on vacation to a niece's wedding in Germany. Talk about as low as you can go! About flares, when I listen to my body (which hates me) I try to bedrest and sleep for 1-2 days and if that does not work, unfortunately, the steroids are increased back up which is why I have never been off of them. Meanwhile, I have developed osteoporosis and more recently, increased pressure of the optic nerve (glaucoma) so I am in a corner: Stay on the steroids to save my heart/lung from being rejected or go off to stave off problems with my sight? By the way, Cellcept is the drug that as helped the most with me. Dose is up to 2500 mg, nausea and vomiting and the trots but it has the best bang thus far. Good luck to all and it is a comfort some how to realize that what I am dealing with is totally normal. We need a support group in Northern Alabama so bad!!! Thank you for taking the time to read my story and God Bless!!!

Sarah Palmer | 24/04/2007 21:01:00

Hi, I am 27 years old and have had Lupus for 16 years. At first it was quite hard being not even a teenager and on heavy doses of steroids but I have grown used to it and have led a normal life. Now I have 1 child and 1 on the way and only suffer from mild attacks - mainly arthiritis and when this occurs I am put on a low dose of steroids for a couple of weeks. The only drawback is I put on a huge amount of weight in my teens due to the steroids and never have managed to lose it fully. It also has lowred my lung capacity to that of a 8 year old so cannot breathe fully but manage this by not over exerting myself and knowing when to stop. Lupus is a life threatening disease in few cases but can be managed with steroids and anti-malarial tablets in the majority.


Heather | 27/04/2007 19:07:00

I am 29 years old and was diagnosed with SLE and DLE at the age of 21. I was always the kind of kid who would get sick at the drop of a hat and I am sure my family USED to think I was either lazy or faking. I was diagnosed relatively quickly (within 9-12 months) and it has been an uphill battle ever since. I am extremely photo sensitive so I moved from hot sunny GA to cool wet Seattle. I have tried all the regular treatments and so far the only thing that even helps a bit would be steroids. When I have a flare I usually get a medrol shot and an rx for a course of prednisone. I also take painkillers on a regular basis which helps some, but certainly does not fix a thing. I am currently taking Immuran and will be adding methotrexate (for the 3rd time) sometime in the next month or two. I never responded to the anti-malarials so my doc no longer has me on them. I am developing signs of nephritis but at this point I have not had a biopsy. I hope this info helps. Take care all.

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rachel nestick | 04/05/2007 08:14:00

i have lived with lupus for 14 years now not having much problems except arthritis havent taken a pill for my lupus in over 3 years but my luck has ran out. the wolf has came back and mentally i am okay but on the outside is bad. i have started swelling in my feet so bad dr dont know why so bad that i havent wore a shoe in almost 3 months. dr says it just goes with the lupus you know they say i have arthritis in my whole body. i am not the one to complain so i go about my day but my right foot seems like i have broke it but no broken bones i am losing circulation now go back to dr next week. okay i am going to quit talking so much if you would like to know more about me and how i deal with lupus you are welcome to email me at anytime. also my sister has lupus and on my moms side of her family it runs in her genaration and wait you like this and on my dads side of the family it runs in my genaration so see lupus runs in my family on both sides and nether families new it! some folks say its very rare to have lupus run on bothsides but hey i know for a fact that that bad wolf isnt prejudice he comes after all! have a nice day.

Joanna | 05/05/2007 05:04:00

My family and I went to the Bahamas for a summer vacation. My sister is a big sun worshipper and she made me go tanning with her. My face blistered and I developed a butterfly rash. I spent most of the time sleeping, and I was always groggy. When we came back, I still had the rash and I was sleeping most of the day and night and started failing my classes (i'd just started my freshmand year of highschool). My mom took me to the dermatologist to take care of the rash, and he said "I think she has lupus". My regular doctor recommended us to a pediatric rhuematologist, and by November 24 of 2005, I was diagnosed with SLE. i am on cellcept, prednisone, plaquenil, baby asprin, multivitamin, and serious doses of vitamin D to make up for my lack of sunlight. i'm currently working on going into remission, but i still get tired and groggy when i spend more than an hour or so in the pool, or i'm out in the sun too long. all i can say is that i hope they eventually find a cure. and also . . . people, spread the awareness. lupus is just as serious as diabetes or cancer.

Doug | 23/05/2007 23:43:00

I do not have Lupus but I do have some testimonies of people who have success with there Lupus and some possible relief if you would allow me to share. My website is: http://www.successfromhome4u.org "I contracted systemic lupus at age 11 and have experienced many difficult periods over the past 13 years. In the early years it attacked my central nervous system and radical measures were required to slow the disease. I had two rounds of chemotherapy and several steroid pulse treatments. I have been taking steroids daily in varying doses all these years, but have continued to have several reoccurring episodes every year. I have taken Shaklee® vitamins and herbs, along with various other food and vitamin supplements. I have also tried juicing for extended periods of time and continue to make juicing part of my diet. I have tried anything that I thought would help me control my health so I could stop taking steroids. About four months ago I felt the onset of another lupus episode. I developed a pain in my chest that hurt when I tried to breathe in deep. It felt like someone was stepping on my chest constricting my breathing. The pain continued to get worse so that I finally called my doctor, who sent me to a cardiologist. He told me I had paracartitis and that I would have to increase my prednisone. I do not like taking prednisone and I don’t like increasing my dosages. When I came home from the appointment I noticed that first box of 4Life™ supplements had arrived that morning. I began taking them that night. I also decided that I would not increase my dosage of prednisone as much as the doctor had prescribed. The next day I felt an improvement in my breathing and the pain had lessened. For the next couple of days I continued with the 4Life™ Transfer Factor™, BioVitamins™, and the BioEFA™. I was feeling great and I reduced my prednisone to the normal amount. The next week I went in for an ultrasound to check for fluid around my heart. There was none at all; it completely disappeared. The nurse remarked, "Boy, those steroids really did their job!" I just smiled and said, "I guess so." But I was really thinking, "This 4Life™ Transfer Factor™ stuff must work, because I know it’s not the steroids!" I have been taking 4Life™ Transfer Factor™ for almost 4 months and I believe it has helped me tremendously. I have more energy and am able to keep a full-time job. I still have days when I am tired and feel achy, but it seems like not as often as usual. I have struggled for 13 years trying to find things to deal with my lupus symptoms. I’ve taken so many different kinds of herbal products and vitamins, and have tried many different remedies. Many have worked for a while but eventually I would start to feel bad again. I have been reluctant to say much before now because all these various remedies have resulted in disappointment. I am taking this one step at a time and not getting my hopes too high, but at the same time I am feeling great and doing great. When I feel a cold or sore throat coming on (which happens frequently since my immune system is suppressed) I will take more 4Life™ Transfer Factor™ and that seems to stop it before it gets worse. I find that I still must watch what I eat and make sure that I get adequate rest to feel my absolute best. I know that 4Life™ Transfer Factor™ may not cure my lupus, but it can improve the way I feel and look at life. This has been a blessing and an answer to my prayers. I am thankful that 4Life™ Transfer Factor™ has come into my life and has made me feel better and made me happy. I’ve never felt better about a product in all my years of trying. It works for me!" Amy F "My symptoms associated with Lupus, being sick constantly and feeling exhausted, have gone away. I feel energetic since using 4Life™ Transfer Factor™." Linda M.

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Gregsmom | 20/06/2007 00:16:00

I have been a Lupus survivor for about 15 years. I was diagnosed when I had my son, an 1992. In the beginning i had a ton of joint pain, couldn't even walk sometimes, pleurosy, raynauds, through out the years I have been on methotrexate, steroids of course, cell cept, I did the 18 months of cytoxin (chemo) in 2001 and I think that did the trick for me. No more jopint pain. I still have raynauds, I was a smoker for many years and quit 2/06, I will refuse to take steroids ever again! I have had many problems that I associate with long term steroid use. Thin bones, Blood vessel problems in my legs, horribly thin skin and so on. I did get some relief in the late 90's. I was able to work, waitress, absolutly no medications. I felt like a million bucks until one day in late 1999 the wolf came creeping around. My suggestion to anyone with this disease is to know the facts. Just because a dr. tells you to take, or do something check it out. Get on the internet where there is a never ending supply of information on everything. This is your body, the only one you'll ever get know what is happening in it. The more you know the more your Dr.will have to learn.The biggest disappointment to me is not being in the sun. I am a summer baby, born on the fourth of July. Was outside from the time the sun went up til the sun came down loved the outdoors. Not much fun now, Layers of clothes, sweating so much you can't enjoy it. I have had many surgeries, colostomy, gall bladder, adhesion removals, hysterectomy and a toe amputation. I am currently on plaquinel, levothyroxin for my thyroid, a few blood pressure medications, and nexium because taking all this medication does wonders on the stomach. Thanks and Good Luck To All!!!

Dana | 18/07/2007 04:40:00

I was diagnosed with SLE five years ago. I had known for months that something was very wrong, but contributed it to a stressful job. I would get to work and not be able to remember driving there, forget peoples names that I had known for years. I would get to work and not be able to get out of the car because my hands hurt so badly, not be able to walk because my hips hurt so badly. I was constantly in a brain fog. It took an hour to get out of bed because I had to wrap my joints in a heating pad because they were so painful. I would get up, take a shower and be completely exhausted again. It was more than just being tired; I was literally physically exhausted. I had to concentrate just to put one foot in front of the other. I had excruciating headaches every single day; so bad that I was in tears most of the day. I had dropped more than 20 pounds, still eating like a pig, and at 5'7" and barely 100 pounds, was way too thin. After my assistant begged me to go to the doctor, I finally gave in, only to be told I needed to be on anti-anxiety and anti-depression meds. I refused since I knew there was more to it. Several months later my tooth became abcessed. The dentist wanted me to be on antibiotics before doing a root canal. Two weeks later, the infection was still raging so he changed the antibiotic. Two weeks later, the same thing. After six weeks, he told me I needed to see a doctor. I finally went to my daughters D.O. I explained that I'd had an infection for six weeks and no antibiotics were working. I also asked for something to relieve the arthritis. He began questioning me about headaches, tiredness, memory problems, etc. Again, I attributed everything to a stressful job. He mentioned the rash I had on my chest, which I'd had for more than a year and didn't think much of. He tested me for Lupus, Rhuematoid Arthritis and Multiple Sclerosis. He sent me to the hospital for IV antibiotics, then sent me home with two different ones to take simultaneously. When the results were positive for SLE, I was put on Prednisone but experienced too many side effects and quit taking it after a couple of months. I've done that three times now and will never take Prednisone again! Now I have learned to recognize when I am becoming stressed out and deal with it before I have a flare. I know what triggers my flares...stress and sun (even tanning beds) are my biggest triggers. Yoga has helped tremendously. I realize now that life is precious and way too short to spend it stressed out and in bed (completely debilitated) with a flare. I take one day at a time now and rest when I need to rather than trying to do everything at once and be everything to everyone. I can keep flares at bay by practicing yoga, keeping my stress level to a minimum and staying out of the sun. I wish doctors would stop labelling everyone as depressed instead of looking deeper for the real problem. Just like the rest of us, they get paid to do a job and are expected to do it well. It is time to stop putting a bandaid on everything and hoping it goes away. I avoid doctors at all costs because every one so far has wanted to put me on meds rather that finding a way to deal with it. I don't like taking medicines and prefer to stomp out flares naturally rather than putting something into my body that will ultimately cause more problems with side effects. It is a vicious, never ending cycle! My suggestion it to figure out what triggers your flares and remove those things from your life. Appreciate what you have and live your life to the fullest. DO NOT let Lupus defeat you. You can choose to be happy and healthy ... just because you are diagnosed with an illness does not necessarily mean you are unhealthy. Once I quit feeling sorry for myself and decided Lupus was not going to take my life from me, I have had much better success at keeping the flares away.

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