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Thread: Feeling a bit frightened - waiting for diagnosis

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    The reason the lights at school bother you is because most Lupus patients are photosensitive in some form or another. Florescent lights have UV rays just like the sun. If you are going to be in florescent lights you need to wear sunscreen and cover up just like you would outside.

    as for the dry eyes and mouth, you might want to go to the doctor and be tested for sjogren's. That is another AI disease of which dry eyes and mouth are a symptom
    Mari

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    Quote Originally Posted by Corella View Post
    My Mum always used to say about breaking shoes in, its sound advice as well.

    Can I ask about the link between lupus and cancer? My dentist commented on how dry my mouth was - and funnily enough, when I had my eyes tested at the beginning of the year the optician asked if I had an AI disease. My eyes were only bone dry in the summer, they are a lot better now. Although the flouro lights at college make me sick and give me a rash on my cheeks - god knows why.

    I think my husband has got sick, he has a sore throat and is coughing away - I can hear him now, I have dosed him up with codeine and panadol and he is in bed, I am in the spare room as I still cannot sleep through the night. These bloody awful headaches have come back, I get a pain over one eye - its awful, god knows what that is all about.
    Hi Sam,

    Your moms right mate break them in first.

    I'll add info about Lupus and cancer but dow get stressing out about that as well, just deal with your situation in hand at the moment.

    Lights can affect me i have sensitivity to them and also a flash on a camera i can't stand, seems to shock my head, you should really be as nearest away from the lights as possible to ease your skin and symptoms your explaining about dry mouth etc that ususally comes with what i have sjogren's disease as it plays murder with me sometimes and my last lot of blood showed it was working strong, i think that why i drink so much.

    Sorry to hear your hubby's got a cold but until you know for definite keep those viral infections at distance away from you.

    Alot of us get the headaches and they are painful and i suffer the mostly with my left eye and it pulls out a fraction at times.

    Look after yourself sam but keep a distance with your hubby i know it's difficult but if need be wear a white mask they use on building sites when near him, incase it upsets your system.

    Love Terry xxxx
    Last edited by Peridot20_Gem; 06-22-2011 at 11:26 AM.

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    Lupus and Cancer by (John Hopkins)

    Lupus and Cancer

    Systemic lupus erythematosus (“lupus” or “SLE”) and other autoimmune diseases are linked to an increased risk of certain types of cancer. Specifically, lupus patients may experience an elevated risk of lymphoma and other cancers, such as cancer of the cervix. Researchers have elucidated certain connections between lupus and cancer. For example, it is widely accepted that immunosuppressive medications, such as azathioprine (Imuran) and mycophenolate mofetil (Cellcept) contribute to elevated cancer risk. However, one of the largest studies to investigate this connection suggests that the risk of cancer is actually greatest during the earlier stages of lupus, indicating that exposure to immunosuppressive therapy is not the only link between lupus and cancer. Physicians do not yet understand the precise relationship between lupus and cancer.


    Lupus and lymphoma
    Studies show an increased risk of both Hodgkin’s and non-Hodgkin lymphoma in lupus patients. It is believed that the elevated risk of lymphoma results from the disease process of lupus—specifically the overstimulation of B-cells coupled with defects in the immune system’s surveillance system—and not just from medications or other associated risk factors. Some suggest that immunosuppressive medications also increase the risk of lymphoma and other blood cancers, especially 5 or more years after taking the drug. In addition, people with Sjogren’s syndrome, which is relatively common in lupus, experience an even greater elevation of lymphoma risk, suggesting that lymphoma in lupus patients may also be linked to this condition.

    Lupus and breast cancer
    Some data indicate that women with lupus experience an increased risk of breast cancer. Increased estrogen levels might contribute to a higher risk of breast cancer in women with lupus.

    Lupus and lung cancer
    Lung cancer is about 1.4 times more common in people with lupus than in the general population. Interestingly, people with lupus and lung cancer are more likely to experience rare types of lung cancer. However, like the general population, many of the people with lupus who develop lung cancer are smokers. In fact, 85% of lung cancer is caused by tobacco. It is very important that people with lupus do not smoke. Smoking not only increases the chance of developing lung cancer, it also ups the risk for cardiovascular disease (which is also markedly increased in people with lupus), and prevents lupus drugs like Plaquenil from working properly. If you need help quitting, talk to your doctor. S/he can help you find the most effective strategy to curb your smoking habit.

    Lupus and cervical cancer
    Certain studies have shown an elevated risk of cervical cancer and abnormal PAP tests in women with lupus. One study linked the increased incidence of abnormal PAP tests with histories of sexually transmitted disease, contraceptive use, and immunosuppressive medications. Some physicians suggest that either the use of immunosuppressives or flawed inherent immunity lead to a decrease in the ability of lupus patients to fight off human papilloma virus (HPV), a virus associated with cervical cancer. [Gardasil (the HPV vaccine) is recommended for young women with lupus to reduce the risk of later cervical cancer.] However, like much of our knowledge of cancer in lupus, these connections are not fully known or understood.


    Lupus and endometrial cancer
    New evidence suggests that lupus patients also experience an elevated incidence of endometrial cancer, although the cause for this risk is unknown.

    NSAIDs and cancer
    It has been found that people with Rheumatoid Arthritis, another autoimmune disease, experience a lower incidence of colorectal cancer than the general population. Although the precise cause of this phenomenon is unknown, it has been attributed to the long-term (10 years or more) use of non-steroidal anti-inflammatory drugs (NSAIDS) and aspirin. Evidence has also been found that long-term aspirin and NSAID use may also reduce the risk of colorectal, breast, and prostate cancer in the general population. It is likely that this benefit also holds for people with lupus, but that does not mean that one should begin taking aspirin and NSAIDs for this reason. In fact, long term NSAID use can increase cardiovascular disease. Therefore, you should only take medications as directed by your physician.

    The importance of regular cancer screenings
    Despite the increased risk of cancer in people with lupus, studies show that lupus patients are actually equally or even less likely than the general population to undergo cancer screenings. Thus, it is very important that you speak with your doctor about lupus and cancer to ensure that you see the appropriate physicians for cancer screenings as often as recommended.

    Healthy habits
    Certain risk factors, such as smoking, obesity, hormone replacement therapy, and exposure to immunosuppressive medications, increase the chance that an individual will develop cancer. Therefore, it is also important that you practice healthy lifestyle habits. Obesity also increases the risk of certain cancers, so try to eat foods that help you maintain a healthy weight.

    Sunlight causes lupus flares and also increases the risk of skin cancer. People with lupus should avoid the sun whenever possible. If you need to be outdoors, wear sunscreen with an SPF of 85 or greater and be sure that your sunscreen contains Helioplex to protect you from both UV-A and UV-B rays.

    http://www.hopkinslupus.org/lupus-in.../lupus-cancer/

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    Quote Originally Posted by Peridot20_Gem View Post
    Lupus and Cancer by (John Hopkins)

    Lupus and lung cancer
    It is very important that people with lupus do not smoke. Smoking not only increases the chance of developing lung cancer, it also ups the risk for cardiovascular disease (which is also markedly increased in people with lupus), and prevents lupus drugs like Plaquenil from working properly. If you need help quitting, talk to your doctor. S/he can help you find the most effective strategy to curb your smoking habit.

    http://www.hopkinslupus.org/lupus-in.../lupus-cancer/
    i do not want to preach to anyone...............
    but i want to repeat what terry has written.
    it states that smoking stops plaquinel from working properly.
    just a thought.

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    Hi Steve,

    I've looked up even more to your comment and your not preaching...i'm a smoker and on plaquenil and if anyone who smokes reduces it from working more, then it is our own faults but i'll admit i just can't go without having a fag.

    Plus it's a well known fact with alot of drugs for illnesses or diseases that drinking and smoking can slow the affects of drugs to the system and it's according to the drug itself, everything i'm taking alone i should'nt be smoking with at all.
    Last edited by Peridot20_Gem; 06-23-2011 at 05:42 AM.

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    We all have our vices Terri - guess who got their Brazilian Wax done today, bet you can't! Yep, I had to, it was like a damn forest and it had to go and now it hurts like hell but no blood blisters thank god. (Sam blushes because she so knows she shouldnt wax)



    Quote Originally Posted by Peridot20_Gem View Post
    Hi Steve,

    I've looked up even more to your comment and your not preaching...i'm a smoker and on plaquenil and if anyone who smokes reduces it from working more, then it is our own faults but i'll admit i just can't go without having a fag.

    Plus it's a well known fact with alot of drugs for illnesses or diseases that drinking and smoking can slow the affects of drugs to the system and it's according to the drug itself, everything i'm taking alone i should'nt be smoking with at all.

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    Quote Originally Posted by Corella View Post
    We all have our vices Terri - guess who got their Brazilian Wax done today, bet you can't! Yep, I had to, it was like a damn forest and it had to go and now it hurts like hell but no blood blisters thank god. (Sam blushes because she so knows she shouldnt wax)
    Oh Sam,

    You naughty woman getting it done and no sympathy with be showed when your suffering (wink) just joking mate, you just be B...dy careful, mind you your going the extreme for this new job and there's nothing better than a nice presentation in all areas.lol

    Oh you have got me laughing this end, i've told you how i do it cover me body in dove and get the old razor out...mind you i've found my lady shaver and did my legs the other day.

    Well i just hope no blisters start because you was sore last time and i hope your ok healthwise mate.

    Love Terry xxxx

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    Im a bit fed up, I was pinning my hopes on my AI symptoms being down to my work environment but my health is a jigsaw at the moment and slowly pieces are starting to come together.

    Whilst in the hairdressers yesterday, my stylist noticed that I had in fact been losing my hair and more than I had realised, I am blessed with speedy hair growth as in above average and I have really thick hair but the past few months even before I got my bronchitis, the shine has gone and the ends are frizzy and fluffing up and the stylist told me there are fine hairs sprouting and also tufts of a couple of inches long where it has obviously come out and regrown, she said you wouldnt even notice it as I have so much hair.

    I got home with lovely hair and within 3 hours of doing some housework, it completely went in to toilet brush mode, all frizzy and this morning the shine has gone completely - I was hoping the style would at least last for my first day on Monday as I only wash my hair once a week as it never gets greasy. But I am going to have to wash it tomorrow and I will put a treatment on it and leave it on for an hour. I only use straighteners once a week and have no option as my hair is not a nice tide curly, it looks a mess unless it is styled and I cannot go in to my job with hair like that.

    And yesterday, my goodness I got the worse malar rash ever classic one you see with Lupus so I took a photograph of it, I also have a photograph of the blood blisters on my legs (not the ones I had on my 'lady garden' thank god) and I have a photo of the insect bite that I totally reacted to and my leg swelled up.

    But my friend yesterday told me that 3 years ago when she first knew me, she noticed I would get the rash if under the flouro lights but never said anything, and lots of symptoms I got in the UK during the Summer, are now flashing through my mind that I ignored or didnt think anything of. Symptoms that have worsened in Australia in the 3 years I have been here.

    I just want answers, I was so hoping that moving from my job would help and whilst it has a bit, in hindsight, I think I was looking for blame - now I am looking for a diagnosis.

    Roll on July 27th when I see the specialist.



    Quote Originally Posted by Peridot20_Gem View Post
    Oh Sam,

    You naughty woman getting it done and no sympathy with be showed when your suffering (wink) just joking mate, you just be B...dy careful, mind you your going the extreme for this new job and there's nothing better than a nice presentation in all areas.lol

    Oh you have got me laughing this end, i've told you how i do it cover me body in dove and get the old razor out...mind you i've found my lady shaver and did my legs the other day.

    Well i just hope no blisters start because you was sore last time and i hope your ok healthwise mate.

    Love Terry xxxx

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    Hello Sam,

    Your hair is like mine thick and grows quick plus my nails and i've had quite a few hairdressers in the past say if your ill in health it's usually those that are the first to slow down but it's a good job your hairdresser noticed...mine was long i think i told you all down my back one morning i woke and i was bald by my right ear and me tucking my hair up it looked bad, so i skinned the lot and that's when i found another bald patch, we wow clock them with our hair being thick, i'm booked in for next tuesday and my hairdresser checks my head for patches.

    Sam what a shame it going dull quick but my hairdresser dow believe in straightners although she as to use them, it burns the hair slowly, sit with conditioner on your head for a good hour and even better when you wash your hair but in the water olive oil and then wash your head with shampoo and use the conditioner afterwards, olive oil is great for making you hair grow and putting life into it.

    I'm being straight i do feel sorry for anyone with the malar rash i had that it was so deep red on me and sore took quite a few months to move but i have pigment scarring off it now and it was myhusband who clocked that and the blister rashes are terrible when they spread oh i do feel sorry for you, as you've been well boosted up for you new job and now this...please dow let itget you done mate and are you able to get some steriod cream off your doctor to help it on it's way.

    You taking photo's helps alot for them to see but i have noticed that the dermo people take more interest with the skin than rheumo's but i do hope this new specialist is better than the other and you do get some good results.

    Have a nice weekend mate and all my love Terry xxx

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    First day at work today and I feel physically sick as I am so exhausted, my ribs hurt when I breathe in and I have used my inhaler more than once but I still feel better than I did working at the other place and this new job, they seem organised and really nice.

    My foot pain is back which is annoying, I have one month till i see the specialist, I know I wont get answers but I am hoping he will redo the bloods as it will be 4 months since the last test. you would not believe how much I am aching right now, well perhaps you would but its awful, I have taken some painkillers and I am trying to unwind.

    I have opted for the 9 day fortnight which means 9 hour days plus half hour for lunch - that suits me because I get every second Friday off which is fab for me.

    Honestly, I cannot wait to find out if this is in my head or not, I dont think it is though - but one way or another, I need to know.

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