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Jaycee
11-23-2002, 07:03 PM
My son in New Zealand emailed your excellent site to me knowing I had recently been diagnosed with Lupus. I still have my doubts or is that wishful thinking.
Do any other Lupus sufferes have a 24 hour a day itch which no medication can stop or the intermittened hundreds of little electric type shocks that come mainly on the back (due I think from the immune system going bezerk)that is what concerns me most other than slight pain in a couple of fingers from the Rhuematoid that was triggered off by the virus I contracted 8 months ago I feel almost back to normal as long as I restrict my workload. Many thanks for the opportunity to meet with some genuine Americans. Jaycee

stjames13
11-24-2002, 04:59 AM
JAYCEE welcome from UP YANDER!!!lol

to answer your question...take a look at the post I just put up called "FINALLY" The pain in the fingers may be caised by RAYNAUDS SYNDROME another common auto immune disease that usually follows LUPUS SUFFERERS...have your doc check you for that as it may get worse. Mine got so bad one time it closed ALL thre small arteries in my hear thus giving me a heart attack.....Just keep yoursel;f well rested and pay attention to what your body is telling you.....

stjames

Jaycee
11-24-2002, 04:52 PM
G-day St.James thanks for your suggestion I have never heard any of my doctors mention Raynaud's syndrome so will ask about it when I see my G.P tomorrow. The rhuematologist did diagnose Rhuematoid arthritis but recently the immunologist said Still's disease could also not be ruled out would that be another name for Raynaud's? it's all Chinese to me at the moment hopefully I will become more informed reading this site. We're expecting 30 degrees to day so I will be inside for most of it.

Saysusie
11-24-2002, 07:02 PM
Jaycee;
Stills Disease is not the same as Raynauds. Stills is a form of arthritis with spiking fevers and reddish colored rash. It mostly affects children and Juvenile Arthritis is a form of Stills Disease. Like Lupus, Stills disease is "systemic" - meaning it has many symptoms and affects many parts of the body (body-wide disease). You can suffer extreme fatigue, high fevers (up to 104 degrees)which rapidly returns to normal, reddish skin rash that comes and goes and usually does not itch, sore throat, lymph glands swelling, pleuritis (lung inflamation), pericardits(fluid around the heart) and pleuralcy (fluid around the lungs). Here is the Kicker - most of these symptoms are also characteristic with Lupus. Make sure that your doctor's do careful and extensive tests!
Hope this has been helpful!
Take Care
Saysusie

Jaycee
11-26-2002, 11:08 PM
SaySuzie thanks for the explanation on Stills I do have quite a number of those symptoms you listed with the exception of the not itching part the itching is my main problem at the moment. Regarding St.Jame's comments my doctor explained the symptoms of Raynauds Syndrome for me to day and no I do not have that problem. Well that at least is something to be thankful for. He also said that I could return to my charity work (keeping it within reason) so I hope to start back next week at a new op shop helping raise funds for WIZO.

Jaycee
11-26-2002, 11:10 PM
SaySuzie thanks for the explanation on Stills I do have quite a number of those symptoms you listed with the exception of the not itching part the itching is my main problem at the moment. Regarding St.Jame's comments my doctor explained the symptoms of Raynauds Syndrome for me to day and no I do not have that problem. Well that at least is something to be thankful for. He also said that I could return to my charity work (keeping it within reason) so I hope to start back next week at a new op shop helping raise funds for WIZO.

Saysusie
11-29-2002, 07:30 AM
Jaycee - It sounds like your doctors are at least listening to you and answering your questions. Do not be afraid to ask as many questions as you have and demand that they answer you in terms that you can understand!
I am glad that you can get back to doing the thing that you love, charity work. However, I do not know what WIZO is? Could you tell me please?
Saysusie

Jaycee
12-04-2002, 06:28 PM
Saysuzie would you know if anyone in your group is using Bromelain Tablets to help with their inflamation a Naturopath suggested I use them for my blood clot problems, for 8 months due to allergies I have not used Aspirin Warfren etc. I found Bromelain works for me also it is supposed to be on a par with prednizone as an anti inflammatory sure enough when I was just taking them without any other drugs my rhuematoid was almost non existant when I stopped them (thinking Bromelain could have been contributing to the itch) the problems with my hands wrists etc returned with a vengance now I take them along with the Plaquenil.Answering your question on Wizo it is an international womens organization specifically targeting the needs of women children and the aged who live in Israel but we also share our op shop with a group of women who care for the HIV babies in Thailand.We have loads of fun never a dull moment.

Taff in Oz
11-24-2005, 11:39 AM
I too am worried as I am a newbie, diagnosed with a yes to lupus 2/3 weeks ago.. I do have a problem with an itch, but due to Lupus I am not sure as of yet. It only happens to me on my legs, and after I have shaved them, I have tried waxing, and creams, lotions, but still that intense itch.. It keeps me awake at night, and cant even put my two legs together... after about 3 days it goes away... I was so glad for winter, so I did not have to de hair myself so much... but now Summer is here, it will all start over again... Like you I too am ignorant to all this, I had never even heard of Lupus... So I guess we can learn together, and help each other... I am from Perth WA.. You ? If you hear of a remedy for intense itch, please let me know... For my sanity sake..
I have posted all my woes in the newbies section, I hope someone will be able to shed some light on things for me.... If you feel you need a shoulder, or a good ear, then please feel free to unload on me... Lets try to keep smiling, as there are many in the world who are even worst than us... May God give us all, the strength to stay on top ...... My real name is Janyce... I am often called Jaycee ") but my name is pronounced Jan eece..hugs from me to you..

Saysusie
11-26-2005, 07:44 AM
Jaycee:
I don't know if anyone here uses Bromelain. Here is what I found out about it:
Bromelain inhibits the release of certain inflammation-causing chemicals and is usually prescribed by naturopathic doctors. These NP's claim that it also activates a chemical in the blood and tissues that breaks down fibrin, a protein-sugar complex that is partly responsible for blood clotting.
By breaking down fibrin, bromelain supposedly produces another benefit: It reduces swelling. Thatís because fibrin prevents injured tissues from draining, and when they canít drain, they swell. NP's also prescribe it for colds, flu, and ear infections to loosen thick mucus so it can drain or be coughed up."
Bromelain may also keep platelets from sticking to each other and to blood vessel walls, which is a major factor in atherosclerosis (hardening of the arteries). Bromelain helps prevent platelet clumping by decreasing the release of a chemical that causes them to stick together.

Bromelain is a general name for a family of sulfhydryl-containing, proteolytic enzymes obtained from the pineapple plant. Bromelain is the name of a group of powerful protein-digesting, or proteolytic, enzymes that are found in the pineapple plant (Ananas comosus). It was discovered in 1957, and has been studied since then. bromelain is primarily used for reducing muscle and tissue inflammation and as a digestive aid. However, it has also been used to reduce the symptoms of eczema. Bromelain taken with the flavonoid quercetin (Flavonoids is the umbrella term given to some 4,000 compounds that impart the colorful pigment to fruits, vegetables and herbs - Quercetin, which is primarily found in apples, onions, and black tea, is a type of flavonoid (plant pigment) that serves as a building block for other members of the flavonoid family) can relieve the red and often intensely itchy rashes of eczema and other similar symptoms .Supplements are made from enzymes found in the pineapple stem.

I hope that this has been helpful :-)
Saysusie