lupus cure

[bluetit42]

can lupus disappear. diagnosed with lupus by two specialist. now told i never had lupus

any suggestions

[Lilrosie1]

Grape seed oil helps control it smoke weed

[Paul_Howard Partner LUPUS UK in reply to Lilrosie1]

bluetit42 , please ensure that you discuss any complementary therapies such as grape seed oil with your consultant before trying them. They can potentially have adverse effects in some people and can possibly interact with some lupus treatments. It is important to bear in mind that lupus presents differently in everyone and so what works for one person can be potentially harmful for someone else.

I would also like to point out to Lilrosie1 that smoking weed is illegal in the UK (excluding the very small number of cases where it may be prescribed for certain conditions). At present there is no reliable clinical evidence to show that cannabis is safe and effective for people with lupus. It can also cause a range of side effects.

[ShaniLove in reply to Paul_Howard]

I had a bad reaction to weed I have lupus be careful what you tell people you don’t know them or there body

[Hidden in reply to Lilrosie1]

Lilrose, I agree with Paul 100% regarding cannabis. People are so misinformed! People think it’s a cure all, but it actually only helps an extremely narrow number of things, but causes way more harm than it does good. Studies have proven, along with other harmful effects, that ‘weed’, though thought of as a pain reliever, actually only helps with pain shortly, in the beginning of it’s use, but ends up actually accentuating pain. Not good. And it’s been known to cause schizophrenia in a large number of users. There are so many more harmful effects. California’s post hippy government made a critical error when they legalized it. Do your homework, please!

[Lilrosie1 in reply to Hidden]

Who's talking about weed? I use essential oils

[Hidden in reply to Lilrosie1]

Read your previous post. It says “ Grape seed oil helps control it smoke weed”. Maybe typos?

[1sam]

bluetit42

As far as I know it has no cure but it can go on remission for years.

What made them say you never had it? And what made them say thay you did?

Not every Dr in this world know about lupus. Within 2 weeks I had 3 saying I had it and 2 saying the opposite.

Cheers!

[bluetit42 in reply to 1sam]

two different rheumatologists. one from the famous st thomas's lupus centre london. another from my local hospital. now both sides are backing each other saying never had it after treating me for several years. i am shocked and disgusted

[Silvergilt in reply to bluetit42]

Oh dear, that's really disconcerting. However, it's possible there is another diagnosis? Or are they insisting that there's no illness at all and therefore no treatment? Because if you still have symptoms, then you have SOMETHING, even if it isn't lupus. I guess a few more details would be good, but sounds like a change in diagnosis, which happens, frustrating but true. However I'm only going on a guess here.

[tduvall68 in reply to 1sam]

True, this is no cure, but you can learn how to manage it and write down in a journal on how you feel almost everyday. It really helps with you appointments with my doctors( which I have 5) all related to my lupus and other things, and just remember , not everything we have is not always related to our lupus, that is why it is a great idea to have other doctor's in other fields to help with that. Now having lupus doe's not help at all, but learning other things that can help is s great tool.

God bless and hug from Fort Collins, Colorado

Terri

[tduvall68]

Stay positive. They are still learning about lupus. I was told I have lupus and the one thing that really helped was pictures I would take when having a flare up, and writing down everything of any changes, good or bad. I am really out there, in Fort Collins, Colorado, getting the word out and even the best of the best of specialist will tell, they two are still learning more about this dreadful disease. Plus I have more than one doctor, which I have a neurologist , pulmonary, and now a hematologist, and of course my regular doctor. Lupus can strike in many forms and plus, you can never trust a ANA tests, cause that can be a negative positive or a positive negative, and most of the time, that test only shows if you are having major problems that you may have, on top of a drug therapy you may be on, it will show that something else is going on , that was not there before, so don't give up. You have doctors to think out side the box, and believe it or not, they starting to do this. For me, I am a big activist for this disease, and I will not give up. I am now doing IV infusions at the Cancer Care and Hematology Center due to a Gastric Bypass I had down in 2010 , and they are finding that people ,years later, not absorb like we should and losing most important nutrition and can be life threating and people have died cause of this. I don't regret the surgery at any means, cause I have lost over 250 pounds , and I would not be here, if I did not make that life changing surgery.

So, in short, write down everything you are feeling, like a journal , and if you can and this is very important , take pictures on your cell phone, so when you go in , you can show this to any doctor's you see.

Take care, and please don't feel you are alone. Stay positive, and God Bless

Terri

Hugs from Colorado

[Fennella02]

I've heard of this happening as a result of successful treatment but going into remission is not the same as withdrawing the diagnosis. People with cancer can go into remission but their cancer history is not removed. Also, remission is not the same as a cure in either lupus or cancer.

I hope you are not being denied treatment that you need as a result of this confusion. Have they discharged you?

[Paul_Howard Partner LUPUS UK]

Hi bluetit42 ,

It is possible for lupus to go into remission, but it will not go away completely. It is possible that if you have been receiving treatment for your lupus, the antibody levels may have decreased and no longer show up as 'positive' in tests.

Have you just started seeing a new consultant? Are they able to speak with the previous consultants who confirmed your diagnosis? Are you still experiencing symptoms at present?

[tduvall68 in reply to Paul_Howard]

My lupus doctor has tole me that nowadays, they cant now trust the ANA blood test, and they are finding that writing these down and pictures doing a flare-up. but yes you are right, once you have lupus or any other autoimmune disease, they just have to find some treatment in medicine or even IV infusions, so you can try to handle every day life, but like I said before sweetie, be strong and dont give up.

Hugs from Colorado

Terri

[bluetit42]

i don't know what to do. maybe try to go private but i don't have the funds. i don't take any treatment but i am looking into the b12 deficiency symptoms

[Paul_Howard Partner LUPUS UK in reply to bluetit42]

Hi bluetit42 ,

Have you been on any treatments in the past for your lupus?

You could ask your GP to refer you to another consultant for a second opinion. It may be best to get a referral to someone with a specialist interest in lupus. If you let me know whereabouts in the country you are based, I can provide you with information about any lupus specialists we know nearby?

[bluetit42 in reply to Paul_Howard]

i have just found my old paper work from the lupus unit. it says my full blood tests are very consistent with a diagnosis of lupus (ANA positive,titre>1:320. lymphopenia,raised ESR,normal CRP... is this a positive test for lupus thanks for your opinion

[Paul_Howard Partner LUPUS UK in reply to bluetit42]

Hi bluetit42 ,

A positive ANA test combined with a raised ESR (yet normal CRP) is suggestive of lupus, although it may not be the only possible cause for these results. Do you know if you have been tested for anti-dsDNA antibodies?

[bluetit42 in reply to Paul_Howard]

ahh just found the anti-dsDNA antibodies are negative. rheumatoid factor negative c3 and c4 normal does this help thanks paul

[Paul_Howard Partner LUPUS UK in reply to bluetit42]

Anti-dsDNA is a highly specific test for lupus which is positive in 40-80% of people with SLE. A negative result doesn't necessarily rule out a lupus diagnosis, but it makes it slightly less likely. You'd also often expect to see low levels of C3 in people with lupus.

If you'd like more information about the tests used in the diagnosis of lupus, you can read/download our booklet here - lupusuk.org.uk/wp-content/u...

[bluetit42 in reply to Paul_Howard]

so i was treated for lupus and i don't even have it not impressed

[Paul_Howard Partner LUPUS UK in reply to bluetit42]

Hi bluetit42 ,

I'm not saying that you don't have lupus. It is a very complicated diagnosis and not all people will present with the same clinical markers. I am not medically trained and not able to say whether you have lupus or not. I was just trying to provide you with information about the tests you have mentioned.

[bluetit42 in reply to Paul_Howard]

its interesting to read about lupus in young people. i used to get mumps every year as a child. my glands would swell and hurt like mad. this happened for years until i reached 11. very odd.

[bluetit42]

thank you paul

[tduvall68]

You need to be put on something to help with your lupus, or it could start doing things to your organs and skin or both. I hope you take Paul Howard information. and get some relief. And like I said before, always write things down everyday on how you feel, and if you can, take pictures with your cell phone, cause the ANA blood test is not always true. I hope you get some help with your health sweetie.

Hugs from Fort Collins, Colorado

Terri

[bluetit42 in reply to tduvall68]

i am getting worse all the time. can barely walk and very tired. stiff joints everywhere and recently neck pain. tingling in feet and hands. fibro ,memory loss and unbalanced to the point where i tip over. i was thinking more b12 than lupus.

[tduvall68]

your lupus can come and go, but it well never go away sweetie. I have had lupus for over 5 years and had the gastric bypass in 2010 and lost over 250 pounds. I live in Fort Collins, Colorado where pot is legal but with my status, I can not smoke it due to I am in the medical field and that is a number one no no. It might be legal in some states here in the US but it is still illegal on the federal side.

And Paul is right. One thing about medicine for lupus, you have to know that it might work great for one person, but it might not work for you. There is many different sides of lupus, and some do affect the other organs in the body, for me it is my right kidney, (Due to very low iron deficiency) and I am doing Iron IV Infusions, which well help with my restless leg, and this was due to my gastric bypass cause they are finding out after all these years, people that get the bypass, can not absorb like we should and my daughter who is 22 years old, she has a very rare blood disease, but not really effect by lupus. It is called APS or Antiphosholipid Antibody Syndrome. She started getting a lot of clots and mostly in her lungs, and if they do not do a test just for checking on that, it could be missed. So, for her, there is some medicine she is on as of me, but she can't take like, Methotrexate, Pentoxifylline ER, Cyclobenzaprine, Vimpat, Nifedipine ER, Diclofenac, which are some of the medicine I am on that she can not take at all.

So, all and all, please check with you doctor about trying different medicine, cause it could give you a bad reaction and that could also give you drug-related lupus.

Be safe and god bless.

Hugs from the states.

Terri

[NatMar in reply to tduvall68]

Hi, i am reading this very much after the conversation, but wondered if you could give me pointers. In short, i have had in my life bouts of illness, initially a very bad case of mono lasting for months and than 3

episodes, now seemingly closer together, of various symptoms as: neck stiffness, tingling of feet, spine and head, back of head squeezing, extreme fatigue, difficulty breathing, vision problems, headaches and ophthalmic migraines, cognitive problems, skin rashes, tinnitus, one psychosis, involuntary movements and chorea, slight seizures . one year ago only, a hematologist dealing with thrombosis only tested various thrombotic triggers and it came back with recurrent positive antiphospholipid antibodies ( anti beta 2 glycoprotein). negative ANA. chronic EBV. This appeared to point to APS . Still i have no meds. I go into complete remissions. A specialist for APS ruled it out, for reasons that surprise me considering the positive and recurrent antiphospholipid antibodies, which are the hallmarks for the diagnosis. I now am referred to an immunologist to assess lupus, and I must wait for 6 months for this. I expect lupus will be ruled out because of negative ANA. I may also by the time I see the specialist have gone into remission. I am getting desperate, pessimistic, the episodes are incredibly painful and i have had no help each time, and i am left traumatized and in panic whenever a flare creeping up,. Importantly and this is so scary, my cognition is affected every time and i fear not being able to function at work as I am getting older and this is more difficult to sustain each time.

[EricaN]

No

[bluetit42]

I have given up on the lupus diagnosis as you can see I have not written anything for some time. I have been having problems with phlegm in my throat so had a chest scan they thought it was cancer and to cut a long story short I have been told I have Bronchiectisis (sp) and its likely due to auto immune. The new drs contacted my old Rheumatologist and they are refusing to treat me...not answering any correspondence. I claimed PIP and I believe my Rheumy did not want me to get PIP so took away the diagnosis ....you cant make this crap up!