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dragonfly

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 #1 
Is anyone in remission? If so, how did you get there?
wings65

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 #2 
That's a good question, and I hope you can get some answers. I would certainly like to know. My disease activity has never gone into remission. Some days are better than others, but the constant pain and stiffness are a daily reminder of this disease.
darla627

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 #3 
Imuran has given me some relief the flareups are not as often I don't know if that would work for you but I've never experienced remission just a little little time out from the chemo type medicine imuran good luck
Robinj

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 #4 
I think remission is a word that is a little overused and misunderstood.
Remission can be a temporary or permanent decrease or subsidence of manifestations of a disease.

I believe that there are periods of inactivity in lupus. For most, there is no permanent deal.
As there is no" cure" for cancer (supposedly), there most likely will not be a cure for lupus. Not in my lifetime anyway. It just wouldn't be a money maker.
Why do you think that chemo drugs are prescribed for lupus patients? Makes money. Hook up the insurance companies in the picture. It is pretty easy to see where it goes. It goes into the pockets of the of the six figure MFer's controlling our healthcare.

Remember when HIV/AIDS was the big deal? What happened with that? It was preventable and people got educated and the need for the big pharma was reduced.
MONEY MONEY MONEY

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taffylinden

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 #5 
It really is all about the money. It's that way in every industry, but it's harder to stomach in the medical industry because the customers are sick people. No wonder Martin Shkreli, the guy who jacked up the cancer drug a jillion percent, has been called "the most hated man in America." (And he's not the only one to jack up prices.) But as far as Wall Street is concerned, not enough people have lupus to make the R&D costs into more effective meds profitable.

With AIDS, the answer was not just educating people. That helped, but not much: the death rate has dropped dramatically, but the transmission rate has merely stabilized. What really turned the tide was...money. Remember all those mega-star fundraisers?  AIDS awareness events? Cover stories in every major magazine, headlines in newspapers--all leading to money and public demand for a cure. That led to the U.S. government (and governments overseas)-backed research. The result was the drug combo that prevents HIV from developing into AIDS. And to be fair, millions of people were HIV positive, including big celebrities who died, and it WAS a death sentence back then. Those were big factors in the public outrage that fueled the drive for treatment. 

There probably isn't going to be a big push to find effective treatments for lupus because there's little public pressure to find a cure. That's why ALL the meds used to treat lupus (except Benlysta) were developed for other diseases and conditions, diseases that had millions of sufferers and therefore got attention. If misery alone led to treatment, there'd have been better lupus meds long ago. 

I find all this enormously frustrating.
hejost

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 #6 
I guess no-one looks forward to menopause but it feels like a remission to me...nothing like as bad as before menopause anyway
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Robinj

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 #7 
I agree Taffy. It was called an epidemic and people were freaking. So, yes, a lot of money was thrown at hiv/aids. Sadly, it didn't help my best friend. She wasn't a celebrity, but strangely enough, she came from a lot of money.  She was a person who made some mistakes in life and got caught up in the drug scene. She fought AIDS for nearly 30 years. She is my hero, regardless of what brought her there. A beautiful, amazing soul.

RIP, NP

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
TXgirl

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 #8 
I am 100% better today. Since I started this journey my pain has been constant. So....2 years?!?! It became really bad after we had a very hot, Texas sunny day in Houston at an air show. It's was really bad. I couldn't do anything to make it go away. In January at my Reumy appt my husband spoke up about the pain and my dr prescribed a small dosage of preg. Just enough to get it in control. It worked. Thank you!!!!!!!! I've been pain free (well almost) for several weeks. I'm feeling good. Then he prescribed s lotion ointment for any joint that hurts. I have to get it from a pharmacy in San Antonio....because everything sux on the border, including our pharmacies.

But.....I am aware of my triggers. The sun is horrible for me. Or sever heat and major stress. It will put me out of commmision in a matter of hours.

So, I feel as if I was in remission. But I know I am in a pause in activity. Texas summer is around the corner.......just says.
D

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 #9 
Good morning~  
I read the message boards often, hoping to gain knowledge and find things that work to alleviate symptoms and discover what works (and what doesn't) for some.
I'm a little uncomfortable popping into conversations (I feel like I'm spying!), but I value the information shared by all of you.  If I discover anything worth sharing, however, I'll put it out there - but that hasn't been the case thus far ~!~
That said, I wonder if Txgirl would share the name of the presribed lotion/ointment that is used for joint pain?  
Briefly, I was diagnosed a few years ago with SLE (as well as fibro and many other auto immune conditions).  I tried infusions, plaquenil, imuran, and many MANY other prescriptions to no avail.  I investigated UVA1 treatments, but no one in my area offers such a service and I really can't make the purchase, or build one.  Currently, my doctor prescribed LDN (low dose naltrexone) which helps slightly with the fibromyalgia, but not the lupus.  I found some relief for the muscle pain with baclofen, but it's not a magic bullet and is taken at night only.  I'd love to try something topical vs. something ingested.  If you can find the time, please post the prescription name?  Thank you, in advance.  *Best to all*


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Deb
jeandennie5

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 #10 
Hi Everyone,

It's heartbreaking to read the unpleasant experiences you have shared. I can relate to your suffering. I was diagnosed in 2012; looking back I may have had lupus way longer and never knew it because the symptoms of those many years ago are identical to what I've experienced since the diagnosis. 

For the past two years I have not experienced any lupus related symptoms. I give credit to my Lord and Savior Jesus Christ, and the constant prayer of my son who is now fifteen years old. I opted from taking conventional medicine and decided to take control of this disease, the spiritual way. I am a born again christian, and I live by the bible. The bible states that God desires us to be in good health, additionally, the herbs of the field are for the healing of the people; I believe it. I juice regularly, and add turmeric root, and ginger root to the juice; these two root vegetable are know for their anti inflammatory   properties. Last Friday, Good Morning America did a segment on turmeric. It's time to take charge of your health, do not depend solely on the doctors to do it for you.
Here is a picture of Turmeric.
Image result

 

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jeandennie
brvheart

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 #11 
We added Tumeric 3 months ago and have seen little affect in slowing the progression of the disease. Now I have fibro and stage 2 kidney disease to boot.
taffylinden

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 #12 
Hello, jeandennie. Thanks for sharing your experiences. You should know that the lupus patients on here have a wide variety of religious backgrounds and preferences. Also, there are many religious people here who pray fervently and with faith, yet have had to deal with tremendous pain and no improvement whatsoever. For those people in particular, religious posts can cause a great deal of emotional pain--surely not your intent. So as one Christian to another, I'm asking you to please be mindful of that. The unspoken rule here is that we don't proselytize. 

Some people swear by turmeric. If you do a search on this site, you'll find there have been other threads on it. I'm all for anything that helps anyone (if she consults her doc first) but I tried turmeric for two months, and it just didn't work for me. Lupus is a complex disease, and what works for one won't work for another. I'm really glad it worked for you, though. 

Thanks for stopping in. Best of luck to you. 
TXgirl

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 #13 
Hi D

My Reumy prescribed a compound ointment that is 3% Diclofenac and 5% Lidocane ointment. It doesn't have a name. I had a friend with RA that had me try a tube of her 1% Diclofenac ointment. And I called him for the prescription. He called it in that day. When we talked at my appt in January he prescribed the compound. Which on days like today when I feel like a train has ran over my body I will use it on every major joint. Good luck!
D

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 #14 
G'morning, Txgirl!  Many thanks for responding to my inquiry.  I won't see my rheumy again until April, but I'll ask him about prescribing the ointment.  With a little luck, it will be an rx that will help.  Seems that with every weather event, pain levels escalate and I'd really love to stay ahead of it if possible.  

Be well~


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Deb
Cakelady

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 #15 
Thanks taffy for putting the reglious stuff so nicely. I am not so sure I could have

Has a rule of thumb around here religion and politics should be left off the forum. We used to have the ability to PM each other but people abused it and it was taken away.


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