Is there a cure? | Arthritis Information

It kinda bugs me when people tell me, "well, you're so young, they'll have a cure for it in your lifetime," and all I can think is that even if they come up with a cure, they won't be able to remove the joint damage already done.

I know that stress causes RA to be worse, at least for me.  It's what brought it on I believe because of my job.  I have since retired and what a difference that made let me tell you!

Susan

I hear ya! I would strongly recommend that you avoid reading those kinds of "cure" articles, they are BS, plain and simple.  Stick to the sources that are professional in nature.  There is no cure for RA.  The general rule about those "we found the cure" articles/books is never to believe them. If there was a cure for RA, we would all know about it.  Those books/articles are just scams. I was the queen of herbs and doing all natural ways... for years and years... I still do the natural products for me and the house, but there arent a lot of herbs that can help for RA.  I tried the herbs that were shown to just help with RA and never felt any benefit.  Herbs are as serious as drugs... any person into herbs will know some can be really dangerous like lobellia and some are very mild... but they must be treated with respect.  Even taking garlic daily can thin your blood, so its not so great if you are on Prednisone or a blood thinning med.  Every herb has something to consider, esp when mixing with meds. I have seen a friend go the natural route only and had joint damage in a short time.  I am on all these crazy meds too and get scared, but I have tried every new one out there and know some of them help and stopping them can make the RA go out of control. On the other hand, my hair is destroyed and my nails too... not to mention no more fit body and my face is a big round moon! I do seriously worry about the long term effects of these drugs.  That happened to me when I took myself off of Plaquenel when I was newly diagnosed... and my disease got out of control, just as the doc warned me it would.  I thought I would be ok...but I found out different... made me respect the meds that are here, even though thye can be scary and dont have the history of long term side effects.  Its things like that you have to research before taking or you can actually cause harm.   I have had severe RA for years now and lost my active life and work like you were saying.  Id love to say it gets better, but it hasnt really for me.  I have learned how to cope a little better though.  I think that is the key.  I have not come to terms with it really... I get totally bummed too.   I totally understand the family thing too! That is an irritation I have had to deal with way too often.  I dont blame people that just dont understand RA for saying stupid things or not understanding, etc, because they just arent educated about it... but I have given my family lots of info about RA and they still dont get it.  Sometimes so called friends disappear too... its like some people cant handle it, I dont know.  I havent figured that out too much.  Its hard when the support system isnt there. 

Stress makes any health problem worse.  My RA gets really bad also if I have an argument with a loved one or whatever stress is going on... family drama, etc.  I even get blisters on my lips that peel everytime I get stressed out. 

Predinsone! ahhh!!  Love/hate!  I dont look the same at all since being on it... now 5-6 years!  I look horrible!!!!!  I hate that!  People are so rude about it too... they just point it out or say something stupid about it.  I still dont recognize me in the mirror... it has put wieght on me when I was always skinny and fit. Without it though... I wouldnt be walking.  THey say they are working on a new set of meds that will be like a better prednisone... with less side effects!  (stupid gramma elbows too... the prednisone actually redistributes fat cells to your face, etc.  and makes the arms and upper body look terrible. I used to race moutain bikes and lift weights... now I have flapping arms! doh!)

I think these things help: laughter and giving to your favorite charity or doing what you can to conribute to a cause... those things make us feel good inside and even lucky.  I have said many times how lucky I am, even with all these diseases and having no money from the insurance and meds, when I see how most of the world is living in poverty and the suffering of children, adults, animals, the earth... we are lucky when we see that and know what is out there in our world. I have actually felt that if I was healthy and wealthy, I would love to volunteer and helo my causes, because that is where its at!

 I also think people that care around is very important... they say people with that actually do better.  I dont have much of a support system and its very hard at times, so I am lucky to my man is there for me. He is so great about it... he even made it "fun" when he had to push me in wheelchair(my first experience with that... boy do I respect anyone who has to be in one all the time)  to go to a convention that involved so much walking... it helped me overcome some of the embarassment of it. Without him, I dont know... it would be really hard to stay positive all on my own! 

I am also glad for this site!

Good luck to everyone here!

thanks for reading!

Your post inspired me. Thank you so much for sharing it all. Thank you for your insight and perspective...really.

Ali

Pepper, you are right. If we don't laugh we will cry and that's not going to get us anywhere. And I have read those "Cure" stories and I have posted some of them, mostly because they are pretty far fetched. Some are pretty drastic. And you are right about stress. The less we have of it the better we are. I am lucky to have my husband as he is a trooper, most of the time.....LOL

I really don't think that people out there know what RA is other than a form of arthritis. I wonder how we could educate them. Any ideas?

Lesle

Leslie, you asked about educating others... I have sent a lot of info to friends and family on RA.  I got most of it from this site too... just look in the disease secition and pick the descripton of it... I cut and paste any info like that to email and then keep it as a draft to send whenever I want to.  Its handy... one gal really was glad I sent it to her... she even looked up Sjorgrens Syndrome on her own to see what I had to deal with there.  My family has gotten the same stuff, however, and they dont seem to get it all the way.  They sort of try, but really dont. Even with me explaining and all.  They get it somewhat, but wont come over to see me... I have to make it there, but that is another story! Oh well! I am glad for my hubby too!  Anyway, try that or I can email you what I have.  Everyone who has any disease really needs to research it.  I am constantly amazed at how many people with RA there are that have no clue about it or the science, research.  Education is our best bet for now.  (and laughter!

Kathy, I admire your strong belief in a cure... we all hope so.  But...please reconsider the vegan diet idea... if it were that simple, they would have figured it out and we all wouldnt be taking toxic meds!  I dont think most people have any idea about what research is going on for this... we need to stay educated with the info from the right sources.  (not eating meat for years never helped my RA... but its a good way of life and philosophy... we just need a bit more protein and vitamins than most people, so one has to work hard to get that with any diet.  Complete proteins are hard to get also and at least on complete protein can only come from animal sources.  Rice and beans form a complete protein.  I dont eat beef still but I do eat other meat.  I have alwasy been a nut about healthy foods, all of my life, and it really is important to get a balanced diet.  I really know that well since I have trouble eating certain things now for GI reasons... that is why I say to people NOT to cut things out that dont really bother them since it really sucks when you cant eat that and you want to... trust me, it sucks!!! I want pasta!!)

anyway! I will post some good links for good sites when I can...

best luck to all... and lotsa love going out!  We all rock!

Cathy~I'm curious as to how long it's been since you were dignosised?

Pepper I learned the hard way just like you that the meds are part of my life now like it or lump it as my mother use to say. Several years into it while on Plaqunil I decided I could manage without the meds...didn't need them (Or so I thought). Against my doctors advise I went off. She warned me I'd be back in a matter of months regretting that decision and oh was she right. Maybe it took that for me to be a believer. I too was determined not to take all these toxic...expensive drugs for the rest of my life that may or may not be helping me. Since that back slide I've taken on a new attitude about it all.

I've said this many times here....but it's been a while. For some unknown reason one of my biggest fears in life is a the fear of a serious car accident. I'm truely affraid of that; but I can't let that fear interfear with my life. I need to drive. I need to drive to get to my job, to take my children to school....to live an independent life. It's very simular to the medications I take. I need them to live a productive life. Are they risky? Maybe....but we take risk everyday. Why not take this risk and live a happy....somewhat normal life? For me there's no option. It's what I have to do to function in society.

Cathy, I too admire your belief in a cure and I encourage you to pursue that; but I will tell you that damage from RA is not reversable. Once it occurs there is no reversing it. I have some damage that has progressed over the span of 12 years....but my doctors and I both believe without a doubt had I not been on successful DMARD treatments and now biologics the damage would be far worse. I'm not sure to what degree you have RA but diet alone is not a solution that will stand the test of time. Time is not your friend when you have this disease.

[QUOTE=hiphop]I believe there is a cure ..... There has to be..
I think it may be in a type of vegan diet.....
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There is no cure... yet.  I do think they will find one, but I sincerely doubt it will be dietary.  If diet was the cure, diet would have to be the cause, and we know that is not the case.

Just got back from a new rheumatologist. He believes that all this may be is a vitamin D deficiency. he said nobody ever checks this. We will know in a week. My son has been put on 4000mg of Vitamin D, 666mg Calcium, 266mg magnesium, and 10 mg zinc. I hope everyone out there goes and gets their Vitamin D level checked asap. Wouldnt it be great if it could be this simple. The doc says People in Michigan and London type areas get an insufficient amount of sunlight and dont drink Milk anymore. I will also be taking my son to a tanning bed for 3 minutes every other day. If this is not the case he said it would be diagnosed as polyarticular and would treat him with sulfasalazine. He also said he would use antibiotics since I was adimant about this. For some reason my intuition tells me that antibiotcs are the way to go along with a suppressant and antiinflam.

What are everybodys thoughts on this?

Teech7

At least I have a week to keep hoping. I think I may go have a drink or 2 tonight. First time in months I feel that I can actually breathe.

I went through this as well when i went to an alternative osteopath not on my health plan....really got my hopes up. did all kinds of testing...doc was wrong.  they still don't know what it is. But i do hope it works out for you! i believe this is the cause for some people and it would be great if it is. But if not, don't be too down, you can still get well...just be prepared for this NOT to be the answer, just in case.

Alison

Hey Teech,

I hope the vitamin D treatments help your son a lot and maybe even clear it up.  It's definitely not that simple for all of us, but we'll keep our fingers crossed for you (even if it's only a mental crossing for those with swollen knuckles. :))

Hi Leslie,

I am an acupressure therapist here in india. I am treating many RA sufferes here and they are getting recovered upto a great extent. Exercise and deep massage with acupressure definitly cures RA. There is really a cure of RA in acupressure.

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Please don't claim any one specific cure.  As most of us can tell you, everybody's body behaves differently with this disease, so what helps one person feel better will not always work for everyone.  It is annoying, and can wind up being depressing, being told over and over, "if you would only do X, you'd be cured!"

I'm glad you've seen results in your patients from acupressure but an alleviation of symptoms is not a cure.

I've had a form of RA for a little over ten years now. Learned to deal with it [which took some time], adjusted to the drugs, found the right rheumatologist, and made changes in my life to accommodate the disease. Have ups and downs, same as everyone else. 

Now, for the first time, I am optimistic about a new treatment that just completed Phase II of Clinical trials at UCSD by a Dr. Salvatore Albani. What I do know is that this drug works without suppressing the immune system.  The drug is called [in trials] "AT-001" but I've seen it referred to as "JPH1" and "DnaJP1,"  though I believe that these are the terms used for the protein peptide "Junctophilin 1"  which is associated with inflammation in RA. [Dynamics:  Impaired  protein peptide   "Junctophilin 1" causes a T-cell reaction, which triggers inflammation.  The new drug essentially re-educates the immune system and stops/prevents the T-cell reaction. I'm sure I am oversimplifying the process.] It's in pill form and it seems that it's easily tolerated.  Very positive results.

I don't have much info on it and if anyone is knowledgeable, I am sure many of us would welcome the info.