My sons story
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Hello, My sons name is josh and he is 17 yrs old. Back in August he started complaining about his hands hurting. I told him he needed to take it easy at the gym.He started complaining about his ankles hurting so I bought him new shoes. Then one morning my little man came into my bed early one morning crying his eyes out because he couldnt pull the covers up over himself. I looked at his hands and what I saw was was not MY babies hands. I called the doc and she told us to come in asap. She gave him a shot of prednisone and drew blood. I got a call from her 2 days later and I was told my son had juvenile rheumatoid arthritis. Thats when my life that very second crashed all around me. I never felt so vulnerable in my life. I will never be the same. She didnt tell me he had a fatel disease but what she was telling me in my mind was that my baby was going to live the rest of his young life in pain,possibly disfigured and on horrible meds. I went insane. How do you tell your baby he has a disease? I went to my family doc and along with my news she refused to give him a referral to a rheumatologist b/c I have a HMO and in the end it would cost her money to send him there. I asked her how she could tell me my son has a disease that requires a specialists attention and then refuse to allow us to move forward. She said she was capable of treating him and I asked her how many JRA cases she has treated in the past and she looked shocked and said around five. After telling her where to go I contacted all the boards I possibly could and filed complaints against her. She sent me a christmas card. What a gal! To make a long story short I found a new doc and he was happy to give us the referral. I was finaly on the right road to get my son help (two months later,god I hate having a hmo)at childrens hospital in Detroit. I was told the big plan to "help" my son was this drug called methotrexate. I went home and looked in my bible (parents guide to rheumatory arthritis GREAT BOOK!) and I looked up this drug and once again the world around me came crashing down. I went insane once again and spent every waking moment on line researching alternitives.I found a all natural anti inflammatory, pain reliever called CURAMIN its made by Terry Naturally. I believe the web site is curamin.com. You can also look it up on youtube. IT WORKS!!!! My son does not even take motrin b/c the curamin takes care of the inflammation and the pain. PLEASE,PLEASE if you are on steroids or methotrexate give this a shot. NO SIDE EFFECTS AND NO DRUG INTERACTIONS! Im going to say it took about a month for this all natural drug to get in his system to where he felt 100% better. I hope my sons story will help. Thanks, Sandy
Sandy,
I applaud you for finding a second doctor for your son who will give you a referral, and your determination to help him feel better. I understand your fears about the medications, but I urge you to reconsider them. I have had arthritis since I was 7, so I have been through it all, at 25 I now fully understand the need for anti-rheumatic drugs. I think my own fear and denial may have made me worse. I have tried every alternative therapy the internet could find me, did lengthy acupuncture, and found some relief in pain and swelling. BUT, the anti-rheumatic drugs slow the progression of the disease and can make it go into remission, unlike anything else.
After avoiding methotrexate and the like for years, I now have damage to my sacrum and lower back. For me there is no choice any more. The lesser of all evils became the medicine. I know you are afraid of your son becoming 'disfigured' - so which is worse? Disfigurement or meds? Don't let your fears get in the way of proper treatment, I know it can be tough. Remember, all of us on here use alternative therapies in combination with meds - we find what works for us. We can not see what is happening on the inside, and that's why it is important to trust your rheumatologist.
I want to stress to you that no matter what happens to your son, JRA will not affect his mind. He will always be your baby, and I just bet, even after the tears, he'll be a stronger person in the end. Good luck to you both.
-Britt
Britt, Thanks for responding. The curamin is working for him. It is a combination of tumeric,boswellia and DLPA. My aunts father in law has arthritis really bad and decided to give it a shot. I just heard the news that he is off the other meds now. Thats why I decided to share my experiences. I really urge everyone to give it a shot. Its not like prednisone where you will see results right away. It takes a couple weeks to get in your system not unlike the mobic my son used to take. The owner at the health food store told me the other day that he has alot of MS and fybermyalsia (sorry about the spelling) patients that control their pain with the curamin as well. BTW I stated earlier that there wasnt any interactions with other drugs but I was wrong I read that there is a natural blood thinning agent so people on blood thinners should be carefull. Sandy
I second that Britt. I have suffered from degenerative arthritis since childhood. I was so afraid to take the medicines that I tried EVERYTHING else (curamin included). I now have irreversible damage and after 15 years, I have given in to taking the meds. I'm still trying to find the right combination. I just turned 30 and have a 6 month old daughter. I'm taking the meds for my daughter's sake now... I want to be able to keep up with her for a long time.
I wish your son the best Sandy, and you too. He will have to struggle at times, but it will be harder for you as his mother. My mother still cries whenever I have a flare (now that I'm a mom, I finally know how she feels).
-A
Sandy,
There's a HUGE difference between the arthritis you aunt's father in law has and JRA. It sounds like he may be elderly, and probably has osteoarthritis (caused by overuse and wear and tear). JRA is the immune system actually attacking the joints (totally different). I understand that your sons symptoms may have diminished and he has little or no pain (that's awesome). Unfortunately, the disease is still attacking his joints. I went through the same thing for many many years. Sometimes I would try a new holistic medicine or vitamin, or juice, or exercise... etc. and I'd think it was working... it really was just masking my disease and allowing me to function. Sometimes, my disease just didn't even bother me that much and I wasn't in a flare. I went years like this, but the whole time my joints were degenerating. I have to admit, I'm lucky I'm not worse than I am. I think that it's wise for you to use all the holistic and natural options you have. Just don't give up on the real meds. I also suggest getting yearly x-rays to monitor any joint damage. Like I said before, this will be a harder journey for you than your son.
Wish you well,
A
I have to agree with Britt and Adrienne, I have had RA for 34 years and was originally diagnosed with JRA when I was 13 years old. I have at several points in my life quite all traditional medications and have used alternative herbal medications, though I still do; I TOTALLY regret every stopping the drugs that STOP the progression of this disease. I am now 47 and considered disabled. I was told at 17 to expect to be disabled and totally deformed by the time i was 40 years old..I beat them by 7 years but I did not follow their advice.
I currently take OCP which is a powder additive i take every morning for swelling and pain it was working though Auto Immune Disease are not your typical osteoarthritis that is wear and tear. Remember it is a DISEASE that is not forgiving. Fibromyalgia is considered an Auto Immune disease but is treated differently than RA, PA and the other Primary Auto Immune Arthritis's.
Sorry for a lecture but please if your son is 17 (unless that was a typo) at some point he needs to make his decision and he needs to do the research and join discussions. I am a mother and grandmother, my two grandkids have serious disorders and my son is a liver transplant patient.
We do thank you for your information on the alternative treatment and I am 100% sure more than half of us will do our research on it.
Tess
Listen to Tess and the girls! We all take methotrexate, an we are all better off for it. yes, it comes with side effects, but I know that when I've tried to stop taking it, I couldn't walk.
Your son may seem cured, but there is no way to know what kind of deformation is taking place around his joints unless you are having him x-rayed.
Talk to the Dr., tell him that you don't want to start with MTX...see if he will work with you to try one of the other DMARDS, like plaquenil. It doesn't work as well, but for some people it does great things, and it is a very benign drug, won't hurt anything.
- Kati
MTX works very well for many people, but there are other options out there too. I tried taking MTX when I was 21 and I wasn't having any improvement. The rheumatologist I was seeing kept increasing my dosage. I was taking an absurd amount and getting very sick. I was vomiting so much that they put me on nexium because I started burning my esophagus. I finally went off the MTX and everything else for a very long time. Unfortunately, I have permanent damage and can only turn my neck to the right (among other aches and pains). Now, several rheumatologists later, I am on Simponi, Plaquenil, Naprosyn (as needed) & Darvocet (as needed). I am currently tapering off prednisone (but I was only on that because I had to stop all of my other meds during pregnancy... which went very well). I think this combo of meds is working, but we're still fine tuning it.
Trust us girls... we're living proof that the holistic approach isn't enough. Get your son a GOOD rheumy. It may be hard to find one... I'm on my 11th. They should be able to start with more mild medications and work from there.
Best of luck,
A
Previously Adrienne wrote:
MTX works very well for many people, but there are other options out there too. I tried taking MTX when I was 21 and I wasn't having any improvement. The rheumatologist I was seeing kept increasing my dosage. I was taking an absurd amount and getting very sick. I was vomiting so much that they put me on nexium because I started burning my esophagus. I finally went off the MTX and everything else for a very long time. Unfortunately, I have permanent damage and can only turn my neck to the right (among other aches and pains). Now, several rheumatologists later, I am on Simponi, Plaquenil, Naprosyn (as needed) & Darvocet (as needed). I am currently tapering off prednisone (but I was only on that because I had to stop all of my other meds during pregnancy... which went very well). I think this combo of meds is working, but we're still fine tuning it.
Trust us girls... we're living proof that the holistic approach isn't enough. Get your son a GOOD rheumy. It may be hard to find one... I'm on my 11th. They should be able to start with more mild medications and work from there.
Best of luck,
A
Thanks so much to all. I was under the impression that the only time the disease was under destruction was when there was pain and swelling present. I will be sure to have xrays done. Thanks Sandy
Sandy,
I know it is tough hearing all of this...I've seen my own mother cry countless times - but she also says I'm the strongest person she knows. He will be okay, and I think Tess was right that he needs to be joined in the discussions about his health. Though he is your baby, he will be 18 soon - an adult, and he will need to learn how to make educated decisions for himself conscerning his disease. This can be daunting at first, but having gone through this same thing with my own parents, I think it is very important to teach him NOW how to make these decisions for himself. Arthritis patients usually feel like they have no control over their bodies, and at least by being part of choosing your own treatment, you can feel empowered to keep moving forward and not let this slow you down.
My parents for years have not wanted me on MTX, Enbrel, Humira, you name it - because they were scared of side effects (and I think in part, admitting that their daughter is that sick). Their fear fed into me, and I refused treatment. You have to remember, though it is tough on you, you are not the one living with the pain. I finally got bad enough that I put my foot down with my entire family, and said "guess what, this is my reality, i'm taking the meds!" They didn't argue one bit, and 2 months later - I am getting a few days a week of sanity and less pain ( I know it'll only get better from here).
If you want him to have the most 'normal' life possible, get him on traditional meds too. Slow the disease, and maybe he won't ever get that bad. Feel free to email me, or have your son email me. I am still young enough that I know how he feels - I too was 17 when it all got to its worst, and I couldn't write in school anymore. Please offer it to him, its scary, and I'd be happy to help answer questions/fears he may have - and I promise to be positive 
-Britt
(if you want to email, click on my picture, and it will send you to a place to email me)
Sandy,
I do not have RA, but I have fibromyalgia and osteoarthritis (also degenerative disc disease piriformis syndrome--which means a sciatic nerve is being cut off by a hip muscle). I am 24 years old, and my mom too had to watch me in pain. I can imagine how incredibly painful that is for a mother... But, the best advice I can give you is that the absence of pain does not mean the disease is gone. There are days, even weeks when my pain from the piriformis syndrome doesn't bother me too much, but once I started going back to my normal activities (running, in this case) I was in so much pain that I was back in the ER b/c I vomited and passed out on my husband.
I have found that for me, and for most of us here, the best treatment plan is to use western medicine in conjunction with homeopathic medicine. Since you're in the Detroit area, I would advise you to check out Henry Ford's Center for Integrative Medicine. They're located in Novi, and absolutely amazing.
Yes, many of the medications that we all take have really, really scary labels, but in the end, it's always a balance of risk vs. reward...
Chelle
Hi Sandy,
Before my diagnosis, all I chose to use were herbal supplements to assist with OA and I was so reluctant to give in to the meds. I've thought about giving up the meds more than once, but the experiences of the ladies here always have cautioned against that. I also remember the horrible pain and immobility- I could barely walk and remember I couldn't lift my cup. Yes, sometimes I hate my methotrexate but I am honestly and truly grateful for it along with the rest of the meds. Trust and believe for good- it's so hard to see one of your kids in pain, I know this too from experience, but keep believing positively for the future. Somehow, it seems to always work out.
Previously wrote:
Hello, My sons name is josh and he is 17 yrs old. Back in August he started complaining about his hands hurting. I told him he needed to take it easy at the gym.He started complaining about his ankles hurting so I bought him new shoes. Then one morning my little man came into my bed early one morning crying his eyes out because he couldnt pull the covers up over himself. I looked at his hands and what I saw was was not MY babies hands. I called the doc and she told us to come in asap. She gave him a shot of prednisone and drew blood. I got a call from her 2 days later and I was told my son had juvenile rheumatoid arthritis. Thats when my life that very second crashed all around me. I never felt so vulnerable in my life. I will never be the same. She didnt tell me he had a fatel disease but what she was telling me in my mind was that my baby was going to live the rest of his young life in pain,possibly disfigured and on horrible meds. I went insane. How do you tell your baby he has a disease? I went to my family doc and along with my news she refused to give him a referral to a rheumatologist b/c I have a HMO and in the end it would cost her money to send him there. I asked her how she could tell me my son has a disease that requires a specialists attention and then refuse to allow us to move forward. She said she was capable of treating him and I asked her how many JRA cases she has treated in the past and she looked shocked and said around five. After telling her where to go I contacted all the boards I possibly could and filed complaints against her. She sent me a christmas card. What a gal! To make a long story short I found a new doc and he was happy to give us the referral. I was finaly on the right road to get my son help (two months later,god I hate having a hmo)at childrens hospital in Detroit. I was told the big plan to "help" my son was this drug called methotrexate. I went home and looked in my bible (parents guide to rheumatory arthritis GREAT BOOK!) and I looked up this drug and once again the world around me came crashing down. I went insane once again and spent every waking moment on line researching alternitives.I found a all natural anti inflammatory, pain reliever called CURAMIN its made by Terry Naturally. I believe the web site is curamin.com. You can also look it up on youtube. IT WORKS!!!! My son does not even take motrin b/c the curamin takes care of the inflammation and the pain. PLEASE,PLEASE if you are on steroids or methotrexate give this a shot. NO SIDE EFFECTS AND NO DRUG INTERACTIONS! Im going to say it took about a month for this all natural drug to get in his system to where he felt 100% better. I hope my sons story will help. Thanks, Sandy
Hey great to hear! I know quite a few people who have used the curamin with fantastic results. Also most of the inflamation can be reduced to close to nothing by totally eliminating acidic foods, drinks and medications. Anything citrus, orange, lemon, lime, grapefruit, tomato's (ketchup, sauces etc.) coffee, sodas (coke etc.) coffee, the phosphate solution in packaged meats and aspirin etc. I guarantee that if you do this, eliminate all acids, and take the curamin, and add a good calcium magnesium supplement, (not citrate) you will have enormous results, reduction of inflamation and not have to worry about any damage to the joints. And most of all you will not have to take a harmful drug. The body does not have a problem because it lacks the drug, the body will have a problem if something is natually lacking or being adversely effected by an irritant i.e. the acid. Good luck. It works!
Brad,
Respectfully, I would like to say - I am so glad to hear that this combination is working for you. I feel I will speak for a lot of people out there by saying this, and I just ask that you remember that this route will not work for everyone out there. I have done exactly this, cut anything and everything out of my diet, I was once only eating boiled potato skins (an ayurvedic remedy). There are many people that have a disease that simply can not be solved by any elimination diet, or an herb. Oh how I wish it could be, and I hope that you never reach a point where you are forced to make that switch to the medications. It is not an easy decision for any of us. Our diseases become far more harmful than any "harmful drug" you speak of. Many of the people on here can not simply "not have to worry about any damage to joints".
I felt I needed to stick up for some of us creakies on the serious medications, and ask that you not judge us and make light of those emotionally difficult decisions we make - every time we take them. After all, at the end of the day, we're all just trying to make it through the day. I hope you continue to feel great.
-Britt
Hi Sandy,
Not too much I can add to the above except to echo their advice not to shun medications altogether. Most of us here use a combination of "traditional" medicine and carefully researched holistic therapies such as herbs (check for drug interactions!), homeopathics, acupuncture, energy healing practices, meditation, yoga, supplements, etc.
"Silent" damage can still take place even when the patient is feeling relatively well. True remission does happen, but it must be confirmed with blood tests and maintained with continued (though probably reduced) medication.
Your son is young and resilient. Find a rheumie who will treat his disease aggressively to prevent joint damage before it happens!
I've had RA since age 5 and trust me, this diagnosis does not mean he isn't going to live a full, happy life. It might not be quite the life you envisioned for him, but it will be uniquely his, and a good life.
The best thing you can do for him is to put fear aside and educate yourself about this disease. The more frightened you are, the more your fear will transmit to him.
*Never* tell him he can't do something. Trust me, if he wants to do or try an activity, let him try. It will be hard to stand back and let him learn on his own what he can and can't do. Give him as much responsibility for his own health and well-being as possible - make him a full partner in his treatment. He will be 18 soon and he needs to know that he does have some control over what's happening with his body.
Also, don't beat yourself up. This isn't your fault, it isn't anyone's fault. My parents continually apologized to me for giving me "bad genes", but you know what...I wouldn't change anything about the life I've lived.
Welcome to these boards - it's a great place!
Carolan
Hi Sandy,
Not too much I can add to the above except to echo their advice not to shun medications altogether. Most of us here use a combination of "traditional" medicine and carefully researched holistic therapies such as herbs (check for drug interactions!), homeopathics, acupuncture, energy healing practices, meditation, yoga, supplements, etc.
"Silent" damage can still take place even when the patient is feeling relatively well. True remission does happen, but it must be confirmed with blood tests and maintained with continued (though probably reduced) medication.
Your son is young and resilient. Find a rheumie who will treat his disease aggressively to prevent joint damage before it happens!
I've had RA since age 5 and trust me, this diagnosis does not mean he isn't going to live a full, happy life. It might not be quite the life you envisioned for him, but it will be uniquely his, and a good life.
The best thing you can do for him is to put fear aside and educate yourself about this disease. The more frightened you are, the more your fear will transmit to him.
*Never* tell him he can't do something. Trust me, if he wants to do or try an activity, let him try. It will be hard to stand back and let him learn on his own what he can and can't do. Give him as much responsibility for his own health and well-being as possible - make him a full partner in his treatment. He will be 18 soon and he needs to know that he does have some control over what's happening with his body.
Also, don't beat yourself up. This isn't your fault, it isn't anyone's fault. My parents continually apologized to me for giving me "bad genes", but you know what...I wouldn't change anything about the life I've lived.
Welcome to these boards - it's a great place!
Carolan
FWIW:
http://www.quackwatch.org/02ConsumerProtection/enzymaticfdac.html
(Same guy who is now selling Curamin)
http://en.wikipedia.org/wiki/Curcumin#Potential_risks_and_side-effects
http://lpi.oregonstate.edu/infocenter/phytochemicals/curcumin/
I really don't like stepping on anyone's hopes, but if there really was a one-size-fits-all miracle cure out there, the drug companies would be fighting tooth and nail to corner the market on it.
It looks like it has some possible anti-inflammatory properties, so if it helps some people to feel better, that's terrific! But it's like anything else - what works for some people won't work for everyone. And anyone who "guarantees" an unproven therapy is going to work is just selling snake oil.
Sorry, Brad, I'm sure you're a nice person who's trying to help people. But guess what, the folks on this board have tried everything, including the dietary changes you espouse, with no detectable difference in our disease symptoms. Maybe curcumin it does help some. But telling people to shun chemotherapy in favor of an unproven herb is, IMO, irresponsible.
please note: just because there is no PRESENT or Noticeable inflammation doesn't mean damage isn't being done!! This has been engraved into my head by many doctors and reconfirmed by a holistic Chiropractor this evening....
Carolan, I was only this charitable for fear of being booted from creakjoints! If I had a punching bag, some serious damage would have been done to it that day.
Tess is right, you can't see your insides, and it's naive to diagnose strictly from the outside, and it's denial taking the "if I can't see it, it doesn't exist approach". We have progressed with modern technology, we should use it.
It just irks me when people try to make money off vulnerable people. For them, there's a special place in he-
Ahem.
Would that all sufferers of chronic conditions were as armed with facts as we are.
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