Hello, I do have a question

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cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 7/5/2005 1:18 PM (GMT -7)   
I've followed this board for 9 months, since I've been diagnosed with RA. I'm 44, male, and very active. I ride several thousand miles of road and mtn. biking each year. Currently I'm taking MTX, 25mg injection and Enbrel. I would like to be off both, but the one time I missed Sunday nite's injections by 2 days, I begun to hurt pretty bad. I don't know that I have felt 100% in over a year, but I feel much better than when I was at the bottom.

I've gone through the typical emotional turmoil, I'm still figuring out how to cope. Right now I'm working on NOT using RA as an excuse for poor physical performance. It may very well be the cause, but since I am doing all I can about it, it does no good to blame RA. Maybe I'm just being stupid, but I don't know how else to get stronger, and I know excuses are not the way.

But, is there more I can do? A friend has pointed me at this suppliment called Ambrotose, created by a company called Mannatech (or something like that). All I can find regarding its affectiveness in treating RA and other AI diseases seems to be company propaganda, and perhaps that is telling on its own.

In my brief research, many open discussions of Ambrotose were interrupted by some guy named Thorp, apparently prompting his own version of the stuff. Finally a link pointed me to an FDA blurb about removing his product from the market.
This, of course, make me skeptical of Ambrotose as well.

BTW, I really wish all of you well. This has been very, very hard for me, I've always been in control and top physical condition ... not any more. My background and story is perhaps different than others, but those differences do not make my circumstances any harder or easier, and I have to remind myself of that every day.

thanks ... Craig

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 7/5/2005 7:01 PM (GMT -7)   
Craig, welcome to the forum. What a tough thing. I too try very hard not to use PA (psoriatic arthritis) as an excuse but sometimes it is the truth. Unfortunately this is a lifetime illness. There are stories of spontaneous remissions out there but most people develope a "chemical remission". In other words you are symptom free because of the meds you are on not because the disease is gone. I tried to convince myself that I was in a remission years ago and tried to go off all my meds, the PA came back even worse then before. It has taken me about 6 years and a change of rhuemy to get to the "chemical remission" that I am in right now.
You are not in denial of the disease that I can read but you seem to hope that it will not run your life. Unfortunately it will. Maybe not at the forefront but in the background it will always be there. Sorry to sound so negative but it is the truth. Don't use the RA as an excuse or crutch but realize that you do have to take it into account in planning your life. So you take meds, who really should care? If you are able to function take it!!!!!!!!!! Meds are great to someone with a chronic illness. If you want to try and switch up meds to something a little less potent talk to your rhuemy about it. Keep in mind that messing with them can cause a nasty flare and you may not get back to where you are right now. Trust me on this cause I've been there, done that. Some people find that once the swelling is under control they can taper off some of the more potent drugs but I would advise against doing anything without consulting your MD.
You will get stronger by simply acknowledging that you have a debilliting illness and giving yourself permission to grieve over the changes it has meant in your life. It is not easy. It took me many years to accept that this now runs my life not the other way around. I life for the good days and roll with the bad. Right now there are more good then bad but it hasn't been that long since it was the other way around. Hang in there.
As to the drug you mentioned, I've never heard of it. Talk to your MD about it. They may advise against it but get the reasoning behind it. There are many alternative therapies out there that a lot of our members have tried. Some work and others don't. It depends on your system. Try to find out if it is FDA approved. Trust their website. If they say it has been pulled, you may want to think twice about using it. Ask around. Hopefully someone comes along who has heard of it that can give you info on it.
Some personal info here, I am 30, married with 2 boys (9 and 7). I was Dx with PA 8 years ago while pregnant with my second. It has taken 8 years but finally have very little pain. I am on plaquinel and Enbrel right now but have tried Arava, mobicox, ketoprofen, and MTX. I was actually about 2 weeks away from trying remicade but the symptoms started getting better so we opted to stay on the enbrel for a while longer. Here I am now. Glad I waited it out.
Sorry for the long note. Sometimes I am quite passionate about what I write and I start rambling.
Keep in touch. We look forward to getting to know you better.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 7/6/2005 7:55 PM (GMT -7)   
Hi and Welcome to the forum,

Glade you found,sorry that you have RA.I to have RA and OA,I also have crohns that also causes joint pain.I take Methotrexate,and Azulfidine500 mg three times a day,and I take 100u of methotrexate I'am also on Humira40 mg every two weeks.

My Father has RA and he takes the same amount of metho as you do.I know that it get's frustraiting but it is some thing that we will have to live with and so the best that we can do is deal with it.

Oreo had some realy good advice when you start messing with meds you really can have a bad flare.But if you meds are not doing what they need to do then by all means talk to your RA doc.

Curley........

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/8/2005 9:06 AM (GMT -7)   
Hello and welcome.
 
Oreo is right when she says, "Don't use the RA as an excuse or crutch but realize that you do have to take it into account in planning your life." RA is a funny thing and can knock you down when you least expect it. If the meds are helping, then use them so you don't have a reason to stop your activities.  RA doesn't have to be the reason you stop the activities you do, but you do need to keep it in the back of your mind when planning them.
 
I've had arthritis since I was little and it has gone through many different phases throughout my life (I'm  only 35, but was first dx when I was 11) and all I can say is I hope you continue to get relief from the meds and are able to not let the RA slow you down!
 
It is a tough thing to deal with mentally when you feel you are not 100% in control of yourself and are not used to having to slow down. I hope you continue to post here and will find the friends who lend great ears here as I have.
 
**
 


GeorgeB
New Member


Date Joined Jul 2005
Total Posts : 6
   Posted 7/8/2005 11:17 AM (GMT -7)   
Hi, I wonder if anyone in here is aware of the possibility that there may be a rather simple answer to the complete eradication or remission of our RA disease? I currently am on a protocol which was carefully explained to me before I agreed to do it. I am almost though the roughest part, because there is a reaction to the medicine which amplifies the RA for a brief time. Then all symtoms just go away. This may not be the final answer, but it sure beats some of the treatments we have available. Several thousands of people have already been through this and today are living normal RA free lives. I am posting my progress here in the main thread.
All the Best to Everyone
George Ballard

BamBam
New Member


Date Joined Jun 2005
Total Posts : 18
   Posted 7/8/2005 8:52 PM (GMT -7)   
Hello George,
      I may have missed a post somewhere but what exactly is this "protocol" you're on if you don't mind sharing..my curiosity is getting the best of me.
 
Donna


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/10/2005 8:31 AM (GMT -7)   

yes, you've been vauge about it all.

**


 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 7/14/2005 6:57 AM (GMT -7)   
Thanks for the replys, I really do appreciate the information and encouragement!

My rheumatologist has said that mixing other supplements with my current drugs can have unknown results, I have the feeling it is a standard answer.
While I have no desire for the RA to come back even stronger, I am concerned about the long term affects of Enbrel and MTX. Maybe I need an episode to convince me that there are worse things than the drugs nono

I'm not ready to let the RA have control over my life or affect my schedule, other than a couple of shots on Sunday evening. That time may come, but right now I can't see how that would help me.

Has anyone tried a significant diet change? Any book recommendations?

Thanks again ... Craig

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/14/2005 2:24 PM (GMT -7)   
Craig,
hi again. you remind me of Lance Armstrong! a great male athlete living through a tough disease...yet prevaling! be proud of that.
RA can control you.....or YOU can control RA! remember that. your physicality which is in fine tune will help you deal with RA in the long run. being in shape will make this disease easier. you are concerned w the long term effects of enbrel and mtx....what about the long term effects of RA? i put off seeking help a long time. now, unfortunately it has effected my heart, lungs, spleen and all joints plus many blood dyscrasias.
like i tell my diabetic patients...your meds are your survival. perhaps in a few years your body will remiss so that you will no longer need any meds!!!! that would be wonderful. i feel you are on the right path. you know your body. follow your heart Craig & you will make all of the right decisions!
take good good care
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/14/2005 2:26 PM (GMT -7)   
oh Craig,
have you experimented with fish oils yet at all?

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/16/2005 1:51 PM (GMT -7)   

Craig, I've done a lot of research on various "arthritis" diets - they all vary and many contradict each other. I think it depends on your body and what you find works best. You sound very active and healthy, my guess is your food intake is pretty healthy as it is, and that is the best you can do for yourself, or any body - eat as many good things as you can, raw veggies, and lots of H2O along with not drinking, eating too many bad fats and so forth.

When I was sick a few months ago, my doctor gave me something to read/follow. I don't know if was a medical book or a homeopathic book. I can't find the printout, but if I do, I will let you know what it said. Someone posted a response on here somewhere with the same stuff listed that my doctor gave me - something about avoiding citrus, paprika, and a few other things that supposedly can aggrivate RA. I do not know.

As for needing an episode to remind you of how much the meds are working, I'm going through that now.  I've been off Remicade (not by choice) for a while now and I can contest YES we forget how bad the pain is, I'm here to tell you DON'T TRY TO REMEMBER, it is no fun going back the "the way you were" to get you back on board with the right medication.  All you do is get set back and have to start all over again.
 
Hope you are well. Have a great weekend.
**
 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 7/19/2005 1:03 PM (GMT -7)   
Thanks you guys, unfortunately, I'm learning that the drugs are the only consistent solution to the problem.

Still, maybe there is something out there none of us has stumbled on ... yet. I'll keep my eyes and ears open.

... Craig

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 7/21/2005 2:46 AM (GMT -7)   
Craig, you are so right. Unfortunatly with any chronic/immune type illness there often is no "cure" only things that we can do to prevent the disease from getting worse. I wish there was some wonder diet/drug that I could take to make the PA go away forever. I am a realist though. I realize that there is nothing out there that I can do that couldn't have some sort of "potential" to do more harm then go. The meds I am on (enbrel, plaquenil) could have long term devastating effects on my body but you know what?, the long term effects of taking nothing are far worse. I am willing to take that risk. I work in a long-term care facility where I have looked after patients who exibit those "lon-term" effects of not taking anything. I personally do not want to live my final years like that. But it is a personal choice.
The potential for long-term effects to "natural" substances is just as great. Your body has to metabolize everything that goes in whether "natural" or "man made". Your organs still have to filter out all the good and bad of the stuff we put into our bodies. Whether it is natural or not is immaterial to our bodies. I have met people who have ended up with toxic side effects from taking too many or the wrong kind of "herbal" supplements. They can be just as harmful if not ordered/prescibed by someone who is knowledgable of the potential interactions of all the herbs.
You know your body and how you want your life to be. I did try the alternate/natural route of diet and such. I didn't want to be dependant on meds when I was only 25. I went through a year of bad pain and inflammation for trying to cut the meds out. Now I am in a "chemical" remission and don't plan on trying to alter the meds at all. I learned my lesson the first time. If I feel good, it is the meds doing it not the disease going away. I say bring it on whatever is causing it.!!!!!! :)
Hope you find the peace you need to accept this wrench in your life and keep on living life to the fullest. You are in my thoughts and prayers.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 

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