Very Positive Rheum appoint yesterday.....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 7/12/2007 4:57 AM (GMT -7)   

Hi all, so like I said in a few of my past posts that I had to stop the plaq and when I informed my rheum he seemed baffled by the side effects. I was NOT happy with his reaction to me.
Yesterday I went to see him and he was way more receptive than he was on the phone.

He agreed the plaq was not for me. He knows I am big into natural approaches to health and he suggested I go natural. I was shocked!!! Most Docs would not even suggest anything natural since they are pretty much conditioned by drug co's.

The suggestions he made I knew about already (I have a good background in natural healers) but he mentioned something called SEMe (which is all natural) I've not googled it yet, but he said about 10 yrs ago the Rheum journals were touting this as a good aid in Lupus.


My rheum will continue to monitor me and suggested if I find any more good info, to please email him.

I was pleasantly surprised by his attitude. I left there feeling like he was really listening to me.

 

So question" have any of you heard of SEMe and or have you used it?

Does anyone here use MSM or any other natural products?

I used MSM and started on L-Glutamine which helps with lupus aches and pains. It's also wonderful for IBS. No side effects at all. The 2 weeks I've been on it I've felt pretty darn good.

 

Any input would be great

 

Jen

Post Edited (peacesoul) : 7/12/2007 6:35:25 AM (GMT-6)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/12/2007 7:14 AM (GMT -7)   
Jen, I'm so glad your rheumy was open minded and respectful of your ideas and your wishes. I've never tried any of the products you've mentioned. The one I hear the most about is DHEA. There have been some reports that it has helped some people with lupus. I'm glad you are doing well so far and hope that the new products help even more. I'll look forward to hearing how this approach works for you, so keep us posted on how things are going.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 7/12/2007 7:29 AM (GMT -7)   
hippimom2 said...
Jen, I'm so glad your rheumy was open minded and respectful of your ideas and your wishes. I've never tried any of the products you've mentioned. The one I hear the most about is DHEA. There have been some reports that it has helped some people with lupus. I'm glad you are doing well so far and hope that the new products help even more. I'll look forward to hearing how this approach works for you, so keep us posted on how things are going.

Take care

Heya Hippi.....I was going to try DHEA, but have not gotten enough feedback from this. I'll look into some more.
 
I shall keep u posted for sure. Any news I can find to help will be posted here first :-)
 
Jen

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 7/12/2007 9:54 AM (GMT -7)   
Ok everyone I found some interesting info on this SAMe.
Now if this was in a Rheum medical jounral, why would more rheum's not mention it to their patients?! hmmmmm

Ok so here is the info

www.ahdintl.com/Products_SAMe.html
SAMe and arthritis (joints)

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/12/2007 1:14 PM (GMT -7)   
Here's another link that has some possible negative side effects. I remember when SAMe came out, it was real big, then you heard nothing. It says the mechanism of action is unknown. It seems to act like a tricyclic antidepressant, so it might be hard to tell if it is actually helping or just making you feel better--and that may be enough. Didn't see a mention of lupus, but it is a treatment for hypochondriasis and fibro of all things.
http://www.mindbodyconsult.com/about/prot_same.html

I hope it works for you. I know the plaquenil was a real struggle. DHEA is something I'm curious about as I have endo problems, I hear mixed reviews on the thyroid site, some great, some that it does nothing, one or two it made real sick.

It sounds like both are real strong, so be careful. I'm really happy that the new rheumie doesn't seem like a total jerk, it takes so long to switch.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 7/13/2007 4:26 AM (GMT -7)   
Hi Marji....I will have to do a lot more research on SAMe before I even consider taking it. But the info you posted here was helpful, thanks much :-)

I've been taking L-Glutamine for 2 weeks and I feel much better. L Glutamine is a natural product the body already produces and which has no side effects. I discovered it though my bodybuilding site b/c fitness folks use it. Looking into that, I saw that it's given to Cancer, Aids and other patients with illness (like lupus).
Knock on wood, so far it's making me feel great. I'm someone that doesn't put much into my body, so I'm cautious of everything.
Prob why the plaq kicked me off my feet. My body just cannot tolerate any chemical change.
As I find more info on SAMe, I will post.

Thanks :-)

Jen

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/13/2007 8:12 PM (GMT -7)   
Thanks for the tip on the l-glutamine, Jen. I know I'm deficient in some things and often want so bad to try these things but am afraid. DHEA is one I'm really looking at, but the over the counter formulations are way too strong, 50mg, according to the people who have it prescribed, you should be taking about half that. I wish I could find a good alternative doc to see if he couldn't give me more help. Sounds like your liver is very very picky, like mine, and the hardest part is getting a low enough dose, like a baby dose.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 7/15/2007 4:13 PM (GMT -7)   
cured4real? said...
Thanks for the tip on the l-glutamine, Jen. I know I'm deficient in some things and often want so bad to try these things but am afraid. DHEA is one I'm really looking at, but the over the counter formulations are way too strong, 50mg, according to the people who have it prescribed, you should be taking about half that. I wish I could find a good alternative doc to see if he couldn't give me more help. Sounds like your liver is very very picky, like mine, and the hardest part is getting a low enough dose, like a baby dose.

You're like me, I worry about taking anything new. Since L Glutamine is very safe w/ no side effects (since our body produces it anyway). Many of the fitness /bodybuilders I know gave me good reviews, so thought I would try it. So far so good. My joints feel better. I can give a better review after using it a little while longer.
 
Try it and let me know.
I get my Glutamine at Costco (much less expensive there).
 
Jen
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:47 AM (GMT -7)
There are a total of 2,733,991 posts in 301,165 threads.
View Active Threads


Who's Online
This forum has 151299 registered members. Please welcome our newest member, ABBear.
213 Guest(s), 0 Registered Member(s) are currently online.  Details



Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer