CURCUMIN Testimonies Wanted

Hey all,

I've been absent from the site for a few months. Just super busy with work. I try to check in from time to time, but don't have much time to post anything new.

But, I want to ask for all of those who have tried, or are continuing to use curcumin:

How much are you taking? How is it working for you? Did you have any reactions/ side effects, and for how long? Did it help, and how? If not, what else were you doing along with the curcumin? Did you taper up over a long period or a short period of time? If you stopped, how long did you take it for? Any other observations?

I'm not looking for anything specific, and good, bad, or indifferent testimonies are equally welcome. Just be descriptive.

NOTE: Please note whether your diagnosis has been confirmed by a positive biopsy or not. I am not limiting testimonies to any group, but I would like to be able to make categories.

This is just for my own curiosity, but it could be helpful overall. If there's any chance of getting a trial going with curcumin, we would need to gather these kinds of testimonies anyway.

So, let me know!

Here's my story (along with a bunch of other info):

http://www.inspire.com/groups/stop-sarcoidosis/discussion/sarc-and-curcumin -a-possible-treatment/

Here's my review of curcumin:

http://www.inspire.com/groups/stop-sarcoidosis/discussion/sarc-and-curcumin -a-possible-treatment-a-review/

Edited May 26, 2011 at 12:40 pm

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61 replies. Join the discussion

I have been taking 1000 mg of curcumin as a baseline dose to avert my sarcoidosis from retriggering, I have been in remission since 2004 after 12 months of high dose prednisone. I have had zero-0%- bad reactions to curcumin intake. No untoward side effects. Curcumin started helping my general low grade pain within a week, my mild brain fog greatly lessened, and I was able to sleep better and think more clearly. I believe this is due to the anti-inflammatory effect of curcumin. I plan to stay on 1 gram of curcumin for life. If my sarcoid does retrigger, I will start on high dose curcumin, as I will not take predisone, unless the MD told me it was prednisone or death. This has been my experience with low dose prednisone bought at pharmacies and Kroger's food stores. Nothing expensive or fancy-just regular curcumin with 95% curcuminoid and 2 fish oil tabs a day.

This is my opinion and experience, and I have done research on this multi-faceted food supplement. It is definitely multi-purpose.
I recommend it, but do not take it if you are on prednisone, other anti-immune drugs, or blood thinners. There are side effects. I advise people to educate themselves on any vitamin, supplement or mineral they put into their mouth. I do not recommend people take this if they think they have curcumin, but only if they have a definite MD diagnosis of sarcoidosis based on a positive biopsy.
Thanks, Gary

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Thanks Neil and Gary,
I'll be honest, I tried curcumin while my sarc has been very strong, to no real avail. I took it for over 3 months, one thing I noticed, my energy levels increased, but my physical symptoms didn't. Keep in mind I had a rather intrusive series of biopsies that caused a flare up. I'm on pred now, but as my dose is tapered off, I'm considering curcumin for management after that.
Judging by the research presented by Neil and others, I would consider curcumin a potentially natural way of managing the disease after treatment on steroids for more acute cases.
Just my 2 cents,
Allinmyhead.

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@Neil2
You must have been reading my mind. I thought about this the other day, but did not have the bases to ask for "Testimonies" as you have used it and studied it more. Neil, I think it would be helpful if you requested response from CONFIRMED Sarcoidosis patients who have used curcumin. Biopsy is the only way to truly confirm the disease from what I've learned. Otherwise, it is not the "science" of medicine, but the "practice" that is used as a bases of diagnois'. I believe whole-heartedly that this must be seperated for a trial of any sort to consider curcumin as an possible/effective treatment for Sarcoidosis.

With that said, I am confirmed via biopsy with Sarcoidosis. When my work up on all organs is complete, I do plan on working with my doctors to integrate curcumin into my health care and medication/supplement options. And, I will share in your request for "Testimonies" then.

Would you not agree, that if one has self-diagnosed (as so many of us has at one time or another), or not been diagnoised via biopsy that a confirmed case of Sarcoidosis is not a conclusive bases for "testimonies" regarding the benefits or lack of regarding curcumin?

Thanks for your efforts, it will be interesting to move foreward and hopefully find positive effective treatment for Sarcoidosis.

Best,
Kim

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Hi Neil2,

If we accept Kim's philosophy then I can't give my report, as I have not been biopsied.

Cheers

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Hi Neil2,
I was biopsied - before that happened, no one speculated on what it was, I couldn't self diagnose, because I didn't have a clue!

Anyway, I am starting on curcumin and will keep everyone posted. I think it is a good idea, and I'm not one who doesn't want to take prednisone. Prednisone at low doses actually works really, really well for me. I'll check back in, a couple of weeks should do it.
Thanks to Gary_RN and this site for good ideas.
CA

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Hi Neil2:

I was actually going to reach out to you and tell you about some weird reactions I was having to the curcumin. I purchased the Nutrivene Gold Curcumin and started taking 1000mg a day. About 5 days after taking it I developed what I would call minor bouts of mild shortness of breath and heart palpitations. It wasn't at a level that I felt I needed to see a doctor, but the only thing I did during that time period was start the curcumin. I stopped the curcumin and these symptoms dissipated after 3 days.

So I don't know what came over me, but the only thing I could come up with was the curcumin.

-Grant

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@ozealan
@Neil2
@Gary_RN

Just to clarify, the above philosophy of CONFIRMED Sarcoidosis via biopsy is not just mine. Please read Gary_RN above; the first
"testamony".

If Neil2 is requesting broader "Testimonies", for instance how curcumin may or may not work on inflamation dis-eases in general, then I would expect to see this post on other sites as well. But, for this particular blog, correct me if I'm wrong please, are you not requesting testamony use of curcumin with respect to the specific dis-ease of Confirmed cases of Sarcoidosis?

Best,
Kim

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I am not restricting the testimonies to only those with confirmed, biopsied sarc for the following reasons:

First, while a biopsy is the only way to confirm a Dx, it can also be risky, and a negative result doesn't mean you don't have sarc. I just means your biopsy didn't have granulomas in it. With biopsies, it's about a 50-50 chance you'll even get a good sample. Otherwise, sarc is generally Dx-ed by elimination: you rule out everything else and you're left with sarc.

I never had a biopsy for two reasons: my possible sarc points were in my fatty liver (confirmed with ultrasound), and my heart, both of which are risky biopsies. Plus, I have several key indicators that I might have it, the most important being that I have a Mobitz, type II "Wenckebach" A/V node block, with no corresponding heart disease, obesity, alcohol, smoking or other related issues.

So, please give me all your testimonies, regardless of biopsy status. But, I'd like to know what that status is, so I can divide the results into groups.

Thanks!

Neil

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Sorry, I forgot to add to my comments above that my sarcoidosis is confirmed via biopsy after a mediasteinoscopy in May of 2010. And you are correct about the "ruling out" theory. My doctors pretty much knew I had sarc before they did the biopsy. But the biopsy was to rule out all the really bad cancer stuff, possible infections, etc. The biopsy just confirmed their initial diagnosis of sarcoidosis.

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@Neil
Just wanted to share with you that a liver biopsy is no big deal at all. They did mine in a matter of seconds, and they took samples from a couple different areas of the liver because one fine needle biopsy does not allow for enough for a pathologist to see it clearly because of the other materials that are within the liver aka fat, or fiber. The report is extremely comprehensive from the liver biopsy if you'd like to see it let me know and I'll scan it to you. I only had a local, too. I agree that avoiding invasive proceedures when possible is best because they all do come with "some" risk. But, the benefit of my knowing that peice of the sarc puzzle is getting me closer to the correct dianoises of refractory, and not acute sarcoidosis for which my treatment and lifestyle plan will be much different. The skin biopsy they took was very tiny, and yet accurately diagnoised.

The heart is another story, and I certainly do not have any experience to speak of in that area except go to a cardiologist that specializes in sarcoidosis. You're right there by Dr. Sharma, perhaps he would know of a good cardiologist? Otherwise, did you know that the issue you have discribed with your heart is also consistant with Lymes Disease? Your inflamation markers CRP and others are elevated, too. There are I think 4 stages of Lymes Disease, I'm thinking you already checked this out. But, thought I'd let you know after discusing your case with a doc friend of mine. He stated he would not treat with curcumin...mostly because of the heart issue that is associated with Lymes Disease.

I know you've done a lot of research, but it is very fresh on my mind since I recently traveled to the Country of Panama where there is a tick infestation.

Best,
Kim

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@Kim and Neil,
There are so many things which mimic Sarcoidosis, which I am sure we are all aware, : Lymphoma and other very diseases, Lyme's Disease, Valley Fever, and a host of auto-immune diseases. My own opinion is this: it takes a well educated in Sarc. MD/Specialist to diagnose the Sarc, beast. If MD's have trouble with this disease, we have about a zero chance of diagnosing ourselves. I have been in the medical profession since 1974. I worked a couple of years in the lab as a lab tech and pathology assistant. I know what the pathologists can do. Those guys are the greatest. If a disease is present, they can find it. My own personal belief is that a biopsy is the gold standard for a diagnosis. To treat ourselves or the let an MD treat us for sarc based solely on lab tests and some symptoms is asking for trouble. We could have another disease which is not being treated because we think we have sarc, and are treating just for sarc. All I am asking is that we cover all of our bases. To say that curcumin is working because our labs keep getting better, therefore our sarc is being treated is a fallacy if we do not have a definitive diagnosis for sarc. This is not the scientific method, and NIH and Mayo Clinic would frown upon such efforts. The bottom line is that we can't say we our sarcoidosis is being treated by curcumin if we do not know for sure we have sarcoidosis in the first place. These are just my two cents I am throwing into the hat. Thanks, Gary

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I took it for 2 weeks. I had to stop so I can rule out my eye issues that popped up. My eyes would burn after taking it, which was no big deal. Then one of my eyes started getting very red and the redness went into the iris of the eye. I stopped to to see if this had anything to do with ccrmn. Plus, sometimes I was taking it, I was opening up the capsule and halfing it into another capsule. I have to make sure that I didnt have a small amount on my fingers and then later scratch my eye, introducing it into my eye. So im just stopping for a couple of weeks to make sure the eye thing clears up. Plus, I fired my PCP for not listening, not knowing about things he should and repeating tests that I have already had and wasting my time and money. Im going back to my old doctor. He is also a immunologist, which I didnt even know. I wanted to be off of everything when I saw him and run it by him. One thing I did notice, and I just realized this yesterday. My morning headaches completely disappeared when I was on the ccrmn. I sinuses are inflammed from sarc that give me morning headaches. What made me realize that the ccrmn helped my headaches is that they are back now (for the last 2 days). I stopped ccrmn 4 days ago. Other than the eye issue which im not sure ccrmn caused, I do believe it can truly help, and this is coming from a genuine skeptic.

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DBT,
I do believe curcumin works for headache related issues, as it is anti-inflammatory and takes down swelling in the brain. Curcumin also helps me sleep better and have less brain fog, I do not know if curcumin gave your eye a problem. It is possible.
It is a good idea to go to a Dr. who understands more about sarc. than most docs. Hang in there.
Gary

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Hi Neil2, good to see you posting again! I printed off your post on Curcumin and sent it to my doctor, who specializes in integrative medicine. Now that I am off the Celebrex, she has okayed me starting a trial with curcumin. I am already on a high dose of fish oil and it has really helped my arthritis, but I still have the fatigue, general muscle aches, etc. I just started the curcumin this week, but already I have noticed less muscle aches. I see my rheumatologist on June 16th so I'm hoping to have made good progress on lowering the inflammation in my body by then.

I have a question. I know you have said often that it is necessary to take curcumin with fat in order to absorb it. I bought some 900 mg capsules of curcumin from Walgreens, but it is not mixed with oil or anything. If I take a couple of fish oil capsules at the same time as the curcumin, will that work?

Thanks for sharing all of your research with us. I look forward to having some positive results to report soon.

Shelley

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I'd take a couple fish oil caps PER curcumin cap. In my opinion though, that's ends up being just as expensive as the presolubilized stuff. Let us know how curcumin works for you!

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I am taking Longvida Curcumin and have had no changes in my condition.

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I take 1 fish oil cap per curcumin cap.That has worked well for me. This or flax seed oil is needed to make the curcumin soluable so your body can get the benefit from it. Some have fairly quick results with curcumin and with others a little longer.
Thanks, Gary

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Hi,

How long have you been taking curcumin & what dosage are you taking. Are you on Prednisone or blood thinners at this time.

Cheers

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Neil2,

here's my testimonial,

I'm currently taking about 4 grams a day. 2 at around 10am and 2 at around 10pm. I'm to the point where I can even take them without food, although initially I took them with food to avoid stomach upset and GI issues like diarrhea. Initially I was taking Terry Naturaly CuraMed with one 1gm fish oil capsule, and had good results. After that month, I had to switch to another brand, biomor curcumin. I don't like it as much. I am going back to the previous brand when I am done taking this, end of June. The difference in this brand is it doesn't last as long, my relief from pain has not been as complete, and almost no difference in my energy. I feel like I need a nap. Also, I don't notice it helping with cognitive function at all. I also had a big exacerbation in my depression. I have always struggled with this, and without changing any of those meds, I'm not sure I can point to curcumin. Depression is such a big issue in my life, at this point it's hard to even say when it looms it's ugly head what causes it. I had a migraine that didn't respond to any medication or treatment for several months as well, and despite that, I kept on with the curcumin, because I didn't feel like it was hurting anything.

On the biopsy issue, I wanted to say, I had a successful bronchoscopy, and I can fax results to you if you wish, HIPAA be damned! It's my understanding about bronchoscopies anyway, that even if I had sarc, I could have been really unlucky and had several *bad* or negative results if they were unable to get the right cells on the day I had my procedure. Getting a biopsy is not like a doctor is going into a grocery store, and finding the right product and picking it up off of the shelf. It's more complicated than that. Also, every person is different. Even if you have a local, and take the respirator issues off of the table, for Neil's liver, being fatty, it may have been very easy for the doctor to hit an artery in his liver. Or, for the liver to fail altogether, I guess. With all the advances in transports, I would still do all I could to protect my liver.

After all, I think they call it a liver because you need it to live! Sorry, I just had to say that. Too much seriousness on a Saturday morning for me... :)

I am going to increase my curcumin amount to 6 grams a day here in the summer, I know the whole Vit D, curcumin thing is unrelated, the sun seems to suck the life out of me, so maybe the curcumin will put some back! I am going to start this weekend. Since I will be close to the house, I can deal with the GI issues as they arise.

Also, I will be switching to borage oil when I run out of fish oil capsules. I don't think that the Vit D in the fish oil is bothering me, since I don't eat anything else with Vit D, but I don't like to even take those.

hope this helps!
heather

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Longvida is a proprietary formula and is optimized for maximum targeting of curcumin into blood and tissues and supposedly does not require any supplement to maximize its effectiveness. It's pretty darn pricey, comparatively speaking. This is my first month trying it.

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