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taape 05-15-2007 09:20 PM

Limbrel Anyone?
 
I'm asking again if anyone is taking Limbrel and if so are you having any decrease in pain and symptoms? I've been on 250 mg/day for a month and can't notice a decrease in pain so I've asked for the upper dose of 500 mg/day. We'll see. I'm interested if anyone else has tried or is using this medication.

taape 05-27-2007 09:48 PM

Re: Limbrel Anyone?
 
I just received the higher dose to see if it works. No one else is taking this for arthritis?

Misty800 05-28-2007 05:28 PM

Re: Limbrel Anyone?
 
Taape,

I take Limbrel 250 mg. twice a day for inflammation all over my body. It has been 10 months since I started taking Limbrel and it has given me a new lease on life. This did not happen over night, takes a while.

On 250 mg. twice a day you should notice a little improvement in a couple weeks and then after a month you will know for sure about the improvement. After 3 months you should be doing great. Improvement is over time. It is not an instant stop pain type med. The more it builds up in the body the better you will feel.

I was in agony and thought I would need a second cortisone injection in my knee but after being on Limbrel for 3 months that was not necessary.

Had surgery for trigger thumb due to inflammation 5 months ago and thought I would need surgery on all fingers and other thumb since they have the same promblem. Orthopedic surgeon said to wait and see what Limbrel would do. My fingers and other thumb are doing great, only a little tenderness once in a while but no pain or locking, back to being livable.

Limbrel is not a cure but it sure does bring things under control. I can now get up from a chair without feeling like I am going to crack/break in the groin area. Actually get up more like a normal person and go on about my business instead of reeling in pain and trying to put one foot in front of the other and hobble around until things let up.

Before taking Limbrel I was using Tylenol a lot for pain/misery but now very seldom need to take one. I could not take the other anti-inflammatory meds, very hard on stomach and had to quit almost immediately. Limbrel has not bothered my stomach and have had no side effects that I know about. I was able to stop taking Prevacid (problems due to taking Actonel) after being on Limbrel a few months.

Are you taking 250 mg. twice a day or just one pill that is 500 mg.?

Sure hope Limbrel helps you as much as has me, I am living again!

taape 05-28-2007 06:40 PM

Re: Limbrel Anyone?
 
Misty800,
Thank you so much for writing back. It's good to hear that it works for you and I hope I find the same. I did speak with a pharmacist friend who looked it up and said it goes down the pain pathways like the NSAIDS so that's encouraging. The prescription is for 250 mg, twice a day, so AM and PM. The smaller dose didn't bother my stomach so hopefully this won't either.

I really need pain relief as I've been going without it for over a year since NSAIDS messed up my stomach. I hope I can get off the Protonix but we'll see. Tomorrow is the day I start Limbrel again as I had about a 3 week break while waiting to get this new prescription.

Harry 05-28-2007 10:42 PM

Re: Limbrel Anyone?
 
This is a very different athritis medication than NSAIDs or Cox 2 Inhibitors. I understand it is produced from food.

I am very interested in it-- How much does it cost? I will do more online research.

Thanks---Harry

DesertBloom 05-29-2007 09:24 AM

Re: Limbrel Anyone?
 
Hi All: Misty I'm glad this works for you and Taape, maybe you need to take it longer??? I took it for a month and didn't get [U]any benefits[/U]. I'm willing to try it another month but if it doesn't work by then I can't get it filled again.

Misty: Like we talked about before, my insurance won't pay for it an I tried to get them to add it as a drug exception, but they won't do it. I had to pay 90.80 for a month supply 1 pill 2 x's a day (250 mg). That price was also a discounted price that I got, it actually cost apprx 130.00 for 60 tabs (250 mg).

Harry: Good luck with this, I hope your insurance will pay for it, because there are NO alternatives for this. Your dr should be able to give you samples at first.

Have any of you tried Humira, or Enbrel??? I know the Enbrel is really expensive injection, (1400.00) a mo but does it work??? My insurance will cover that at a 60.00 copay, but I don't know if it works.

Good luck to you all, and I hope this next month shows some results with limbrel. I have severe oa of the spine and probably everyother joint, so I'm having a hard time with the intense pain throughout my body. I was recently tested for rheumatoid arthritis, but don't have my results yet.:wave: :wave:

Misty800 05-29-2007 10:21 AM

Re: Limbrel Anyone?
 
Harry,

Limbrel is not made from food, it is made from bark of two different trees, forgot which ones. Limbrel is a "medical food" not a health food like you get from health food stores. It is a new class of drug and lands under the FDA Orphan Drug Law.

Limbrel is only available via prescription filled at a pharmacy and must be under doctor care.

Limbrel works by blocking the enzymes that cause inflammation.

I pay $271.64 for 180 pills. Have checked at various pharmacies and online but cannot find it much cheaper anywhere. All prices were within $3 of each other. If my pharmacy files online with the insurance company I would get the benefit of the adjusted price. Individuals do not get that price break. It would be $197 for 180 pills if the pharmacy filed online for me. The only thing is that I have a 3rd insurance company and need the paperwork.

75% of insurance companies pay for Limbrel. I am having to fight tooth and nail to get my insurance to pay. They have now paid for 2 but a 3rd is still in the battle. Sure hope they decide to pay without a fight from now on.

Misty800 05-29-2007 10:31 AM

Re: Limbrel Anyone?
 
DessertBloom,

One month was not long enough to get real benefit, only a hint that it was helping and then you might question it. If you take Limbrel for 3 months I believe you would see a big difference. Of course what works for one person does not always work for someone else. Also, the degree of misery would make a difference too, may take longer to get all the enzymes blocked.

Limbrel does not stop pain on a quick basis like aspirin or Tylenol does. Takes time to build up in the system and block the enzymes that cause inflammation.

Yes, Limbrel is expensive especially without insurance. I have been out the money upfront and still battling the insurance company to pay for the last prescription. If your insurance is thru employment or retirement thru company retired from, check with the benefits office and get them to help battle the insurance company, that is what I am doing.

Ask your doctor for samples. When I told my doctor the insurance company was dragging it's feet on paying, he said they had a lot of samples and would give me some. He gave me a month worth and I was very grateful.

DesertBloom 05-29-2007 10:47 AM

Re: Limbrel Anyone?
 
Hi Misty: I have Medicare PartD through disability. I have fought with the ins in the past to get them to cover things, but on this one I haven't been successful. I could probably get it filled for 2 more months, paying the discounted price, my problem is the waiting for results, I'm not good at that.

I did initially get samples from my ortho, but after I got home found out that
"all" the samples he gave me were expired. I tried to get more but they didn't have any and told me to just get it filled:mad:

I could try again to see if they have gotten any new samples, but I doubt they would give me a months supply.

Glad it works for you and maybe I'll give it another shot, with the price.:wave:

Harry 05-29-2007 01:48 PM

Re: Limbrel Anyone?
 
Misty,

Thanks for the Information -- I called my Insurance Co. and they carry it - Co Pay Cost $45 for 3 months supply.

In my search -- I ran across some side effects and I know every med has them -- But, I found it very interesting since it is nothing like the NASIDS or pain killer types normally used for arthritis --like stomach problems and diarrhea or constipation.

The side-effects listed for Limbrel are-- blurred vision, dizziness, dull or heaviness of legs, fluid accumulation in the knees, nervousness, pounding in ears, lower or fast heartrate, swollen ankle & feet, red crusted or scaling skin.

It is truely a different type of medication for arthritis.

Have you experienced any side effects?

Thank you --- Harry

taape 05-29-2007 05:43 PM

Re: Limbrel Anyone?
 
I paid $85 for a month's supply and that was discounted by being a member of AAA-yes the car road service. Weird but I won't complain. I haven't attempted to get my insurance company to pay for this as I want to see if it works first. I'm pretty sure that I can convince insurance to pick up the cost since I can't use NSAIDS. In the meantime I have medical reimbursement money through employment so I can get refunded. Can't figure out why doctor's give out expired samples, that has happened to me.

I didn't notice any side effects during the 3 weeks I took it. I'm glad it didn't bother my stomach as I saw the warning for people who have had ulcers. Some people don't get any side effects to certain medications and other do but all you can do is try it and see what happens.

I wonder if any blood tests are recommended while taking this? Maybe a test for inflammation?

Misty800 05-29-2007 06:19 PM

Re: Limbrel Anyone?
 
Harry: I have not noticed any side effects from Limbrel.

Taape: My stomach was damaged from Actonel and was on Prevacid for 2 years. Since being on Limbrel I took myself off Prevacid (there is a rebound effect going off) and my stomach is doing great, no problems with Limbrel.

I too have a very sensitive stomach even before taking Actonel.

The doctor did not mention any tests to do while taking Limbrel. A test for inflammation might not be what we need since our body does have inflammation and I am sure the Limbrel does not get rid of all of it.

With all meds we need to keep watch on our liver and kidneys.

taape 05-29-2007 06:34 PM

Re: Limbrel Anyone?
 
Misty800 - did you go cold turkey off of Prevacid after stopping Actonel? I'm down to one Protonix every other day from 2x/day. I can't seem to get below this Ok kidney and liver tests, that makes sense. If I could get rid of 1/2 my inflammation/pain, I'd be happy.

Misty800 05-30-2007 04:51 PM

Re: Limbrel Anyone?
 
Taape:

I stopped Prevacid cold turkey and did have rebound effect. I used liquid Mylanta extra strength to get me by for about 2 weeks and then occasionally as needed. Made sure I took a dose of Mylanta before bed. I was determined to get off Prevacid after reading all the things it could cause.

It is hard to know when we still need a med or not. So many meds create a need rather than it still being the original need. This is not the first time I have taken myself off a med and every time was better off once I got over the withdrawal phase.

Sure hope Limbrel reduces the inflammation for you.

Harry 05-31-2007 10:42 PM

Re: Limbrel Anyone?
 
taape & Misty,

I have done alot of reading about Limbrel (Flavocoxid).

I found out it is produced by a private company-- Primus Phamaciiticals in Scotsdale, Arizona. So, it does not have a big drug Company pushing it with a large sales force. So I'm surpised that any Doctor's have samples. My Doctor never heard of it. I am having to educate us both!

A press release was on 2/1/2006-- It is an entirely new approach to treating OA-- but has not been tested for use on RA. The printout from Wal Mart said that "No Common SIDE EFFECTS have been reported with proper use of this medicine".

As has been said --- it is a medical food used for dietary managing OA and the inflammation that is associatd with it.

So, taape it should work for you!

As with all meds follow the directions given by your Doctor -- the normal dose is 250mg every 12 hours best taken on an empty stomach at least 1 hour before a meal or 1 hour after. I think that is for better absorption.

Misty -- I know you don't need to know this but Clinical Trials just for knee pain reilief is being run by a government grant at the University of Alabama.

As both of you know OA does get worse with age and wear and tear of joints-- the best single natural thing to do to reduce pain as well as inflammation is to get and keep your weight normal and do some exercise--- My Doctor remined me of that!

I wish you both well---Harry


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