# GED and Allopurinol treatment



## HotGrandma (Sep 21, 2012)

Am I the first.

I searched this sight for what my doctor prescribed for GED of "trental allopurinol nicotinamide" and found nothing.

Here is a link http://www.expertmapper.com/go/grave...bAdv/-e151-175

I am so desperate I will do anything to make this go away!!!.


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## HotGrandma (Sep 21, 2012)

http://www.expertmapper.com/go/graves+ophthalmopathy/-gpearth/-vTbAdv/-e151-175

Oops something missing from the prior posted link.

http://www.ncbi.nlm.nih.gov/pubmed/14757966


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## HotGrandma (Sep 21, 2012)

Okay, so I have been taking this for a week now. They said it could be 2-6weeks before I notice a difference. What I have noticed so far is I get 1-2 hours more sleep and wake up more rested than I have for several years. Second, I don't wake up soaking wet from sweating. So good so far. Also seems to be helping with the food cravings created from the prednisone. Cause I can't afford this pound per week gain.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Okay, so I have been taking this for a week now. They said it could be 2-6weeks before I notice a difference. What I have noticed so far is I get 1-2 hours more sleep and wake up more rested than I have for several years. Second, I don't wake up soaking wet from sweating. So good so far. Also seems to be helping with the food cravings created from the prednisone. Cause I can't afford this pound per week gain.


Aaaaaaaaaaaaaaaaaaaaaaaw; that sounds promising and I did go to the links. I am praying this works for you and don't forget to ice down those eyes w/ice pack whenever you can. It really helps w/ the swelling and sleep with your head elevated.

Prayers are being heard.


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## HotGrandma (Sep 21, 2012)

Thankx Andros:

I do, usually thats a morning routine. Otherwise looks like I'm peeking through slits. Another thing I do thats optomologist approved is rub vasoline over my eye lids and side of the socket. That way when they tear nothing gets in them, also no lotions. With the vasoline the tears don't burn my skin and make that vicous cycle. Seems to tear less, and with the vasoline I can gently rub out some fluid without pressure or irritating them more. My eye's like the time change, I am better with driving at night, not too much to reflect into my lap with this newly crossed eye.


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## HotGrandma (Sep 21, 2012)

Week 2: Though the area just below the eye brow still swells, looks like a sausage under that skin, I have noticed that my eye's don't seem that "HOT". On the prednisone it still felt like there was scalding fluid trying to get out around the sides of my eyes, the swelling was better. But I feel the Allopurinol is taking the HEAT out. Also noticed today that for the first time in almost 2 years I have dark circles under my eyes. Huray, maybe that means my eye's are settling back into their socket and I won't need "decompression surgery" Could I get lucky or what?


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## Andros (Aug 26, 2009)

HotGrandma said:


> Week 2: Though the area just below the eye brow still swells, looks like a sausage under that skin, I have noticed that my eye's don't seem that "HOT". On the prednisone it still felt like there was scalding fluid trying to get out around the sides of my eyes, the swelling was better. But I feel the Allopurinol is taking the HEAT out. Also noticed today that for the first time in almost 2 years I have dark circles under my eyes. Huray, maybe that means my eye's are settling back into their socket and I won't need "decompression surgery" Could I get lucky or what?


You could get lucky!! Everyone deserves some; life is hard enough as it is.

Prayers continue on your behalf!


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## HotGrandma (Sep 21, 2012)

Week 4: My eye's are not hot anymore. YAY. This is so great. Doc wanted me to continue on the prednisone but at a lower dose. When I went to fill the prescription I got into it with the pharmacy that I only wanted 15 that would give me 30 days they insisted I had to get 60 that would give me 120 days. Rediculous. So I asked that they call Doc's office, she had a problem with that (doing her job). By now I can feel my eye's swelling, my heart racing and felt like I was gonna hit the floor from the stress. I told her to forget it that they were not the only pharmacy in town.

That was Monday, went into Doc's office to get my lab request today and told the nurse what happened. But I learned that right now I cannot handle the slightest amount of stress. That my eye's swell almost like my eyes are my blood pressure. Weird huh. I would recommend anyone with hot eyes to get on this medication. It has made a HUGE difference. Hopefully, docs office will not call back and tell me to get back on the prednisone.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Week 4: My eye's are not hot anymore. YAY. This is so great. Doc wanted me to continue on the prednisone but at a lower dose. When I went to fill the prescription I got into it with the pharmacy that I only wanted 15 that would give me 30 days they insisted I had to get 60 that would give me 120 days. Rediculous. So I asked that they call Doc's office, she had a problem with that (doing her job). By now I can feel my eye's swelling, my heart racing and felt like I was gonna hit the floor from the stress. I told her to forget it that they were not the only pharmacy in town.
> 
> That was Monday, went into Doc's office to get my lab request today and told the nurse what happened. But I learned that right now I cannot handle the slightest amount of stress. That my eye's swell almost like my eyes are my blood pressure. Weird huh. I would recommend anyone with hot eyes to get on this medication. It has made a HUGE difference. Hopefully, docs office will not call back and tell me to get back on the prednisone.


For the Grave's patient, any opposition is extremely stressful and yes, the eyes will bulge and yes it is connected to the BP response.

Sending hugs to you!


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## HotGrandma (Sep 21, 2012)

Just finished reading Elaine Moore's book on "Thyroid Eye Disease" and she writes on page 130

A small study in Greece that involved 11 patients with GO, all smokers, demonstrated an 82 percent improvement rate in patients treated with oral administration of the anti-gout medication allopurinol (300 mg daily) and the B vitamin nicotinamide (300 mg daily). A reduction of solf tissue inflammation was the most prominent finding, and no side effects of treatment were observed.

So if I get hit by a buss, if everyone could pass this on to persons suffering, cause I was living proof it worked, at least before that buss hit me.LOL


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## Octavia (Aug 1, 2011)

Well, since it's working, shouldn't you be able to see the bus BEFORE it hits you, and move out of the way? 

Sorry...I couldn't resist. I'll slap my own hand now and save you the trouble.

I'm so glad this has been working for you! Are you a smoker (similar to the people in the study?


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## HotGrandma (Sep 21, 2012)

Sadly yes I am a smoker. I don't drink, don't do recreational drugs, I eat healthy and up until the graves hit worked out 4 or 5 days a week. According to what I read in one of Elaine moors books the work outs I did helped to stress my body creating antibodies to wreek havoc. I would do 45 minutes of cardio 45 minutes or more of weights and another 30 of cardio then stretch and cool off for 15-20 minutes. With the Graves I've gained 20 pounds and have trouble doing my walks with the heart palps. But there's no smoking in my home and I only smoke outside. Like grape cigars too.

Damn I hear that bus. But I see two of them with this graves double vision. Which one do I pick. SMACK


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## Octavia (Aug 1, 2011)

Hey, we all have our vices.

Okay...I don't know much about beta blockers or anti-thyroid meds, but your comment leads me to ask if perhaps you need more of one or both of those in order to at least be able to take walks without getting heart palpitations. Thoughts?


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