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Prednisone for life?

Polymyalgia Rheumatica (PMR) | Last Active: Jun 21 9:45pm | Replies (18)

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Profile picture for loriesco @loriesco

@dadcue it’s really hard for me to get rid of my anger around not being formally diagnosed with gout after 30 years until recently. I went to top drawer arthritis doctors many over many great medical institutions like UCSD and the VA Naval hospital in Balboa Park, I even had gout flares 25 years ago and had to go to the hospital for them. Then they were completely ignored my history with my father gout was ignored. My continued inflammatory pain was ignored. I demanded to be tested. They kept testing me for rheumatoid arthritis and when that came up negative every five years they would not dig deeper. I am very very angry. It wasn’t until I tried the tart cherry capsules by ZAZZEE that within 24 hours all my pain disappeared after 30 years. Not only that but my interstitial so us and quite a few other things got better. There’s something else you should know that there’s two kinds of gout. One is the traditional gout which is stimulated by high uric acid levels in your body ergo your kidney problems and your stones, and there is something called pseudo gout. I thought that was just something that mimicked gout because the stupid doctors seeing me at the time didn’t tell me that it was actually something. I honestly don’t think they knew. But it is something different. It’s caused by calcium deposits instead of uric acid deposits and there’s nothing that can be done for it unlike traditional gout, which is helped by a low purine diet and medication. The pseudo, gout, flares can only be eased by things like Tylenol and painkillers. If you’ve done the testing and you have high uric acid, I think you can rest assured that you have regular traditional gout. I think that is better than having the other kind of gout. After 30 years, the knots in my fingers and the swelling have stopped progressing.!!! that is nice. I am very content on the allopurinol medication. And if my joints start to get sore, I can take an extra pill because I’m on the lowest level dose. Yes my medical history at Ucsd is like eight pages long of diagnosis sees and problems. I used to bug them about removing some of them or hiding them but now I just leave them because if I were to go to the hospital, somebody can see all the things that are there and better diagnose me with whatever I might be currently experiencing.
Natural remedies work great for relieving, gout and avoiding flares for 25 years I make a joint juice of tart, black cherry Noonan juice, apple cider vinegar, and lemon juice maybe the whole thing totals about 6 ounces Then I add about 24 ounces of water or 7-Up something clear and I drink as much as I can over an hour or two and I’ve never had a flare since I started drinking my joint juice. A low purine diet is the key. Even if you were on medication if I were to eat meat, beer, mushrooms, all in one meal I would start bringing on a flare. I am anemic so it’s hard to get that need for red meat satiated with trying to be on a low purine diet at the same time. That’s how I know. I’m getting older because it’s harder to keep imbalance. I’m glad you found out.
I think you should ask them to put you on the allopurinol. My doctor was reluctant because you can get extra pain as the uric acid gets stumped in your system when you first start taking the pills. I had no pain no extra pain. And it was really clear I needed to be on the medication so my uric acid level stays exactly at Center so I don’t create any kidney or gallstones or any other kind of stones. High uric acid runs in my family family obviously because a lot of different members had gout. And if they won’t, you can still take the tart cherry capsules and those are amazing. They’re only like 10 or $15 for like 90 days on Amazon and it comes right to your door.!! let me know if you need the exact link. I think it’s like 10,000 :1

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Replies to "@dadcue it’s really hard for me to get rid of my anger around not being formally..."

@loriesco
Clearly, many of us have had interactions with the medical community that have been challenging to say the least, and you are not alone in this regard. Pardon my curiosity, but did a doctor ever recommend or perform a needle aspiration to withdraw some fluid from an inflamed or swollen joint? Examination of the joint fluid can rapidly diagnose arthritis due to gout.

@loriesco

I understand how you feel. I don't really know how long I had gout and it doesn't really matter to me. I only regret that I took so much Prednisone for a very long time. Prednisone daily probably prevented me from knowing if I was having gout flares.

I'm on allopurinol and colchicine now. My uric acid level is targeted to be under 5 mg/dl. I'm also on potassium citrate to shrink the size of my uric acid kidney stones.

"Reduction of Urine Acid. Uric acid stones form in acidic urine, so a key goal is to make urine more alkaline (or basic, with a higher pH). This is often done with medications called potassium citrate or sodium bicarbonate."
https://www.kidney.org/kidney-topics/uric-acid-kidney-stones
There seems to be a lot that could have been done. I didn't need all the pain I went through when I passed that kidney stone!
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For gout patients with tophi (urate crystal deposits), doctors typically lower the target serum uric acid level to < 5 mg/dL. Standard treatment normally aims for < 6 mg/dL.

Nobody really knows how high my uric acid levels were getting because it was never checked. When I passed the uric acid kidney stone, my uric acid level was > 8 mg/dl. I might have been able to change my diet and do other things to keep it lower had I known.

What I found interesting is that IL-6 inhibitors like Actemra which I currently take for PMR might also help with the management of gout.
https://www.healio.com/news/rheumatology/20240219/biologics-fill-very-unique-niches-in-gout-management
The quote below is from the above link:

"Shifting gears, IL-6 inhibition with tocilizumab (Actemra, Genentech) may also have utility in the acute gout flare setting, according to Mandell."
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The following link provides more details if you are interested:
https://www.mdedge.com/internalmedicine/article/272016/gout/il-6-receptor-inhibitors-show-early-promise-cppd