Prednisone for life?

@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

@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

@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

@dadcue I am always interested, but I was confused and I have this question for you. Do you have CPPD go or do you have uric acid type gout? The CPPD is the calcium deposit one that I was referring to the uric acid level one is when your body goes acidic. The treatments are different. I have the high uric acid level gout. The pseudo gout is the CPPD. I want to point out that the biologic are very harsh kind of like the prednisone so before you start getting excited about those remedies, I want to be sure that you’ve investigated, and they have told you which you have the pseudo, gout or the gout. If you have the gout, then pushing your body to be alkaline is what you need to do either from low purine diet, drinking liquids that push your body alkaline like a squeeze of lemon in your water daily and the allopurinol. The CPPD is a different protocol which it sounds like you’re on with the colcherine. I probably spelled that wrong.! maybe they think you have both. My father had gout and I never knew it because it was well controlled. My mom used to make him a thermos to take to work every day with warm water and a squeeze of lemon. My father never drank anything anywhere anytime any place other than hot water with lemon and I never knew he had gout until my mother died and he stopped getting the lemon in the water. I have pretty much given up alcohol because my body is not interested in it which is a good thing cause that’s not good for you either when you have pseudo, gout or gout. And like I said, I keep a low purine diet and sometimes I can start to feel a twinge in my big toe so I just start flushing water and alkaline type drinks and I’ve never had another gout flare since my initial ones 25 years ago. But achy and stiff like you wouldn’t believe until I started taking the tart cherry capsules, and then the allopurinol.

@loriesco

A limited amount of research has shown that an interleukin-6 (IL-6) inhibitor such as Actemra (tocilizumab) to be a promising alternative for treating crystal-induced arthritides, such as gout and pseudogout (CPPD). Gout and pseudogout are different types of inflammatory arthritis.

This is a better link that discusses this.
https://pubmed.ncbi.nlm.nih.gov/40550451/
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I have gout since my uric acid level was high. The kidney stone that I passed was also composed of uric acid crystals. The problem with diagnosing me with gout was because I was taking prednisone for PMR. Because prednisone is the primary treatment for PMR, it probably suppressed my immune system's inflammatory response to the uric acid crystals in my joints.

I have a complicated medical history which includes inflammatory arthritis which was diagnosed when I was 32 year old. Now I am 72 years old. I have listed some of my medical problems during the past 40 years in my profile. You can see what is listed by clicking on @dadcue

I agree ... it is all very confusing to me too. I have been on Actemra (tocilizumab) for 7 years. After PMR was diagnosed, I took prednisone daily for 12 years with little hope of ever being able to taper off prednisone. I haven't needed any Prednisone for 5 years. I'm doing much better being off Prednisone and on Actemra.

Gout was diagnosed recently after I tapered off prednisone. The speculation was that prednisone masked my symptoms of gout.

@dadcue my confusion was not about gout but about something you wrote. I was unsure if you had pseudo, gout or gout or both.
You are very lucky that you were diagnosed with inflammatory arthritis about the time that I should’ve been also diagnosed. However, I wasn’t getting regular medical attention in my 30s. It was more about general medical needs being a mom and for my family. But you are also unlucky because they put you on the prednisone which was an acceptable way to deal with the inflammation at that point in time. At the end of my 30s I was receiving periodic injections of steroids for my inflammatory pain with no attention given to what was the source. In my 40s it was about sending me to physical therapy and then by my 50s I was having joint replacements. There was never any attempt made to organize everything under one umbrella. When I looked back, it’s all very clear. Both sides of my family had inflammatory arthritis. But they made do. I am lucky that I observed, and kept pushing to eventually get myself into a place where I am in better shape at 69 than I was at 39.
I believe in food as medicine and I’ve witnessed how clearly that works over the years. My dad had gout and took no gout medicine until his 70s because he did not eat sugar, and he moved his body to an alkaline state by putting lemon in his water. It was that simple he a lot of fruits and vegetables things that include protective agents against gout or pseudo gout. My aunt on the other hand ate a miserable diet, and she suffered every day of her life as she aged. She refused to be disciplined. She refused to control her sugar and acknowledge what was causing her inflammatory condition. Looking back I feel really bad that nobody could help her get to the right doctor and her family wouldn’t recognize the inflammatory gout that made her miserable and made her a miserable person.
Yes, my medical history is very complicated too, and I think it’s because I walked around with the consequences of an inflammatory body for 30 years untreated at its source. I think that most women who suffer with things like fibromyalgia are not getting treated for an inflammatory condition, and the catchall term is fibromyalgia. It makes people feel better that they can have a diagnosis, even if it works against them in solving what’s at the source of the problem. It’s the same for the term arthritis. Inflammation destroys our body in a way that is most significant and that we most ignore. Instead of treating opioids like it’s the devil people should look at things like their sugar intake. They should look at things like the acidic state they throw their bodies into. They should not accept the “masks” that the medical industry gives them for reducing inflammation, but they should look at the cause more closely so that they don’t have negative outcomes from the medicines themselves. It’s all related by inflammation. What seems complicated is not so complicated when we reduce the inflammation in our bodies. All of a sudden my chronic glaucoma, high eye pressure went to normal when the gouty arthritis was controlled by normalizing my uric acid level. My interstitial cystitis was gone when my uric acid level was normalized seemingly unrelated things were normalized and healthy again when the inflammation at a core level was eliminated.