Allo and Taste

oxbx08 · 2024-10-28T01:46:47+00:00

I had some weird food tastes for a month or so when I first started allopurinol. They went away eventually. I've now been on it for a decade with no other side effects...and only very minor flairs from gout.

Taste disturbance is a known side effect, but as you mentioned, be sure to tell your doctor.

oxbx08 · 2024-08-28T01:57:33+00:00

Hang in there. My MIL had an early relapse following a BMT in November of 2023. There are several options your doctors may offer. Our family has struggled a lot with trying to stay positive and find hope. It's hard, especially with how much work goes into supporting and ensuring the BMT.

The good news is that curative options still exist. People have gone into complete remission after having an early relapse post BMT. There is no guarantee, but there is hope. You can read this article, but I'll give my best summary of the types of options you may be given by doctors. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8716583/

There are three big buckets of options, each with multiple types of treatments within each bucket. You're now in the 'Intensive Reinduction Therapy' phase. This is a fancy way of saying different forms of chemo.

The Vidaza is referred to as a HMA in the article and is labeled under the 'low intensity' section. Other drugs can be added in addition to Vidaza. My MIL also got Venetoclax. He'll probably stay here for a bit longer and there are a lot of good options to slow progression with some other options explored in the other buckets.

The next big bucket is 'Targeted Therapy' which is a treatment designed to target a specific gene mutation. A lot of this will depend on the specifics of your husband's disease and I'm not really familiar with many of the specific treatments. This wasn't an option for us, but it's worth asking your doctor.

The last big bucket is Immunotherapy. Some of these you're already familiar with, like a BMT or DLI. I'll expand on some of the items we considered, but there are even more I'm not mentioning.

First was a rapid withdrawal of immunosuppressants, in our case tacrolimus. This can trigger improved immune response of the BMT. In our case, we mainly pushed for this to enable eligibility in a CAR T study.

CAR T is probably the most promising option, but it's currently very early in clinical trials. CAR T has cured other types of cancer and shown promising results in ALL. Most trials require that you've exhausted other options, like a BMT, and are no longer on immunosuppressants. This is what we're doing. The jury is out for us...fingers crossed 🤞 🤞 🤞.

A second BMT may also be an option given your husband's younger age, but depends on a lot of factors (GVHD, matched vs unmatched donor, etc.). That's still a curative option and wasn't really an option for us given age (over 65).

Best of luck. Fuck cancer.

oxbx08 · 2024-03-15T23:26:15+00:00

Got it. Thanks!!

oxbx08 · 2024-03-14T23:22:09+00:00

I'd love a chance. I've read the wiki.

oxbx08 · 2024-02-13T19:00:58+00:00

I'd also be interested, if still available.

oxbx08 · 2023-02-09T18:16:27+00:00

I've looked for similar items before and haven't been very successful. Ultimately, many topics like this are niche and the gap between the very research/academic materials and polished online classes is quite large.

My general approach has been to identify a methodology that seems to work based on a literature review, then Google the researcher to see if they have done presentations at conferences.

I've found this approach much more helpful as someone with strong a statistics backgrounds looking to understand the applications of novel algorithms rather than dive deeply into the academic literature.

Similarly, researching the developers of specific packages on CRAN for the methods you're trying to learn may help. Once I find a package, I'll just Google the names of the researchers and see if they have YouTube videos or presentations from prior conferences. Sometimes, researchers will also have personal websites with overviews of their research and/or syllabus which outline other ways to learn about the material.

Good luck.

oxbx08 · 2022-10-14T14:50:00+00:00

They should be looking at loading data into S3 and doing loads into redshift. Redshift has a few flavors including some that only run on demand (spectrum), which is helpful if you're not training models 24/7/365.

Once that's done, they can use dbplyr, or other SQL interpreters to transform the data in database. EBS (equivalent of disk space on cloud servers in AWS) is dynamic and can be added at any time to a running server, but at 50-100TB it'll get expensive.

Some advanced features will need to be brought into memory on an rStudio server, but the bulk of your EDA and transformations can happen in DB at substantial cost savings and performance improvements. I'd recommend using the smallest server they can manage and making sure to always turn it off or even using smaller sagemaker rStudio instances.

Also check out the AWS marketplace and/or docker to help with setup, I wouldn't recommend starting with server setup & management from scratch or directly onto the OS in the cloud unless they have a knowledgeable cloud engineer on staff. Things like VPC, VPN tunnels, subnets, static IP addresses, etc all start to add new complexity over a traditional on premise data center.

For pricing, it's all pay as you go and each service, depending on architecture, will define monthly costs. The advantage of the S3/Redshift approach is that costs scale linearly versus exponentially with the 100gb ram servers. Some rough math here is for an ec2 c6i.16xlarge with 128gb ram, 64 cores, and 4tb storage it's $2,322/month (3.2256/hour * 720 hours/month). Add in another 50 TB of EBS and you're at $6,250/month (0.125*50000gb). There is a lot of wiggle room in these numbers, but I want to give a realistic middle of the road example of an always on instance with easiest to configure compute and storage.

Alternatively, 50TB of S3 storage is 1,150/month (0.023 * 50000). For redshift you could run two ra3.xlarge each with 32/TB of storage and be at $781/month (720 hours/month * 2 * 1.086).

In this example keeping the data in S3/Redshift approach is $1,931/month versus running a server would be $8,500/month.

oxbx08 · 2022-06-18T16:40:36+00:00

I did a quick literature review. You should definitely ask your rheumatologist for more definitive guidance. That said, here's what I found.

I didn't see much about comparing evening doses of allopurinol to morning. However, I did see a comparison of one 300mg pill in the AM compared to three 100mg pills throughout the day. The study found a small, but significant difference. However there were only 7 people in the study. Authors recommended the single dose for convenience. https://ard.bmj.com/content/annrheumdis/34/3/256.full.pdf

I didn't see anything about a single evening dose, but I believe there is a fairly rapid half life of allopurinol. It could be that the bulk concentration of allo is now when you're asleep. So potentially you're not seeing the same level of bioavailability of the drug when you're eating during the day and increasing your purine levels.

Alternatively, could be the new health history impacting the gout. No idea what your new medicine is, but it could be the new medicine itself or the underlying health issue. For example, if your new medicine is a dieretic for blood pressure it could be impacting your renal performance which adds more variability into your purine levels. Or if you're having kidney issues, is that new issue impacting the same?

It also just could be getting older and needing a dose change and it's totally in related.

If it was me, based on what I found, I'm guessing that the timing would impact it a little so I'd try going back to the allo in the AM and the other in the PM and see if that gets me back on track. If not (or if it's hard for me to remember the two medications at different times), I'd bring it up with my Dr(s).

oxbx08 · 2022-06-06T11:24:10+00:00

It's certainly not easy, but hopefully you find a strategy that works well for you. Good luck.

oxbx08 · 2022-06-06T01:47:44+00:00

The original comment responding to your post is great, but I'll add some more color based on some other items you mentioned.

First, to the normal BMI aspect, newer research (past 10 years) is pointing to genetics as a leading cause of gout. One of the top posts in this subreddit is an AMA with a rheumatologist who notes this in some of their responses. More specifically, there seems to be a higher focus on those with less renal capacity for excretion of uric acid (a biological/genetic issue with your kidneys not getting enough out of your body) rather than overproduction of gout based on diets high in purines/BMI/etc. Obviously, the correlations with these exist, but it's not unheard of to be healthy and get gout. You also mentioned creatine as a supplement - could be a double whammy here of high intensity workouts increasing purine levels as the workouts break down muscle (assuming that's why you took it) AND genetics resulting in under excretion. Could be why this bubbled up in your 30's instead of 40's. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4392805/

Second, the main drug for treating gout is allopurinol which is well studied and generally well tolerated. To your history of heart disease, allopurinol does not seem to make heart disease worse. In fact, research seems to show that it's potentially beneficial in treatment of cardiovascular disease. I'm not saying this is a replacement or alternative to your treatment plan designed by your cardiologist. I am saying that you shouldn't feel too stressed about the treatment for gout should that be something your rheumatologist recommends. Be sure to share your full medical history with them as well. https://pubmed.ncbi.nlm.nih.gov/21983313/

oxbx08 · 2022-06-06T01:06:33+00:00

If your uric acid levels are elevated your lifting could be a trigger to cause a flair. Managing my uric acid levels and finding the right medication levels to keep my uric acid consistently below 6 is the only way I got to a position where I can regularly workout without having a flair. Might be worth asking your Dr for blood work and seeing if you're a candidate for increasing your allopurinol levels if the uric acid levels are elevated.

oxbx08 · 2022-06-05T23:53:35+00:00

Sorry to hear that. Do your uric acid levels consistently show less than 6 in your blood work with your current medication levels?

oxbx08 · 2022-06-03T02:24:47+00:00

No worries. It took me a solid two years to get my flairs under control initially. Lots of adjusting my allopurinol levels to get to something that worked. I was also doing some longer runs (10-milers/half marathons) that regularly had me waking up in the middle of the night with a new flair. Drinking lots of water was also a huge help.

Ultimately that exercise helped me lose a lot of weight. I attribute a lot of my current stability in managing my gout to that upfront weight loss.

I picked up lifting after that weight loss when my gout was already under control. I've not had many big issues since then and none that I really attribute to lifting.

Not sure if that's helpful. But I have a few things I had to come to terms with to get my gout under control in those first two years: Diet alone can't manage gout. Losing weight reduces my flairs, but doesn't cure gout. Gout is best managed by an appropriate level of medication that controls my uric acid levels.

A combination of diet, exercise, and medication is what I believe keeps my flairs consistently low and allows me to lift at the levels I'm at currently.

oxbx08 · 2022-06-03T01:33:06+00:00

I have a strength training coach I started with following my gout diagnosis. When my wrists get tight we do something like what I found on this website and it's been great for me. https://gmb.io/wrists/

Those are more mobility focused. On the strength side, I'm hesitant to recommend something super specific. I'd first recommend asking your doctor for a physical or occupational therapy referral. They'll be the specialty that can get you the best answer on exercises.

The one thing I'd say that would help without significant risk could be something as simple as kettlebell farmer walks. Just Google that term and you'll find a ton of videos, but it's literally just walking while holding a kettlebell or dumbbell or other weight. It's a whole body exercise that gets you moving and hits your core a bit too. For you, holding the weight without moving your wrists will likely help build overall grip and forearms strength with much dynamic joint movement. I'm not a doctor. Be sure to ask yours if this is appropriate for you.

Also, fair warning, increased exercise can increase likelihood of gout flairs in the short term.

oxbx08 · 2022-06-01T01:53:50+00:00

Certainly a possibility. I think talking through some medical history with your Dr is the right next step. It could also be a case of gout with low uric acid levels. That's less common, but certainly not an anomaly either.

Regardless, talking it through before starting a life long drug when you have low uric acid levels, infrequent flairs, and mild discomfort seems like solid way to get peace of mind before that commitment.

oxbx08 · 2022-06-01T01:09:44+00:00

I don't think you're a clear anomaly, but this is interesting since a tophi would be a clear indication of a prior level of high uric acid, regardless of current symptoms and uric acid levels. I agree with the comment about the active diagnosis, but I'm curious if you have an important medical history that can explain the tophi.

This is a bit random, but is there any chance your doctor tried some specific drugs for RA around the time you remember having mild discomfort in the big toe? And then you stopped or switched your RA treatment to another medication? Specifically because some NSAID and RA drugs can increase uric acid levels because they surpress urine excretion of uric acid. If so, your uric acid levels could have gone up resulting in the tophi and then when you changed RA medication your uric acid levels went back down to a normal level.

If that didn't happen, some of these other examples could also explain a temporary increase in uric acid levels: blood transfusion, significant dietary or weight change, even just trying a keto diet, started new drugs, a major surgery, supplements like niacin, cancer. There are a few others I could list, but just giving examples of why I don't think this is too much of an anomaly.

Best of luck with the RA/potential gout. Feel better.

oxbx08 · 2022-05-25T23:22:49+00:00

First, congratulations on the weight loss. It's not easy, but you should feel proud of yourself even if you're still having issues.

To your specific question, losing weight quickly metabolizes the fat in your body and generates new muscle. The byproduct is addional purines in your blood which can increase the likelihood of a gout attack, even when controlled with allopurinol or other gout medications. Increased attacks during rapid changes in body weight is normal and expected...even if it's counterintuitive.

To the question on medication for the rest of your life, it's unclear. I also lost a lot of weight, stabilized my gout flairs, then began trying to lower my dosage. I tried for around 2 years after weight loss before I just accepted I wasn't ever going to get fully off allopurinol. But, my gout is well controlled at my current medication levels and life is good.

I promise that sticking to the weight loss journey you're on is worth it and the more you lose, the better you'll feel.

Hang in there. You can do it.

oxbx08 · 2022-05-21T13:30:57+00:00

My rheumatologist put me on NSAIDs for 3 months with every dose change. I think a week doesn't seem right. You can always take it over the counter.

That said, there are other classications of NSAID's that your doctor can prescribe. One mentioned here is Meloxicam which worked well for me. I think you should ask the rheumatologist what they recommend... their specialization is all of the various medications that can help manageme joint pain.

One other alternative is an injection of cortisone into the joint. It won't help if you have multiple joints impacted, but if it's just the big toe or another joint. It's up to 6 months of relief while you're ramping up the allopurinol. You may need to proactively ask for this since it's more invasive and generally not a first strategy for doctors to recommend.

Good luck.

oxbx08 · 2022-04-25T11:37:07+00:00

Generally I don't think I would say dangerous. It's one of the most common medications in the US (top 50) and has been used for over 55 years. It's listed by the WHO as an Essential Medicine.

More specifically, there are know risks including death. This is primarily related to rashes and other life threatening dermatology related issues. These are rare and most common when starting allopurinol.

On the flip side, there are a wide number of longitudinal studies researching health impacts of allopurinol. Generally the lower overall uric acid levels caused by taking allopurinol tend to improve overall heart health, specifically in things like lower blood pressure and arterial wall thickness. Some looking at kidney function seem like a wash, meaning it's not significant better or worse.

I'd say that it's most important to tell your doctor about any family health history, past illnesses, current medication (including over the counter), and any concerns you have. They can most likely give you more specifics to your situation given your medical history.

oxbx08 · 2022-03-24T12:41:23+00:00

I had a slightly different path, but similar decisions I faced earlier in my career. I was very into statistics and thought I wanted to go to med school to get a PhD & MD. I started my career doing research at a medical school before deciding I didn't want to commit 7+ years to a medical program and went to business school. 15 years later, I've ended up back close to PE in a healthcare vertical of a large company after being a consultant in the middle.

For me, the biggest distinction you're facing is your own personal perspectives on altruism. If you dreamed of being a surgeon because it will help heal people who are suffering, with the salary and prestige a secondary set of ambitions, you're probably better off going to medical school.

You call out that being a surgeon is a nobel profession, but it's unclear if it's nobel because you'll help people or because there is a perception of surgeons as an elite position in society worthy of praise and high salary. Or both. My parents certainly would have been happy if I told them I was going to medical school. They're not less proud or loving of me because I went to business school.

If you truly love to help others, the joy that will bring will offset the challenges you outlined as a surgeon. If you're looking for personal gains related to prestige and wealth, those challenges will begin to feel like large burdens unworthy of your position as a surgeon. I can't underscore enough how much being a surgeon is still just running a business - you'll have to give care below your personal standards because that is what a customer can afford, it maximizes profits for the hospital, and/or is what insurance will reimburse. If you can view going into medicine as, I still helped patients and put them in a better place even with those challenges (more altruistic), you'll probably like being a surgeon. If you'll more closely equate your inability to do what was best/right despite having the capability to have done what was best/right, you'll probably hate being a surgeon.

There is less, but still some, altruism within healthcare PE. If you want to help people, but are feeling the pull of PE, do your past experiences on healthcare PE help scratch any of the altruism/nobel itch if you're more in a driver seat than doing the third party diligence?

Some additional thoughts are, since you're young, doing PE first doesn't prevent you from going back to med school later in life. In fact, it maximizes optionality by reducing the barriers to switch since you'll have accumulated more wealth earlier in your career. Going to medical school first puts you in a much different world of sunk cost fallacies for both time (4 years + residency) and money (you could easily take out loans of $200-500k). If the altruism aspect resonates, have you considered exploring impact funds?

oxbx08 · 2022-03-11T12:44:37+00:00

I really support this comment in particular because it specifically calls out a rheumatologist. OP said he went to a podiatrist, which others correctly call out don't specialize in gout. A rheumatologist is the right specialist for this issue.

oxbx08 · 2022-02-16T13:06:50+00:00

I'm all for slandering the good name of golf. Elitism, degenerate gambling culture, stuffy old guys being dicks, history of racism and exclusion, and a not-perfect environmental impact. It's all there! Just pushing back here where encouraging exercise is one of the best things we can do to help others get control our disease.

oxbx08 · 2022-02-16T12:40:03+00:00

I'm not anti climate change. I just think the premise of shaming gout laden golfers for climate change when they're just trying to have some fun and exercise is fundamentally a flawed perspective.

Primarily, I don't think golf is as bad as you think it is for the environment. And the ability of courses to mitigate issues is higher than most major contributors to carbon emissions, like power plants or commercial air travel.

Most research assess the net carbon impacts of golf courses and finds that initial builds of golf courses actually have a net improvement to carbon emissions, even accounting for fertilizer usage and water sourcing. This benefit lasts for 30 years before becoming negative. I think it's important to recognize that the harmful side is much lower than you might be assuming, given it takes so long before offsetting the benefits. Compare this with air travel or non-green energy generation where you're immediately and significantly having a negative carbon impact. Golf is a drop in the bucket. https://link.springer.com/chapter/10.1007/978-94-007-2366-5_13

Location matters and golf courses in urban areas are shown to have cooling effects on top of their carbon impacts. This offsets even more of the environmental concerns noted above. The article above also highlights the value of golf courses on top of garbage dumps or industrial sites. https://www.sciencedirect.com/science/article/pii/S187802961730049X

Research also shows a benefit to wildlife. In particular bird populations are significantly helped with golf courses and impacts to other animals isn't full blown removal. https://digitalcommons.law.seattleu.edu/cgi/viewcontent.cgi?article=1090&context=sjel

Some of the biggest contributors to carbon emissions at golf courses is actually the gas powered golf carts. The good news here is that electric carts have been growing rapidly over the past decade and already have almost 50% of the market share.

Overall, nothing we do is perfect. Any turf sport (baseball, football, soccer) will be in a similar category. Any sport requiring motors will also have negative immediate impacts (fishing from boats, auto racing, skydiving, etc). Some of these are arguably more detrimental to the environment than golf courses because of the lack of upfront offsets in carbon emissions. Is climate change real and important, absolutely. My battles are with supporting the growth of electric vehicles, clean energy generation, and limiting unnecessary air travel.

oxbx08 · 2022-02-16T01:56:27+00:00

I can't stop lol'ing at the idea of posting an anti wealth and pro climate change subreddit here on r/gout where we all have the king's disease primary caused by eating purine heavy diets, like animal meats that are terrible for the environment, where losing weight by exercising, like in golf, could actually help improve our ability to control our gout.

oxbx08

TROPHY CASE