September 25, 2016 at 12:49 am #2926
I’m new here and want to apologize if this has been discussed. I searched for this topic but didn’t find what I was looking for. I have been on Uloric for 3 months and can’t take Allopurinol. Well, last week my hair started falling out in clumps. I’m female by the way. I also take colchicine longer than I have taken Uloric so I don’t think that drug is the culprit. Do you have any suggestions for keeping the thin head of hair I have now? Could the hair loss eventually stop even if I stay on Uoric? I don’t feel there are any other options for me and know I could do more harm than good if I stop Uloric. My levels went from 9 to 4 during the last three months. My Dr. doesn’t think they will go lower without going from 40mg to 80mg. Any advice? Thanks in advance.
September 25, 2016 at 12:49 am #2036
I have had gout for over 30 years. My uric acid level was at 9.7 when my doctor put me on Uloric 40mg per day. In 30 days my uric acid level tested at 5.2.
But, I was surprised that I had a gout episode soon after I began taking Uloric. My doctor didn’t tell me that was a common side effect.
I then Googled Uloric and found that it is common to have gout episodes as the uric acid level goes down and uric acid crystals dissolve. My doctor didn’t tell me any of this, so it was good to know. But I have other questions.
I have been on the medicine about 8 weeks now. Every day I have gout-like symptoms, but it is not as painful as the gout episodes I experienced prior to going on Uloric.
Here’s my first question. The gout attacks now are different almost daily, in that it might be my toe joint one day. The very next day it may be my other foot entirely. The next day it may be my knee. This is totally different than my past gout attacks that would hit 1 body area and be there for a week or more (it never traveled like this daily). Is this normal?
I understand the crystals are disolving… but are they traveling around in my body? What’s the deal with the pain being in different areas almost daily? I don’t understand this at all.
The pain is about the same every day. I manage it with Advil… which is adequate. But will the gout episodes gradually get farther apart? Instead of every day?
Also, will the level of pain be less and less over time – as the months go by – or will this pain level remain until the last of the crystals are dissolved?
Thank you VERY much for any help you can give me. My doctor doesn’t seem to be able to help me much with this kind of information.
September 27, 2016 at 2:58 am #2041Keith TaylorParticipant
Sorry for my delay in responding. Thank you for your patience.
Your problem is one of my main triggers for starting me on a rant. The others are:
- Normal uric acid levels.
- Sharp, needle-like uric acid crystals.
- Foods to avoid that cause gout.
- Vegetable purines.
There’s at least one more lurking in my mind. I’ll resist the temptation to think about my list of common gout misunderstandings. Let me focus on your common problem of gout flares during uric acid lowering.
To understand it, you need to understand how the gout pain pathway works. Now, that doesn’t mean understanding all the intricate biochemical details of inflammasomes and the inflammatory response. Even the best scientists in the world are still working out exactly how pain signals are generated during gout attacks.
I’m talking about the basic building blocks of the gout pain pathway. I call it U-D-R-P The Gout Pain Pathway. In a nutshell: gout pain results when our immune system is overwhelmed by the volume of invading uric acid crystals. The signals for reinforcements produce inflammation, which is the root of gout pain.
If we look a little closer at our immune system, we see how white blood cells fight uric acid crystals. White blood cells work by engulfing foreign invaders in our bodies. This kills bacteria and viruses, if they don’t kill us first. But uric acid crystals cannot be killed. However, once they are surrounded by white blood cells, uric acid crystals are no longer a threat. That is why gout attacks subside naturally in a few days.
There’s 3 interesting points here:
1. This process happens even on days when you do not have gout pain. Every day that uric acid is above your crystallization point, is a day that uric acid crystals are forming somewhere in your body. If the numbers are low, the crystals just get engulfed without fuss. Most days, there are insufficient crystals to cause an attack. But, our bodies are storing an increasing load of uric acid crystals coated in dead white blood cells. This is what we refer to as the uric acid burden.
2. Most of the uric acid crystal fighting is done by white blood cells that we developed for the purpose. But, other specialist cells get caught up in the battle. That includes the cells that were destined to repair bone, cartilage, tendons, etc. So, joints don’t get worn away by sharp crystals. The permanent damage is caused by the maintenance crew called to war. Do Gout Crystals Kill Tendons, Or Just Their Babies? Note that it isn’t just tendons. Those little babies destined to repair your heart valves aren’t spared. Gout is fatally brutal. If in doubt, read Can Gout Kill You?
3. At last, we get to your problem, David. Regular visitors get to know that my trigger points cause mammoth posts. Other rants are available.
Some of the foregoing isn’t really a rant. Every gout sufferer must realize the vital importance of lowering uric acid. If you do not get uric acid low enough to dissolve the uric acid burden, you will die a horrible death. I emphasize this, despite knowing that you are sensible, David. Other readers don’t always get it.
When uric acid levels fall, old crystals start to dissolve. When they do, the cloak of dead white blood cells falls away. For a short period of time, dissolving crystals are exposed to our immune system again. Battle recommences.
It can be a slight skirmish. It’s why we sometimes feel a little feverish when starting uric acid lowering. It can be a full blown gout flare. But, it differs from the battle we grew used to when crystals were forming.
I mentioned earlier, we often do not have a gout flare when the burden is growing slowly. But, uric acid lowering is a much faster process (if it’s done correctly!). So, we often experience pain in joints that we’ve never noticed before. Also, it usually affects more joints at the same time.
I think it’s now time for me to finish with my usual: “If you want clarification on any of the points I made, please ask”. That is not a trite response. I just condensed 10 years of research into an hour of writing. I’m bound to have missed something. And the only reason I do this is to help you understand your gout (and polish my ego, of course! 😉 )
The real reason this has caused me to write a longer post than normal, is your bloody doctor’s attitude. I have said on many occasions – I’m not here to bait doctors. But, this is the exact problem that leads to many gout sufferers stopping their treatment. Doctors talk of non-compliance as if everything is the gout sufferers fault. But, why would you continue taking something that is causing you pain, if you don’t understand the situation?
What’s worse is, it’s easy to avoid. The professional recommendations for gout management include clear guidance on pain control during the first six to twelve months of uric acid lowering.
Some gout patients are lucky. Like you, David, they might get by with occasional Advil, or similar. Others have their quality of life destroyed. Needlessly.
September 29, 2016 at 6:26 pm #2066
Thank you, Keith. That was immensely reassuring. I just didn’t understand what was happening to me. I did believe that the Uloric was going to make me better, but couldn’t understand how the dissolving crystals were making me have the pain. Now I understand, thanks to you.
April 3, 2017 at 7:04 pm #2951Keith TaylorParticipant
It doesn’t matter if topics have been discussed before. So, you should always feel free to ask whenever you like.
Of course, I always recommend a quick search first. But, it’s certainly not compulsory. Anyway, I’ve spent quite a lot of time searching since I first saw your post. But I cannot find anything about Uloric and hair loss. Even when I tried febuxostat (which is the drug within the Uloric brand), I couldn’t find anything. So, in the end, I just searched for hair loss within the GoutPal Search Engine.
Surprisingly, that did reveal a link between colchicine and hair loss. In a long list of clinical effects of Colchicine Medication, I found:
Alopecia begins at about the 12th day and is complete by 3 weeks after ingestion. Hair regrowth begins after the first month.
Have you changed your colchicine dosage recently? Maybe it’s time to discuss alternatives to colchicine with your doctor.
As for increasing your Uloric dose, I don’t know enough about your current symptoms. Or, your history of meds, symptoms, and test results. So, I can only say, if you were me, you should increase for six months, then review. Do you want to explain why you are considering increasing Uloric from 40 mg to 80 mg? Generally speaking, it seems the best plan to me. But, I don’t know enough about you to say if it’s best for you.
Be sure to get kidney function and liver function tests at least once a year. Liver monitoring is especially important with Uloric.
May 2, 2019 at 7:20 pm #8986SchmidtParticipant
FDA Adds Side Effects Warning to Uloric
[2-21-2019] The U.S. Food and Drug Administration (FDA) has concluded there is an increased risk of death with Uloric (febuxostat) compared to another gout medicine, allopurinol. This conclusion is based on our in-depth review of results from a safety clinical trial that found an increased risk of heart-related death and death from all causes with Uloric.
As a result, we are updating the Uloric prescribing information to require a Boxed Warning, our most prominent warning, and a new patient Medication Guide. We are also limiting the approved use of Uloric to certain patients who are not treated effectively or experience severe side effects with allopurinol.
Uloric was FDA-approved in 2009 to treat a type of arthritis called gout in adults. Gout happens when a naturally occurring substance in the body called uric acid builds up and causes sudden attacks of redness, swelling, and pain in one or more joints. Uloric works by lowering uric acid levels in the blood. Gout is a chronic disease that affects approximately 8.3 million adults in the U.S.1 The number of medicines to treat gout is limited and there is an unmet need for treatments for this disease.
Patients should tell your health care professional if you have a history of heart problems or stroke and discuss the benefits and risks of using Uloric to treat your gout. Seek emergency medical attention right away if you experience the following symptoms while taking Uloric:
Shortness of breath
Rapid or irregular heartbeat
Numbness or weakness on one side of your body
Sudden severe headache
Do not stop taking Uloric without first talking to your health care professional, as doing so can worsen your gout.
Health care professionals should reserve Uloric for use only in patients who have failed or do not tolerate allopurinol. Counsel patients about the cardiovascular risk with Uloric and advise them to seek medical attention immediately if they experience the symptoms listed above.
When we approved Uloric in 2009, we included a Warning and Precaution regarding possible cardiovascular events in patients treated with Uloric in the current prescribing information and required the drug manufacturer, Takeda Pharmaceuticals, to conduct a large postmarket safety clinical trial. The trial was conducted in more than 6,000 patients with gout treated with either Uloric or allopurinol. The primary outcome was a combination of heart-related death, non-deadly heart attack, non-deadly stroke, and a condition of inadequate blood supply to the heart requiring intervention, called unstable angina.
The results showed that overall, Uloric did not increase the risk of these combined events compared to allopurinol (See Data Summary). However, when the outcomes were evaluated separately, Uloric showed an increased risk of heart-related deaths and death from all causes. In patients treated with Uloric, 15 deaths from heart-related causes were observed for every 1,000 patients treated for a year compared to 11 deaths from heart-related causes per 1,000 patients treated with allopurinol for a year. In addition, there were 26 deaths from any cause per 1,000 patients treated for a year with Uloric compared to 22 deaths per 1,000 patients treated for a year with allopurinol. This safety trial was also discussed at a public Advisory Committee meeting of outside experts on January 11, 2019.
May 14, 2019 at 4:30 pm #9001T KParticipant
Be careful with Febuxostat!
A brother in-law of mine had a severe (life-threatening) stroke recently, and the cause has been traced to Febuxostat/Uloric. He’s only in his mid-40’s and almost left behind a wife and three young kids. He has a long road of rehab ahead and will likely never regain full functionality.
I’m glad that allopurinol is working ok for me so far (fingers crossed!).
May 14, 2019 at 5:20 pm #9002nobodyParticipant
I wonder what were your in-law’s febuxostat dosage and serum uric acid. I’m not aware of any study taking this into account when looking at side-effects in comparison to allopurinol so it’s not clear allopurinol is inherently less dangerous. Certainly febuxostat is often used in a reckless way.
Also, were there any warning signs such as chest pain or strange test results?
May 14, 2019 at 6:36 pm #9003T KParticipant
To my knowledge there weren’t any warning signs of the impending stroke, although that doesn’t mean that there weren’t any.
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