May 14, 2013 at 11:19 am #14940bobotashParticipant
I have suffered from gout for 10 years. Approximately 2 years ago I noticed an up tic in “near attacks” which I effectively combated with colchicine/Colcrys and NSAIDs. My Rheumatologist put me on increased dosage of Alluprinol. Starting at 100 mg with blood tests for URIC Acid levels topping out at 400 mg.
As the medication increased there was a notable decline in my overall well-being. Stomach discomfort turned into inflammation. Also, severe pain at times and nausea. But what finally sealed the deal was a rash which developed just before christmas on my face. It was preceded with pins and needles around my mouth and nose. Finally, it turned into a visible rash up the sides of my nose and was very uncomfortable.
I contacted the Dr and stopped the medication and then went to a Cardiologist and Gastroenterologist to see what if any damage had been done. No damage but 90 days of feeling horrible and becoming quite sedentary (which is not good) and depressed. We agreed that I would need to stop all medication for a cooling-off period of 90 days after the first 30 days I started to feel better.
3 weeks ago (now in 4th week) I started the 40 mg dosage of Uloric all was well until this past weekend. After swimming laps on Saturday I was out of the pool and sweating profusely and it took hours to stop. Then on Sunday I went to Water Aerobics and felt a shortness of breath. Which is unusual as I do this class frequently. So I stopped to rest. But found a tightness in my chest – this eventually went away. I really did not correlate this to anything other than maybe over doing it in warmer weather???
So this morning (Tuesday) I woke up and felt the pins and needles around my face and felt a rash like sensation around mouth and nose but nothing is visible. But it feels like windburn and I recognize the sensation from the reaction to the Alluprinol.
I am working to increase my activity level to get my weight back under control (I had more severe attacks when I was much lighter (180 lbs vs. 240 now), I am becoming so frustrated. Gout has already damaged both big toe joints and I seem to have issues with the meds. I manage my diet and have never eaten red meat nor have I had a drink of Alcohol in 15 years.
It has been suggested that I look to increase alkalinity in my system and I will try this – but really the Uric Acid reduction medication seems to be the key for most – what alternatives are there to Allupurinol and Uloric (which I discontinued today)?
May 15, 2013 at 7:21 pm #14943ArthurParticipant
Your experience in many ways is similar to mine. I was given Allopurinol as a solution to my many years of taking Colchicine. The Holy Grail was to be lowering uric acid levels. They did come down but not without Colchicine when gout flared. The I was experienced tingling in my feet and my right foot and ankle seemed out of control. I was diagnosed with Peripheral neuropathy and told to stop Allopurinol. Hence the Uloric to replace the Allopurinol. I still get gout with the new lower levels. But the damage has been done to my feet: burning and lack of balance due to not being sure where my feet are striking the ground. I went from a healthy 83-year-old running 5K races in 31 mins to being unable to run and just glad to walk poorly. Thanks for letting me rant.May 27, 2013 at 2:22 am #14952Keith Taylor (GoutPal Admin)Participant
There are newer medical alternatives that your rheumatologist should know about. If your rheumatologist can’t help, I suggest finding one who is up-to-date with the latest gout medication developments.
For borderline uric acid levels, dietary control might be effective, but that depends on your starting uric acid level. If either of the 2 contributors to this topic would care to share their recent uric acid blood test results, I might be able to suggest some answers.December 9, 2014 at 1:07 am #18689TIm WGuest
I am 53, 67in and have weight as much as 295lbs. I have been dieting and am currently at 240lbs and still losing… For 20 years my Uric levels were at 11+, Allopurinol or dieting had no effect on the levels. Drinking a LOT more water had no effect. I have a couple of cases of gout(last 4 years ago) and everytime what set them off was eating shrimp. Yup – no more shimp since last attack. For reason unknown to me about 3 years ago my level dropped form 11+ to 9(currently 8.7). This happened before the dieting which I started Aug 7, 2014… Is 8.7 a level if I have no goat problems in past couple of years? the one think I should mention – I was born with one kidney so I check creatine and other levels every 6 months and they are always completely normal. My doctor is pushing me to get my levels to 7 or below if possible. Yesterday I did a 24hour collection of urine so he can find out if I am not filtering out the acid(kidney issue) or if I am just making to much uric acid. I guess each has its own treatment. Anyone have any thoughts or recommendations. Am definitely thinking about getting the home testing kit so recommendation on that are welcome.
TimDecember 10, 2014 at 12:43 am #18707Keith TaylorKeymaster
Starting last first. I think it is your doctor’s job to test uric acid. It is a very precise process, and most people simply do not have the patience to adopt a rigorous testing regime that is required for consistency. They can definitely help some people, and I can definitely help people learn to use them properly. However, I need to turn the question back to you, and ask why you want a home testing kit. What do you think you will learn about your uric acid control that you will not get from doctor visits?
You are right about the 24-hour urine test. This determines if you are an over-producer or under-excreter of uric acid. It helps to determine the best form of treatment for you. There’s not much more I can add until we know the results. However, I must point out that your uric acid target should probably be 6mg/dL. That is the target advised by American College of Rheumatology for gout patients with kidney problems. This is a very complex area, and I recommend consulting a rheumatologist with kidney experience, or nephrologist with gout experience. If your clearance rates are normal, it might be acceptable for you to aim for the safer target of 5.
Tim, you should also realize that your gout has not gone away between the flare-ups caused by shrimp. It is there every day, slowly damaging your joints. I think you have been lucky not to have more attacks during your 20 years. However, that can happen with some people who do not get gout attacks despite high uric acid levels. Personally, I think this is worse. That might sound stupid, but I say it because the gout attacks are a strong signal to most people that they must get uric acid under control. Without those warnings, you risk joint damage from untreated high uric acid. I wrote about this in Is Gout Painless?
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