Gout Patient

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  • in reply to: Uloric and Hair Loss #2036
    Gout Patient
    Participant


    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.

    in reply to: Painful feet! Is it Gouty Arthritis? #1941
    Gout Patient
    Participant

    Hi Irma,
    I’m also a SA member so feel free to pm me.
    First of all switch docters – I’ve battled for 30 years with this deadful disease and the main cause was that docters think they are Gods gift to Mankind.
    You can take 300mg Puricos twice per day combined with a 5mg Colchicine each time and 2 tablets Panamor Diclofinic to help break the pain initially
    Ideally you must start with 100mg for week one, then 200mg for week two and three and then 300mg from week four.
    This is necessary to get your body used to it. Believe me it is necessary.
    I’ve been taking 600mg Puricos for going four months and it is only getting to work now.I’m also seeing some tofu shrinking for the first time ever.
    You can also get a cortisone injection which will give immediate relief – but it is poison.
    The Banting diet is excellent for losing weight – follow the Low carbs high fat on facebook. Personally I’ve lost 15 kg in 4 months with no effort.
    And yes, it is advisable to gettting a bloodtest done on your kidneys and liverfunctions. It can always be used as the base case when evaluating results. Prolonged use of Diclofinic will lead to a loss of kidney function. 70% in my case! Don’t let this happen to you.

    in reply to: Mini gout flare whilst on Allopurinol #1749
    Gout Patient
    Participant

    Hi Keith,

    The GP appointment was today. You’ll be delighted to hear that she said:

    “Increase allopurinol to 300mg per day, as we need that figure below 300 µmol/L. Arrange another blood test in about a months. Take the naproxen, if you need it.”

    So, let’s up the dosage and see what the next blood test brings.. 🙂

    Many thanks,

    Dave.

    in reply to: Mini gout flare whilst on Allopurinol #1715
    Gout Patient
    Participant

    I’m trying to remember myself..! 🙂

    I had a massive flare-up initially, eventually followed by the diagnosis. This was all done through my work’s private medical healthcare.

    Went to the GP, who did a blood test and got the 8 July: 5.6 mmol/L (Serum UREA level). Gave me some colchicine which appeared to help but then there was a second flare-up.

    so I went back to the GP, who gave me Naproxen and Allopurinol. I took the naproxen for about a week until the swelling subsided and then started allopurinol, which I’ve been on ever since (200 mg per day) leading to these results:

    28 July: 309 µmol/L (Serum URATE level)
    19 August: 337 µmol/L (Serum URATE level)

    In terms of symptoms, there’s no real pain, just a little soreness and a small smount of swelling which is only properly visible when I look at my feet side by side!

    GP appointment next Wednesday, we’ll see what they say!

    in reply to: Mini gout flare whilst on Allopurinol #1709
    Gout Patient
    Participant

    Hi there,

    Latest test results back:

    8 July: 5.6 mmol/L (Serum UREA level)
    28 July: 309 µmol/L (Serum URATE level)
    19 August: 337 µmol/L (Serum URATE level)

    A negligible difference between 28 July and 19 August?

    Something to be concerned about?

    Many thanks,

    Dave.

    in reply to: Mini gout flare whilst on Allopurinol #1662
    Gout Patient
    Participant

    Hi,

    Quick question – I’ve just had another blood test and am waiting for the results. I’ve subscribed to Patient Access so I can check online.

    The new ones aren’t there yet, but I noticed on the older ones that

    I now have the figures from the GP:

    8 July: 5.6 mmol/L was Serum UREA level (normal quoted 2.5 – 7.8mmol/L)
    28 July: 309 µmol/L was Serum URATE level (normal quoted 200 – 430µmol/L)

    Is there any different in these and should I be asking for one or the other?

    Many thanks,

    Dave.

    in reply to: Mini gout flare whilst on Allopurinol #1571
    Gout Patient
    Participant

    Hi Keith,

    Many thanks for the detailed reply. I’ve scheduled another blood test for a week’s time and will post the results here. I guess there will be some natural variation in results, but it should be on or around the 300 mark? If for some reason (and I can’t imagine how given my diet and allopurinol) it’s gone up, should I suggest a higher dose of allopurinol?

    Other than that, I just stay with the medication (200mg of allopurinol, naproxen as necessary) and the mini flares should stop in time?

    Best wishes,

    Dave.

    Gout Patient
    Participant

    Yes I have received wonderful information. I can’t get in to see a rheumatologist until August so when I found this website of folks that have gone through this, I was I would get some information to assist me. And I did.. Since starting the allipurinol the pain has subsided and the redness has decreased. The GP doc gave me the script for 300 mg, but I decided to cut in half after reading information. I am going to cut in half again based on your recomendations. Once I see the rheumatologist he can suggest my ongoing treatment.

    Thanks again for providing great information..

    Gout Patient
    Participant

    My toe has been flared up for 3 weeks. Pain level up and down. Went back to doc and received script for allipurinol. Had appt scheduled for today with Ruematologist and it was cancelled until August. I don’t know what to do. Do I continue the indomethacin and start the allipurinol? I have the 300mg but could split them if necessary. I feel like I am trying to treat this without any direction. Please help!

    in reply to: Gout Patient Discussions #1157
    Gout Patient
    Participant

    Hi all, indomethacin and diclofenac really work but you cant get it easily in the UK anymore, they fear liver side effects. I go on holiday to spain and buy a goodly supply of diclofenac over the counter in the chemist for the same cheap price as paracetemol over in the UK.Diclofenac really works for me and for my dad who is allergic to allopurinol. ibuprofen works too but it has a tendency to cause constipation. happy days mark in the UK

    in reply to: Gout Patient Discussions #1078
    Gout Patient
    Participant

    [original posted by jeremiah-taylor]

    29 year old white male / 6 ft. / 265 lbs. / United States

    This all started on 3.13.16 and the only thing that is helping is prednisone. I wake up with ankle pain and by the afternoon my ankles are swollen. I also have what feels like muscular pain in my thighs and it’s very difficult for me to stand up and sit down.

    Current meds: Metropolol Succinate XL, Fluoxetine, Amlodipine. Was prescribed Wellbutrin XL on 2.8.2016 and took that up until 3.28.2016 when my prescription was discontinued.
    Close to a month ago (3.13.2016) I woke up with pain and swelling in my ankles as well as pain in the heels of both feet. After two days of the pain worsening I went to the ER (3.15.2016) where, upon a visual inspection, the doctor diagnosed it as cellulitis and prescribed antibiotics. Two days later, the pain persisted so I visited my family doctor where I was prescribed Prednisone and had blood labs performed (3.17.2016). I took the Prednisone that day and by the next morning I could walk again. The pain and swelling had disappeared completely.
    The tests that were performed were:
    Uric Acid (6.8 mg/dL)
    Lyme (Negative)
    Rheumatoid Factor (11 IU/mL)
    Sedimentation Rate (42 mm/hour)
    Compr Metab Panel
    CBC/Diff – with flags for for the following components: (WBC: 11.83 K/uL; MPV: 11.8 fL; SEGS: 76%; LYMPHS: 12%; ABS. SEGS: 8.96 K/uL)
    The Prednisone was a tapered 10-day dosage, and on the day of my last dose (3.26.2016) the pain began to return and was even worse than it was before. On 3.28.2016 I went to the ER and was admitted for testing and observation.
    While in the hospital (3/28/2016), in addition to ultrasounds for DVT/blood clots (negative), they ran another series of blood labs:
    Uric Acid (6.7 mg/dL)
    CRP, Low Sensitivity (18 mg/L)
    Rheumatoid Factor (11 IU/mL)
    Sedimentation Rate (24 mm/hour)
    Compr Metab Panel
    CBC/Diff – with flags for for the following components: (WBC: 12.25 K/uL; SEGS: 80%; LYMPHS: 10%; ABS. SEGS: 9.76 K/uL)
    25-Hydroxy Vitamin D (16 ng/mL)
    Complement C3 (185 mg/dL)
    Complement C4 (32 mg/dL)
    ANA (Negative)
    CCP IGG AB (<16 Units)
    That night they gave me more Prednisone and when I woke up the next morning the pain and swelling were gone and I could walk again. They ran another battery of labs that day, with slight changes in the CBC/Diff. I was also visited by a Rheumatologist who diagnosed the whole thing as gout and gave me a 20-day tapered dosage of Prednisone and then discharged me. The results of the labs from the day I was discharged (3.29.2016) were:
    Hepatitis C Antibody (Negative)
    Hep B Surface Antigen (Negative)
    CBC/Diff – with flags for for the following components: (WBC: 11.90 K/uL; SEGS: 87%; LYMPHS: 9%; ABS. SEGS: 10.35 K/uL)
    For the first 5 days I was out, I was taking 20mgs of Prednisone per day and everything has been fine. The last two days I have been taking 15mgs of Prednisone. The problem is that last night I experienced some minor swelling and this morning there is a little swelling as well some pain. My fear is that once I taper off the Prednisone the whole thing is going to become awful again and I will spend more time in the ER/hospital with no one being able to figure out what is actually wrong with me. What else should I be telling them to test for? What are they missing? Can this really only be gout? The doctors I met with all seemed a bit perplexed by the whole thing so the final diagnosis was not exactly reassuring.

    Gout Patient
    Participant

    Patrick, Glad to see you were finally given meds after your suffering was needlessly extended. Anyone who thinks up to 3 gout attacks per year is acceptable has never had a severe gout attack. There are a lot of theories about starting allopurinol. Some say you should start out with 100mg/day and slowly increase, with the theory being that gradual increases may prevent gout attacks that sometimes occur when starting allopurinol. Some say you should start out considerably stronger to start having the crystals dissolve sooner. Read up on the prescribing info. From the document I have, the min effective dose is listed as 100-200mg/day; average dose for mild gout is 200-300mg/day and average dose for moderate to severe tophaceous gout is 400-600 mg/day. Max recommended is 800mg/day, and it is suggested that requirements for over 300mg be divided into multiple doses. Sounds like your doc is starting you out slow, and will want to monitor not just your uric acid level after this, but also check for any liver or kidney problems to make sure your body is handling the allopurinol ok. I assume he will then increase the dosage if all is ok. The dose that is actually correct for you is the one that gets and keeps your uric acid level at a point where your gout is reversed, and then the maintenance dose should be one that keeps the UA level to where the gout cannot form crystals again. While all gout cases are different, in my case I had it for several years and it became almost constant, striking at least every month for 9 months straight and lasting at least 50% of the time. So I was virtually out of commission. When I started taking the allopurinol 4 months ago, I actually got some pretty bad attacks that didn’t go completely away for 3 months, so I have only been without gout now for about a month. Finally they stopped and I think I am out of the woods now. From what I understand, for some people, as the uric acid leaves your body it causes your immune system to respond similarly to when it built up in your body. So it actually causes what feels the same as a gout attack. It takes time to clear all the stored up uric acid out of the tissues and joints. Once that (hopefully) happens then you are finally free. It is at first depressing, thinking the meds are not working, but if you know what is really happening, then it gives you strength to carry on knowing that you are really getting better and that it will eventually stop; it just doesn’t feel like it yet. Best of luck to you!

    in reply to: Where can I buy an Accurate Uric Acid Monitor? #993
    Gout Patient
    Participant

    I have read information on this website about uric acid meters and understand the pros and cons. I definitely want to get one to help ensure that I am taking the correct dose of allopurinol. I don’t want to wait 6 months to go back to my doc only to find out that “gee, we really should up your dose” or whatever. Once stabilized, I doubt I will need it often, but for now, starting allopurinol in the last couple months, I think it is important to verify the results and correctly adjust the dose if necessary. I live in the United States, and there does not seem to be many available here. I see one type on Amazon with relatively poor ratings and many complaints of inaccuracy. I see a couple types on Ebay and I have no idea if they are good or bad. I see one place advertising in Florida, but they have conflicting info on the website, and don’t tell you the brand. I call the 800 “support” number and get nothing but ads and no support, so it appears to be a bogus support line. Therefore, I do not trust that website. I don’t mind paying for a good meter and test strips, but I would like to know I am getting “the real thing” and something that actually works if used correctly. I would appreciate anyone else with experience using these to let me know if they have had good results, if they can recommend a good one (or a bad one to avoid for that matter). I realize the best thing would be to go to the doc every month or so, and have a lot of blood work done for kidneys, liver, uric acid, etc., but the doc says come back in 6 months. Plus each time I go it costs me hundreds of dollars so if I can get a reliable meter I can check at home and only go to the doc at 6 month intervals. Thanks.

    in reply to: Allopurinol itching and skin rash #986
    Gout Patient
    Participant

    thanks for your reply. my skin rash is only in a little area about half way between my belly button and pubic hair. i feel it is more of a heat rash. it had completely cleared then the weather warmed up again and it started again. caneston cream helps a lot. i do physical work as i am a cleaner. i go back to the doctors on tuesday then i will have been of allopurinol 2 1/2 weeks. thanks john

    in reply to: Why colchicine with Allopurinol and Indomethacin? #984
    Gout Patient
    Participant

    Thanks Keith very much for the thoughtful reply and subsequent article which directly addresses my issue. Again I am recovering from a mild flare up which I recovered from Feb 13/16 and which initiated on Feb 10 and was focused on my right big toe although it did not seem to really settle into any of the joints there, it almost seemed as if it was really settled on the side tissue of the right big toe if that makes any sense. Leading up to that flare up I was trying to reduce to 1 tablet, 0.6 mg, daily and within 4-5 days of that reduction a flare up. Over the flare up period I was taking 4 tablets daily, unfortunately, which I will abstain from from here on in. Five years previous to that when I first actually started taking colchicine for gout I was told to take a tablet every 2 hours until diarrhea (ugh!) resulted. At those times I can’t begin to estimate what my actual dosage was, only to say it was a lot. In September of 2014 I was told by a pharmacist that advice was no longer valid and only to take 2 tablets upon flare up and one more in 2 hours and no more within 24 hours as it is basically useless beyond that.

    From reading your article you have just posted there is possibly one thing that I maybe doing wrong in dosage and that is taking colchicine in the morning as opposed to before bedtime as you recommend. I am going to start today dosing at bedtime and again work towards reducing my colchicine intake, ideally towards zero at some point.

    As stated earlier in another post I had my first flare up at the age of 30, so I have suffered with gout for nearly 17 years now and up until very recently had never had a correct diagnosis from any doctor and I have found that the doctors I have had in Canada here don’t seem to be overly knowledgeable on the affliction. Within the three months of taking daily allopurinol I have definitely noticed great improvement and I am thinking that after suffering with gout over that many years without correct treatment my recovery will be a little longer than some. Thanks again for your input Keith, it is greatly appreciated.

    in reply to: Why colchicine with Allopurinol and Indomethacin? #970
    Gout Patient
    Participant

    Thanks for that Linda, I suppose I should have asked my doctor the same question. I am trying to reduce my colchicine daily intake to 0.6 mg currently, with such a reduced uric acid level I am not sure as to why I would be suffering any type of flare ups, certainly, however, the duration and intensity of the flare ups is greatly reduced. As I stated before I am not a fan of long term meds of any kind so I am certainly hoping to stop taking colchicine asap.

    in reply to: Probenecid Questions – How Probenecid Helps Gout #969
    Gout Patient
    Participant

    Just had a new UA and it’s 4.0! I am thrilled. Went out and had a little steak 🙂 Bad, I know, but it’s been so long and I think I have a cushion now. My doc is thinking of moving me completely to Probenecid as it worked faster in bringing down my levels, doesn’t cause a rash, and hopefully won’t make more of my hair fall out!!! I guess I am an undersecreter more than an over producer. Or both..who knows?

    Am having other orthopedic problems now and am up to 40mg prednisone daily. He’s sending me for MRIs on Friday to see if the current problem is mechanical or inflammatory. All my lab work is remarkable in its ‘unremarkableness’, unfortunately. But, with all the sterioids, I feel fantastic! Too bad I have to start tapering….

Viewing 17 posts - 18 through 34 (of 49 total)