How long to presevere with Allopurinol

Gout Support Home Page Forums Please Help My Gout! How long to presevere with Allopurinol

This topic contains 17 replies, has 12 voices, and was last updated by Avatar of azasadny azasadny 3 years, 11 months ago.

Viewing 18 posts - 1 through 18 (of 18 total)
  • Author
    Posts
  • #2731
    Avatar of fatdom
    fatdom
    Participant

    Hello All,

    I have had Gout for ten years; I have treated attacks with Indomethacin which used to be very effective but is now much less so.  I decided about 4.5 months ago to try and take control of my gout.  I have cut down 90% of my beer (currently not drinking anything at all) as this was the prime trigger for my flare ups.  I have been taking 300mg of allopurinol daily and have had constant problems since then.  These include the most prolonged acute attack (~3 weeks) I have ever had plus since then constant joint and muscle pain (usually where I have had attacks previously but also new joints).  I feel terrible all of the time; I strongly believe these pains are related to allopurinol as if I am OK in the morning they get gradually worse after taking the allopurinol.  Also I have been suffering from depression (I personally think this is due to the extensive Indomethacin usage during the early stages of taking allopurinol as this drug has always had a profound effect on my central nervous system; dizziness, fatigue, confusion etc.).  I find if I take any NSAIDs then the depression/anxiety gets worse but I feel I need to to alleviate the very unpleasant symptoms from the Allopurinol.  I am close to giving up the Allopurinol as I worry that the allopurinol side effects aren't going to stop and are drug related rather than deposit breakdown related.  However I am tempted to carry on with them in case this is down to the breakdown od crystal deposits.  Has anyone had such a prolonged period of pain associated with beginning gout treatment?  Is this normal and if so should I continue?  

    Also have tried cochicine (didn't work) and am trying Naproxen today to attempt to alleviate the symptoms.

    Thanks for any pointers, also sorry if a repeat topic but I couldn't find a similar one.

    Dominic.

    #3782
    Avatar of metamorph
    metamorph
    Participant

    I am sending this message (instead of posting a reply)  because I do not wish to go against, too much, from mainstream discussion – which is focused mainly on medications for gout.

    I would advise you to try “black bean broth” as a last resort. It's natural, inexpensive and without any known side/adverse effects.  Most importantly, it had worked for me and many of those who believed in it and/or dared to try it.  I am not too sure how it's going to work for you, but no matter what do try your best to persevere. If the first dose does not give immediate results, try another dose. After 3 doses at the most (for the worst gout flared-up I had experienced myself), it should work!

    To find out more about the BBB recipe do go to – http://www.goutpal.com/natural…..-gout.html

     You can also read more about my topic “Black bean cure for gout” – under “Gout Cures” at the following link – http://www.gout-pal.com/gout-p…..gout-cures

    Hope BBB can help relieve you of you gout pains and all your other concerns and worries.

    All you need are – DETERMINATION AND PERSEVERENCE! 

    Cheers!

    Metamorph

    #3783
    Avatar of Tavery
    Tavery
    Participant

    I am sure several of us will chime in, but here is my initial thoughts…

    First off, by your user name “fatdom” I will assume you are (like most of us) a heavy male. Cutting back on beer while you take control is a critical first step and I want to acknowledge its importance. Everyone who has cut back on the beer has been more sucessful than those who have not. Eliminating beer alone though will not solve your gout problems and the rest of your diet needs to be self-examined. I personally modified my diet to eat less red meat (~1/3 as often and that is mostly by substituting ground turkey for ground beef) and avoiding shellfish as part of my lifestyle changes. 

    It would be helpful to know your uric acid numbers before Allopurinol and after you started taking 300 daily. Without those numbers we cant tell you if the flareup is because the drug is working well and flushing the acid out of your system or if 300 is not enough and you are having a regular gout attack anyway. 6% of people who start Allopurinol experience a severe flareup within the few few months as crystals begin to dissolve. Those usually go away and become less frequent as you get it under control.

    Aches in joints that previously experienced flareups is also expected and will reduce over time also. Crystals form in EVERY joint – not just in the ones that had an attack previously.

    The first couple months I was on Allopurinol I slept differently also. I was tired earlier in the evening and tended to sleep more deeply (and woke a bit more tired). That faded over time and I now sleep as I did before I started.

    We also need to know what other drugs you are taking. Most of what you described do not sound like allopurinol side effects – but could be a result of a drug combination. (HBP? Cholesterol? Anti-depression? etc) Other than that, I cannot address the mood symptoms you are experiencing because that is too far outside my comfort zone.

    #3784
    Avatar of Utubelite
    Utubelite
    Participant

    fatdom said:

     Also I have been suffering from depression (I personally think this is due to the extensive Indomethacin usage during the early stages of taking allopurinol as this drug has always had a profound effect on my central nervous system; dizziness, fatigue, confusion etc.).  I find if I take any NSAIDs then the depression/anxiety gets worse but I feel I need to to alleviate the very unpleasant symptoms from the Allopurinol.  


    I had similar symptoms of dizziness, confusion, fatigue etc. and I reported them in many posts earlier. I always thought that they were because of Allopurinol but most likely I was wrong. I was also taking Ativan to cure Anxiety symptoms, which were caused due to high dosage of Ibuprofen. Looks like, the body was reacting by showing symptoms of dizziness and confusion as a way of asking more dose of Ativan. It is very common to get dependent on these medications and the body demands it by showing these symptoms.

    I eventually took a bold step of tapering down and then stopping Ativan. I have not taken any anti anxiety drug in last 10 weeks. I use to get dizziness, confusion, out of balance and other anxiety symptoms as withdrawl effects but I somehow sustained them.

    For last 5 weeks or so, all these symptoms have almost disappeared and now I do not have dizziness or confusion problems.

    I WAS UNNECESSARY BLAMING ALLOPURINOL WHILE THE CORE REASON WAS ANXIETY AND ANXIETY MEDICATION.

    The worst problem with anxiety is acceptance of the fact that it is anxiety and it is not easy to come out of it.

    It is possible that your symptoms may not be due to Allopurinol at all, like it was in my case, though I always wrongly thought Allopurinol to be the culprit.

    #3785
    Avatar of trev
    trev
    Participant

    Fatdom- all prescription drugs are acid forming from all I've read.I've never associated pain killers with depression- only risk of over-dependence and rebound headaches etc.

    BBB is worth a try for sure- but I really think now you have broken the back of the UA lowering drug you should persist with it now.

    It takes persistent monitoring of diet, fluid intakes and exercise to go 'med free'  [Commando? :) ] and if you are suffering from anxiety depression [and I know about that] -it may be hard to keep focus and positive ,whilst suffering attack+side effects of other meds too.

    Of these things mentioned I think the thing you may be missing is fluid intake.

    Whatever you're taking now you may need as much as double the amount, in truth.

    Make it spring ar good well water if you're lucky enough to have a source and a filter is nearly as good, especially if 'sink top' type.

    Chlorine, fluoride & run off pollutants are no good when your system is out of balance and water quality figures for general consumption are for average known reactions. Gout sufferers are not average people -nor is your fluid intake requirement average.

    I've just got a UA testing meter [another post here] and that gave me a great sense of getting control back over my health + it is really necessary if you want to manage diet as a main control in gout.

    Meanwhile, try to persist with the AlloP- it's always darkest before the dawn and, later, you should be able to try a cutback in dose -if it really is not helping with other issues.

    Keep going Bud!Cool

    #3786

    Some great advice – thanks guys – but the real issue has only been hinted at.

    Allopurinol is a urate lowering drug. It should only be taken as part of a properly controlled urate lowering program. Unfortunately, it does not appear to be illegal to prescribe allopurinol without monitoring uric acid levels and adjusting dosage as appropriate, but it is immoral and unprofessional.

    You must get uric acid tested immediately. If your usual healthcare provider cannot do this immediately, I understand from several posts here that independent lab tests are available around $20 (why not try for a discount – you are going to be a regular)

    The absolutely vital thing to do, is to ensure that your level is below 6mg/dL, and adjust your allopurinol dose accordingly. You should also consider a few months with a target level of around 3mg/dL, which will get rid of the uric acid crystal deposits from your joints and other tissues.

    Come back with your uric acid numbers as soon as you can, and we can give better quality advice. Let's hope the Naproxen helps in the meantime, Dominic, but it can only be a short term plan to help you while you get your uric acid properly under control.

    #3787
    Avatar of fatdom
    fatdom
    Participant

    Hello All,

    thanks for the replies and words of encouragement.  Regarding the questions that arose:

    UA numbers I am getting tested on Thursday, plan is to wait a month again and then get another. It's not really my GPs fault about the lack of a test, he did attempt to organise them but I travel regularly with work and didn't persevere with getting them organised.

    Regarding the weight; “fatdom” is now historical; I've lost ~3 stone, since I gave up/cut down the ale, to a fairly healthy 12.5 stone for a 5'11″ male.  I also have a very good diet and excellent fluid intake.  I have got myself fit (joint dependent though).  It just seems that since I embarked on this lifestyle change I have found myself in more and more pain as well as managing to get myself into a mildly depressed state but also a very anxious state.  I'm not an anxious person, never have been and have also always been quite the opposite of depressed.  I do think there is a correlation with the Indomethacin and the depression (I don't know about allopurinol side effects but probably it would be secondary because of the increased pain I associate with it).  With the Indomethacin I suffer from virtually all of the CNS side effects that can occur when I take them; one of these is also depression.  I was taking the Indo alot during my early allopurinol regime and became more and more depressed/anxious.  Also, post christmas I decided to have some more Indo as I indulged as was having more twinges – my anxiety/depression immediately increased for 10 days until I stopped the Indo.  Next day I was much better mentally.  The only problem is is that the Naproxen doesn't seem to touch it; in fact I feel in more pain than I did yesterday after taking two doses (the Indo would already be working it's magic by now!).

    My plan is to keep on the Allopurinol and see how my numbers are over a Month (or would a two week period be better?).  I guess I will just have to live with the pain Frown, I will try the BBB though.  Also I am convinced that I have gout in one of my vertebrae as the pain in it mirrors that in my right toe and right knee which are all my worst affected joints.  If the pain in these dies down then so does the vertebrae pain; also likewise for an increase in pain.  I have had an x-ray and there were no issues; GP doesn't seem to think Gout can occur in the back; however I have read a paper on this very subject.  I just wondered what the general consensus on here was regarding back pain and gout?

    Once again thanks for all of your support,

    Regards

    Dominic.

    #3788
    Avatar of trev
    trev
    Participant

    Ha! If God trained on earth it would have been at medical school ;)

    I had a locum doc  last year [who's still with the practice] -and we quickly got onto gout, as he'd just had 2 years off with it. Un-diagnosed by 2 other doctors- IN the spine !! Say no more !

    He told me he'd been pretty well suicidal – and though it's unusual for this level of confidence from a medic- it shows what a great leveller Gout can be.

    Unless someone's had it, they have NO idea of the pain- but I have heard comparisons with both heart attack and birth pains – and they don't last weeks.

    A slight difference in emphasis we all know…

    The good news is this…  He is only on 200mg AlloP daily- and been working like that since a year back- so megadoses are not de rigour in bad attack cases, however painful.

    From what you've said, you're well aware of the need for lifestyle management and your first post got a swift responses due to clear posting, overall.

    Gouties do seem to be intelligent acheivers , in the main [no idea why!] and perhaps more sensitive than many, as well. Thus, depression is always a possiblility under continued painful  & widespread attacks.

    You've also confirmed this work point too, and I'm pretty certain that 50% of the gout inclusion in my life was caused by stress and fatigue. get more rest, maybe?

    If you're drinking plenty [and have no other medical issues that might be affecting your metabolism]- I would suggest that your commendable weight loss is high on the culprit list!

    Others here can explain better about the effects of  heavy exercise, weight loss and lactic acid- but you are better off without the extra ,now it's gone. I stick to middle distance walking mainly.

    I have read that out of all the Gouty pain killers Aleve is the least likely to cause side effects- but it is Asprin based and that is not the best till you have stabilised your UA. However, in heavier dosage, Asprin is apparently helpful in reducing UA , but then, the well know gastric problems may occur.

    #5764
    Avatar of zip2play
    zip2play
    Participant

    Dominic,

    Some thoughts:

    First and most important thought: DO NOT discontinue the allopurinol.

    Weight loss is perhaps the biggest trigger for gout; probably had you remained pleasantly plump the allopurinol would be working its magic after these 4 months. This is NOT an argument for obesity but rather a simple sad fact. We must lose weight when overweight but all the consequences are not necessarily good ones.

    Indomethacin has CNS side effects. I was on it short term and got very dizzy…I still have the first bottle. Let us know how the naproxyn works. I have suffered lower back pain since 1973 from an injury…whether gout has been involved these 35 years I don't know. Maybe yes, maybe no (or maybe halfway between.)Cool A controversial doctor claims spinal colchicine injections work miraculaously for thousands of his patients? Maybe?

    Yep, test your uric acid. Your doctor should have done it before prescribing allopurinol.

    Utube,

    Ativan (lorazapam) is one of the worst drugs ever invented. It drove my mother into the deepest depression…she took it efvery night and became addicted, taking it daily for 10  years. The problem with the drug is that it stops anxiety for about 4 hours and then rebounds with a vengeance. She'd take it for sleep and wake up in a panic at 3AM.I gave it to my partner and a single pill caused the blackest depression I've ever seen and it lasted days and days in a person who was NEVER depressed.

     I LOVE pills but that one scares the s#$t out of me.Surprised

    A far better benzodiazapine is Valium (diazapam) with a half life measured in days instead of in a couple hours…no ups and downs, just smooth sailing.

    Remember, allopurinol is for life and when judging side effects from it make sure you evaluate it in isolation. If someone is taking a drug for sleep and allopurinol, he should not be surprised to be groggy all day. If he's taking something else for pain, then THAT is a likely candidate for side effects. Problems with allopurinol after the first week (to check for hypersensitivity or allergy) are quite rare. It is among the most tolerated of drugs. And since it is THE gout cure (if you must pay for your meds) and it must be taken forever, be very careful lest you dismiss it without really needing to.

    (((I edited this to read correctly now…originally typed Ibuprofen when I meant to say Indomethacin. I guess I typed the “I” and my fingers ran with the ball while my brain took a brieef snooze.)))

    #7292

    fatdom said:

    [...] I am convinced that I have gout in one of my vertebrae as the pain in it mirrors that in my right toe and right knee which are all my worst affected joints.  If the pain in these dies down then so does the vertebrae pain; also likewise for an increase in pain.  I have had an x-ray and there were no issues; GP doesn't seem to think Gout can occur in the back; however I have read a paper on this very subject.  I just wondered what the general consensus on here was regarding back pain and gout?


    There is absolutely no doubt that gout can attack the spinal joints, though it would need a proper examination by someone who really knows their stuff to see if this is true in your case.

    If it is the case, the lowering uric acid to the right levels will fix it, as your x-ray has discounted physical damage that long-term build-up of uric acid crystals could cause.

    I must repeat my warnings about the recklessness of allopurinol without proper uric acid testing. What next, heart catheterization by guesswork without live imaging equipment? I applaud you trying to take the blame yourself, but if the doctor had warned you properly of the risks then I know you would have made the effort (sorry for remarks about $20 test – I didn't realize you were UK based until you mentioned stones of weight – which brings me to…).

    Given your 3 stone weight loss (that's 42 pounds of purine-rich human flesh that doesn't even need your digestive system to get straight to the blood stream), it is no wonder you're suffering with gout pain. Your uric acid levels must be up and down like a yo-yo, with painful highs and new crystals forming, then painful lows with old crystals dissolving. Underdosed allopurinol – the sadist's dreamSurprisedSurprisedYell

    I'm sorry some of this sounds even more depressing, but I feel certain that once you get uric acid levels properly managed, you can look forward to a pain-free life.Smile

    #7299
    Avatar of fatdom
    fatdom
    Participant

    I'll be honest I never even considered weight loss to be a contributory factor….makes perfect sense now though.  I can cope with the pain as long as I know there will be light at the end of the tunnel, however lately I have been assuming it will never get better as over 4 months did seem (to me anyway) a long time for crystal deposition breakdown to be causing flare-ups.  However now I understand that other variables such as weight loss could be playing a role it helps me focus.  

    I'll get regular blood test (will also probably get a reader myself) over the next couple of months to check I am headed in the right direction and keep up with the allopurinol.  Also do many people regularly take >300mg doses?  Is this something I should discuss with my GP during discussion of the blood test results.

    Thanks all for your advice, helps a lot.

    Dominic.

    #7301
    Avatar of zip2play
    zip2play
    Participant

    Also do many people regularly take >300mg doses?

    No, they don't…300 mg/day is pretty standard. I took 400 mg. for a couple years to start becasue my logic was I am a big pretty muscular guy who does weight work regularly and tries for a highis protein diet so I thought I am probably consuming more purines than most people.

    Going down to 300 mg/day caused no problems but going down to 200 did. So now I am at 300/day just like most gouties.

    But if 300 doesn't work well enough, you can go anywhere up to 800 mg. SOme doctors have miustakenly taken patients off allopurinol becase it wasn't working well enough at the 300 mg. dose. Big Mistake!

    #7306
    Avatar of hansinnm
    hansinnm
    Participant

    fatdom said:

    Hello All,

    Also have tried colchicine (didn't work) and am trying Naproxen today to attempt to alleviate the symptoms.

    Dominic.


    Dominic, if my memory serves me right, then Naproxen won't do anything to act on your gout. It's supposed to alleviate your pain caused by the inflammation of your joints/tissues (which is/was caused by your gout=uric acid crystal formation.) And, if I am not mistaken, Aleve is a cheaper version of Naproxen. (This is what doctors told me.)

    For gout you need medication like Allopurinol, Colchicine, Probenecid, and a few others. However, a physician should make the decision (after appropriate tests) which one to take and at what strength.

    #7308

    fatdom said:

    Also do many people regularly take >300mg doses?  Is this something I should discuss with my GP during discussion of the blood test results.


    A recent study in the states shows that almost two thirds of allopurinol users are prescribed 300mg. Only about 3% got more than 300mg, with most of them in the maximum 600-800mg range. However, the same study reveals hardly any backup testing for uric acid levels and a compliance rate of about 1 in 8. The sort of gout management that makes me despair.Frown

    The dose is definitely something to discuss when you get your results, as it is fundamental to getting uric acid at the right level to keep you gout free. 300mg is usually a pretty good maintenance dose, but a few months at a higher level will help get rid of old crystals.

    Seeing the light is a great thing – can't wait to hear when you reach the end of that tunnel.Smile

    #7320
    Avatar of phofab
    phofab
    Participant

    I read on these pages about the ongoing pain of gout. Yes!! I experience the real gouty scream your head off pain but I hit it as soon as I get the twinges with Voltaren Rapid 50 – anti inflamatory. In a bad attack maybe 3 per day, but generally I take one with the evening meal and that lasts 24 hours. It maintains the pain at acceptable levels. I generally only take them for a few days.

    It must affect the attack as within days my feet return to normal and the pain ceases. Only in an extreme attack do I have severe pain more that 2/3 days. Thinks - that is a while to be in severe pain???

    Maybe I have just got used to it. They say if you beat your head against a brick wall long enough you start to enjoy it.

    Before I was prescribed Voltaren I did have a foot nearly half again in size for around 3 months. I stilll can fondly remember the attack it was over the Gulf War period and all that was on TV in the dawn shift was Gulf War re runs.Confused

    Later !! I did have a point to make, “why aren’t anti imflamatories being prescribed as part of the treatment”. Pain killers and the forte versions don’t help me a great deal.

    #9239
    Avatar of wanelad
    wanelad
    Participant

    Interesting site, I haven't been a drinker for years apart from an occasion eg once a month glass or two of wine, rarely sea food but was a fan of proteins from Red meats but mainly chicken (this came from my days as a gym buff, old habits die hard).

    The second gout attack was 18mths after the first, and went through months of being reduced to my hands and knees 3 -4 days a week.  I tried the Black Cherry juice thing and was a vegetarian for several months.  Finally relented to allopurinol which has made it so that I dont have to get around the house on all 4s like a dog but still sometimes get some twangs as a reminder.  

    I am convinced though that I am getting side effects from the Allopurinol now such as confusion, forgetfulness and straight out difficulty in stringing a sentence together.  My body tires at nothing and experiencing other aches especially in the legs on not that much exertion etc.  Yes carry approx 8kgs too much

    Sometimes I wake at night with rapid breathing and weird dreams that seem real not sure if this is related to the drug or not; no have never been on anti anxitic's and do not intend to take that road.  

    Anyway thats my experience and I am not surprised in the least if some suffer some depression through the Gout experience; if the medication does not cause it then the loss of ones previous abilities is certainly enough to take one to that route.   Just so glad I have my faith to carry me through 

    #9241
    Avatar of vegetarianGuy
    vegetarianGuy
    Participant

    atdom said:

    Hello All,

    I have had Gout for ten years; I have treated attacks with Indomethacin which used to be very effective but is now much less so.  I decided about 4.5 months ago to try and take control of my gout.  I have cut down 90% of my beer (currently not drinking anything at all) as this was the prime trigger for my flare ups.  I have been taking 300mg of allopurinol daily and have had constant problems since then.  These include the most prolonged acute attack (~3 weeks) I have ever had plus since then constant joint and muscle pain (usually where I have had attacks previously but also new joints).  I feel terrible all of the time; I strongly believe these pains are related to allopurinol as if I am OK in the morning they get gradually worse after taking the allopurinol.  Also I have been suffering from depression (I personally think this is due to the extensive Indomethacin usage during the early stages of taking allopurinol as this drug has always had a profound effect on my central nervous system; dizziness, fatigue, confusion etc.).  I find if I take any NSAIDs then the depression/anxiety gets worse but I feel I need to to alleviate the very unpleasant symptoms from the Allopurinol.  I am close to giving up the Allopurinol as I worry that the side effects aren't going to stop and are drug related rather than deposit breakdown related.  However I am tempted to carry on with them in case this is down to the breakdown od crystal deposits.  Has anyone had such a prolonged period of pain associated with beginning gout treatment?  Is this normal and if so should I continue?  

    Also have tried cochicine (didn't work) and am trying Naproxen today to attempt to alleviate the symptoms.

    Thanks for any pointers, also sorry if a repeat topic but I couldn't find a similar one.

    Dominic.


    You have ignored Gout for 10 years and you expect AlloP to fix things day before yesterday? Give it time and you will feel better. Might even take another 6 months for you…..if not more.  I know someone offline who ignored Gout 20+ years because they were not having that many attacks Yell  In the end the person started feeling much better but it did take 8+ months of suffering before AlloP won the cleaning battle. Lesson?—-> People should not ignore Gout just because they have say 1 attack a year!

    I think your symptoms specially depression is not AlloP related. The only thing I would pin on AlloP is tiredness/laziness/sleepiness.

    Good luck and stick with it. Maybe cut down on non AlloP drugs.

    #9840
    Avatar of azasadny
    azasadny
    Participant

    Any updates”? Dom, how are you doing?

Viewing 18 posts - 1 through 18 (of 18 total)

You must be logged in to reply to this topic.