- This topic has 20 replies, 3 voices, and was last updated 8 years, 2 months ago by
.
-
Posts
-
This discussion about allopurinol for life is now closed. Please see Is Allopurinol A Lifetime Drug?. If you still have questions, please start a new topic in this gout forum.
I am 51. I had my first Gout episode about six years ago when my knees suddenly became swollen. Since then I have had several severe episodes usually in my right foot which is extremely painful and impossible at its height to walk on. My doctor has treated it with indometacin but now wants to treat me with Allopurinol: Starting with 100mg per day and building up eventually to 300mg. He says that I have to take it for the rest of my life but it is better than the risk of joint damage. He says that I cannot at this stage control it just by regulating my diet. I have searched the internet for alternatives and they all seem a bit cranky and after my money! But I don't like the idea of having to take a pill a day for ever and I guess I am looking for some re-assurance!
I'll try to reassure you then, especially as I am in a similar position.
The indomethacin may have helped with pain, but it does nothing to help gout in the long term. In fact, as it masks the symptoms, one could argue that pain relief makes gout worse, insofar as it may delay the start of urate lowering therapy.
You now have 6 years of uric acid crystals to get rid of. Put it off for another year, and it will be 7 years worth. Put it off long enough and tophi will burst through your skin and cripple your joints.
I am also considering allopurinol, or other uric acid lowering treatment. I've put it off longer than I should have, in the hope that I could control gout by diet.
I've struggled against the thought of a daily pill for life, but now realise it is far better than the alternatives. Much easier to deal with this in our fifties, than endure a decade or two of increasing pain, and try to deal with it when we are older (I'm 50).
I'm not sure if I've reassured you, but I can assure you that you have helped persuade me to take allopurinol for life, in both senses of the phrase.
I have to tell you goutPal that I am so glad I found this forum to interact with fellow gout sufferers. I think it is safe to say that none of us wants to take a pill for life. When I was originally diagnosed with gout, my doctor told me that if I only suffered a few attacks per year, then why take a pill everyday. I was 21 years old at the time. The thought of taking a pill everyday at that age was never even a consideration.
I did not have another attack until I was 27. Fine I said, I can deal with this right. My next attack happened when I was 31. Good I said. I have only had 3 attacks in ten years no big deal. That is when the trouble started. I began getting more frequent and disabling attacks. More protracted and more painful. They would come at the worst possible times. On vacation, at weddings etc. I took my son to College in August. Guess who was limping around like an old man. Trips to the ER became more frequent. I remember getting shots of the drug Toradol for the pain. So I did begin to take allopurinol in my mid 30's. However, I never intended to stay on the drug and I ceased the therapy after several months. I have been off and on the drug many times even though it works perfectly for me.
My concern has always been liver damage and other possible side effects that I was not prepared to deal with in the least. Now, at 45, I have thrown in the towel. I thought I could beat the gout, but the gout beat me. So now I am back on the allopurinol after my latest attack. I am actually taking the brand name, Zyloprim. I intend to stay on this drug for the forseeable future. I am not prepared to endure permanent joint damage. I have no tophi thank God, but why risk it at this point. I am just tired of the whole routine. Indocin makes me very sick and I cannot take it as prescribed. Colchicine works, but if I take too much, it also makes me sick. I find that gout takes a physical and mental toll at this stage of my life that I am just not prepared to deal with any longer.
Wise words, Giovanni.
The “pill for life” objection is logically a weak one. It is one that I have felt, and probably ranks with my earlier objections (vanity this time) about wearing glasses for life. As we have the means to live a pain-free life through allopurinol, surely that is better than struggling for years just for sake of popping a pill. Just as wearing specs beats walking into lampposts.
Medically, it is a real shame that doctors do not put more emphasis on the need for uric acid control. If they focused more on removing the cause of gout, and less on the masking of symptoms with pain-killers, we'd all be much better off.
GoutPal said:
Medically, it is a real shame that doctors do not put more emphasis on the need for uric acid control. If they focused more on removing the cause of gout, and less on the masking of symptoms with pain-killers, we'd all be much better off.
The problem may be that there are just not enough of us out there to justify good research. Believe me I was shocked to find out that a new acid inhibitor had been developed and shown in trials to be more effective than allopurinol. That's another question I will have for my doctor. When fubuxostat is finally approved by the FDA, should I change over to that drug. I can hear the doctor now: “why rock the boat, if it works for you then why change”. Then I suppose I will have to consult a clinical pharmacologist. Does a new drug mean a better drug? What are the benefits of Fubuxostat over Allopurinol? How and why is it more effective? We know about Allopurinol in the long term but as with any new drug, we cannot possibly know if there are any long term negative effects from Fubuxostat, even though the trials have been very promising.
Hi
I raised the original post and your replies have really eased my mind and helped me make my decision. I started taking yesterday – starting with 100mg and working my way up to 300mg after about a month. I'll let you know how I get on!
Rowland
Good Luck, Rowland.
I'm particularly interested in the aftercare you receive – frequency of checkups, uric acid test results etc.
Has your doctor suggested what to do if you get a gout attack whilst you are taking allopurinol?
I look forward to your reports
Hi
My Doctor said that I might suffer a gout attack after I first start taking Allopurinol and so he told me that at the first sign of one I should take indometacin for the pain: 1 or 2 25mg pills 3 times a day.
Actually on reflection he was a bit ambiguous and he may have meant that I should take it any way as a preventative measure but I think I'll wait and only take it if I need to!
My next appointment with my GP is in four weeks when he will “see hoe it's going” and increase my dosage.
Thanks again to you and everyone for the support and advice!
I always find that I stay with a medicine better if I know what it does. Allopurinol lowers uric acid by removing an enzyme called “xanthine oxidase”. Xanthine oxidase is involved in a number of vital processes in your body. One of these processes, is the processing of purines, a vital part of your cells' genetic materials. Eventually, it creates the uric acid. The physician, by controlling the dose, could eliminate or severely reduce the enzyme from your body. This would get rid of your uric acid but it would impair the other processes with which the enzyme performs.
There is a genetic disorder called “xanthine oxidase deficiency” or “xanithuria” where the body has too little of this enzyme. People suffering from this disorder have a number of ailments which you want no part of. Too high a dosage of allopurinol, puts you at risk of the same disorder A good physician should know about this ailment and be alert to any of these symptoms of the disorder. If they develop, he may need to reduce the dosage.
Just as eliminating the enzyme is not a good idea, eliminating the uric acid is not the right goal either. Uric acid is not a waste product. It serves as an antioxidant and helps to improve the improve the immune system. (Don't confuse it with urea which is a waste product.) The goal of the physician is to provide a dosage that gets your serum uric acid level down to where the gout attacks are unlikely to occur. This may or may not be 300. A good physician will adjust the dosage to get it to what he/she thinks is a safe level of uric acid in your blood. First, decide the safe level of uric acid, and then decide on the dosage.
There are side effects. If these show up, he may switch you to oxypurinol. Oxypurinol is a modified form of allopurinol and some people tolerate better.
Allopurinol has problems other than the side effects. It has a poor rating in terms of people staying with the medication. As your physician has said, it is a long-term medication. You are subject to attacks while the medication is taking hold. After a couple of attacks, some people lose faith in the medication and stop taking it. Other people feel that they are cured and take themselves off of it. There is a temptation with any medication to feel safer and to endulge in foods you should stay off of. The medication is designed to work with the proper diet and lifestyle. If you do indulge and suffer a gout attack, don't lose faith in the medication.
The reason that allopurinol is a long-term medication is that gout is a crystal arthritis. The uric acid forms crystals which become lodged in the synovial membrane of your joints. Your immune system reacts to these crystals creating inflammation and pain. Eventually, the attacks will abate either on their own or with the help of medication.
Part of the immune's system response is to cover the crystals with a protein coating. The crystals remain but as long as the coating is in place, the immune system ignores the crystals. Allopurinol, if it is in the correct dosage, prevents new crystals from forming but does nothing directly against the existing crystals. Over time the crystals dissolve but it may take months or years. Until the crystals dissolve, you are not safe from gout.
I'm going to take Allopurinol for the duration since the gout flairs have been coming back more and more frequently and lasting longer. I hate that the flairs have lately been moving from joint to joint in a progression – it may start in one foot or knee, but I KNOW that the other joints will be affected sooner or later – or so it seems! My last big flair was three weeks of misery which affected most of the joints in my body – including my wrists and elbows, which was new for me!
I will definately be taking febuxostat once it is approved – it works better than allopurinol. I was part of a phase III clinical trial for this med and was on it for more than a year – during which time I had no gout flairs at all! Too bad the study ended – allopurinol is only paritally effective for me.
I wonder if your dose is right.
Presumably during the trials, you had regular uric acid checks. Are you still getting these now you're on allopurinol?
I would love some inside info on the clinical trials – a personal view, that might encourage (or otherwise) other gout sufferers to take part. I'm particularly interested in your medical care. How did it compare to the treatment you get from your regular doctor? Better or worse testing? Better or worse treatment? Clearly, the results were much better with febuxostat, but were there any downsides?
?uo ???u?? ?? ?nd ???nb ?u?? ? ???? s?????? ?p?s ????o ??os s?? os?? ?? '?????? ??uo?ss???o ??? ???? ????s ?nq s???? ?o? ?ou??ndo??? ?u???? u??q ??,?
joe stalin said:
i`ve been taking a??opurino? for years but sti?? have the occassiona? attack, it a?so has some other side effects that i cant quite put my finger on. [retranslated for allopurinol-free readers]
Ha, ha. I love it.
After frequent periods of standing on my head,
?u????????u? s??????-?p?s ?s??? pu?? ?
Thanks to sherv.net/flip.html, my symptoms are improving daily.
I am 40 years old, about 30 lbs overweight and have just been diagnosed with gout. My pain came overnight and I waited 8 days before going to the doctor as I could barely walk. (Big toe). I was given 75Mg of indomethacin to take 3 times a day. The walk in clinic doctor said that if I did not get relief in 24 to 48 hrs to start taking colchicine .6 mg every two hours. Needless to say, the indomethacin did not do me any justice, and the colchicine took some pain away and boy I was sick. I did not like the after effects of the colchicine. I waited about 2.5 weeks and seen my PCP. I waited because after I researched gout, I thought I could manage it with diet changes and some Uricelax and G-joint supplements. In addition I was given a steroid pak that I had not taken, and had it in reserves if needed.The pain was tolerable without advil but never went away. He took a blood test and my uric acid level came back at 9.4mg/dl. He told me to take the steroid pak and that should remove the rest of the swelling and pain. It did to about 95%. The office called and I was told I would need to go on ALlopurinol 300mg for the rest of my life. I did not like hearing this. This ended up me finding this site. I called the office back to talk to the nurse, and asked how often I needed to have my uric acid levels tested. She said that I did not have to. I was told if I had another flare up to come back to the office and get a blood test. I plan on starting the Allopurinol and in March(3 months) I will meet with my doctor, and ask for a test. If another episode comes up, I am going to ask for a Synovial fluid test to confirm the crystals and make sure I am Hyperuricaemia. I still do not like the fact of taking pills for the rest of my life.
Jimmy said:
I called the office back to talk to the nurse, and asked how often I needed to have my uric acid levels tested. She said that I did not have to. I was told if I had another flare up to come back to the office and get a blood test.
You must (must must must) find a better health care provider.
The most important thing about gout is getting uric acid down. Get over the pill a day for life complex – it is better than pain every day for the rest of your life.
You cannot manage this without frequent uric acid tests. Try covering up the fuel gauge in your car for 12 months and see what happens.
Why are some medical professionals so stupid?
Hi all. I am 44, first attack at 35 (after prawns in garlic, loads of oil, red wine…) Probably 2 stone overweight, slowly coming down. In UK. Father has gout.
RC, I had the same issue, tried to manage it through diet but had infrequent attacks. Then I noticed a small spiky bony protusion on my foot – aargh! – tophi! Plus my left big toe was becoming distended. I had surgery to scoop out the white gunk – crystals. Scared the @@@@ out of me. Now on Allopurinol – 300s – and the toe has gone down. I agree entirely with the view that we have years of build-up to flush out. I was browsing as I've just had a mild attack (right ankle) and wondered why. My GP says hey ho, it will happen. Only been on it properly since Oct so still settling I guess. Good call to get regular uric acid level checks. And I drink lots of water!
This looks like a great site, will have a good read!
GoutPal said:
Good Luck, Rowland.
I'm particularly interested in the aftercare you receive – frequency of checkups, uric acid test results etc.
Has your doctor suggested what to do if you get a gout attack whilst you are taking allopurinol?
I look forward to your reports
Hi
Just thought I would let you know how I have got on.
Good news: I have not had a gout attack since taking allopurinal despite being warned that I may get one immediatly after starting the medication. I have had one or two twinges but I took a couple of indometacin and it seemed to do the trick.
I did not regulate my diet at all – especially over Christmas – sort of as an experiment but I have moved back to a more gout friendly lifestle now!
Not so good news: Follow up from my GP has been very limited. He asked me how I have got on when I saw him recently but that is all. My repeat presciption expires in two years and unless I go to him he does not plan to see me before that.
Best Regards
Rowland
Excellent news
I really think you should insist on regular uric acid tests.
Without them, there is no way to tell if you have really got the gout under control.
A good thread.
Let me throw in my $.02 on a couple topics.
The proper response to “my doctor told me that if I only suffered a few attacks per year, then why take a pill everyday” is:
“Why, because gout is a disabling disease that eventually leads to DEATH by kidney destruction.” That response should do the trick. 😀
I have just read a good article by an expert rheumatologist who says that doctors are too focused on 300 mg. allopurinol. We are not automatons who weigh the same, metabolize our foods the same or have the same degree of uric acid buildup…why then would we all need the same dose. The literature says the effective dosage is 300 – 800 mg. of allopurinol to treat hyperuricemia. Why then do doctors consider allopurinol a failure if gout attacks still persist at 300 mg.
On febuxostat: Remember allopurinol was around for decades until some people began to show reaction to it, primarily skin rashes. That's pretty paltry for a FOREVER drug. Few drugs on a forever basis are as benign. I would not be too quick to switch to febuxostat until it had been in common use for at least a decade or I developed a REAL problem with allopurinol (none yet.) Remember too, the glowing performance of F over A was at that magical dose of 300 mg. whereas 2 or 3 different dosages of F were used. Also, it will be, at least in the United Ststes HIDEOUSLY expensive for the first 20 years of its patent life. Doctors of course will prescribe it like CANDY because they would earn points towards their next Mercedes. :D:D
I for one THANK GOD that there is a drug like allopurinol that costs $4 a month and saves me from a life of misery…I wish I had gotten on it 5 years earlier than I did (almost 15 years ago.) I've had no side effects from it.
Greg said:
I will definately be taking febuxostat once it is approved – it works better than allopurinol. I was part of a phase III clinical trial for this med and was on it for more than a year – during which time I had no gout flairs at all! Too bad the study ended – allopurinol is only paritally effective for me.
Febuxostat now has FDA approval. It is released as Uloric.
This discussion about allopurinol for life is now closed. Please see Is Allopurinol A Lifetime Drug?. If you still have questions, please start a new topic in this gout forum.
- You must be logged in to reply to this topic.