June 26, 2017 at 1:04 am #4393
jokeco68 .ParticipantŦallars: Ŧ -0.41Rank: Carer
Hi there, let me start off by saying my thanks to Keith Taylor and this website for convincing me to finally get on allopurinol after some 15 years of awful suffering and flare ups. Now, the downside.
48 years old, have been taking prescribed allopurinol since Nov.11/2015. Started at 300 mgs daily. Upped dosage about this time last year due to a fairly severe albeit short flare up of 2 days. Went to 400 mg daily in July ’16. By January ’17 I upped my dosage to 600 mg daily as I had a long, nagging flare up, not severe, was still fairly mobile but it dragged on for nearly 2 weeks. I think I found another trigger from that flare up (buffalo wing flavoured potato chips) and since that time have not had a flare up of any kind, yay!
However, within the past 2 months have found a new girlfriend, she’s great, everything a heterosexual male could want BUT my sexual performance is suddenly a disaster! I can get erect but can not maintain and certainly can not achieve orgasm. Guess how she likes that! So, last night, along with this issue another thing that has been bothering me is this recent change in waistline. Used to be a very steady 34″ waist for years, 33″ with some brands but these past few months have been straining to fit into my jeans, shirts straining at the buttons due to a pot belly and indents in my belly from my pants buttons. The weird part is I haven’t actually gained any appreciable weight, 10 years ago I was in really great shape and weighed 208 lbs, currently weigh 215 lbs! I google possible weight gain from allopurinol and what do I find out but that the medicine has been linked to lack of sexual performance, loss of libido, loss of interest in sexual intercourse. Ding ding!! I start reading this list provided by the Mayo Clinic on possible ‘rare’ side effects and I think I have half of them. Really lacking energy, strength in arms and legs. Went on some serious hiking trips with her last weekend and thought ‘no problem, I’ve done quite a few healthy hikes these past few years’ and I was like an old man out there!! The one hike was an elevation of 700m over 5kms and I am stopping every 5 minutes on the way up to catch my breath!! Additionally, I was changing to go into the gym this past winter and realized my lower legs were really swollen. One of the possible side effects? Swollen lower legs.
Now I had reduced my daily dosage in April ’17 back down to 400 mgs and after my research last night I am going to reduce down to the original 300 mgs and as soon as my job will allow me I will be going to see a doctor with some very obvious concerns. Please understand, I live in Canada, I moved from one province to another last August so I no longer have a personal physician, who was great I might add, would listen to my issues and take my insights into consideration. Currently I have been dealing with the usual revolving door of doctors in walk in clinics AGAIN, you must understand, in Canada, as long as you’re not bleeding to death on the office floor you’re healthy. So I have been requesting another blood test and have been told that they’re pointless, it’s diet, it’s beer now here’s your refill, get lost. Believe me, this has NOT been easy for me to do and my line of work does not allow me to take an hour or two off to go see a doc, I have to take an entire day off without pay, isn’t construction a wonderful way to make a living?
So, having said all of this, and if anyone has read the entire post I admire your interest and patience, now I have to ask, has anyone here had any similar issues with allopurinol after 18 months? I have read a few testimonials elsewhere’s from very concerned young men about the same performance issue, one guy got a testosterone boost from his GP but I have been really considering now all of my issues and it all makes sense. The swollen legs, the lack of energy and the lack of interest in sex. I really don’t want to be like this the rest of my life. If anyone has any advice at this point I would really appreciate it, thanks!
June 26, 2017 at 8:52 am #4396
Keith TaylorKeymasterŦallars: Ŧ 1138.53Rank: Scholar
Hi jokeco68, and thanks for your kind words. I’ve just sent you a welcome email. So, you can see where to edit your Profile, if you want to change your Display Name. Or, maybe jokeco68 is your nickname??!
I’m very interested, and very patient. But, I’m also often longwinded, so I hope you are also patient.
How did I persuade you to start allopurinol without also convincing you of the need to get regular blood tests? Because without that, I cannot give you any worthwhile advice.
So, I might as well write about the placebo effect. But I’ll try to stop myself. Except to say the power of the mind accounts for one-third of all treatment benefits. And, just as it applies to positive benefits, so the power of the mind applies to negative side-effects.
Just to be clear, are you telling me you never had a blood test! I realize Canadians are a special breed. But, that’s because I thought you are especially kind and good. If you’re going to run a health service without blood tests, please explain how that works. Or, have you just forgotten to post whatever results you have?
Anyway, without information, everything is just a guess, so here are my guesses.
1. I guess allopurinol is working fine because your gout flares are getting less frequent and less severe. Also, you went a long time with no obvious side-effects. But, that just means you relax your diet, eat badly, and gain weight. Then, the extra weight puts a strain on your body. So that, coupled with poor diet causes swollen lower legs.
2. I guess the failure to stay healthy, coupled with approaching 50 years old and a complete change in sexual lifestyle give you an occasional drop in sexual performance. But, instead of dealing with the real causes, you look for excuses. Because, if you Google side-effects of any drug long enough, you will find something that fits.
So here’s my plan!
1. Fly me to Canada and give me accommodation.
2. I will supervise your eating, exercise, and waistline.
3. Then, I’ll persuade your doc that blood tests are necessary.
4. You’ll get back into shape, and gout will stop.
Other personal gout support plans are available! 😉 🙂
Let me know how you want to proceed. I hope I don’t need to explain that my little plan is tongue-in-cheek. Because, seriously, we can crack this. But, we have to take it one step at a time. So my first step is to truly understand your blood test situation. Because it’s an essential part of any uric acid lowering therapy.
Your best first step is to tell me the contact details of whoever is prescribing your allopurinol. Because if they haven’t broken the law by refusing blood tests, they have broken every ethical code.
In the meantime, stop reading crap from people you don’t know about allopurinol side effects. It’s not helpful and it will make you worse.
June 27, 2017 at 3:25 am #4408
jokeco68 .ParticipantŦallars: Ŧ -0.41Rank: Carer
Haha! Thanks Keith for the reply. After posting I realised I forgot to enter my last uric acid readings. The last test results I got were in July ’16 and at that point it was still over 300 umo/l and the highest result I got was 424 umo/l. Now, as I said, one doctor flatly refused my request for a lab visit as he feels those readings fluctuate depending on what you eat. Seriously. The last time I got a prescription refill that doctor had given me a general check up request form so I am going to use that to book an appointment and get that done. From the check up he said they would also measure my uric acid level. As I said, when you don’t have a family doctor in Canada you are really left to look after yourself. It’s brutal here.
As far as the allopurinol goes, I would LOVE to think it’s simply psychosymatic or bad diet but I just can’t as that would be doing a disservice to myself. I have been dealing with low energy, swollen legs, constant headaches, fatigue and recently absolutely terrible sexual performance which has never been an issue before. Have you come across any other cases of long term allopurinol use that has developed symptoms such as this? I have searched out the forum but it seems as if most are in initial phases and dealing with flare ups. As I said before, haven’t had any issues for 6 months gout wise but the other issues have been getting progressively worse. Additionally, as I said previously, I haven’t gained any appreciable weight over 10 years now at least so I am not sure why I have been recently dealing with ill fitting clothing and swollen lower legs.
June 27, 2017 at 4:00 pm #4419
Keith TaylorKeymasterŦallars: Ŧ 1138.53Rank: Scholar
Great stuff, jokeco68, now I have more to go on. Then, as I get to know your situation better, we’ll get nearer to a plan that works for you.
As well as uric acid tests, I always recommend blood tests for kidney function and liver function. Because that is absolutely the best starting point for assessing and dealing with side-effects.
nobody makes lots of valid points, and the one that stands out is febuxostat. Because that could be a quick answer to the side-effects you blame on allopurinol. However, in the USA, febuxostat is overpriced Uloric and I don’t know if that affects Canadian costs.
Also, it’s absolutely essential to get liver function tests on febuxostat. Although adverse liver reactions are rare, they are too serious to risk without regular checkups. By which I mean monthly blood tests until you get uric acid stable. Then less frequent, but always at least once a year.
If febuxostat isn’t an option, we can look at better ways to manage allopurinol dose. But, I can’t see a clear timeline yet. So, was there a dose of allopurinol that worked for you without side-effects? If so, we should be able to come up with a package combining low-dose allopurinol with something else.
Finally, jokeco68, are you going to name and shame the so-called doctor who “flatly refused my request for a lab visit as he feels those readings fluctuate depending on what you eat.” Because we need to warn your fellow Canadians to stay well clear.
June 27, 2017 at 5:39 am #4409
nobodyParticipantŦallars: Ŧ 470.84Rank: Scholar
The attitude of your doctor(s) is insane! Random fluctuations would be a reason to do MORE tests, not less.
Surely there must be some kind of patients association or other consumer organization in your country which defends people against technocratic abuses and profiteers. They might advise you on the best way to proceed in order to obtain rational care.
That said, you aren’t clear about your old test results (how much is above 300?). I can only assume you concluded from your old results that you could get by with 300mg.
In case you weren’t aware, getting flareups 14 months into allopurinol therapy wouldn’t be unheard of in a case such as yours. It doesn’t necessarily mean the 400mg dose was insufficient. You might have avoided that flareup by taking more allopurinol during those 14 months but increasing the dose after a flareup isn’t necessarily helpful. Blood tests would have helped to determine whether more allopurinol was needed.
Any allopurinol side effects could take a few weeks to go away.
And you should get a blood test done about a month after lowering your allopurinol dosage to make sure that hasn’t allowed your uric acid to reach an unsafe level.
If the dose reduction you devised doesn’t solve your problem and considering you have been gout-free for a while, you could also simply stop taking allopurninol for a few weeks and see if you feel better.
You will probably need some drug to keep your uric acid under control in the long run but it seems people who aren’t experiencing flareups can often take relatively short breaks without ill effects.
If you are indeed suffering from unacceptable allopurinol side effects, there are alternatives to that drug.
The most obvious one is febuxostat. It might help or it might not but it’s important to get blood tests done if you try it in order to prevent liver damage.
June 28, 2017 at 11:05 pm #4437
d qParticipantŦallars: Ŧ 340.34Rank: Scholar
A little late to the party and ignorantly haven’t read the entire thread but you mention fatigue and low energy. Do you have any blood test results before starting allopurinol that include your haemoglobin, iron serum, ferritin and folate? If so, compare all those results to the ones you have done a few months after starting allopurinol to check for differences. If you could provide those vital numbers I can try and advise further.
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