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Hi everyone, some will remember us. I promised to report back regarding my husband's use of allopurinol. We gathered lots of useful info from this site which gave him confidence and understanding of this illness. He had tried allopurinol as a youngster but not been informed of how it worked & so stopped.
Recap – 67 years old, gout since he was about 21. Gout more frequent in recent year – immobilised for about 4 months from end of last year. History of TIAs (mini-strokes) – small vessel disease. No tophi.
Commenced Allopurinol in March, increasing fairly rapidly to 300mgs. No side effects noticed at all. No real bad attacks although did get gout in his wrist which was swollen & red but very quickly settled & mildly in a knuckle (places couldn't remember ever having an attack before). Diclofenac was all he needed to settle it. Since then he has had quite a few 'niggles' but nothing developed – he takes a Diclofenac if he thinks it might develop into a full blown attack, but it never has!! Phew!!!
Really expected it to be a year of gout trouble due to his long history as he “dissolves”! We did managed to locate a source of black soya beans but don't think he will need them now (he does sometimes still use it “just in case” if he has aches).
Things are not always as bad as you expect are they! He has been as active as ever – very busy on the two allotments and he is also back at work as a painter and decorator.
He did see a nutritionalist & takes various suppliments & a very healthy diet!
Should mention, he does not drink at all now – not that he was a big drinker, but he has not had a beer since well before Christmas & only had one glass of wine at Christmas & a glass of sherry with friends (and he had gouty niggles the next day). He also says he actually feels better in himself.
Thanks for all the great info!
Juliana,
So good to hear that your husband is getting exactly the results with allopurinol that we all expected.
Amazing he still gets the niggles from just a small amount of alcohol.
Yes, thanks folks. It has been a great support to be able to air concerns & gather lots of very good & sensible advice. It empowered us to go ahead having been able to consider all options. Using the uric acid meter also helped (which we had never heard about – nor has his GP) it gave us good information about the effects of certain foods & also to monitor the effects of the Allopurinol. Its good to feel more in control.
He has been gathering uric acid crystals for at least 45 years that we know of so I it is a great relief to be able to take Allopurinol without any major hiccoughs at all so far. Has been taking it for about 4 months now. His knees are feeling much better & really nothing will stop him now – very active! This has been the best support forum I know of so thankyou very much and especially to Goutpal of course – thanks Keith.
If I could pass on any advice now, apart from learning about gout from this group, then it is – be careful not to ignore the uric acid level because the gout is infrequent. You may avoid damage to the cardiovascular system to get it to a normal level, by whatever means necessary. Personally I hate the thought of drugs but there is a time when it is necessary. By sticking around long enough here we learnt loads & gained confidence to do what was best in our circumstances – it has lead to improvement in quality of life & also may in fact be a life saver.
Bye folks – we wish you all health & freedom from the distress of this wretched illness. God bless.
Yep! , Jules.. @ You may avoid damage to the cardiovascular system to get it [SUA] to a normal levels !
When I mentioned to the Dr treating my high BP that high SUA can affect CV outcomes Dr said their was no evidence of this.
That's when I decided that I had to take matters in hand, as I know AlloP has been shown to reduce BP in teenage N.Y. patients, a year or two back , in a trial.
Also I saw online an article about acids affecting blood vessels by encouraging protective plaques and thus high BP. It was built around BP exercises I tried a year or two back- and I intend restarting these too.
It's the old problem of lack of practical awareness around gout -and your experience reflects the best side of people using their own endeavours to move forward.
I hope to find similar success eventually
Thats interesting Trev. Seems to me doctors really don't know a lot about very much unless they have a particular interest. Gout has been around for a while so really there is no excuse, there is research available. I think the medical profession is swamped by too many sick folk & so they have literally a few minutes to reach for “the Pad” and encourage them to leave, as our Nutritionalist says “a pill for an ill”.
In response Trev I thought you might find this article interesting. Its about microcirculation & in particular thought it might be helpful re Nattokinase. My hubby takes it now instead of Aspirin as aspirin competes with uric acid for excretion, it caused gout, but I think it depends on the dose. I believe aspirin only works for about two years anyway. He takes the omega 3, as I know you do too (vitamin E is also helpful). Still keeping up the anthocyanins by eating lots of cherries, bluberries, blackberries etc.
http://www.vrp.com/articles.as…..mp;zTYPE=2
We have persuaded my husbands “stroke doctor” to let us have blood test for clotting time after being on it for a few weeks just to be on the safe side.
All the best.
Thanks J, That article reiterated what I'd seen earlier. Like gout, treating symptoms is the easiest thing to with BP and this smaller artery approach seems totally valid, intuitively. Exercising 30 mins a day on the mind and also seperately on the body is harder to prescribe,along with diet changes. I think meds make good supporters, but bad controllers!
I had stopped taking [apart from scattered dips into the remainder] Ubiquinol, as it's expensive, but have got back on it again.
On the Natto- I don't take blood thinners- but will bear in mind, as I bank on the link with SUA elevation and High BP bearing fruit!
Trev, Just one more comment, as I know you have the BP problem. Hibiscus tea has been recommended for hypertension (3-5 cups a day):-
auravita.com
Don't know how effective it really is but my hubby has a couple of cups a day & says it takes surprisingly ok! His blood pressure has returned to text book, but may be due to being more active again?
Also along with the omega 3's etc there is a product called “VascularGuard” naturaldispensary.co.uk. Of course there will be trillions of supplements just waiting!
Thanks J- I have tried the tea as I saw a report last year about it. I found it too sharp and never got past a couple of cups daily.
Maybe now I'm not so worried about acidic intake [on AlloP trial] – I could venture again, but tbh, I do love our old standard British 'cuppa'.
I have learned on even that- to keep consumption down to 2 or 3 cups per day, though.
I will look up the VGuard, too.
PS: I've looked up Vascular Guard on another site , [couldn't find it on your referred one]
which looks OK, componentwise – if rather expensive @ £40 / months supply.
Trev, sorry about that, didnt realise so expensive. Ours were from Natural Dispensary for £15.31 for 30 and were further discounted by using our Nutritionalist's code as she passes on her discount directly to her patients. It adds up when you are taking more than one supplement doesn't it. A lot can be achieved from just eating a healthy diet as you know.
No probs J. I may well give the 'one a day' Vguard a try as, unlike meds, more is not always essential -as I think the benefits are more linear. For £20 it may make a difference ,as I do get fre NHS meds now 😉 so can indulge occasionally. If the anthocyanins could be made into a drug it would probably not work as well, anyway..
Also, supplements is a free market, which though generally trying to help -suffer from the' sales push' too readily. All human 🙂 so like the Omega3 half recommended is still more than most people get.
Blueberries aint exactly cheap ,either.
Trev, We have 4 blueberry bushes in large tubs (ericaceous compost mixed with soil & pelleted organic chicken manure & fed with org. seaweed feed). They ripen at different times so enough for a handful everyday. Did buy more when out of season during the constant gout attacks. Also collect blackberries & freeze from a park that very few people seem to have found!) Cherries we buy from a cheaper seller on the town High Street & freeze some. We do buy from local farm shop too – expensive though. Blackberries are easy to grow in the garden but had to pull ours out couple of years ago & didn't replace it. Makes it much cheaper if you want lots (I believe nutrients in blackberries are quite stable when frozen). We also have some black soy beans growing at the allotment but probably too late in the season, just an experiment!!
So ya see, can be done if can afford the initial outlay & the time & effort. Nothing fresh in winter though.Very laudable J! growing your own is good in so many ways.
I think I will split the Hibiscus sachets between two cups, as it's quite strong anyway.
On the anti- oxs , I may go for a cheaper version- without the Vit E, [which can actually raise BP in larger doses].
http://www.ventris.org.uk/heal…..sph030.htm
Have you ever tried this?
I think ,intuitively, that anti ox approach will assist in the AlloP getting acid reactions 'off' my arteries & viens.
On this important point I've seen numerous reports of lowered SUA helping High BP- but with the comment that AlloP has 'too tricky to justify' side effects, which we know about here.
Looking quickly at the figures it's possible that if all my local populace of 300K were on AlloP , one would die per annum from its' use and 250K, if gouty, would improve! A few thousand would die as a matter of course of old age, etc. I'll be happy to work with 200mg dose.
Not heard of the Higher Nature supplement you mentioned Trev. We do have some of their products though. He is trying to follow the regime from our Nutritionalist. She is very careful not to overdose & does her homework (not that I trust any one 100%!). The antioxidants she suggested (apart from Cherry Active concentrate) are:
Solgar Nutri Nano CoQ10 50 caps £26.54
Thorne R-Lipoic acid x60 £25.51
Higher Nature Supergar (garlic) 8000 x 90 (1 tab daily)
(Plus the Biocare VascularGaurd as mentioned before ). We don't have endless funds either but he is back at work again as he likes to work (not every week) & I am in the process of going back also which should help to fund the habit!
I notice one of the ingredients in the supplement you mention is oregano. I don't know if you have room but it too is very easy to grow. I sprinkled some seeds in a large basket in a very good growing medium (always use org pelleted chick manure too) & it did brilliantly, I wash & chop it into pasta & various things. I meant to dry some but never got around to it, it is flowering now & so the leaves are not as good. It should come up again next year.
Turmeric is quite nice in rice (with crushed cardamon seeds) but may not be a therapeutic dose.
The hypothetical stats you mention are interesting. Chances are you WONT be THE one, but you could be (& somebody will be)! Always difficult but I think on balance, knowing the potential risks of long term raised uric acid, its a gamble that has to be seriously considered, because its also a gamble to do nothing. I agree with you that all drugs have some undesired effect. I wonder what it is about Allop that can actually cause death (even if it is fairly rare)? That was the reason I never encouraged my hub to take it before, even though not actively discouraging him. When you start to have brain lesions though, or effects of cardiovascular disease, its scary (not to mention the suffering of painful & messed up joints & the unpredictable inconvenience).
BTW When I mentioned blackberries I meant black currants (stability re freezing well etc.) I really don't want blackberries in the garden but we are about to pick them again to freeze from park! Hub has just raided a wild cherry tree too!
Sorry to be off topic, had just meant to report back but tis important though. Diet is sooooo important to health & prevention of disease – no good without exercise & if have ongoing stress – now there is another topic!!! Stress really is a killer!
All the best Trev & to all who are seeking to following this tricky path to health.
One issue is Stevens 'somethings' syndrome which has 1/3000 , but majority survive- looks bad tho!
Another figure was 1/1000 for something else. sorry to be vague but the figures don't matter too much- they are low if you need to take the med, but not low enough odds for general use.
My main point was 100s of thousands of people benefitting- and a handful having probs.
I need to find more actual content on CV disease relating to High SUA- plenty of mentions in passing but no hard research.
Is this all due to the risks of using ULms which would have to be used for hard figures to be gained?
Sorry Trev, I've got to ask, what is ULms (I'm sure you don't mean University of Lancaster Music Society)!
I think Stevens-Johnson Syndrome is a killer. An old lady I met showed me a photo of herself when she had the Syndrome following antibiotics – horrific photos! I read somewhere that it usually shows up within 7-14 days after starting the drug. If you have been taking Allopurinol longer than that, then I guess you are reasonably safe from that side effect.
http://stroke.ahajournals.org/…..39/12/3303
Another pilot:
http://www.stroke.org.uk/resea…..o_inv.html
Probably the most relevant:
http://www.medscape.com/viewar…..e/472684_3
The latter is probably more interesting & has some references to other studies if time allows.
I suppose that it could be worth asking for checks from time to time on your kidney & liver function & for a full blood count (at least annually). Also to be fast to respond to skin rash with Allopurinol usage. Must admit the list of side effects is awful (as with most drugs) but most people don't get them – but some do! I suppose its a calculated gamble at the end of the day. For us, although difficult, we had to do something – an MRI showed 9 small ministrokes of which my husband had been unaware all but the last couple. He functions well & loves life & it was clear that he was on a downward path if it continued. His UA is around 4-5 now, has been down to 3 on a low -protein day (taking 300mgs Allop). Interestingly, he noticed that the night and morning readings are closer to each other now so seems to be more stable.
I respect your reservations re taking drugs 100%.
JULIANA, Glad to hear your husband is doing better. I know it's hard when we see someone we love in pain. And when you read all the possible side effects. Of the meds we have to take in a hope that we'll get better. It can be very scary. But in this lawsuit crazy world. The drug companys have to cover their behinds by listing every side effect that ever been reported with each drug. I see your from England. I don't know what it's like over there. But in the USA about every 5 minute or so on the TV. There's an ad to call a lawyer. If you of someone you know has taken this or that drug. It seems like were being used like a bunch of lab rats. That being said as far as Allopurinal goes it's been around a long time. I myself think it's a pretty safe drug. I've been on it for about 9 weeks and so far so good. I hope husband keeps having good luck with it to. LIMPY
I should know better , using acronyms… ULM means urate lowering meds. see? – Obvious
Patient reports of side effects [ie:unwanted results] seem to cause 'intstitutuional deafness' in medics.
When the list of useable meds shortens, in time- the affliction worsens.
I once had a nurse write the exact oppisite of what I'd said [in a report],even though it was crucial to the examination. I didn't read it for some time, however.
Makes one quite philosophical about life really…
Hi Limpy – glad to hear you are doing ok too. Thanks for your good wishes. Hopefully you will be able to change your name from “limpy” soon to “limpynomore”
.It was really encouraging to hear your view of a reason for the long list of drug side effects – ie to cover the Pharmaceutical backs, I hope you are right. My hubby has knee twinges today but it isnt stopping him. He's quite tired due to working again I think as he hasnt worked for about 18 months until recently. His crutches seemed to be part of the furniture! It has been a great relief & surprise too that he hasn't suffered more during the 'dissolving' stage so far. He has taken Diclofenac a few times when he thought it might take a hold.
Although we are in England, it has for a while been becoming more of a litigation conscious Society. Its sad when people act defensively in the fear that you may sue them (as people are certainly more likely to do). Recently we notice posters up in our local Accident & Emergency encouraging people to contact them if they had had an accident – it was all I could do to stop my husband from ripping them off the walls! We have been since & they have actually been removed. I don't think we are quite as bad as America though.
All the best to you too!
Trev, I think the moral of that story is – never trust anyone else with your health (you only have one life & chances are they wont be thinking about you when they go home). For some people its easier to acquiesce & not rock the boat as the professional assumes all of the power (& knowledge), the patient becomes subordinate which is a vulnerable position & also it can be nice not to have to worry by trusting someone else with your difficult decisions.
Having worked in the NHS for a long time, my observation is that there are a minority of conscientious professionals with your interest at heart, some great caring people, but they are in the minority in my opinion. To do you homework (as I know you do & probably everyone else here) is empowering – at least with knowledge you can confidently challenge the Charlatans & it can be actually be lifesaving – I have experience of that in my own family.
All power to you – you're not on your own!
My opinion is that there are THOUSANDS upon thousands of conditions that can afflict us. If one of them does, we are at an advantage over any GP who must (or SHOULD) learn something about all of them…but that must perforce be a CURSORY something. For us, we need become expert in only ONE of the conditions and it is not too hard to learn almost everything there is to know on such a single condition. We can become as good or BETTER than even the average specialists who still must deal with hundreds of conditions.
If we choose NOT to become expert in our own conditions, we have only ourselves to blame when we follow the designs of someone who is also not an expert.
For our own good, we must ultimately become our own GOOD doctors in the areas where we need care.
zip2play said:
My opinion is that there are THOUSANDS upon thousands of conditions that can afflict us. If one of them does, we are at an advantage over any GP who must (or SHOULD) learn something about all of them…but that must perforce be a CURSORY something. For us, we need become expert in only ONE of the conditions and it is not too hard to learn almost everything there is to know on such a single condition. We can become as good or BETTER than even the average specialists who still must deal with hundreds of conditions.
If we choose NOT to become expert in our own conditions, we have only ourselves to blame when we follow the designs of someone who is also not an expert.
For our own good, we must ultimately become our own GOOD doctors in the areas where we need care.
Yep1 I agree 100%. I'm a migraine expert (I've had them for most of my life) and I'm learning a lot about gout and NASH (nonalcoholicsteatohepatitis) because I have them. My Dr gives me the benefit of the doubt because she knows that I do my research. I'm very glad I found this forum, you guys are great!!
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