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Interesting overview! Most here are only too aware of limitations in treatment/management but with the increasing incidence of gout and people being less willing to suffer, this should change.
A pity it's the old drug driven ethic 'ruling the roost' , rather than proper care and advice from medics who understand the body, medicines and human nature equally well!
Luckily in tthe UK Colchicine is still cheap, if underutilised.
Colcrys? Where are the regulators when you need them- holding out their greasy caps, often enough… Aspirin next?
Jon- I should explain myself better..I mean that events are less severe -rather than extended [as that is actually the case, often with treatment]. On my uriscoric I get quite bad twinges at night recently after many miles walking hard @ w/e's. They do not threaten to develop into a flare/attack though.
I've had a badlyswollen knee with pain this year- but it wasn't really gout. I suspect my immune system is a bit hyper, and *BP meds also affect fluid retention too. Antibiotic helped here. [Reactive arthritis?]
*You haven't mentioned these- do you use them?
Jon- it sounds like you have a grip on the fluid intake then!
Bear in mind that the thinking here from people who've done it is that AlloP can take 6months+ to get on top of the urate in the body.
This means aches and twinges like you have- but they should not last the length of time as before, in my exp.
Forbearance is something that every gouty finally gets…
I agree- getting rid of urate needs a water balance that helps remove it from our bodies, even when on meds for it.
If you are de-hydrated in the least bit, this is badly compromised. The best way is to watch your output and makes sure is over 1.5 litres a day and stays clear – but it's a habit we have to re-learn as we age, due to the mechanism for thirst being lessened for each decade by about 10%.
It really is a habit to regain- but the thought of gout getting complicated is one that will encourage you, eventually.
Ha Ha- Very good Zip! It's truly amazing what the human body can put up with -despite peoples' best intentions
This is a good resource to explain meds used in gout. I'm taking Sulfinpyrazone which is not available in the US.
The only contentious point is they recommenend ice during attack, which isn't encouraged here -usually.
The warnings on drug use and mixing are apt -and I hope it's useful and stays open to be read long enough! [It's a sampler]
http://books.google.com/books?…..mp;f=false
PS: They do stress keeping Colchicine to 6 mgs max per day -and not mixing long and short term use, as risking overdose!
I use this limit- and prefer to just use occasionally in attacks too, rather than prophylactically -which I don't need..
I put it in the same bag as why urates don't show up in ultrasound scans.
This may not be accurate, as MRI is markedly different.
It does seem that in Gout,everything that can work against successful management goes against the sufferer in some way or other.
Maybe, with the incidence of gout increasing year by year and links with other curses like hypertension the medical establishment don't want the lid off a can of worms- as treatment at the level we know is needed would need a vast heave on the levers in the NHS anyway- and an associated cost burden. That's why I can't see accurate diagnosis getting a look in , apart from the equipment costs.
From memory[somewhere in article]., I think the urate responds differently to different energies and a stereo view compares this live by differentiation between various deposit responses. Probably hidden in the patent?
I wish there was one near me- and if there was- that I could afford it!
Richard Bell said:
Hi Trev, yes, and nice to see your still typing away here helping gouties that can’t get help elsewhere. Hope your not having any tinges these days.
Not quite free yet Richard, the meds are keeping the urate mobile at present and my earlier management on diet etc is helping a lot.
I'll be interested to see how Sulfinpyrazone compares to in time to clear deposits. I did 7 miles walk [including steep climbs] yesterday and apart from being tired just had a few twinges in one toe last night that reminded me of the bad old days!AlloP
That included some pub wine[ watered by apple juice] and a huge veggy nut loaf- probably 80% protein…and loads of veg , of course 🙂
Sundays walk [not the steepest part, btw- 5 dropped out later]@Devils Chimney , Nr Cheltenham Gloucs., England.
PS: 2nd from last [with hat] – but I was first to the top !!
Yeah- Good to see success Richard. I recall you had a very bad time back then. [without needing to check back]
With 6mg/dl as a normal max SUA for a healthy woman- I fail to see how nearly double that figure is NOT worthy of note, unless they were protecting your worry function.
Then to ignore suitable treatment is inexcusable though, and Bunk is just about the right word for not addressing it earlier.
However, these are the same people you have to go back to and trust further- so, a bit of the usual bind, Hey!
Knowledge is Power, though….
Don't get me wrong Lynda- I was just emphasising that effective low dose SUA lowering is possible, I don't think my currrent med is recommended for those with kidney issues, but then- to be sensible, what meds don't stress the body, kidneys and liver in particular?
I think the wisdom is, that high SUA is the worst option though, and 'that' sneaks by without medication [or monitoring] for much of our lives, as we here have found out here, to our chagrin!
If you do get on the SulfP, it certainly has less intrusive side effects than other meds. Hopefully you will be abkle catch the Docs ear with a plea for lower SUA, whichever route is best for you!
One reason I dropped the Lasix/Losartan [though somewhat successful at SUA management] was the discomfort in my L. lower rib and back area, which I think was possibly kidney related- and an ultrasound scan had shown some scarring from 'who knows what/when'. Unfortunately, urate does not show up well, if at all on these scans- so I never got any closer on that one!
Good luck- soon on your treatment quest .
I think the wisdom is that SUA usually, [or often] goes down, not up, during an attack Lynda.
Bearing in mind that daily variations occur then one [or so] readings aren't enough to gauge on.
They could also be wrong, but mostly on the home testing. I trust our NHS lab results.
The other thing is that from experience and reading here , 100 mg of AlloP can reduce SUA by up to 2 pts- so that seems fair enough, but you aren't getting enough to get clear of gout, but this depends on your kidneys capability. A routine blood test will show impact of this on the estimated GFR- that's what I watch.
200 mg of Sulfinpyrazone gets me [typically] from 8 down to 4 SUA [early test] anyway- but remember to drink plenty H2O as well, to assist in urate removal.
Interesting that you actually open by assuming you have gout Caveman!- so you're nearly there 🙂 It IS triggered by trauma and overuse, as well as diet, stress and body mass index & BP being high. The crystals can be extracted and seen under a polarized microscope, if you can get this test.
With the high SUA and the effectiveness of Colchicine- you're well on the way. Docs are loathe to start a lifetime treatment regime on less than 3 attacks- and you are well on target. It doesn't sound like you've been driven to using a walking stick yet, though.
I take Sulfinpyrazone for gout which I think is harder on the kidneys than the , but at a lowish dose, this seems OK and is monitored.AlloP
I suppose with something like gout one thing at a time is hard- but use Colchicine for the attack aleviation, with a 3 day break after a big course like 12 [that's my max, anyway] and see of your SUA goes higher , as it may.
If so, your Doc, who sounds reasonable, will take good note- and.. remind him that for gouties 350 umol SUA is the max!
The SUA goal posts move, once you are diagnosed
Finally, taking meds is not great, but better than the alternative- if you are on course for some later years urate knocking back. It won't go on it's own, 8mg/dl [your approx reading] and higher, is where I decided diet and minor meds had to give way to a more rigorous approach.
This is also, if not solely, to see if my BP is actually worsened by high SUA- I suspect so.
It sounds like gout to me- but your Doc can decide ;~) they get excellent money these days- but here you can get a personal slant and get his undivided attention 🙂
I've noticed that once the SUA comes down on meds, the attacks coming in are shorter, more sudden and go easier on the use of Colchicine. This is maybe as there isn't a sudden switch, as a 'backlog' of urate comes on stream in a NEW site- but the repeated flares can get wearing- all on OLD sites.
The fact that recovery is quicker is a plus- though 'months to go' is quite a wait & it's definitely a touchy time on diet/ alcoholic drinks.
I say to myself- Urate took years to get there, though!
I understood higher levels of |TSH measured were indicative of HypOthyroidism where the body tries to stimulate T3 &T4 production by upping TSH.
Is it the case that high SUA can suppress this mechanism and provide a separate trigger for hypothyroidism?
I see that the new range for TSH in the blood is to be considered 0.3 to3.0 instead of higher. Mine is 2.7 U/mL, which is OK- afaik.
This hypothyroidism and gout discussion is now closed. There is more information on hypothyroidism and gout in the Pseudogout Guidelines. If you need more help, please start a new discussion.
I was interested in this as my Serum Bilirubin is slowly drifting up over the months of using AlloP. and now SulfinP. for 17 to 20.
A slow but steady drift slightly above optimal max [17 on the lab form] which maybe due to altered liver function.
30 is a working limit though ,to start worrying , and 50 when Jaundice would be apparent, from what I read on this. The fact that jaundice is mentioned on drugs side effects doesn't make be likely to happen early in, unless one is already compromised.
So that coincides with Zips comment about sloppy thinking on marginal results- but in an admittedly sensitive area.
The Docs DO know we only have ONE !!
PS : Regular monitoring of bloods is often mentioned on treatment guides, but not always stuck to, it seems. It matters.
Just to clarify John, from a post in the main site here- your liver is OK on severely lowered SUA under all conditions, but reacts badly to the treatments getting it lower, apart from the Krystexxa you trialled?
Chou- Welcome to the Best Gout resource on the net!
You'll get plenty of advice and support here, and rest assured most of us have felt just like you do.
The main thing to remember is it CAN be managed and the upside of your unfortunate news is you HAVE a diagnosis. That is something that many struggle to get , even in later life , when it is more common.
Good to hear you are strong- you will need endeavour to bring this illness into check, but with the right mental attitude and ability to get self help , you are already halfway there.
It's a sunny Sunday- and I'm off on a 7 mile walk, having knocked back the BP meds, Colchicine to deal with the Uriscoric med I'm now on- and I'm overweight too. Nothing like a bit of company, Hey!
PS: You know the drinking, other than good H2O is off menu -for a long while?
Zied- Cherries have a long history in Gout treatment. I like them but never noticed any real improvement, tbh.
I can recommend Black Bean Broth as helpful in the early stages of attacks [Recipe on here- if you search the big post by Metamorph]
In the end VERY strict diet & lifestyle chioces &/OR Meds are the only ways to get a grip before long term damage gets done by Hyperuricemia- in the gout prevalent individual.
Then, treatment is even harder to do, due to aging organs, drug sensitivities etc.
Lynda- the level of 8.0 SUA is just not good enough to help. Unless you have psuedogout [knee particularly-due to Calcium excess] you just have to get your figures running below 6, maybe as low as 4 before you're in a safer zone. Bear in mind SUA rides up and down depending on diet and elimination so you need a margin of error to stay in the safe zone.
Time and again we hear of tentative cases of medics dithering about- a shot of the pain WE all go through would sharpen up their acts, for sure.
NB: I respect most medics btw- but that doesn't mean they are JC!
If you feel rich- get a SUA Meter like many of us here, and that will sharpen your resolve, even more than already.
Once the Docs realise you're going private with your mind, money and health THEY will have more respect for you. The knowledge about YOUR body will give you confidence.
NO reason to suffer more pain than needed- or be on the wrong meds.
Interesting ,Zip- I wish I really understood the detail 😉
A while back, you posted a list of UL Meds and mine Sulfinpyrazone was 2nd last in favour listing. Why was this? -and can you expand on it's action too, please.[Maybe a new thread?]
It seems very effective at lowering SUA to the right ball park [3-4mg/dl in my case at moderate dose [200mg]. .
I started it a few days after the AP rebound attack, with little further flaring
Did 4 miles walk yesterday- with just a mild soreness.
Apart from my liver feeling it a bit [Blilirubin drifting up slowly] and the skin sensitivity mentioned elsewhere, it seems less intrusive than AlloP- which I did feel rather wierd on, tbh.
I noticed a similar effect on AlloP before I stopped it. I wasn't sure that it was the cause, Zip thought not- but after 2 weeks on Sulfinpyrazone I have it back again. Hot/tinglely hands and feet soles, and when I do a UA test, little beads of sweat appear after the alcohol wipe has dried. not my normal thing.
I suspect it may reduce later on- Veg Guy had a lot ot similar reactions over some months , I recall- on using AP.
I think it's the bodies way of handling the 'forced down' urate, maybe the skin acidity is driven up [already a naturally acid place] to elininate acid and this causes irritation.
Nothing like experience- keep us posted!
I don't mind trying meds, but as you say, they can be hard going.
I've never tried celery seeds, but if they are that good- maybe, with low dose UL meds, they could be a plus?
I hope I'm not sounding like Pavlovs' dog , but knees [especially difficult to treat] always get me slavering aobout psuedo Gout, caused by excess Calcium, rather than uric acid.
This is as painful and rather more intractable than gout from all accounts. I've talked to people in the surgery about this and it's easily missed.There is treatmenr for it, but I can't remember how easy blood diagnosis is.
Maybe you could raise the prospect of Psuedogout with your Dr?
One reading of SUA given does not make or break gout diagnosis to me. It's well known levels vary- and lower during attacks.
It sounds like another case of joint symptoms [no pun intended ] where gout in the equation just seems fllip medics imaginations into neutral. It does sound like the lower limb problems have resolved under ULMeds treatment, which is positive.
If your surgeon has seen inside your knee he must be able to advise on a follow up, surely?
As Zip says, an MRI is a lot easier, if far from cheap.
I've seen this advertised and wondered about it too.
My first reaction is that the shells don't contain the protein tissue that would affect gout. Calcium would be the main elememt, I would think- and many other minerals. Depends, then , on purity as well as provenence.
It's often a case of trying it out, and then reporting back.
Food intake is still down to the user- just! [Codix Alimentarius]
Ekes- Colchicine is pretty well specific for gout- probably if it didn't work you may not have gout.
If your medics are wary of intrusive treatments you may not have taking enough at the right time.
It's not a painkiller anyway, except indirectly, via reduction in immune response to high SUA reactions which is part of the gout sequence.
On your other query, I use CoCodamol [Codeine+ Paracetamol] in the fizzy tabs- but low dose, 1/2 tab at a time due to its high sodium, and my BP.
To be straight- pain is your bodies way of telling you to stop what you're doing wrong- so rest is a good thing….also ensure adequate fluid intake and no alcohol.
The gout [or RA] has built up over a long time and, being hereditary, is not going to go away. Management is the key and lifestyle has a longer term benefit than plain meds, if adjusted correctly.[The body has a habit of adapting to many meds.]
The other thing to mention is that high SUA doesn't mean automatic gout- many people live with high SUA levels without a problem and further as Zip says- the toes and feet are pretty well always implicated in gout, initially.
