September 1, 2010 at 4:36 pm #3380
Thanks for all the posts. Reading thru them really helped me to understand all about gout. I still have one unresolved symptom that I wanted to ask about. In addition to big toes, I have had trouble with knees, but not sure if it's gout or osteoarthritis. I have pain in my knee only when I am laying down at night. Has anyone else associated this with gout? I have been taking 100mg allopurinol for 6 weeks and just had my UA testing again yesterday. First level was 10.4 which I am aware is very high. I have also had a kidney transplant. Does anyone know if allopurinol is hard on the kidneys? Thanks in advance for your help!September 2, 2010 at 7:57 am #9780
Allopurinol is often prescribed to HELP ailing kidneys…and I'd like to see you get up to 300 mg. ASAP becasue with a 10.4 there is almost no hope that 100 mg. will do anything but aggravate your gout.
Knees are tough to diagnose. If months of allopurinol (and a consistent uric acid below 6.0) tends to make the knee feel better then a gouty knee is suspect. But there are just SO many conditions and injuries that cause knee pain it is often very hard to diagnose.September 7, 2010 at 2:14 am #9869
z2p….thanks for your response. Just had my 6 week UA blood test and I'm down to 8.0 from 10.4….not bad considering I'm only taking 100mg of allopurinol. I will talk to my Nephrologist about increasing to 300mg, but I suspect that, since I have had improvement, he won't make the change. I'm feeling good at this point, except the pain in my knee when laying down. I'm glad to hear that Allopurinol is good for the kidneys. That will make a better case for me. LyndaSeptember 7, 2010 at 4:56 am #9871odoParticipant
I will talk to my Nephrologist about increasing to 300mg, but I suspect that, since I have had improvement, he won't make the change.
Pretty sure he will and you should insist if he doesn't. 8.00 is not low enough and 100mg won't work any better in another 6 weeks than it does now.September 7, 2010 at 5:46 am #9872Keith Taylor (GoutPal Admin)Participant
Please listen to what zip2play and odo have said.
If your nephrologist is unsure about increasing your dose, point him at these articles on allopurinol & kidney issues.
To get rid of the old crystals in your body, and stop new ones forming, you must get uric acid levels below 6mg/dL. The sooner you do this, the quicker the old crystals will dissolve, but you may get joint swelling & pain until all have dissolved.September 9, 2010 at 3:50 pm #9918
Thanks Zip (nice photo by the way), Odo & GP for your replys. Since my post on 9/1, the pain in my knee when laying down has lessened. Could be a coincendence I guess. I will have one more UA test prior to my Nephrology appt in Oct. Will speak my mind about upping allop to 300 if UA isn't down more. All in all, I am feeling much improved since my diagnosis 2 months ago. Maybe I'm the lucky one! LyndaSeptember 10, 2010 at 4:17 am #9925Keith Taylor (GoutPal Admin)Participant
The gout pain lessening isn't coincidence, Linda. That usually happens, unless something triggers another attack.
The pain is caused when your immune system reacts to uric acid crystals. For most gouties, this is when crystals are forming. White blood cells attack the crystals and this leads to painful inflammation. They cannot kill the crystals in the same way that they kill an invading virus, so they coat the crystals, effectively hiding it. When you lower uric acid (through allopurinol, diet or some other means), previously hidden crystals can lose their protein shield as they dissolve. If they do not dissolve completely, the immune system attack occurs again. This process takes a few days, so that is almost certainly why your knee feels better now.
All that, is the reason I say gout must be managed by uric acid testing, as pain alone cannot tell you if your gout is getting better or worse.September 11, 2010 at 2:27 am #9936
Thanks for your post GP, I'm hoping that you are right! I'm 63 with a history of ostoarthritis in my family, so some pain could be from that too. I'm hoping for a SMALL amount! LyndaSeptember 11, 2010 at 4:46 am #9938
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.September 11, 2010 at 2:29 pm #9947
Thanks Trev….I get the message. I'm glad that I have the time to read thru the forum. Lots and lots of good advise here! LyndaNovember 20, 2010 at 2:30 am #10644
My Nephrologist has told me that 200mg of allopurinol was my upper limit, due to the kidney transplant. Was put on 150mg about 1 month ago, this has lowered UA to 7.4. Had my annual appt with my GP recently. He increased my allo to 200mg. Will re-test in 2 weeks to see where that has gotten me. My GP has taken over my Gout treatment and he is pretty knowledgeable. Said that he wanted to get my UA down to 4-5. It may be interesting to see his approach. Will let you all know. I'm still feeling good and my knee pain when laying down has completely stopped! LyndaNovember 20, 2010 at 6:20 am #10645
Glad things are improving Lynda. I know with the transplant you have to tread carefully, indeed.
For this reason it's a shame that you can't take uriscorics- as they seem to really whistle down the SUA.AlloP is best for you, though- as it cuts production.
Are you really doing enough of the right things to help? Diet [strongly adhered to] can take about 1-2 points off SUA , coupled with water intake kept up.
I'm back on Lasix/Cozaar combo again after the Doxasozin faltered somewhat- so I know what extra problems can add to Gout issues and treatment.
Mu SUA was 2.8 yesterday and that just with 200mg daily of Sulfinpyrazone on top. It was nearly 9 after stopping AlloP, a while back.
On the knees, I have to mention that calcium deposits are not impossible, along with normal gout – they usually present in the knee and take a different med to handle.
Psuedogout- just as painful, apparently as gout. Lets hope it was just MS urate a touch' long in the going'.November 20, 2010 at 8:46 am #10649
Interesting study report from the Journall of Nephrology, June. 2010:
ALLOPURINOL FOR CHRONIC KIDNEY DISEASE
Allopurinol is a drug used primarily to treat individuals with excess uric acid in their blood (hyperuricemia) – the agent inhibits an enzyme involved in the production of uric acid. Hyperuricemia can lead to gout and, in extreme cases, kidney failure. Elevated uric acid levels in the blood may also increase one’s risk of developing hypertension and heart disease. Patients with chronic kidney disease – who most often die from heart disease – often experience hyperuricemia because of decreased uric acid excretion in the urine; however, studies have not looked at the benefits of allopurinol in these individuals.
To investigate, Marian Goicoechea, PhD, Jose Luño, MD (Hospital General Universitario Gregorio Marañón, in Madrid, Spain) and their colleagues conducted a prospective, randomized trial of 113 CKD patients who received either allopurinol (100 mg/day) or who continued taking their usual therapy. The researchers assessed kidney disease progression, cardiovascular events (such as heart attacks), and hospitalizations among patients in the study over two years.
The blood levels of uric acid and C-reactive protein (a marker of inflammation) significantly decreased in patients treated with allopurinol. In the control group, kidney function declined after two years, but in the allopurinol-treated group, kidney function improved. Allopurinol treatment slowed down kidney disease progression regardless of patients’ age, gender, and diabetes status; their blood levels of uric acid and C-reactive protein; the amount of protein patients lost in the urine; and the other types of medications patients used. In addition, compared with usual therapy, allopurinol treatment reduced the risk of cardiovascular events by 71 percent and the risk of hospitalizations by 62 percent.
While allopurinol has significant potential benefits for CKD patients, “these results have to be confirmed in larger prospective trials and are the basis for a hypothesis that still needs to be tested,” the authors wrote.
(and remember NOBODY makes money off allopurinol so when reports are positive, they are likely unbiased.)
Linda, Can you get less knee pain with a pillow under your knee when in bed? I would normall suspect a torn cartigege but that would hurt as much standing up…but then so would gout pain???
Mysterious.November 27, 2010 at 1:45 am #10672
Trev….yes I could always do better watching what I eat and drinking more water. Been looking for a new place to live over the past month and finally found something that I can feel good about, but the stress of looking, together with packing up to move has taken a toll on me and I know that I haven't been drinking enough water. I just stopped for the night. Movers are coming in the morning, so it will be over soon. Once I am settled, I will be more able to watch what I eat and drink. Have been living with my 86 yr old Mother and her boyfriend for 3 years and I just recently decided that I must either move or kill them both…..so moving seemed like the sensible thing to do. I'm too old for prison. Mom does all the cooking and she's a meat & potatoes cook. It's hard to eat the right foods with her cooking and she just doesn't understand. So….time will tell what 200mg of Allop does for me, but will get a blood test soon.
Zip…what an interesting article. My Nephrologist told me that damage can happen to the kidney if UA gets above 10 and stays there. I would think that it would be important to inform those with really high UA and in denial that this is the case. Maybe that alone would make them get their UA down and keep it there. Kidney dialysis is no fun! Have you moved yet? I'm in hell right now, but it won't last much longer. Just DO IT. LyndaNovember 27, 2010 at 6:58 am #10673
Have you moved yet? I'm in hell right now, but it won't last much longer. Just DO IT. Lynda
No, I'm in the middlse of that particular Hell too.November 27, 2010 at 1:20 pm #10674
Hope your problems ease soon, Lynda. Stress is bad for gout. So is living with people who don't understand special diets.
I had a meat loving wife for 25 years and did the same- but on separation, I stopped meat 20 odd years ago and don't regret it.
I do eat fish, but skinless. The diet thing is good for gout, to the tune of a point on the SUA scale or two, but it all helps.
Further, the grabbing control back in your life is good for you too- and will make you more resolved to get fit again.
People who just nod and glaze over about others issues are understandable, but sometimes a gout prod jolt would be nice to deliver!” <evil>.
I have a friend who knows the gout /beer link but always offers another, and another etc- it's what men do!! Isn't it? Well- not with big 'G'
The mental strictness is hard, but needed in these areas.
Water intake really HAS to be worked on- we just lose out abilty to feel thirsty with age. I still o0nly do just over half what I should do.
It's said that , by the time we feel thirsty we are getting de- hydrated already. There was a Dr Batmangelhej [or similar, dead now] who wrote a lot on this- 'Your bodies many cries for water'! For gouties, especially true..October 11, 2014 at 2:07 am #17604Keith TaylorKeymaster
Do you have hidden gout?
I’ve just found more evidence of the dangers of high uric acid. The main danger being that high uric acid is not treated as a problem until gout attacks occur.
But modern advanced imaging techniques show that uric acid crystals start attacking joints long before we notice gout attacks. Browsing through my Gout Support Circles, I found a link to “Hidden gout- Ultrasound findings in patients with musculo-skeletal problems and hyperuricemia.” That gout study tells us:
Ultrasonographic gout-specific signs are not only found in joints affected by gout attacks, but often also in the corresponding contralateral, asymptomatic joint. Patients with asymptomatic hyperuricemia already showed sonographic features implicating an as yet ‘silent’ precipitation of urate crystals.
Ultrasound is one imaging technology that is easily accessible for most gout patients. If you have experience of ultrasound for your gout diagnosis or treatment, please share your story here.
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