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Hello, first post here.? Seems like allot of great people helping each other out with their methods of dealing with this crap disease.
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I will try to make this short.? I haven't shared this experience with many people, or forums.
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I am 43yrs old, male, white, 6'2″ ~250lbs.? I drink allot of beer, eat whatever I want, don't get too much exercise, and I've worked from home as a web developer for the past 12 years.? I am single and live alone with my 4 cats.
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Starting in 2004 (when I was actually in pretty good shape), I started getting gout attacks in my feet.? Not in my big toe, I've never had an attack in the big toe.? As everyone knows, it's crippling and I had to crawl, hop, or use crutches to get around.? Gout is not in my family history.
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As the years went on, my attacks went from 2-3 times a year, to 4-5 times a year and sometimes lasting 1 month!? People don't understand the pain that gout causes.
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In 2009, my “bad knee” which was bad due to wrestling in high school and injuries riding my dirtbike, was attacked by gout.? It was the worst attack to date (well, my current attack could get allot worse and match it).? I had it drained THREE times and the doc was floored by how much fluid came out each time (drained about 2 weeks apart).? My knee was permanently damaged from this attack, I never re-gained full extension (flexion I think it's called).
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So in late 2009, I moved closer to my family because I was very sick, and knew I needed to be close to home.? In Feb 2010 I was diagnosed with?Familial adenomatous polyposis (FAP).? After a colonoscopy, I was told I had well over 100 polyps in my large intestine and had a tumor in my rectum.? I was then made aware that I would be going on chemo and radiation, then having my entire colon and rectum removed and sporting a brand new illieostomy bag.
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After my surgery, I was couch bound for around a month (I lost 80lbs and looked like a freaky skeleton dood), I had no alcohol, no bad gout “triggering” foods for almost 60 days, and I had a gout attack in my right ankle.? This delayed my recovery efforts another month.? This makes be believe that noone really knows what causes this disease and that it's different like an autoimmune disease is (different for each person).
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So, I beat cancer.? Side effects?? I have neuropathy in both feet which can hurt near as much as gout, and sexual disfunction.? I've been addicted to narcotiics twice in the past two years (I've been off for 2 months now).? ?I also have a chronic neck pain that noone can explain, help, or cure.? Bouts of depression triggered by drug withdrawals.
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2011, paying HUGE amounts of medical bills since this all started, barely keeping my job? I decide to go ride my dirtbike in my yard.? I am a very experienced rider and this was a FLUKE.? I lost control due to my tire being under inflated, and the bike stood straight up after a panic throttle, put my leg out (yes, the bad leg) and the weight of the bike twisted my knee and I broke my leg.? The absolute WORST place to break a bone.? It is a tibial plateau fracture.? I had surgery and had a plate and screws added to the top of my tibia, adding to my fatass knee.
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That brings me to today.? After being on crutches for over 60 days, doing rehab twice a week, I finally went off the crutches and was doing pretty good, even though my leg still wasn't going to extend all the way.? This morning I woke up to a gout attack in my bad knee.? It's warm, starting to swell, and VERY painful.? I took some indomethicin and plan on taking it for a couple of days to see if it helps.? I also have some colchicine(sp?) if this doesn't work.
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The reason I am posting this?? It feels good to write it out and see what I've actually been through.? Reading it from another person's perspective and justifying the amount of rage, hate, and depression I have.? I am a pretty easy going guy, but am sick of people telling me to be positive and how things will work out in the end.? The end, haha.
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I hope everyone here finds relief in their gout experience.? I've learned allot from this forum in only a short amount of time and will be trying out some of the remedies (I've had alipuroniol for the last 6 months and never took it).? So I have myself to blame, but I haven't had an attack since 11-2010 and thought it was done for good.
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Take care all.
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I am taking neutontin for my nerve pain (neuropathy), vitamin D, b-12, multi-vitamon, glucosamine & chondroitin, folic acid, and then tramadol as needed (I feel absolutely nothing with 100mg of tramadol).
Welcome jeffros,
I will be brief for a change.
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Uric Acid Number?
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Nothing else really matters, though I do sympathize, and feel sorry that the experts never forced allopurinol on you earlier.
I just typed out a reply, and decided to “subscribe” by clicking on the link below this WYSIWYG editor, and it took me to another page, therefore I am typing this all over again.? Can this editor be disabled?
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Thanks for the welcome.
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I see my primary care tomorrow to draw blood, I will know my UA level Monday.? I am also going to have an MRI done on my knee, as I may require more surgery since my leg won't fully extend due to many injuries, gout, etc.
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The indomethacin did it's job and I am pain free at rest and sitting.? The knee still requires me to use one crutch.
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I will be starting an allipurinol regimen after the gout attack has resided.
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Thanks again, I plan on using this site allot in the future.
Sorry about the editor problems. This forum software will be replaced soon, so why not use the Question & Answer service and the Debate pages as an alternative? [search above to find them, or just click the Home button above, or GP I in the menubar]
They are not perfect, yet, but much easier for me to improve. Please bear with me – this WILL get better.
If you prefer to stay with this forum for now, you can change the editor in your Profile settings.
Welcome Jeffros?so sad to hear that you HAD the allopurinol and didn't take it. I am sure that won't happen again.
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The gout will get better but I hope you can get a resolution of the mangled knee. I went for weeks unable to straighten mine but it was only a ripped meniscus that kept getting stuck inside the joint acting like a wedge.
My UA level was a “7” he said.? He said anything about 6 was high, so I guess it sounds about right.? I am sure it's even lower now.
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I've never taken the allopurinol in the?last couple years?because of the tons of other drugs I was on and the fact I didn't have gout but once in two years while dealing with cancer.
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The attack is over and I am on day 2 of allopurinol (300mg) and still on Indomethacin 50mg for another couple days.
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I am back to no crutches and the leg and knee is feeling as strong as it has since the day I broke it in early June.
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I guess it's a gout only forum here, so I will keep my other issues to myself.
jeffros_gout said:
I guess it's a gout only forum here, so I will keep my other issues to myself.
It is best to stick to gout, but some of your other problems are related.
?I wanted to be brief in my first response to focus on what really matters ? your uric acid level.
The reason I was disappointed about lack of earlier treatment is that surgery, chemo, and rapid weight loss are all extremely high on the list of things that cause gout. They all have a huge potential to significantly raise uric acid in the blood. Your medical team should know this, and they should have put you on allopurinol at the start of your treatment to reduce your gout risks.
Personally, I am very interested in your work as a web developer, but you are right when you suggest that this is not the place to discuss it. As for cats…
No thanks!
Keith,
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That is the very best CAT AND MOUSE picture I have ever seen. If I can edit it smaller I'm going to use it as my avatar on another buttetin board.
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jefffros,
I hope that cancer is well and truly behind you. I have no doubt that the cancer, the massive weight loss ?and the chemotherapeutic agents used are very much part and parcel of the initiation of your gout. Your story was heartbreaking.
?All that was required for my gout initiation?was a decade of hydrochlorothiazide.
But alas, unlike may illnesses that disappear once the cause is removed, once gout is initiated it is forever becasue the crystals of urate will always make it impossible to superaturate your serum again.
So, no matter the cause, once a goutie ALWAYS a goutie.
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That neck pain is part of your job description, been there, done that. Here are two easy tips:
1. Every month move your monitor from right, to center to left…don't put it off.
2. NEVER cradle a phone between your shoulder and head while you type.
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And two harder ones:
3. try about a month of daily?FLEXERIL (cyclobenzapril…feels like schitte but it eventually breaks the spasms.)
4. try some sort of regular?neck traction
zip2play said:
Keith,
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That is the very best CAT AND MOUSE picture I have ever seen. If I can edit it smaller I'm going to use it as my avatar on another buttetin board.
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jefffros,
I hope that cancer is well and truly behind you. I have no doubt that the cancer, the massive weight loss ?and the chemotherapeutic agents used are very much part and parcel of the initiation of your gout. Your story was heartbreaking.
?All that was required for my gout initiation?was a decade of hydrochlorothiazide.
But alas, unlike may illnesses that disappear once the cause is removed, once gout is initiated it is forever becasue the crystals of urate will always make it impossible to superaturate your serum again.
So, no matter the cause, once a goutie ALWAYS a goutie.
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That neck pain is part of your job description, been there, done that. Here are two easy tips:
1. Every month move your monitor from right, to center to left…don't put it off.
2. NEVER cradle a phone between your shoulder and head while you type.
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And two harder ones:
3. try about a month of daily?FLEXERIL (cyclobenzapril…feels like schitte but it eventually breaks the spasms.)
4. try some sort of regular?neck traction
Thanks zip2play.? Noone knows for sure where my neck pain comes from, but it's possible from my?work.? I've been working for the same company for 12 years in Nov.? And don't remember when it started.? Both my neck pain and gout started years before my cancer did.
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I can't move my monitor like you described.? I have three monitors, a?30″ in the center, and two 24″ 's on the left and right.
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I almost never put the phone to my ear, I use speakerphone on my Panasonic handsets, people don't even realize they're on speaker phone.
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I have been trying to improve my posture sitting in font of the computer, but my eyes aren't what they used to and sometimes I have to?get my face about 12″ from the screens.? I look like a 90 year old squinting and such.
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I've actually tried Flerxeril a few times, but not for my neck.? It was when I ran out of oxycodone after breaking my leg, I was going to try anything to relieve the pain.? It did help from what I remember.? The other couple times I tried it was when my feet and neck were really bothering me, and I didn't notice a thing.? My old roomate left it here.? I don't have cramps or spasms in my neck.? Just a constant dull pain that gets worse as the day goes on, and spreads up to what seems like my brain giving me a headache.
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My original statement about Tramadol didn't really make sense.? What I mean to say about Tramadol is, I felt no different, pain-wise while on it, and I tried it numerious times.? Ibuprofen 600mg doesn't do squat for me either.
jeffros_gout said:
My original statement about Tramadol didn't really make sense.
Nothing about tramadol makes much sense to me. I was introduced to it earlier this year in hospital. Half the time, I thought I was connected to the Internet, and could control it with my mind. Pain? Who cares.
I came home with a supply (also with ibuprofen and paracetamol), but I wanted to try reduce pain relief, so stopped taking tramadol. When pain became too much, I popped a tramadol – absolutely no effect. Then, after taking as prescribed for a day, I was back in la-la land. Pain controlled, but constipation after a couple of days killed my desire for tramadol. It seems to me that it takes about a day to take effect, but I will not be going near it again. Unless the pain gets unbearable!
By the way, this was not gout pain – just the odd broken bone here and there.
Trust me jeffros,
Your neck pain IS spasm. Spasm can continue for hours, days or weeks quite unlike a “cramp” in you calf. It is self perpetuating and must be broken somehow. Neck muscles are not meant to hold the head in a single spot for hours, they WILL spasm, just like arm muscles holding a gallon of milk overhead for hours.
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Too bad you cannot move your monitor but in addition to Flexeril (for several weeks to be effective) I can recommend SOMA (carisoprodyl) but nothing will beat getting up ever 10 minutes and moving your head through the full range of motion. The eventual headach is merely an exttension of the spasm up the cranial muscles. Only problem with SOMA and FLEXERIL is that both may impair your judgement, “Hey boss, suck on THIS!”:D…but SOMA is a very pleasant drug
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Can you?aim your chair towards the right and left?periodically so that in order to see the center of your three monitors, you must look alternately slightly?left and right instead of dead on.
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?zip2play said:
?Trust me jeffros,
Your neck pain IS spasm. Spasm can continue for hours, days or weeks quite unlike a “cramp” in you calf. It is self perpetuating and must be broken somehow. Neck muscles are not meant to hold the head in a single spot for hours, they WILL spasm, just like arm muscles holding a gallon of milk overhead for hours.
Too bad you cannot move your monitor but in addition to Flexeril (for several weeks to be effective) I can recommend SOMA (carisoprodyl) but nothing will beat getting up ever 10 minutes and moving your head through the full range of motion. The eventual headach is merely an exttension of the spasm up the cranial muscles. Only problem with SOMA and FLEXERIL is that both may impair your judgement, “Hey boss, suck on THIS!”:D…but SOMA is a very pleasant drug
Can you?aim your chair towards the right and left?periodically so that in order to see the center of your three monitors, you must look alternately slightly?left and right instead of dead on.
I had a nerve block shot on Friday, so far so good.? I am either having “good” days, or my neck pain is vanishing.? I hope it lasts as long as possible.?
Your advice is great, I am going to try to put my neck through full motion.? My pain management doctor gave me a collar to wear, it's called a “reminder collar”.? It's smaller than a collar you would get if you had whiplash, and it's supposed to help with posture.? I find myself almost touching my back with the back of my head when working or playing games.I can't really move my chair to either side, due to my desk.? My legs go underneath the center part of my desk.? My desk is a mess, but this is my work space in my basement:?
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I will see what my doctor says about soma, and flexeril.? I need to get things in order fast, I may be losing my health insurance Oct 1st (also my b-day of course).? And my company doesn't offer “cobra” and I am basically uninsurable.? So life is getting better and better over here.
Looking at your desk I was expecting to hear “HOUSTON, WE HAVE LIFTOFF!”
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(I thought everyone had to offer COBRA or is that just for larger companies?)
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I should get one of those postural reminders because I was over 6 feet at age 12 and hunched over to talk to my little friends?thus my posture sucks. Occasionally I try to remind myself to straighten up but then I feel silly?like a strutting marine.
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Plan Coverage ? Group health plans for employers with 20 or more employees on more than 50 percent of its typical business days in the previous calendar year are subject to COBRA. Both full and part-time employees are counted to determine whether a plan is subject to COBRA. Each part-time employee counts as a fraction of an employee, with the fraction equal to the number of hours that the part-time employee worked divided by the hours an employee must work to be considered full time
Does the Obama Plan have anything for you
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?Cobra is mandatory for companies with 20 or more employees. My company probably has 19.5 employees.
Good news tho, they’ve decided to keep our current plan (with 26% premium increase) because myself and a couple other people wouldn’t be able to get insurance at any cost.
It’s funny how you don’t think about health coverage and how messed up we are over here, until you experience it for yourself.
Nothing new. I can remember 15+ years ago how my mom couldn’t get health insurance because of her pre-existing conditions.
Cobra is mandatory for companies with 20 or more employees. My company probably has 19.5 employees.
That line will have me giggling all day.
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Consider that 26% hike quite good because COBRA hikes are always FAR higher than that.
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It's funny how you don't think about health coverage and how messed up we are over here, until you experience it for yourself.
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It is absolutely appalling and those outside the United Ststes can never grasp how unreasonable, capricious, and cruel the system can be unless you are a multimillionaire or lucky enough to have made it to Medicare.
zip2play said:
It is absolutely appalling and those outside the United States can never grasp how unreasonable, capricious, and cruel the system can be unless you are a multimillionaire or lucky enough to have made it to Medicare.
The last thing I would like to do is appal you, but it is due, at least in my case, to a total lack of experience and information.
i have written elsewhere about the horrendous tax burden that we face in the UK. The rich can avoid poor quality National Health “Service” by taking out private health insurance, or just pay for private treatment, but anyone on average pay cannot afford it after all the tax we pay. We have to endure bug-ridden, cold hospitals, long waiting lists, and a host of other problems. But, they did save my life, and I'm now getting my gout treated for about $10 per month, so I shouldn't moan too much.
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Does the cruelty lie in a situation where you can only get affordable health insurance if you are too healthy to need it? If that is the case, then I am truly appalled.
On the other hand, I was surprised recently to read that someone was refusing to apply for free or discounted Colcrys because they required copy payslips. In a country that demands profitable companies, did she really expect discounts without proof of income?
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For gout sufferers, there may be something we can do to research cost-saving options. E.g. we could approach suppliers of relevant products and services to arrange discounts for referrals from here. I would be more than happy to donate all advertising revenue and commissions from GoutPal Interactive if I was certain that the money goes to those who need it.
Does anyone have any ideas about how we might get something going, or have links with a relevant charity that I could approach?
I am a retired 63 year old low income widow. I pay $1045.00 PER MONTH, [way more than I pay for any other monthly needs] for my health insurance it goes up every year by at least $70. I cannot get Medicare until I am 66.
Keith (Gout Admin) said:
zip2play said:
It is absolutely appalling and those outside the United States can never grasp how unreasonable, capricious, and cruel the system can be unless you are a multimillionaire or lucky enough to have made it to Medicare.
The last thing I would like to do is appal you, but it is due, at least in my case, to a total lack of experience and information.
?i have written elsewhere about the horrendous tax burden that we face in the UK. The rich can avoid poor quality National Health “Service” by taking out private health insurance, or just pay for private treatment, but anyone on average pay cannot afford it after all the tax we pay. We have to endure bug-ridden, cold hospitals, long waiting lists, and a host of other problems. But, they did save my life, and I'm now getting my gout treated for about $10 per month, so I shouldn't moan too much.
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Does the cruelty lie in a situation where you can only get affordable health insurance if you are too healthy to need it? If that is the case, then I am truly appalled.
A warning to all potential and/or presently medicare-insured gouties: Once you are on Medicare A and B, NEVER drop B, if you “think” you are too healthy to pay for B. (Now about $110/month) ?If you do, you'll be punished with a 10% {extortion}”Surcharge” for each year you did not pay for Medicare.?
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On the other hand, I was surprised recently to read that someone was refusing to apply for free or discounted Colcrys because they required copy payslips. In a country that demands profitable companies, did she really expect discounts without proof of income?
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For gout sufferers, there may be something we can do to research cost-saving options. E.g. we could approach suppliers of relevant products and services to arrange discounts for referrals from here. I would be more than happy to donate all advertising revenue and commissions from GoutPal Interactive if I was certain that the money goes to those who need it.
I have posted a link on this forum in the past, (YOU need to find it!) by which gouties can get FREE Uloric for one year, provided your yearly income is less than $32,490/1person. I am now on my 2. year of free Uloric.
Does anyone have any ideas about how we might get something going, or have links with a relevant charity that I could approach?
My first look at PatientAssistance.com looks interesting, but I need the views of US residents to truly assess it's worth.
Their page on the Takeda Patient Assistance Program (Takeda manufacture Uloric) looks comprehensive to me, and they have other pages for other medications, but I could not see anything about Colcrys. Perhaps this organization has the same views as I do on the morality of applying a patent to colchicine.
Donna4878 said:
I am a retired 63 year old low income widow. I pay $1045.00 PER MONTH, [way more than I pay for any other monthly needs] for my health insurance it goes up every year by at least $70. I cannot get Medicare until I am 66.
Wow Donna, $1045 !!!
That is over 60% of my income! I am beginning to get the picture now. I pay a little over $200 (as tax and NI) — higher than last year, but how else can we rescue rich bankers and expense fiddling public servants? That covers all doctor and hospital visits. Beyond that, we pay for prescriptions – nearer $12 per item, but I was just rounding earlier when I said $10. Once I get my dose settled, I'll expect at least three months allopurinol on one prescription, so that brings the costs down.
The full UK situation is a little more complex. There is approx $1.60 on every pint of beer, and approx $4 on every bottle of wine, so my full tax bill starts looking a bit more like your health insurance bill 😉
I understand the USA situation better now. Don't be poor!
A tad too political for my aims here, but that is life.
As with gout care, if we want help with medical costs, I think we will have to band together, as I mentioned earlier.
Keith, do you know if there are any rules regarding regular UK prescriptions? I currently only get 2 months and was wonderiing if I could get 3. Last time I enquired about long term scrips, I was given a leaflet about a scheme, which was only economically viable for multiple medications.
No, you are right, odo, the maximum is 2 months (effectively 8 weeks). I just asked today when I got my latest results.
Now I'm a happy bunny. Urates down to 0.18mmol/L (3mg/dL) and prescription for 50.4g allopurinol.
If that don't shrink the tophi, nothing will.
Keith (Gout Admin) said:
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Now I'm a happy bunny. Urates down to 0.18mmol/L (3mg/dL) and prescription for 50.4g allopurinol.
If that don't shrink the tophi, nothing will.
Keith, don't get your hopes up too high, and for Pete's sake don't expect anything.
While it is not too difficult for our bodies to attach a sodium atom to the uric acid and deposit it as MSU=tophi on our toes and joints and what-not, I don't believe that the reverse is as simple. It's not like throwing a few specks of MSU in a test tube, and a little bit of H2O, add a few drops of this liquid, and a few grains of that powder, and bingo here comes our uric acid, all nice and clean.
Just ONE question: How come that one cannot find anything, anywhere how MSU is changed into UA or how and what will scrape the tophi off your bones, except a scalpel?
hansinnm said:
Just ONE question: How come that one cannot find anything, anywhere how MSU is changed into UA or how and what will scrape the tophi off your bones, except a scalpel?
In our earlier discussion on uric acid organic chemistry, I wrote about factors affecting that change, and later mentioned that I believed I'd found a missing factor.
In simple terms it is concentration.
The hard part, for me, is explaining what I think is happening in provable ways. The relevant aspects of organic chemistry include dynamic equilibrium, Le Chatelier's Principle, and disassociation. Most simple examples and explanations I have found relate to gasses. The stuff I've found on uric acid (primarily by searching on the chemical formula for the acid and it's salts) appears to support my view that, at the lower concentration of uric acid, the sodium ion disassociates itself, and uric acid becomes free again to be gently pissed away (that's a technical term for excreted by the kidneys). I do not yet have enough theoretical knowledge to explain this properly.
I have to own that even writing that short explanation leaves me quivering in a corner with fears of boredom. The thought of researching and summarizing a complete explanation makes me run for the hills. I'm focusing on proving or disproving the practical results of uric acid lowering treatment. It has taken me nearly 2 years to begin testing my discovery that lower uric acid directly affects faster tophi dissolving. If it works, it may well take me another two years to explain why.
In my defense, Hans, what would you rather do: sail round the lake; or spend hours writing an explanation of how sail shapes and tacking angles mean you can reach any point on the lake irrespective of wind direction?
Keith (Gout Admin) said:
The hard part, for me, is explaining what I think is happening in provable ways.
I just read a quote that clarifies where I am with this:
??If you can't explain it to a six year old, you don't understand it yourself.? ~ Albert Einstein
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