Forum Replies Created
-
Posts
-
trev said:
Yeah- Good to see success Richard. I recall you had a very bad time back then. [without needing to check back]
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. 🙂
Lyndak said:
Richard, how do you manage to drink 8-10 liters of fluid a day? That’s amazing?and I’m really looking for tips on how you do it. Thanks, Lynda
Oooops! Glad you asked, Lyndak. I made a mistake thinking the 1 liter bottles of seltzer were 2 liter bottles. So I must correct myself and say I drink 4 to 5 liters a day not 8 to 10 liters. 😳
I find it not very hard at all to drink seltzer instead of plain water and I get 5 liters at the supermarket for $3.00 US which is much cheaper than other bottled waters. Sometimes I’ll add a squeeze of lime or orange just to break up the monotony.
Thanks, Zip. Nice to see your face still hanging around here as well as some of the others. Even more inspiring though is all the new gouties that have found their way with GoutPal. Imagine if there was no GoutPal for them to “find the cure” so to speak. These drugs will be for the rest of our lives but without them who would want to be alive. 😉
I’ve been taking Uloric (febuxostat) for almost a year now and it seems to work fine for me. It does cost more than allo but my expensive insurance coverage has my co pay very reasonable for a 30 day supply. My biggest complaint is that my specialist started me out on 40mg which as I later learned was not a large enough dose and it wasn’t until after I fought for the 80mg dose that I improved and SUA really went down. (Seems to be common to be prescribed a low dose initially as more of a law suit protection than anything to do with therapy.) During the past ten months I have gone from crawling to the bathroom to being back to a normal work schedule and almost all gout related symptoms are a memory. I have (on my own) increased my dosage to 120mg of Uloric to see if I can pay no attention to diet and still maintain a low SUA level. I go back to see my specialist later this month so I’ll see how the higher dose is working out now that barbeque season is well under way.
(There is definitely an anti Uloric mind set on this forum but “gouty’s” have good reason to be a little cynical over anything coming from the medical/pharm industry that basically ignored our plight for so many years.)
I had a tophi on my left big toe that made it 4 to 5 times normal size much like the photo zippy posted. I’ve been on SUA reducing med for almost a year now and that tophi is almost undetectable. Surgery is not the only way to get rid of those crystal.
Wow! Your son is in a rough position, k8. You didn’t mention your son’s dosage level of allopurinol but if it’s below 300mg perhaps it needs to be raised. Also, he needs to drink water on a steady basis to help his body purge excess serum uric acid which is being released by the loss of weight and the disolving of crystals in his joints. Stick with the allopurinol or this will just drag on and on. I went through a rough time in the beginning and literally had to crawl to the bathroom, suffered constant pain, experienced chills, developed tophi and even had a hole open up in the tophi of my big toe which drained and oozed for a couple of months. I stayed on the medication (Uloric in my case.) and now almost a year later am doing very well.
Zip, quoting from the first lecture, “bone erosion”, can’t be a good thing. Seems to me that the only way to know if you have this type of “low grade” deposit is from X-Ray/MRI and a doctor that is experienced and/or cares enough to read them accurately. Maybe shooting for an SUA in the 3s might be worth considering. Maybe I should move to a 120mg dose of Uloric and see where it takes me.
One thing we have discussed in this forum in the past is the concept that once the crystals get “walled off” it doesn’t matter how low your SUA gets and surgery is the only therapy left in that case.
cjeezy, maybe we want to get as low as we can when we are going the drug route for managing SUA. Which leaves me thinking more than ever that diet alone is only applying a bandaid to the problem.
Zip, you seem to be saying something I’ve been wondering. Putting it simply I wonder if after maintaining a low SUA for an extended period we desolve enough crystals to make it possible to avoid an attack when we do raise our SUA now and then. Since it seems to take time to deposit enough SUA crystals for our immune system to find and attack perhaps maintaining low SUA for a good while brings us back to the beginning so to speak.
Zip, what is your SUA level? It may be that I could eat anything and drink beer on Uloric just as you do on Allo. When I see my SUA rising to over 6.0 I just get a little worried about a possible attack and at this point don’t want to be as cavalier about the prospect as you seem to be. Frankly, your bias against Uloric is legend on this forum, hence my question about your SUA.
zip2play said:
I guess I should consider myself lucky because as long as I faithfully take my allopurinol I can eat ANYTHING. This month I have even pigged out almost every day with beer?dark and strong. (Yuengling’s Black and Tan and Yuengling’s Bock..8 bottles a day?going on the wagon in May.)
I eat lots of shrimp and fish at least once a week, usually tilapia, trout or salmon. Meat with almost every meal, even organ meats.
I love gravy on everything.
Knock wood!
I’ve been taking Uloric @80mg daily dose for almost 7 months now. The Uloric was doing a nice job of keeping my SUA under 5.0 until I started going back to my old ways in March, eating barbeque pork, grilled steak, prime rib and less leafy green veggies. My SUA steadily rose back up to 6.2 at last testing. I have stopped the folly and went back to the low meats more leafy green veggie diet and drink a minimum of 6 liters of water a day. Hopefully my next testing will not show an even higher SUA reading. I have not eaten any sea food at all but as you can see just the red meats do enough damage for my SUA.
I work outdoors in the sun. I got an attack last August that put me in the hospital and out of work for almost 8 months. I don’t think my problem was vitamin D, I think it was a high SUA level.
Welcome, tmonter. My experience is with the other drug used to control SUA called Uloric. This drug was prescribed by my rheumatologist at 40mg daily. After a few months I realised this dose was not enough and I went up to 80mg daily which made a dramatic difference. It seems that the doctors often prescribe a lower dose to start in case there may be an allergic reaction. I think if you read more on these forums you will find that 300mg is the dose most find useful and some even start with 600mg allopurinol. 150mg may be a place to start if you are worried about an allergy but I think others will reply here to say 300mg is the way to go if you want to lower your SUA and you should get tested again in 2 weeks to see if your level goes down to below 6.0 then you can decide to stay at 300 or not. Good luck to you.
davidk, this is pretty much what my rhematologist says about managing gout with diet as well. If your unfortunate enough to have an SUA over 10 it?s going to be a very tough time getting over an attack. I can only imagine what state I would be in now if all the general medical folks had done was prescribe colchicine and diet for my gout management.
Know all to well what you mean about crawling to the bathroom, NateA. Prednisone is a miracal drug as far as I’m concerned but it is one to be taken carefully, very carefully.
The large tophi on my toe is now a third of what it was just three months ago but I’m not sure if the credit lies with the Uloric I’m taking or with the fact that it had developed a large hole that drained for weeks.
I’ve been taking Uloric (febuxostat) here in the USA for the past four months. My particilar insurance plan has me paying only $12.00 for a bottle of 30, 80mg pills and $9.00 for a bottle of 30, 40mg pills.
Don’t want to change the subject here but I think keeping a good stream of water flowing in and out is important even when not working on BP along with the gout. I may be paranoid about SUA at this point but it can’t hurt. I’m doing about 5 to 6 litters a day and still take the 1/2 teaspoon baking soda just before bed.
There is a BP medication out there that may not interfere with allopurinol and may be worth a mention to your doctor. Diltiazem hydrochloride may be effective for people that don’t want to stop work outs.
This is something I’ve been thinking about as well. Back in August when I was admited to the hospital because my attack had gotten so bad I couldn’t even get to the toilet on my own it was prednisone that got me out of the hospital. Because my prescription was only enough to last a few days and titrate off in three days I was back to suffering the attack in short order. This pretty much proved that all the pain I was under was my body attacking the crystals in my knees, ankles, feet, Toes, hands,wrists and elbows. Why only in the joints? Is that the only place crystals form? Experience seems to say, yes.
I experienced raised temperature and chills during my attack in August of 09. I layed on the couch with two blankets over me and the chills passed but my temperature was raised for a few days. At the time, I was only taking Naproxen for pain relief and hadn’t yet found this site.
kiaora, I have also been taking Uloric to reduce my SUA level. I’m curious as to what dose you are taking? I was taking 40mg for over a month and couldn’t get my Sua below 6.0 until I went to the 80 mg dose. At last testing my SUA level was 4.4 but it took the 80mg dose to get there. I have been improving over the past month to the point that I’m walking almost normally, able to get out of a chair and mostly just have some pain left in the hands. (I stopped taking all pain meds about a month ago.)
I’m happy to see that davidk is able to take Uloric without causing problems with his other meds. Hopefully he will have the same success we have in his battle against this nightmare that is gout.
It may mean that your imune system hasn’t started attacking the crystals in your joints YET. I suggest you get your SUA level tested or if it has been tested find out from your doctor what the number is. Don’t settle for “it’s good” as a responce, get the number. If you are over 6.0 then ask your doctor about allopurinol as treatment to lower your SuA or if your in the USA you can also ask about Uloric as treatment. Pain or no pain, you will need to get your SUA number below 6.0 to start desolving crystals and get the swelling down. I am currently taking 80mg of Uloric and have lowerd my SUA to 4.4 at last testing.
I was taking colchicine and Uloric for about two months but my testing showed my SUA level was still only down to 6.4 and I didn’t really feel improvemnet in my joints so my dose of Uloric was increased from 40mg to 80 mg. Within a day or two I was under a nasty attack that lasted sbout a week. Since then I have been improving by leaps and bounds and at last testing my SUA was 4.4 and it may even be lower by now but my next testing is still a couple of weeks away so I can’t say for sure. Point is, it’s always possible when you change a med or a dosage to have an attack but hopefully you’ll be lucky and your doctor will be right. Just don’t quit the alopurinol if you do get an attack, keep taking it and you will improve.
I’m taking 80mg of Uloric and my SUA at last testing was 4.4 and over these holidays I have been able to enjoy forbidden fruits in moderation. Keyword being moderation. (Although I probably did get a little carried away with gravy on the mashed potato.(I avoided beer and just had tastes of hard stuff and wines.))
rickster, GP, odo and Zip have pretty much covered the bases but I would just add that if you’re in the USA and your attack is not bad enough to prevent you from walking, go to the emegency room of the largect hospotal in your local. You will have to wait hours no doubt but eventually you will be seen and treated. If you explain you suspect you are under a gout attack and the physcian knows anything he/she may have your blood tested for uric acid level and there is a good chance you will come away with a prescrition for colchicine at the very least and allopurinol or Uloric as well. I would suggest to the physician that you need 300mg of allopurinol or if it’s Uloric he/she prescribes, it should be 80mg. In spite of all the propaganda from the liberal left in this country, hospitals are mandated to provide care to anyone that shows up at the emergency room. No one need go untreated for a serious illness (And I think gouty arhritis is about as serious as it gets.) in the USA. AS I said, you may sit around for some hours waiting but you will be treated.
Guess I’m just lucky but I haven’t had to do surgery on the tophi on my toe and ears. At the height of my attack they had openings of their own that the crystals and brownish liquid drained out of without any help on my part. Now the tophi on my ears are gone and the hole in the tophi on my toe has healed and the tophi is greatly reduced in size. I did use antibacterial cream on them while they were draining. I’m on 80mg of Uloric and drink about 5 liters of water a day. I also take a half teaspoon of baking soda in 8oz of water before going to bed and after five months I am now improving greatly.
Hang in there, NateA. I’ve been under attack in the feet, ankles, knees, elbows, wrists and hands for the past five months. I’m taking Uloric to lower SUA and I’m finally down to 4.4 and finally in the last two weeks am walking without a cane. Makes me almost envy the folks who only get attacks in the big toe.:lol:
jobu said:
well this is my first time with the purple foot, the gout pain seemed to subside last night. I also know from reading that blood is getting in the foot, but the venous system is not functioning properly. I will be going to the doc tomorrow. The foot returns to normal color within 1 minute of elevation.
What doc you think? rhuemotologist. podiatrist? Emerg room?
thanks.
Having no insurance and being out of work living off my savings changes the way I think about doctors.
I did not have successful treatment until I got a rhuemotoid arthritis specialist. My General practitioner told me I didn’t have gout and everyone else I had contact with in the general medical community had a very limited knowledge of gout therapy. In fact this forum could teach many in the general medical community but that’s another topic. I have been out of work for five months now and money is getting really tight these days so I know how you feel. It’s a frightening state of affairs. I am finally feeling a ray of hope after getting my SUA down to 4.4 at my last testing. I am now able to walk short periods without a cane and hope to get back to work again soon.
Hi mattyjc, I had used Naproxen back during my attack before I had a specialist managing my gout care. I can tell you it is effective for a short period and then it’s effectiveness goes away. Also, it is a very hard drug on the stomach and must be taken along with food and in some cases must even be taken with ant acid. As a rule, I think colchicine is the better med to take for gout pain. I did fairly well with 0.6mg twice a day but Zip2play has a heavy dose method that he has posted elsewhere on this forum. Perhaps he will post it here again.
