- This topic has 14 replies, 8 voices, and was last updated 7 years, 1 month ago by Jacquie.
October 24, 2010 at 11:02 pm #3438
First off, i appreciate the site. Its definately helped with my knowledge base.
IM just past the 2 month mark of 300 mg of allip (was on 100/200 for 2 months prior..so a total of 4 months). When i started i had pain everywhere, foot, ankle, neck, knees, wrist, elbow. It was hell (like many of you know). Ive been making incredible progress ever since, and all of my pain has been eliminated except for my knees (usually my left, sometimes my right).
During the last 2 months, ive been on a daily dose of colchocine and prednisone (20 mg originally) to help with the flares while Allip gets in my system. Im down to 10 mg of pred daily and .5 colchcine.
As i mentioned, my knees are the only thing thst bothers me, and the attacks have been mild, and ive been able to get through my work day no problem. Then 10 days ago i had a decent size attack in my l knee, it went away for about 2 days, then BAMMMMM my left knee is tight as heck with limited range of motion, ive missed a week of work and although its starting to get better im worried its going to come back again.
My UA is 4.9. AM I GOING BACKWARDS?? HAS ANYONE EVER HAD AN ATTACK AFTER BEING ON 2-4 MONTHS OF ALLIPURINAL WITHOUT A MAJOR ATTACK? Just when i thought i would be able to chase my kid around again im back in the recliner making excuses as to why im not playing with him.
…..i know people are way worse off then i am, but im pretty frustrated at this point, its been 6 months that ive known ive had gout, and at this point it feels like i will never be normal again,
Thanks for your help,
JPOctober 25, 2010 at 4:38 am #10429
Jon- 3 months is not long enough to clear gout flares -anything upward of 6 months gerts reported but of course no one knows how many didn't do this feedback & pain levels a re hard to compare too.
As the lower regions have improved -that's good and if you get attacks in your knees then they may just be the worst place for deposits.
My old favourite culprit with knees is Psuedo Gout- caused by calcium retention and just as painful as normal gout. No reason, afaik, that it can't co-exist one with the other! [The treatment is different, however.]
I've not seen much scale of actual 'attack severity on meds' that would be 'normal' on here- but with any luck the next, if it occurs, will be noticeably lighter in severity. My flare severity has reduced in level in 3 months on a different Urate lowering med- but I tread warliy on the diet, alcohol and keep the water intake up.
It's a slow process- so keep going…October 25, 2010 at 8:12 am #10430zip2playParticipant
This is my GUESS, and it's just a guess and take it that way:
Your knee pain is not gout.
I don't know what kind of odds I'd take on that becasue it is probably a close call.
So that's my #1 guess.
#2 is that, you had gout in your knee that did permanent damage to the knee structure.
#3 is that you injured your knee and your gout is purely coincidental
Have you had an MRI done by an expert in orthopedics, knee specialty preferred? The pain from the damage could have been masked by the prednisone. How much are you currently taking?
What you COULD do, or maybe what I would do, is to get off the prednisone and increase the colchicine. Prednisone is apt to be most beneficial with NON-gout pain, but colchicine will be specific to GOUT pain. If it gets worse it points to non-gout, if bettter it points to gout. Does that seem reasonable?
(I know the thought of going off prednisone is scary, perhaps that's why its not the best idea to even start it. IMHO. One can become VERY dependent on prednisone, not unlike heroin.)
If you decide it is definitely gout, consider upping the allo to 400 mg. for a few months.
Sorry you are in pain and scared and frustrated, jon.
One final thought: When you cannot straighten your leg it is most often because something is impinging INTO the joint. I tore cartileges many years ago and whenever a piece of the cartilege wandered into that joint it would not straighten until the piece moved back out. I never had the surgery becasue back then it was a massive undertaking. The cartilege either reattached or shrank and it is rare it moves into the joint…but once in a while for a few minutes, yep…hobble hobble hobble.October 25, 2010 at 11:26 am #10431
As always thanks for the help:
Trev: As far as pseudogout, from what i can see the treatment is prednizone and/or NSAID's (just to fix the symptoms, not the cause), are you aware of a different treamtment?
As far as the ortho problem for the knee: I have got an mri reviewed by a specialist, nothing significant, but he is willing to do a surgery to determine if possible there is a miniscus tear he can fix (exploratory). My rheumatologist says its gout, and no need for surgery. Here is my thoughts on it: Before the allip, i had a limp for 3 months which finally subsided. I would get rapid uneven swelling (ie first the left side of knee, then the right side of knee, rarely the whole knee), which would come on without a physical reason for it. a few times, the swelling did come on right after i ate one of my gout triggers (determined by diet restrictions and introduction of things i suspected triggered my gout)
As far as the prednisone, i agree i should have never taken it, but i have issues with nsaid's that forced me into it. I was on 20 mg for 2 months, now im on 10, and weening myself off. when i went from 20-15 i had pains in my wrist for a few weeks, which eventually went away, but no increase in knee pain at that time. could it be withdrawels from the prednosone that is causing the flare? Ive been on 10 now for 2 weeks,
JPOctober 25, 2010 at 12:00 pm #10432
Bit early to get on the alternative trail Jon esp. after your comment about gout triggers doing the knee…
This site :http://www.medicinenet.com/pse…..rticle.htm gives a good overview though.
It can co-exist with gout and is more evenly split male/females- so if you were female about 5X the chance of it being pseudo rather than gout…. but check out the associated symptoms listed if you're game!
The meds listed there aren't the specific I saw in passing a while back- it stuck out to me at the time- so there is a dedicated treatment listed somewhere- always subject to the 'finding which med suits' syndrome though…
That is said, though- is that the gout is usually treated first anywway, due to joint damage being a bigger risk with gout.
Your Rheumy probably knows best!October 25, 2010 at 1:23 pm #10435italiamiaParticipant
jonpayson, it is really not unusual to have gout flares 2-4 months out after starting allopurinol. I am sure your doctor warned you that attacks are not uncommon when initiating the therapy. I have had the unfortunate experience of having attacks within a few months after going on the drug and even up to a year after the initiation of allopurinol. I have taken allopurinol on and off for 20 years and have I experienced attacks even after a year of being on the drug. I will say that the attacks early on, within the first 1-3 months can be severe, especially if you are a long time gout sufferer and have not been on allopurinol for a many, many years. To avoid this for the most part, continue take colchicine or another drug designed to combact an attack. I have taken the steroid and it works very well. I have a cousin who took both allopurinol 300 with the colchicine for 12 years. Just recently, his doctor told him he can discontinue the colchicine.
I have been through the trips to the orthopedic surgeon, had numerous MRI's, because it could not be gout right? For the last 15 years, I have had 7 MRI's involving both knees, over 20 trips to an orthopedic surgeon, aspiration of both knees etc. I can only base what I tell you on personal experience but I have come to the conclusion that any pain in my feet, ankles or knees is gout pain unless proven otherwise. Everytime I had my knee fluid aspirated, my doctor would send it to the lab to inspect for gout cyrstals. Each time this has occured, the sample of my knee fluid came back positve for gout. Interestingly, many of the MRI's on my knees were at the insistence of the doctor. He always maintained that ”he did not like where the pain was coming from” or ” it sounds like a torn meniscus…” Less than a year ago, I was back to exercising, taking my allopurinol and watching my diet when one evening I started getting pain in my knee at the top of my knee cap. It happened about 3 hours after I ran a few miles. I suffered for about 2 weeks, not severe pain as I was mobile, able to work and sleep. The pain and moderate swelling would not desist. I went to my othorpedic surgeon, who has become a friend, he said maybe it's gout, I said, no way, he said “let's get an MRI because the pain is in an odd location.” He drained my knee, gave me a shot of prednisone, and sent the yellow, cloudy fluid to the lab.
It came back gout. I was fooled, again. So all I can tell you, or anyone else who has suffered for years from the pain of gout to assume it is in fact gout everytime you get pain in your lower extremities and treat it accordingly. Certainly, go to the doctor and see what he thinks. I will say one more thing: everytime I experienced gout in my knee it was soon after I began taking allopurinol. It comes on so quickly that I am unable to abate a full blown attack. I get the knee drained, get a shot, I'm good for 6 weeks, the gout returns in a less severe form, and then goes away without a fuss. I don't know why, but I call it a double dip gout attack and it only applies to my knee.October 25, 2010 at 5:27 pm #10439azasadnyParticipant
I've been on 300mg of Allopurinol for over a month now and I've had many mini-flareups during that time. The worst was this weekend, both of my feet were burning and incredibly sore. The pain is so bad after driving my Porsche 911 that I sold it last weekend. I don't enjoy driving it anymore, with all of the foot pain that pressing the clutch pedal causes… That's my wife and I sitting by the car. I understand how bad the gout pain is, I wouldn't have ever considered selling my “baby” before I was hit with this disease…October 25, 2010 at 9:39 pm #10440
Thanks for the help/advice.
I have a prednisone patch (6 day supply) that i could have used…but since im trying to ween of the daily dose, i thought it would be counter productive to take it. With that said, if it happens again ill probably use it. I got my range of motion back today, and there is just a little bit of tightness. Hopefully it wont come back again..at least not at the same severity. I can handle the little ones, but this big one freaked me out a bit. I hadnt experienced that level of pain from gout in about 2 months, and it brought me back to my 3 month series of attacks, and 4 dr's, 3 mri's, and 3 months of not being able to go to work hell that i went through prior to being diagnosed with gout (again, minimal compared to many on this post, but scary just the same….especially when the financial well being of your family is tide to your ability to work)
JPOctober 26, 2010 at 11:43 am #10447hansinnmParticipant
…. with all of the foot pain …
Art, is my eyesight still ok? You are wearing Birkenstock's???
If “yes”, then I dare say that you have won “half' of the battle with/against Goliath “GOUT”. At least you don't have to fight the shoe and the socks/stockings industries (except you are making Birkenstock a bit richer than they are already.)
I have been wearing Birkenstock's for over 25 years and got mine, generally, in Germany at their “Sommerschluss Ausverkauf” (summer's end sell-out) for 1/4 of the regular price (at certain stores only.) I have worn “shoes” maybe 10 times over the last 14 years (retirement) except for, whatever you call them now, before, they were called “tennis shoes”, after the Japanese started their IWO JIMA marches and planted their flags (one of them) called: “Nike”, all over the world.
Regardless, if it weren't for Birkenstocks I would not have known how to survive the time between Dec. 2009 and now, October 2010.October 26, 2010 at 12:53 pm #10449italiamiaParticipant
I think I would have kept the Porche. Just a beautiful car. Why let gout force you to sell such a vehicle.October 26, 2010 at 2:10 pm #10450
Maybe the lower square spots? <evil grin> All the same, gout can be whacked in tow [no pun] by 6 months …Art- you could have hung on !!
I reckon there was another reason to your sale . Gout is known to improve psychic ability, you know! 😉October 27, 2010 at 4:20 am #10463NateAParticipant
I've now been on 600mg Allo/day for almost an entire year. I have been a gout sufferer for over 15 years. It's always hard to quantify just how bad your gout is, but I had it pretty darn bad. Absolute crippling attacks in various joints, one after the other, and often in multiple joints at the same time. After starting the Allo, I still had severe attacks for at least three months. Eventually, the frequency of the attacks subsided, but I still was getting some pretty bad episodes for another 6 months. So, after about 9 months, I seemed to be almost gout free. This lasted for three months and abruptly ended last night – a hellacious attack hit my right big toe and the top of my foot hard and fast. This is almost a year later AFTER starting 600mg Allo/day.
Let me also add, that once I started taking Allo, I quit eating almost all meat, quit drinking alcohol, and changed my diet to include mostly fresh fruits and veggies. I've come to accept the fact that after 15 years of suffering with debilitating gout, it's going to take my body a long time to get rid of the built up SUA in my body. Six months? Not for me. Shit, I'm thinking more like two years or more, even with consistent UA readings of 4.9 and below. But, at least the attacks are occurring with much, much less frequency and I am almost living a normal life now.
I've also been through the knee thing. Two surgeries for two torn meniscuses and another for a damaged patellar tendon. I also slightly tore my left MCL almost two years ago but opted not to have surgery on that. I also have had really bad gout attacks in both knees. The difference in pain between a gout attack in the knee and an injured knee is much, much different and very easy to tell apart. I went through having my knees aspirated approximately 15 times (confirming gout), which does help with the pain and swelling.
It all boils down to this – stay the course. Eat healthy and stay on your meds. It's going to take time. Keep seeing your doc, get your UA levels checked regularly and try to keep a positive attitude. I know the last can be difficult. I was cursing at inanimate objects last night as I writhed around in pain at 3am.
Best of luck to you!
PS – I have two pairs of Birkenstocks. They are indispensable when I'm having an attack in my foot (like now).October 27, 2010 at 5:28 am #10465
It seems your other damage is adding to the pile. On that AP dose, would it be allowable to take a uriscoric on top to hasten matters?
My med [Sulfinpyrazone] works very well ,so far, @ 200mg and you're big guy- and have a lot of history on this, to clear!
I drive an automatic btw, so already one step ahead. The Porsche would not be the same , I suppose with this expensive mod- but modern auto transmissions are brilliant! [Esp. German !]
Sandals? – nearly all year round apart from snow!October 27, 2010 at 5:58 am #10468azasadnyParticipant
That picture was taken in 2008, before my gout started, sio I'm not able to wear my Birkenstocks any more. I wear Keen sandals and Born shoes and they are OK. I've been on 300mg Allopurinol for over a month and I have had almost constant pain from gout during that time. I couldn't press the clutch pedal and driving the car went from being a joy to being a pain, so I had to sell it. Perhaps once I get this gout beat I'll get a newer one with a lighter clutch pedal. For now, I just need to get some relief from the pain. I'm very discouraged, but I'm not giving up! Thanks for the advice, kind words and support!October 15, 2014 at 10:25 pm #17727JacquieGuest
Hi there, I wanted to say, I loved this information about gout shoes.
It was inspiring. I was also sick and tired of gout. Walking was very hard for me, then I tried the Birkenstocks.
Revelation! Now I can walk easy despite the gout.
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