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Hi guys. Finally got into a rheumatologist for the first time ever. Thought I'd give a brief update on how I'm doing but moreso, I asked him every question I could think of and thought you'd be interested in some of his answers. He seems solid and up to speed on gout.
I'm the guy who found gout-pal.com end of December and posted “worst gout pain of my life please help”. You all gave me outstanding education, hope, and advice. I started on Uloric 3 weeks ago per your advice (with doctors approval of course)(I am allergic to allopurinol) and my UA levels went from 9.1 to 4.4 in just 2 weeks. I've not seen much improvement in the short term symptoms yet (gout in both big toes, tophi on one), but that's not unexpected. Have not really had any flare ups either which is good. Just holding steady with constant medium level pain and still walking with a cane although I can get around the house slowly with no cane.
Rheumatologist says I'm doing everything right and am on track to get back my mobility somewhere between a few weeks to 6-8 weeks.
Q: Do you recommend draining the tophi? A: I usually don't unless it is severe and causing problems such as in the ankle and you can't put a shoe on/walk. The trauma from the draining causes the UA/Crystals to be attracted to the area and the tophi will usually return. Better to let it go away slowly through the Uloric treatment.
Q: I don't have much inflammation left, but I still can't walk due to pain. Is it the joint or have my muscled atrophied? A: most likely not the muscles. Extended gout can cause joint problems and you may have some damage, but it should loosen up over time.
He gave me the option of steroid injections (triamcinalone) to deal with pain, inflammation, and help mobility. I don't really have much inflammation right now; I told him I didn't really care about the pain- it's not that severe right now, I only care about mobility- getting back to being able to walk again and ski, etc. He said this might help, so he injected both big toe joints with triamcinalone and an anesthetic. He said the anesthetic may give temporarily relief for 6-8 hours; the steroid will kick in in a day or two. It's been about 5 hours, I don't really notice any difference yet.
He discussed all the standard short term options of colchicine, prednisone, nsaids, etc. He did a nice job summarizing the dual treatment needed for gout- short term for pain, long term– get UA levels down. We discussed me maybe going on a prophalatic .3 mg dose of colchicine, but decided against it since I'm doing fine and the colchicine give me stomach and diarrhea problems even at pretty low dose.
He recommended vitamin c to help move things along. At least 500 mg daily (probably more for others; lower dose for me as I have a kidney transplant).
Q: Do you recommend ice, heat, massage, stretching, etc? A: avoid ice. For me, he wants me to start moving the toes around a little/ stretching, getting the joint moving. He said he really has no advice on massaging the joint or heat- whatever feels good to you.
Q: There is debate about if your target UA should be 6 or perhaps lower; what are your thoughts? A: There is debate about that right now, the most current thinking is 6 unless you are tophaceous in which case a target between 4 and 5 is better.
Q: what are your thoughts about some of the herbal remedies like cherries, baking soda, ACV, etc? A: We know lowering your alkalinity can help reduce the risk of forming kidney stones, so there may be something to that, but that's about it. (Dave's note: personally, I think there is more to herbal remedies, but they are not well studied or understood. I mean in general-in a case like mine, UA lowering meds was the only solution).
Q: Will I ever be able to go off the Uloric? A: No, once you commit to the meds, you are on them for life.
Q: I read diet can only reduce UA levels by about 1.0. Thoughts on diet? A: He wants me to avoid a lot of red meat, alcohol, shellfish for the time being. Diet can lower UA around 1-2, but my case definitely needed meds. Some people can have a gout attack once or twice a year after a weekend binge and not need to go on UA lowering meds.
Good information. Thank you for sharing. I've asked most of those questions over time and received similar answers. One thing I was told, however, was that since I've been dealing with gout for the past 15 years is that a lot of joint damage has occured in the large joints of both big toes. This was seen in a round of x-rays I had taken four months ago. The doctor told me they could perform a fairly simple surgery to clean them out and alleviate the pain and help with mobility. I may have a go at this when my attacks subside.
I've been on a high dosage of allopurinol (600mg) for the past three months and a 300mg dosage for a month and a half before that. I've been living with multiple and constant attacks since taking the allopurinol and it has not been easy. I've had a couple of very severe attacks in both knees and right now both big toes, my right pointer finger and my left knee are very, very sore and gouty. My UA level is down to 3.4, though. God I hope this ends soon. Good luck to you!
Interesting Dave, what your Dr said about tophi needing 4 to 5 SUA fig.
Always good to have a number- though that itself is obviously very patient peculiar!
It would be even more helpful to have an assessment for time needed to acheive- but this is VERY unlikely to ever surface as a protocol.
Also the thoughts about |Colchicine long term.
Useful overview, anyway.
Nate- You've gone for the ' b u r n' (had to spell that out, looked too rude 😉 and I wonder if, as in your case, where urate gets shifted early- a slower approach wouldn't be, overall, much kinder?
trev, I did discuss this with my doctor and he was under the opinion, and able to convince me, that getting rid of the built up urate deposits as quickly as possible would be more beneficial in the end. He was able to convince me by saying that the attacks I would get from the high dosage of Allopurinol wouldn't be any worse and would probably be less sever than what I was already suffering through. I was at a point where I had HORRIBLE attacks every few weeks. One attack would subside in one joint and another attack would quickly start in another joint. So far, the doc has been correct. The attacks, although still happening frequently, have been less severe. The attacks are still very painful but are nowhere near as crippling as they were just four or five months ago. I'm trying to stay positive and take this as a good sign! 🙂
That sounds just about bearable, Nate.
The thinking on here is that a good crack at 'the beast' is best. Taking the slower route myself makes me sympathise with your course of action- but at least yours is a more certain result, in princilple. Nice to have a clued up Doc btw.
You must be over the worst now!
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