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I've had gout for about 20 years and Crohn's disease for about 38 years. My crohns is so sensitive to any changes in diet or meds that I'm barely subsisting on what I can eat. My latest gout flare started on March 17 and my doctor prescribed prednisone since cholchisine, indocin, and allopurinol cause the most ungodly problems with my crohns. We've tried 4 prescriptions of prednisone at different strengths and it keeps coming back within a day or two. My doctor is thinking about putting me on Uloric but even he's not sure what may happen with the crohns. Has anyone else have this problem and used Uloric? I'm concerend because the same warnings for Humira (I take for the Crohn's) are also for Uloric and more! I'm not a young man so my system reacts almost immediately to any changes. I hope I've explained the problem adequately and properly so please forgive any boundary infringement. Thanks for any responses.
dandydon said:
?Thanks for any responses.
Don, I have been on Uloric 40mg and now 80mg for almost a year without any Uloric side effects, however, I don't have Crohn's.
?I suggest that your doctor has a complete blood test performed before any new meds, then try Uloric 40mg for 4 weeks, provided no serious side effects show up. If they do, stop and have immediately a second complete blood test ?to see what/where things happened. If no side effects show up, have that blood test done after the 4 weeks trial. You and your doctor need to know if anything went on during that test time. Make also sure that your SUA is taken each test.
Hi Hansinnm! I had a blood test before my last visit and he said my uric acid level was slightly above 9. Not good. However, he didn't seem to be too knowledgeable about adding Uloric to my huge regimen of Humira, Clidinium, and about 14 supplements that I use to keep my Crohn's in check. Also, they are for my diet because of food restrictions that tend to exacerbate my Crohn's symptoms. I am 62 ?so he is fearful of antagonizing ?the crohn's but also causing bleeding, gastritis, etc. that Uloric has listed for after effects. These are similar to Humira as well. Double wammy possible on the side effects. I guess the only answer is to give it a try and see what happens. Thanks for your input.
I think the first step should be a 24 hour urine analysis. This helps assess if you are an under-excretor or over-producer of uric acid. If it reveals under-excretion. this gives you more options, as uricosuric drugs can be added to the usual allopurinol & febuxostat (Uloric / Adenuric) choices.
If uricosurics do become an option, plenty of water is a must, and alkalizing with baking soda or similar might be required to prevent kidney stones, which seem to be associated with Crohn's.
This type of juggling with gout and additional health conditions is usually best dealt with by a rheumatologist, except where your general practice doctor has the time and inclination to investigate the specifics of drug interactions or other treatment complications.
Hi Keith! Glad to make your acquaintance. WHen you speak of 24 hour urine analysis, are you referring to a simple test I can perform at home? Or the doctor's office? Or a lab? For some reason, all my doctors prefer doing blood tests of one kind or another and personally, I don't feel that blood test are ALWAYS necessary. Especially when other tests are less expensive and just as productive. I've been lucky in that for the length of time I've had Crohn's, I've never had kidney stones. I agree with your assessment of securing the aid of a rheumatologist. however, out in the country where I live there are none available. I have seen podiatrists listed but not sure if they are familiar with the conditions I have. ALso, my wife's insurance has been rather picky about who you're allowed to see and where. Every move I make requires me to either get my Primary care Doctor's permission (referral) or pre-certified permission from the insurance or both. I just went through this in January to get a growth removed from my eye. It's getting harder with HMO's to get the kind of care we used to get years ago with hardly a question asked. But I digress, sorry about that. I guess I'm just so frustrated with it all. Especially since I haven't beenable to get past this current flare of gout. I have never, in 20 years, had a problem getting shed of it in more than 7-8 days. I'm now entering week 10 soon. Thanks for your input. It's appreciated.
dandydon said:
1)?personally, I don't feel that blood test are ALWAYS necessary. Especially when other tests are less expensive and just as productive.
2)? I have seen podiatrists listed but not sure if they are familiar with the conditions I have.
3)?I have never, in 20 years, had a problem getting shed of it in more than 7-8 days. I'm now entering week 10 soon. Thanks for your input. It's appreciated.
1) Don, I am sorry to disagree with you regarding blood tests. No x-ray, no MRI, no urine test will tell you how much uric acid is in your blood and how much MSU has been deposited in your joints. DECT, the only equipment to show MSU is only available in 1 hospital in FL and 1 in BC, Canada.
?2) Forget podiatrists. They are not allowed to prescribe necessary meds for gout, like Allopurinol, Uloric or Probenecid. I know, I went that route.
3) With a SUA of >9mg/dl and having had gout for 20 years, I'd bet my last penny that you have MSU (MonoSodiumUrate) deposits at your joints. I have had it for >27 years and only had 1 or so attack every 1 1/2 year (for 4-7 days) during the first 20 years, but after that all hell broke lose 2-3-5 times a year. If you check my posts (including photos) you'll see why you don't want to accumulate more uric acid in your system. And having Crohn's isn't going to improve your personal condition a bit. ?
You need to find a doctor who is knowledgable in gout as well as Crohn's. Rheumatologists are recommended for gout (I have a good one, luckily), but when it comes to Crohn's and gout, YOU are the one to dig up the right doctor.
dandydon said:
Hi Keith! Glad to make your acquaintance. WHen you speak of 24 hour urine analysis, are you referring to a simple test I can perform at home? Or the doctor's office? Or a lab?
You collect the pee at home in a suitably sterile container (which I guess your doc provides) and your doc sends this to the lab. Total volume of uric acid is measured, and this gives your rate for excretion. It can only be done prior to uric acid lowering treatment, or the results will be falsely low.
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In your situation re rheumatologist, I can try supply your doctor with links to relevant research articles, but there is not much specifically on gout and Crohns. As I see it, if you can find more treatment options, you are more likely to find something that works for you, hence my first step advice on the pee test. Once you have those results, if uric acid excretion rate is low, I can suggest a list of uricosurics that your doc can investigate for Crohns suitability.
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The other issue where a rheumy might help is in checking if any aspect of your Crohns treatment might be causing high uric acid. Myself and others here are happy to look into this, so long as you do not mind the inherent invasion of your privacy as you share your medical history in this public place.
You know, it's funny you mention that because the only time my Primary Doctor does a urine test is when I have my physical.??Uric acid was never listed as something he wanted checked as well.
?I have tried giving him information I put together for him to look at and he almost never does or hands it back to me. Last visit, I had the receptionist put some items in my folder that he gave back.
?I know I could look for another but he wasn't always this way. He use to spend whatever time it took to listen, ask, then confer with you and finally decide on what course to take. Now he just wants you to keep coming back as often as it takes. I don't expect him to have all the answers, after all, he's just a family practioner but at the time I first went to see him (almost 20 years ago) he was referred highly by many people I talked to.
It would be great if there were a rheumy in my area that could answer those questions you mention re Crohn's and gout. Since there are none I think my only alternative is to get an appt. with my gastro doc and see if he has any answers. I think if he'll listen to my concerns, talk about the information I have on Uloric (which my Primary doc wants to try) that he may have some insight on this or other drugs?to try. He knows me best as far as the Crohn's is concerned but that doesn't guaranty his knowledge about gout meds.? He's not fond of my use of steroids to treat my gout flares but he knows about my reactions to the 'normal' meds.
As for sharing my medical history with you folks on this forum, I don't see a problem with doing that. I may get carried away with lengthy replies (as I have here!) but I'm always unsure if I'm giving enough info so that folks understand what I'm trying to convey.
I mentioned sharing private information only as an afterthought really, but I guess my point is that you should not have to ? your doctor should be able to advise you properly.
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It's bad news when that relationship breaks down. Generally, I am very keen to bolster the patient-doctor relationship by helping the patient know what questions to ask, and to help understand the answers. Maybe the time is right to put your feelings in writing to your doctor, in the hope that he will understand that you are not trying to tell him how to do his job, but you do have real concerns about your treatment? Other contributors here might advise you that you SHOULD be telling your doctor how to treat you, but that's not really any concern of mine.
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What does concern me, is that you get the right treatment for your situation. Most doctors bypass the 24-hour urine analysis test because treatments like allopurinol and febuxostat are equally effective for under-excretors, and over-producers. Any person who might have problems with these drugs deserves the investigation to see if they are an under-excretor, so that additional treatments can be considered. To me, it is that simple. Personally, if I was in a similar situation, and I could not get an adequate response to a request for a simple, well-established test, then I would have to think seriously about my options to take the matter further (either legally, or professionally).
Hi Don,
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Of course, Crohn's is a disease involving an improper immune attack against many parts of the body. It most manifests as severe and lifelong colitis/diahrrhea.? You have a regimen in place that moderates the severity of the disease but now you have a complicating factor, gout. (Personally I feel these arthritises are more related than most credit them .)
So, very pragmatically, you need to see which agent both lowers your serum uric acid below 6.0 consistently without falring up your Crohn's Disease. Since you say that cochicine, allopurinol, and indomethacin are off the table you need to try the others. They are Uloric, probenecid, and sulfinpyrazone in the U.S. and benzbromarone in some other countries. Of these only Uloric is very expensive.
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I think these agents should be tried one by one, perhaps a month each, to determine both efficacy and tolerability. I'll bet one of them will be okay?I HOPE one will be.
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I also suspect that once uric acid is controlled, you will be somewhat less bothered by some of the gazillions of manifestations of Crohn's.
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edit: Let me make an off-the-wall suggestion and recommendation. Why not try drinking a glass of KEFIR every day for a month. It is a very complex probiotic that will establish a different flora in your intestines. It MIGHT ease your Crohn's?it CURED my irritable bowel syndrome.
Worth a try, nothing to lose,?and it is QUITE delicious. (Since the milk lactose is all pre-digested by the little buggies, lactose intolerance is not a factor.)
The?Global?Healthy?Living?Foundation, a patient advocacy group that seeks to help people with chronic illnesses, is speaking before an FDA hearing on June 21st and is looking for a patient with?gout?to testify about his or her experiences.?
We know the suffering and struggle over access to medications or care that?gout?patients endure, and we are speaking from the advocacy side to the FDA. However, your message, and your words, should be represented. Before the members of the Arthritis Advisory Committee treat any subject concerning?gout?or vote on approving any new measures or drugs, they must understand.?
If you live in DC/Maryland metro area and are willing to share your experiences?living?with?gout?for a very short presentation (3-5 minutes) before a committee on June 21st, please get in touch with us, emailing me at [email protected]ghlf.org?or calling (845) 348-0400 for more information. Please contact us as soon as possible because the names for speakers must be confirmed by May 28th.?
Thank you so much.?
All best,?
The?Global?Healthy?Living?FoundationIt is with the strongest of apologies that I write this message to all who responded. My wife became ill the past two weeks and prior to that, until today, I've had no computer. The system did a total meltdown (software wise) and I had no way to get online. I've since acquired an old used Dell that runs o.k. but has an old, unsupported OS installed.
Thanks Keith for your analysis of the situation is perfect. I believe my PCP doc wants to provide the easiest method to treat everyone–that is, prescribe a med and hope it works. It's faster than all those tests. In my case though, the Crohns seems to have made him gun-shy about prescribing a drug. Also, I have an allergy to SULFA based drugs.
Thanks to zip2play as I too believe that all the problems I've had over the years beyond Crohns and Gout are a manifestation of the Crohns as well as the medication. I can't prove it but since I feel I know my body better than any doctor regarding changes in my physical health and changes in meds, they are always a crap-shoot. My gastro admitted to me many times that he is mystified that my body never seems to react in what he considers a 'normal manner' both to changes in meds and changes in diet. Your suggestion re:Kefir is well taken. However, I've never heard of it and the posibility that I could have a reaction to it. Where can this be bought and what is the cost? One of my supplements is a probiotic with 14 billion different buggers in each capsule. I have to stay away from sugar in all its forms—cane, corn, etc. But I'll look into it.
And thank you to GHLF for the invite, even though it's too late, but I live in the middle of New Hampshire and wouldn't be able to attend. Also, with my Crohns being so active, I find it hard to leave the house. I get out about once or twice a week and only for about and hour or two. By that time my anti-diarrheal meds start to wear off. Not much of a life but at least I'm alive!
My gastro doc thinks that the only way to know if a gout med will work for me is to try it. As was stated by hansinnm in the above post. He couldn't offer any more than that because, as you all said, each doctors specialty doesn't necessarily mean he knows how to treat other than what's known to him. I guess the verdict is to give the gout meds a try and hope for the best.
I’ve also got crohn’s disease and gout. My doc in New York but me on allopurinol in May.
I was worried but I’m surprised to see my crohns seems better. I’m going longer between humira shots now. I got to 3 weeks, but in September I was on vacation and lasted 4 weeks. My doc never heard of this before!
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