How’s Your Gout, terise?

[Keith Taylor]

@terise became a registered member 1 day, 8 hours ago

How’s your gout, terise?

[terise]

How long do I have to wait for moderation? This is exactly what happened 10 days ago. How can I get any help if the moderator is not “moderating”???

[terise]

Already replied to this about 10 days ago. Don’t know why is did not post to the forum but will give it another try.

I’m still having terrible pain since July 2014. Constant left ankle pain, feels like it’s sprained. Very swollen, like 3 times the size of my right ankle. It is NOT red, purple, hot or inflamed. Cannot bear any weight on it when I first get out of bed, and then in the late afternoon/evening gets really bad again (probably from working all day). Doc wanted to do x-rays first in September, which were negative, THEN she did uric acid blood test which was 7.5. This was early October. Did not receive ANY treatment plan. I had to beg for pain relief. Finally got an rx for indocin on Oct 23, 50mg 3 times a day. Around the middle of October I started getting sharp shooting/stabbing pains that felt like someone was poking me with a sharp knife or what I could imagine an electric shock would feel like, only 100 times worse. The indocin did help greatly with the shooting/stabbing pains but the swelling and constant “sprained ankle” pain is still present. Having some side effects from the indocin including diarrhea, gas, bloating, and some occasional lower right quadrant cramping.

I have an appt on Monday Dec 8, but that is mainly for GYN issues. I am 54 and thought I was menopausal (15 months since my last period but then I had another one middle of November). My hormones are way out of whack…feeling every emotion from rage, anger, crying, manic, which I have no control over. I feel like I am out of control but unable to do anything about it. I will certainly be discussing the gout along with everything else. I’m an emotional wreck, in constant pain, work 7 days a week to survive, so stress level is very high.

So my gout “attack” has been going on since July…almost 5 months. Is this normal? My doc gave me a gout “diet”, but I rarely, if ever, eat any of the foods high in purines. I do not drink. I hate seafood of any kind, do not eat organ meats, tripe, liver, sweetbreads or wild game. In the past I might have eaten red meat or bacon 1-2 times a month. I have stopped eating all red meat. I have chicken maybe once a week. Do not eat gravies or sauces made with meat. Drink 80-100 oz of water a day, low sugar juice, diet soda, an occasional sugar free ice tea. I do not care for/eat asparagus, cauliflower, spinach, mushrooms, peas, beans or lentils. I pay very close attention to food labels and will not buy anything with high fructose corn syrup. So basically I’m eating low sugar cereals, bread, pasta, rice, low fat dairy (milk, yogurt, cottage cheese), apples, grapes, salads, eggs, peanut butter, popcorn, carrots, corn, green beans, almonds and granola bars.

Any advice/experiences would be greatly appreciated. About at my wits end here if I can’t get any help from my doctor, and I don’t have the money or ability to go to a different doc. I’m stuck in the VA (Veteran’s Health Administration) and hating it more and more every day.

[Keith Taylor]

Gout pain treatment is your immediate priority, but most important is getting uric acid down to 5 or lower

Colcrys is good to prevent gout pain, but expensive. You can get help at Needy Meds – http://www.needymeds.org/generic_list.taf?_function=name&name=colchicine

That site also has lots of info on finding other sources of medical help. For now, let’s focus on training your doctor.

If getting Colcrys is an option for you, then let me know, and I’ll help you with the best way to take it. Note that, now your first post has been moderated, then subsequent posts are published immediately.

Indocin is a popular anti-inflammatory for gout, but there are other choices. Work with your doctor to find the one that has least side-effects for you. Everyone is different, so it’s a question of trying different ones. Most people seem to think that naproxen is best. Personally, I used to use ibuprofen before I got gout under control. Whichever you try, make sure your doctor understands you need the maximum safe dose for gout.

Often with gout, anti-inflammatories are not enough. There are several analgesics that are safe to take alongside anti-inflammatories. Paracetamol (Tylenol) worked for me, but ask your doctor about different choices that might be better for you. The plan is, you take the Indocin (or other anti-inflammatory) every 4 hours. After 2 hours, if you cannot bear the pain, you take a paracetamol (or other safe analgesic), and alternate the two. Make sure you stay within the safe limits of both pain-killers. Make sure you ask your doctor clearly what the safe limits are, and also read the labels to double-check.

The gout diet advice you have been given is so out of date it was probably written with a quill. Ignore it. If you don’t eat red meat, and limit white meat and fish to once or twice a week, your diet is perfectly OK. Bad diet can make gout worse, but your good diet has nothing to do with your gout, so stop worrying about it. Your gout might be due to other meds that you take, but it is probably due to genetics. You can’t change your ancestors, so you need to talk to your doctor about uric acid lowering.

Allopurinol is best, but let me know first if you are of Han Chinese, Thai, or Korean descent.

Assuming you are not in those ethnic groups, start allopurinol at 100mg per day.

Discuss at target uric acid level for your first year of treatment. 5mg/dL is the absolute maximum, but I recommend as low as possible unless you have other medical problems that might stop this.

Arrange blood tests for 2 weeks after you start allopurinol. Increase the dose every 2 weeks until you get to your target uric acid level. Your blood tests should include liver function and kidney function. Makes sure you get these tests, as many doctors do not bother checking.

After one year, if you have gone at least 6 months without a gout flare, you can ease back on the allopurinol dose to maintain uric acid no higher than 5mg/dL. Make sure you get uric acid, liver function, and kidney function tests at least once a year.

[Keith Taylor]

@terise I rushed that last reply as soon as I saw your post, as I wanted to make sure you got it before your doctor visit.

If you have been, I hope you have been clear with her. You need proper gout pain control now. That means a safe combination package that is strong enough for gout pain. If possible, colchicine to limit the spread of inflammation. Anti-inflammatories at maximum strength to reduce inflammation and pain. Analgesics to block any remaining pain.

Secondly, you need the program I described to get your uric acid safely down to 5mg/dL or lower.

Gout diet is only relevant if you have a bad diet. Yours sounds pretty healthy, so I do not think it is an issue. I’m annoyed your doctor has confused you with this, without checking first that you already have a healthy diet. I’m really angry she has advised against asparagus, cauliflower, spinach, mushrooms, peas, beans or lentils. We have known for many years that vegetable purines do not affect gout. It is disgusting to me that people make gout patients suffer even more by confusing them about diet. If you are worried about your diet, then I can help you make better food choices. But, from what you have told me, there’s no need to worry.

I’m really disappointed that my service levels have not been good enough. I cannot trace your earlier reply, so I cannot say anything more than SORRY. Now that your first post has been moderated, all the rest will be published immediately. I’m going to experiment with that setting, and allow first post without moderation. I only do this to protect people seeing some of the appalling stuff that certain idiots try to post here. If that makes life harder for you, then I want to try the no-moderation option. As I say, it’s an experiment for now, but thank you for bringing this to my attention.

I’m truly sorry that it took so long to moderate your response. I’ve had a really hectic few days, and I released the tension by going out with friends and family yesterday. This is an inevitable delay that is going to happen occasionally because there is only one of me. In the past, other members have volunteered to do some moderating to ease the burden. If anyone is interested in doing this, please let me know.

Terise, my main concern now is that I can help you control your gout and live a happier life. I’ve also been frustrated by medical care. Trying different doctors is one approach, but I learned that another very good option is to train your doctor to be better at treating gout. It can require perseverance, but it is possible. All you need to do is be very clear about what you ask for. I hope my previous post has done that for you. Basically it is a gout-strength combination pain relief strategy, and a safe uric acid control plan.

Along the way, there might be things your doctor says that you don’t understand, or symptoms and experiences that you don’t understand. That is what I am here for. Tell me about these things, and I will find the answers that match your unique, personal situation. You, your doctor, and me. We all work together to help you control your gout.

[terise]

Thank you Keith for your responses. I was beginning to wonder if this forum/website was no longer active. I completely understand that you are running this on your own and I think that is truly amazing. You are to be commended for not only sharing your wisdom and experiences, but giving so much of your time to help others like me who are in dire need of advice.

I did see my doc yesterday although only just now reading your posts. Her opinion was that we should wait for the gout “attack” to go away before beginning the Allopurinol. I reminded her that my “attack” has been going non-stop since July and that I had done some research about starting Allopurinol right away to bring uric acid levels down. So she asked me if I wanted an rx for Allopurinol and I said YES, definitely. She wrote an rx for 300mg once a day. I am not of any Asian descent you mentioned. She told me to continue taking the 50mg indomethacin “as needed”, but if I go longer than 4-6 hours without taking it, the sharp shooting/stabbing pains come back. So I am still taking it 3 times a day. She did mention that I could try colchicine at some later date if the indomethacin stopped working. I’d previously been taking max doses of ibuprofen (2400mg) daily for degenerative arthritis, for at least 7 years, but the ibuprofen gave me absolutely no pain relief for the gout. Have used Naproxen in the past but doesn’t seem to work at all for me for any type of pain. I do occasionally take Tylenol for break through pain, although my doc said that while I’m taking indomethacin I should NOT take any other type of NSAID. Should I ignore her warning about other NSAIDS and perhaps take some Tylenol in between the indomethacin doses?

Yes, the VA (Veteran’s Health Administration) here in the USA is still using health information, policies and equipment from the 1960’s. They are so behind the times because Congress will not give them the proper funding. They’d rather spend trillions on wars we should never have started, drones, fancy new military fighter jets and private contractors with their hit squads, torture and prisons. I am ashamed to be an American, while the current soldiers come back to the states with missing limbs, brain injuries and PTSD, and have to fight the VA to get proper treatment.

I was in the Navy way back in the late 70’s and early 80’s. To me, as an 18 year old fresh out of high school, I joined because I wanted to travel, get an education and get paid while I was doing it. I also wanted to get the heck out of my small town where I grew up and leave my dysfunctional family. I was not the typical “gung-ho, let’s go kill some Arabs” (or Nicaraguans or whomever). I had no desire to carry a gun, go fight in some foreign land, nothing like that. I worked in an office at a base in California, did my 4 years then left the military. Looking back, I would NEVER encourage anyone to join the military, especially these days. But my time in the Navy did qualify me for free medical care at the VA, and since I can’t afford to get medical care any other way (yeah, we REALLY need universal or single-payer health care here in the USA, like pretty much all other countries in Europe, Canada, Australia, New Zealand and even some in Asia, Africa and South America have). But I don’t see that happening in my lifetime, especially with the current brand of conservative Republicans in complete control of Congress.

Thank you so much for all your advice. Now that I am taking the Allopurinol, hopefully things will start to improve.
Not sure if I will be able to “arrange” for blood testing in 2 weeks as I am totally at the mercy of the VA’s decisions and scheduling. If they deem it unnecessary then there is no way for me to have the tests done. I will talk with my doc but she is only allowed to do what the VA says she can do. They will cut costs in any and all ways possible. And my problems are so low on the totem pole compared to newly returning vets with missing limbs, brain injuries and PTSD.

Gawd, I wish I could move to another country. ANY country other than here seems better at this point in time.

[Keith Taylor]

Terise, I can’t advise you to ignore your doctors advice.

What I can advise is this:

When you get the scripts filled, ask to talk to the pharmacist. Make sure he/she knows all the meds you are on, and that ibuprofen and naproxen don’t seem to work for you. Explain that Indocin seem to work most of the time, but you need more help sometimes. Ask if there is anything he/she can recommend that is safe to take with your other meds. This might be Over The Counter, or you might need to try get a prescription. Hopefully that will see you with better pain control until your allopurinol removes the need for it.

My 2 weeks interval for testing is a minimum wait time. It does not matter too much if it takes longer between tests. That just means it takes a little longer to get to the right allopurinol dose. Let’s just say, make your appointments as soon as you can, but not less than 2 weeks. It takes 2 weeks for the allopurinol dose change to register correctly in your uric acid test results.

I feel for you with your poor healthcare experiences. Despite that, you do seem positive about your future. I particularly like ” Now that I am taking the Allopurinol, hopefully things will start to improve.”

I’m certain that they will improve. If you get dark days, come to the forum, and let’s talk about it. As long as we stay focused on getting your uric acid down to 5 or lower, all will be good.

[Keith Taylor]

Any improvement @terise

[Keith Taylor]

I recently got a response from Terise, via my support ticket system:

Thanks for the response but I recently found out that I do not have gout after all. My primary care doctor was the one who dx’d gout but I finally was able to see a rheumatologist who said I did not have gout (as I suspected) but tendinitis.

I appreciate your help though.

So, this shows us all how important it is to see a rheumatologist if your gout is not straightforward. Rheumatologists are best if your gout symptoms are not clear, as in this case. Though gout symptoms are often obvious, there are many cases where symptoms of other diseases can mimic gout. Most often, this is pseudogout, but we can see in this case, it is tendinitis. As discussed elsewhere, rheumatologists are also very useful when treatment becomes complicated by intolerance or other health issues.

Speaking of complications…
If you have problems posting to this forum, you might find my new support system useful. Just click the orange Support tab on the left. I put it there so you can get help with technical problems. If you are having difficulty posting in this gout forum, you can also post via that support button. I will post your gout questions or opinions in the appropriate forum for you.

• This reply was modified 6 years, 9 months ago by Keith Taylor. Reason: Added note about new technical support service

[Author]

Posts