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Table 3 All themes and related main discussions for the effect of gout or its treatment on comorbidity or its treatment from all nominal groups

From: Gout and comorbidity: a nominal group study of people with gout

Theme Score
NGT1, Q2: 3 people: 3 male; 3 African-American (18 votes)
 A. When gout attacks it affects my movement, to walk and work 9
 B. Before I got on the treatment, that I am on right now, the medicine made me sick (allopurinol associated nausea and allergic reaction) 5
 C. Negative response to blood pressure treatment 2
 D. Someone I know lost a lot of weight due to active gout that affected his other conditions 1
 E. During a gout attack, gout test and potassium levels went high and had to be treated 1
NGT2 10 people; 4 male, 6 feamle; 4 white, 5 African-American, 1 Asian (60 votes)
 A. It affects your everyday body and brain functions, movement, physical or mental, makes me less independent 18
• Mobility –it got so bad, I had to wear brace
• It affected my movement, can’t exercise, affects other conditions, I have
• My knee gives away
• Interfered with therapy, back pan and hip replacement
 K. Problem with misdiagnosis: It took a longer time frame for diagnosis of the actual problem in my joints, which is psoriatic arthritis, not gout 7
• General practitioner vs. Specialist: lack of complete understanding; general practitioner not concerned about sleep problems
• Care is fragmented
• I have psoriasis, now off medications, only on gout medications
• Multiple diagnosis cause confusion
 F. More Depression/anxiety due to gout 4
 E. Pain of gout increases your blood pressure and messes with the heart condition 4
• Swelling and inflammation affects blood pressure  
 G. Specific diet advise differs between conditions, leading to contradictions, low protein for gout vs. high protein for other conditions 4
• They are tired of eating “my food”- I am the only one in the house who has to eat only a few type of foods
• A lot of self-control
• I loved sea-food; I haven’t had sea-food for a year, since I was diagnosed with gout I am down to chicken and broccoli
• I love to eat seafood, now I can’t eat it all
• Restriction of certain foods for gout makes it difficult
• Have high potassium- by the time you merge the two lists of foods for both the conditions, you are hardly left with anything to eat- its’ chicken and broccoli – just chicken and broccoli all the time
• With restriction for diabetes and gout, what is left to eat?
 B. I have kidney problems they had to take me off colchicine, since it was causing kidney problems 10
• They put me on Colcyrs which was interfering with my calcium level, they took me off colchicine
• Affects my international issue (diverticulitis)
• Medicine, Indocin, steroids and allopurinol, all caused hardening of the intestinal wall leading to colon resection
• It causes brain fog- colchicine and allopurinol together, have trouble focusing, driving, walking
• Sometimes colchicine and allopurinol gets me a little confused
• Colchicine causes dry mouth, makes me thirsty
• I was put on colchicine, caused gastric problems, has to be stopped
 G. I am diabetic, trying to avoid carbs; proteins that want to take to help regulate my diet, are problematic with gout 3
• Steroids increased my sugars and my diabetes
• Prednisone complicated my diabetes
• It affects my diet and eating regimen
• I was prescribed fish oil for lowering cholesterol and can’t take that due to my gout
 J. Had problems with weight gain due to fluid retention due to gout 3
• Excessive weight gain due to steroids caused sleep apnea
• Can’t exercise due to gout, that caused weight gain
 E. I have osteoarthritis, medicines can compliment each other 3
• I have pulmonary hypertension, heart failure, it does not help  
C. It interferes with other medications and makes me tired 2
• Medication interactions:
• I take so much medicine
 H. Kidney stones were calcium oxalate only, now they are urate and calcium oxalate since I got gout 2
NGT3 Q2 (5 people); 2 male, 3 female; 4 white, 1 African-American (30 votes)
 I. My joints are so sore now all the time, wondering if they are damaged due to (gout) flares 8
• Sometimes unable to do activities of daily living
• Sometimes can’t get to the doctor’s appointment
• Can’t make it to the bathroom
• I was off duty for 2 months due to gout flare
 B. Some of the gout medications such as prednisone can cause weight gain, diabetes and affect eyesight 8
• Bowel problems due to prednisone- pain in the belly
• As far as the treatment goes, prednisone causes me to gain weight
• I have been diagnosed with edema in the legs; I think medications (pain killers, prednisone) have something to do with it -could be the medication, doctor said
• I had to take a lower dose of gout medication due to kidney problems
• I am allergic to Neurontin, it caused face swelling and rash, when I was getting it for gout
• NSAIDs cause bleeding
• I was taking over the counter pain meds for gout, had kidney problems as a result
 E. I did not have high blood pressure until I was diagnosed with gout- not sure it caused it 9
• When you are having a flare, your BP goes way up
• Heart rate was going up during the flare
• I have heart conditions, I have several allergies and I have to take low doses of medications, like ibuprofen that mess them up
 J. Having gout makes me immobile, which makes it hard for me to loose weight 4
• Hard to exercise when foot hurts, have a flare
• I was gaining weight at my first flare
 K. New diagnosis of rotator cuff for the last 3 weeks: Gout caused it to be misdiagnosed 1
 A. Arthritis limits me in a lot of ways, could it be due to my gout? 0
• If I want to take a walk, I can’t go
• Some days are better than others
 H. Kidney stones diagnosed after gout 0
• Had 2 huge ones removed- those were uric acid stones  
NGT4, Q2, 5 people; 4 male, 1 female; 1 white, 3 African-American, 1 Asian (30 votes)
 B. Gout treatment, in particular, prednisone caused weight gain 12
• Gout treatment caused new problems- acid reflux due to pain medications for gout
• Other conditions limit what dose of gout medication I can take
 H. Gout putting you at risk for other conditions 7
 J. Immobility and inability to exercise due to gout 5
 K. Gout being confused with other conditions – I was tested for leg clots many times 4
 E. Higher dose of allopurinol made my diabetes worse 2
NGT5; 4 people; 3 male, 1 female; 3 white, 1 African-American (24 votes)
 B. Gout medicines over long period time cause renal failure 19
• Indomethacin has contributed to my kidney disease- Indocin would reduce flares so I took it like candy
• I would take it very day sometimes twice so that I could get to work in the military, started in 1983 and by 1993, they told me I had “shrunk kidneys”- I have been on dialysis since 2015
• Indocin caused 2 GI bleedings which cost me to need 4 units of blood
• I tried taking Indocin but couldn’t take it, it made me crazy
• Having gout flares all the time, took Indocin, and was diagnosed with stomach ulcers twice
• They tell you to take it (Naprosyn) on a full stomach, I took it once on empty stomach and had severe vomiting
• Prednisone caused renal failure “stage 4 kidney disease: my doctor put me on the prednisone, and they couldn’t get me off; every time they stop it, gout comes right back”
• Prednisone caused me to develop necrosis of both hip joints
• Woke up 1 day, I could not walk, they x-rayed me told me I had arthritis. Then I went to see my rheumatologist, he sent me to the other doctor, and he told me I had hip necrosis. They had to do a hip replacement, it got infected with Staph, then they had to do it again- I was in hospital for months with that, a lot of antibiotics
• I couldn’t take Indocin due to stomach bleeds, so they put me on prednisone, and I had to have hip replacement for necrosis of the hip joint
• Using medicines to subside gout has led to more arthritis which leads to taking more drugs and more side effects
• If you have both gout and another type of arthritis, you have to take more drugs
• I was put on Neurontin in addition to my gout medications
 H. Gout crystals caused me the “kidney problem”- kidney damage 3
• Crystals get filtered by your kidney
• “They (crystals) are like razor knives, they cut your tissue – your kidney, other organs”
 L. The medication I take caused me to get my liver checked often 2
• I am on prednisone and also on cellcept for my scleroderma; on top of that Colcyrs makes my muscle enzyme go up sometimes- they are watching my liver tests and muscle enzymes  
NGT6 Q2, 7 people; 7 male; 4 white, 2 African-American, 1 Hispanic (42 votes)
 A. It affects my ability to work 12
• Totally immobile and can’t go to work with the flare
• Happened after I retired, so no work issues, but bothered at home
• “No body goes to work with gout, you have to be wheel-chaired in”
 L. Very expensive disease to control- Colchicine went from a few dollars a month to high price and co-pay overnight 8
• Colchicine is very expensive
• The only prescription drugs I take are for prevention or active flares
• The medicine for gout doesn’t cure you, you have to keep taking it
• It’s a burden to take pills for gout
• Medicines I take for gout are just treating the symptoms
 B. Side effects 9
• Indocin can mess up your liver
• Colchicine and me don’t agree
• I am worried about long-term side effects
• Had kidney function deterioration due to Naprosyn, they put me on colchicine
• I took big doses of Naprosyn for years, compromised my kidney function, numbers went south- it was 500 mg 2-3 times a day for 15 years
• I worry about side effects and about taking these with other medications
 J. It affects my ability to do my work-out regimen, I work out 3-4 times a week 5
• During an attack, you don’t do anything
• Feet are stiff during an attack
• I work out to keep my weight in check, to feel better, for my neuropathy and to stay fit
• When work out regimen changes, it also can bring out an attack
 F. It affects my ability to concentrate and stay focused 3
• When I am in such abstract pain, I can’t do anything  
 L. Frequent regular visits to the doctor and the lab to monitor various levels of everything to adjust medications - Access to doctors is an issue, when I have to travel, if something happens, whom do I call? 3
• I also have common variable immunodeficiency and when I needed antibiotics, had to choose between antibiotic for infection versus colchicine for gout- I couldn’t take both at the same time, my doctor told me not to  
 E. It totally incapacitates me and causes me to be hospitalized 1
• I was hospitalized because of my gout
• I was hospitalized twice due to my gout (another patient)
• I had to come off my large dose of Naprosyn for Pseudogout and gout, stopped due to surgery, then blew up my body at 3 places (knee, arm, foot) with gout flare, they had to call hospital consult and I stayed in the hospital 3 days longer than planned.
 I. Used to have Achilles tendinitis which was due to gout- with colchicine it’s gone 1
• Had one surgery for my broken ankle and then others due to arthritis I had due to my gout crystals damaging my joints
• Had to have 2 surgeries due to gout
• Broke both my ankles playing football- they keep seeing the break in my ankle on X-rays years after, wondering if that it due to the gout
NGT7 Q2, 6 people; 1 male, 5 female; 3 white, 3 African-American (36 votes)
 A. Since you can not walk because of your pain, you are going to gain weight, and it will impact heart, lungs and body conditioning 19
• I need to exercise, my knees give out
• I can not walk
• Can’t play with grand kids
• When you can’t walk, you are becoming the “Stale old thing”
• “The more you sit, the more you want to sit”
• My gout has caused me not do the things that I normally want to do like shopping and housekeeping
• I love working in my yard, can’t do it now
• It makes me feel old, didn’t have energy, physical flexibility
• Can’t do what you want to do
• You have a 30-year old son, doing everything that you can’t do anymore, he wants you to speed up or get out of his way- I used to be able to do all that when I was young and didn’t have gout, and now I can’t do that
• You are afraid that you won’t be able to get back, if you walk too far because “your foot is killing you” and you wonder if someone can drive by and pick you up and drop at your home
 F. Makes me depressed 7
• Used to take vacation, and go over the U.S. with my husband all the time and we don’t do that anymore, we are afraid, might get sick  
 E. It affects my eczema, when it is (gout flare) in my foot, the foot is itching all the time, and it bleeds if I itch it. 7
• Doctors haven’t told me that I have any other problem than gout
• Take BP pills, but it does not come down- is that due to my gout?
• When gout under control, BP is lower
• Pain is better, BP is lower
• Febuxostat treatment takes care of any arthritis related pain- no other treatment is required, no pain in the knee anymore
 B. A lot of gout medications affect kidneys and liver, especially the pain medication, so you can’t take a lot of pain medications 3
• I love Aleve, but I don’t take it every day
• My liver function was up, when I took a lot of Aleve -I take Mobic low dose and I don’t have any side effect
• Taking the medication (allopurinol) adds to your headache: contributes to the impact of all the medications
• A lot of medications cause allergy- Allopurinol caused rash and itch
• Allopurinol causes me stomach ache, headache, makes me feel bad
 G. Gout interfering with healthy eating; I can’t eat shrimp, cabbage, dry beans 0
• If you goggle, there a lot of foods that cause gout  
NGT8 Q2, 2 people; 1 male, 1 female; 2 African-American (12 votes)
 B. Gout medication – I was allergic to allopurinol 7
• I took allopurinol and broke out in a rash all over my body and inside of the body- I had to be in the hospital for a week, they had to treat me; now I take Uloric, and have no problem
• Can not be out in sun, when you take colchicine- they told me not to do that, I haven’t had anything, but I don’t want to do it
• Medication that I was taking for my gout (pain medication), treatment is too strong for my kidneys
• I can’t take any arthritis pain medication due to my kidneys
• They took me off naproxen, can’t take any pain medication other than Tylenol
• Has a problem with my left kidney- the medication scarred my kidney, they said it was too much ibuprofen and Aleve
 C. Some of the medicines I can not take with my gout medicine- they interact 5
• Gleevac and colchicine interact, my doctors told me I can not take them together, so it’s a problem
• Because of these gout medicines, I can not take medicines with grape fruit juice; I used to take all medicines with grape fruit juice, they told me not to take colchicine with grape fruit juice, so I have to take everything with orange juice now
NGT9; 3 people; 3 male; 3 white (12 votes; 1 patient left before the vote due to transportation issues)
 H. Gout is causing other health conditions 4
• I think it (can) lead to heart disease, diabetes, cholesterol problems, artery stiffness and clogging
• We don’t have as much activity as such, with gout you can even less
• “A ship that sits at the harbor will sink”
 E. It has affected sleep and that affects my overall health 2
• Flares as well as when the gout hurts all the time outside of the flare  
 B. At the back of my mind, I am concerned about the fact that the medicine is affecting my body 1
• All medicine is designed to be one thing, but you know it could cause long-term side effects
• That bothers me as well; I was on Uloric and I was worried about heart problems- They thought I was having a heart attack and I stopped it after that, and am not taking any medicine, just cherry extract now
 A. Limits going to work, activity and going out 5
• When my gout flares, I can not go to work
• It’s like age, “shuts you down”
• Luckily, I am retired, but it interferes with going to other places
• “Overall limits your experience of life”
• It limits socializing
• Used to enjoy going to Nashville, we cut down on the trips since my gout
• Limits whether I can drive somewhere and go eat
• Would always go with wife for shopping, now can’t do that
• Not going to the movies anymore, don’t know when it will start
• “It’s like walking on glass to get to your car- would you do that, or would you rest at your home?”
• Affects vacation - I always get insurance on my trips, don’t know what will happen
• If something happens (during vacation), no way to recover
• I used to snow ski; now I just don’t go
• On the social side, it has affected the activity of having a meal with friends and family
• My son and daughter-in-law like to eat food high in fat; they cut back because of me, and now we have to pick a place that we can all eat at- it affects social life
• It affects social life of my family, since they have to cut down on going out, and eating out
• Before gout, I walked 4.5 miles a day, can it do that any more, restricted my activity
• You just can not carry out activities, need for your shoulder, and durability
• It was a part of my job, I walked a lot
• I was able to maintain my cholesterol with my activity
• It affects my daily activities around the house
• Can’t work in the yard, can’t clean the gutters- I used to enjoy doing that
• I am borderline diabetic, it limits exercise I can do
I. Joints wear out quicker because of gout 0
• I had two joints repaired, in wrist and ankle
• I went bowling and then woke up next day, it wasn’t so good (in my joints)
• Things like throwing football, Now I throw underarm, can not do overarm anymore, because of my shoulder
• You can shoot the basketball, but you can’t get the jump
• Used to water ski- no more since I was diagnosed with gout
• Lack of joint mobility
F. Stress/anxiety due to gout 0
• A joint attack I could think of, experienced psychological side effects
• During the day, no problem, but I wake up so many times during the night, just afraid it’s going to come back
L. It has affected “my time”- You have to spend a lot of time with doctors and getting lab tests done 0
• It affected my time; I am seeing my doctors for gout every month  
  1. Each patient gave 3 points to the highest rank, 2 points to the second highest and 1 point to the third highest rank. In most cases, total votes is the number of patients × 6, except in one case when the patient left before voting, due to transportation issues