Can anyone share their experiences with RA and then getting gout. I have had RA for 25 years and 18 months ago i suddenly got gout once a month! Horrid! and now my kidneys are damaged. The medication for gout didn't agree with me but i am trying again. The GP said i had a dry kidney and that is why i have been extra tired, short of breath and constipated adn not sleeping well at night. i am having an ultrasound next week of my kidneys.
I am just keen to see if gout is common with RA sufferers. Look forward to your responses
Rosie
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rosie1928...my story started with the unfortunately named pseudo gout, which belittles the condition, the proper name is chondrocalcinosis. It is a gout type condition but rather that laying down uric acid, calcium is the culprit. Gout and pseudo gout are different, but similar , if that makes sense.
thanks for that info Mmrr..... what a curse that condition is. Does the calcium affect your kidneys?
Rosie, so sorry you ve got gout too, not fair is it? I don’t but brother does (we thought RA at first and were cursing poor ancestor who passed genes on). Good news is it’s entirely treatable (his poor feet v swollen, painful tophi?) and they said if he sticks to meds no reason to have another serious flare. He too said meds made him feel faint dizzy but this fades as you get used to them. Hope that’s a bit positive: I know it’s v painful, poor you x I don’t know whether there’s a link.
Thanks Kerena. Yes I couldnt take the meds for gout..... made me very ill but now i will try them again. My kidneys are at risk now. I will just have to persevere and hope the side effects go away. So glad your brother has his gout under control.
They said to him tophi (sp?) were warning sign of kidney damage. I don’t know if under control yet, swelling going down a bit: they looked awful to me but he did say he remembered drug side effects improved with prior flare. Can they build them up slowly?Hope same is true for you Rosie; it’s not like we don’t take enough drugs already 😞x
The trouble is that some of these clowns do not know what topi look like. I was told that I had typical gout topi (and a very high uric acid level) and this all confirmed gout. However, on ultrasound, I had a rheumatoid nodule, fleshy swellings which come and go and a grisly bony swelling. Guesswork is not acceptable when making a diagnosis of gout or RA.
He had blood work etc done by gp (high uric acid levels) & you could actually see crystals at surface of inflammation on feet so I think pretty sure; wouldn’t wish RD on anyone. He had tests for that too, so hardly guesswork. No ultrasound though. Sorry yours was misdiagnosed: sounds worrying; can you have both like Rosie?
No, I definitely did not have gout. I do notice that alcohol makes the RA flare, particularly beer and next white wine. A small amount of beer will exacerbate it whereas I have to drink white wine for 2/3/4 nights running and quite a lot but it does exacerbate it. Red wine is fine - it contains an inflammatory that cancels out the inflammatory effect of alcohol - therein might lie the cue. A physio was killing herself laughing at the gout diagnosis. She said all her gout patients are male and many of them athletes and they all drink red wine (which exacerbates gout according to her) and eat red meat. I have hardly touched red meat even in early childhood. I find champagne is fine as well, possibly because it evaporates from the body so quickly.
It was a consultant rheumatologist I saw privately who told me I had gout. Therefore, I am very insistent on hard evidence before accepting a diagnosis. Blood tests alone are just unreliable. I think too much weight is placed on them but I suppose it is one of the NHS's means of rationing and pushing the worst perceived cases first (albeit they don't always get it right).
That's not good is it ? Consultant rheumatologist too. Maybe they're hard to tell apart or difficult to diagnose. I 've been off alcohol on methotrexate but free now: sounds like I should stick to red wine then lol! My poor brother is trying to cut back on his beer.
No, they are not hard to tell apart at all which is why the physio was laughing. Doctors are just too keen to diagnose by blood tests and guess work which prolongs getting a diagnosis and that is not satisfactory for either gout or RA. The first cons rheumatologist said about the uric acid level "that far too high for a lady" and the NHS one said "corrrr". He also said it had been going on for far too long continuously (six months) to be gout. Anyway, he ordered the ultrasound and MRI which confirmed the RA. All either of them had to do was draw the fluid off my hands and see if there were any crystals in it. I was going to the gym every day which was keeping it at bay. I sometimes think with the NHS, you have to put the agony on and exaggerate to get anything done, which is why some people do it, as otherwise you are pushed to the back of the queue.
I'm afraid any alcohol, including red wine, is best avoided if you're susceptible to gout Keren, it does run in families. Beer is worse so your brother would be helping himself if he can stop drinking it, or anything containing purines, eaten or drunk, in moderation eh?! You spelled tophi correctly by the way. 😉
Cheers nmh; I was worried about him having RD at first. My poor bro is a keen cook, no more seafood (prurines) and beer drinking (again 😢). His fingers swollen this week again so struggling with the beer & I thought it was only feet; I can see why 2 get confused.
My days of drinking sadly over: I just have very odd glass of wine 🍷 now and bud light very occasionally in garden in Summer with lemonade top: such a pleb. Although I do love a dash of courvoisier in tea or coffee in winter: used to love country walks in winter with dog with flask of it. Good grief I ve made myself sound like proper alcoholic there, time to stop rambling x
Oh yes.....like someone has just dropped a house on your big toe...... Thanks so much for your reply. It was interesting what you said about menopause.... never heard that before but i will look into it. My gout came suddenly 18 months ago. Not a big meat eater and dont drink. Many thanks. Rosie
Have had ra for about 20+ years and lately having gout in my wrists elbows and shoulders at first did not realise the horrible pain was gout, but am now going through tests to confirm. Pain usually lasts only a day or so but makes Everyday tasks beyond me and for a short time feel very low but with a dog to exercise and life to live just take a deep breath and get on with it
There is a specific test for gout. A needle has to be inserted into an affected joint and the fluid drawn off. If it is gout, the fluid will contained crystals.
Raised uric acid levels can be caused by a lot of things and gout cannot be diagnosed on that. My uric acid levels went up to 465 (female) and, yes, a diagnosis of gout was made on that but it was false. The condition got worse, in particular when I altered my diet to suit gout, eg cut out fish and ate loads of cherries. It continued for six months and various tests confirmed RA. No gout was ever found. There was a significant reduction in kidney efficiency plus a high level of red blood cells which could account for high uric acid.
Thank you for that. Yes it doesnt matter how i alter my diet it doesnt seem to make a difference. I got it suddenly ..... after a period of tremendous stress. and it hasnt abated. I have never had the test that you explain... the local withdrawal from affected joint. I joined the gym seven weeks ago and so far no gout attack in feet but my uric acid levels are even higher. This is the longest period i have been free from gout... it usually comes like clockwork -- every three weeks. My doctor also asked me if i was bleeding anywhere so something has changed there.
Maybe the doctor is so certain that he does not think a test necessary, in the interests of economy.
If I were you, I would feel happier having the gout confirmed by the presence of crystals in the joint. It is those crystals that make it so painful. You should also get a full blood count done (especially red blood cell size and distribution/haemoglobin), but also those on the liver. Also, you should have a full kidney test done. Sometimes it is the kidneys causing high uric acid.
Almost everyone I know - gout sufferers including those where it runs in the family plus health professionals like physiotherapists and osteopaths - all say that diet does affect gout. In particular, alcohol does affect gout especially beer and I am told red wine.
Yes my kidneys are damaged by uric acid. The results came back last week.I dont know which came first......I have had fluid retention for a long long time. I dont drink alcohol and no-one else in my family has had gout. Full blood count was done last week. At present the joint is not swollen which is very unusual but the uric acid count is higher than it has ever been. Its a case of which comes first .... the chicken or the egg. lol
What is your uric acid level? Impaired kidney function can cause high uric acid levels. The high uric acid will cause kidney stones but my understanding is that the impaired efficiency of the kidneys causes high uric acid to start with (ie not the kidney stones causing high uric acid).
There is another process which turns the uric acid into crystals in the joints, ie causes gout. I would still ask for a specific gout test. It sounds to me as if you should have been having treatment for your kidneys.
Of course, kidneys performance slows with age.
All of these conditions are awful and early treatment is never forthcoming. As with everything, it is best to keep your weight down and to exercise to try to keep uric acid levels down.
thanks for your answer. Yes i am having further tests with my kidneys..... an ultrasound next week. I have taken up exercise at the gym and have had less joint flare ups with the gout but my uric acid levels are very high. I didnt ask my GP this time about the uric acid level..... guess i was in shock about my kidneys. She said i have dry kidneys.... which means they are not get rid of toxins from my body.
I cant imagine how awful it would be to have gout in elbows and wrists. It is horrid in the big toes. So glad for you that it only lasts a day. Yes it would render you incapable of doing anything. And feeling totally miserable. Hope you get a proper diagnosis Miasnana.
A lot of your symptoms sound very common to me Rosie I'm afraid, the fatigue, being breathless & not sleeping well. Not me but my h who has recently been diagnosed with chronic kidney disease.
Gout is usually genetic, often you'll find at least one other family member who is symptomatic, or had/has kidney problems & is a form of inflammatory arthritis, you probably know that. Years ago it was thought there wasn't a connection, this was because RD patients were treated with aspirin (before the advent of all the meds Rheumys have available to them to prescribe). The high doses of aspirin helped their kidneys rid them of uric acid & in turn the gout. Maybe it's a thought to discuss with your GP if you continue to have problems with what's being prescribed & if your other meds don't contradict.
I hope you can get on top of this, it's blinkin painful & it happening every month, well, it needs controlling doesn't it. Actually for me because the first prediagnosis symptoms of RD were in my feet my h thought (read was sure!) I had gout & I didn't think I did, that's why I went to the GP, to prove he was wrong! So fortunately (!) I was diagnosed with RD & on my meds just over 6 weeks.
Let us know what the ultrasound finds & meantime you could try not eating or drinking purine-rich food & drink. x
thanks for your post. Its very interesting about the aspirin .... will talk to my gp about it. RA is in my family but haven't heard of any cases of gout in my family at all. I am convinced stress brought it on. That year was a truly horrible one with three major events in a short space of time (few months), my marriage ended, I had to move, my grandson had a crisis and i had to find housing for him within days, and my son had a severe accident writing off his car.
My mother who had a very mild case of RA ended up with kidney problems. I dont remember her having gout.
She never understood my illness of RA as i was very sick with it and she just had some joint pain which didnt affect her lifestyle at all. It was a very unfortunate situation as she had expected me to do things i couldn't do and got very resentful towards me when i wouldn't (and couldnt) nurse my brother when he got ill. It was a sad misunderstanding and I must say the rest of my original family were the same.
They had trouble understanding RA and wouldn't accept that i was chronically ill.
My mother when she was 80 had more energy than I had at 60 years of age. She had an half an hour nap in the avo and i had my two hours when i visited.
Its the old thing with RA.... we smile and look good. I read in a medical manual that people with RA are often pleasant people. Well thats a plus isnt it? you have to laugh!
Sorry about the novel but it helps to talk about it. Mum has gone now..... she passed away with dementia.... the kidney failure didnt affect her much. xxx
Sorry Rosie, didn’t mean to jump your post, all v interesting. Does anyone know if there is a link between the 2?
PS I have hands free lead for dog, bonus this week as flared shoulders x
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