PMR, OMEPRAZOLE.... AND GOUT??!
Posted , 11 users are following.
I have had PMR for exactly two years (yay happy anniversary to me) and on steroids for 22 months. For the first six months I was happily taking the steroids with yogurt and experiencing no gastric problems but then the rheumatology registrar persuaded me, against my better judgement, to take Omeprazole. "When you drop dead from internal bleeding, the coroner will want to know why I didn't prescribe it" were his exact words...
I was down to 5mg steroid at the beginning of the year and dropped to 4mg in May (again against my better judgement as the consultant told me to do alternate days rather than the much more gradual tapering that most of us now do, thanks to Eileen and Mrs O). I had had a swollen knee for about six months ("knees are not involved in PMR" was all I got from the consultant - you are probably spotting a theme here...)but it got much worse after the drop in steroids and then my calf swelled up and my heel which had been painful became numb - and still is.
Anyway, to cut a long story short, the registrar finally aspirated my knee and found gout crystals in the fluid. I am about as far from a typical gout sufferer as you could imagine - and I have been on a low purine diet since my husband developed it five years ago - so I found this odd to say the least. And then I suddenly wondered whether the Omeprazole might have caused it. There have been a couple of papers written on the link between Omeprazole and acute gout attacks, so it has obviously happened to other people.
So I am stopping taking the Omeprazole - which I think I should never have been on anyway as I have borderline osteoporosis in my spine and it impedes absorption of calcium - to see if it is has any effect. My question is, should I be tapering off the Omeprazole? My doctor gave me 10 mg instead of 20mg capsules which I took for a week and then I opened the capsules and removed half the dose for 2 days, but yesterday took nothing and had my first ever experience of indigestion.... Nothing that I can't put up with though. Just wondered if anyone who has been through similar has any advice.
Oh and guess what - the registrar is now saying maybe it was gout all along which is ridiculous. I have witnessed gout attacks and know how agonising they are. The first three months pre-steroids, were all about muscle pain/stiffness, tiredness, loss of appetite - not a hot swollen joint in sight!
Sorry this is such a long, rambling post....
0 likes, 16 replies
jennissw Dinah54
Posted
Anyway .... yes do taper. One should taper off of any long term medication of any sort, over the counter or not. Give your body the chance to adjust and make the adequate gastric adjustments. As you do, eat as alkaline as possible, trying a peeled apple before foods, a stick of celery here and there as well as cutting out acidic foods.
From all that I see on this site, it seems to me half the consultants trwa patients as tough they are text from a medical journal. Its as though we all respond to everything like drones and have no physical individuality. If this were the case, why is it we dont all have asthma or why do some people get chicken pox and some dont? I would say work with your GP instead.
A
Dinah54 jennissw
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mrsmop Dinah54
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I was just looking at the Omeprazole side effects on Drugs dot com. I'm glad I don't take it!
As for your registrar, I wanted to slap him around the gills with a wet lettuce! [Sorry, not often let out]
EileenH mrsmop
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Yes, funny what you find when you look at what the manufacturers tell us too. I hate it when the doctor then says "Never heard of it..." - and it is in bold print in the BNF or MIMS. Even often on the data sheet in the pack.
EileenH Dinah54
Posted
Yes - one of the problems with PPIs (the group name for omeprazole and co) is that they are so efficient at stopping acid production that when you stop taking them there is someething called "rebound" and your stomach produces even more acid than it was before so tapering is a good idea - though how you can do it I am not sure. Another option is to take ranitidine (Zantac), the previous substance used before PPIs were invented and successfully marketed to make Big Pharma more money now that ranatidine wasn't (cynical? Moi? Perish the thought!). Many gastroenterologists wonder why it isn't being used more - it is pretty much as good in most cases as PPIs with probably fewer side effects.
I got the "you must take it" from a couple of bunnies in hospital. One was for the PPI because I am on pred and the equivalent of warfarin - but I had to pay the full whack for the PPI as here it isn't supported by the state funding. Far preferable - my GP has given me a delayed release form of pred and that also solves the bleeding question. Enteric coated pred is, by the way, cheaper than ordinary pred plus a PPI. Just thought I'd mention that fact. The other "you must take it" was for a statin - I wasn't happy, common side effect is muscle pain. I've had quite enough of that thank you very much. Within 10 days I could barely walk 50 yards and any slope or steps defeated me and I felt so ill. I stopped taking it, the cardiologist was fine about it - and after 18 months my cholesterol is top end of normal. That's fine.
The adverse events are NOT being reported for most relatively new medications: "that's common, we know that, no need...". But there is a need - it is believed that only about 5% of adverse events are actually reported. So that means that a side effect that apparently occurs in 1 in 10 patients probably occurs in well over half of patients - at a conservative estimate. So not so unusual then?
Well I've read a number of textbooks and medical publications about PMR. They obviously were different ones to the one your rheumy read - I didn't think there were that many rheumy textbooks... And anyway - I prefer to believe my personal experiences of what patients tell me. We told a few rheumys in a research group that urinary tract problems are common in PMR, we think caused by the PMR. One of them now tells me that, now she is aware of it, lots of her patients are telling her that, yes, it is a pain.
Gastric bleeding can happen fast - a friend was told to take ibuprofen for her PMR and after 3 days was in A&E with a gastric bleed. Other doctors tell me they've never seen a gastric bleed due to pred alone.
Dinah, hardly a long and rambling post! I'm good at those so I know. And it is far better than the person who posts saying "I've got a sore leg - could it be the x,y or z...?" Diagnosis? Dose? How long? And when you question - they are taking about 10 other drugs too. ;-)
GM70 EileenH
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I felt that I just had to mention this. I have just been reading your post to Dinah54 from three days ago and was absolutely amazed to see you mention urinary tract problems in relation to PMR. Earlier this year, before I was diagnosed with PMR, but was suffering with symptoms, I had a three urinary tract infections and was prescribed antibiotics. Prior to this I hadn't had a urine infection for about 10 years. My very good GP did send me for a Cystoscope just to check that there wasn't anything sinister going on. I was given the all clear from the Cystoscopy and have now been given Antibiotics to keep at home so that I can start them immediately at the first signs of an infection without waiting for a GP appointment. Fortunately I have not needed them and I am glad because I steer clear of Antibiotics unless I absolutely need them. I am now on Prednisolone 15mg and starting your slow reduction next week. Have been on them 5 weeks now. I know that my urine infections could be nothing to do with the PMR but it is a coincidence isn't it. I couldn't believe it when I saw your post. This site has given me so much insight into this strange disease. Thank you to everyone for all the help.
EileenH GM70
Posted
What we suspect happens is that the bladder doesn't empty properly and that predisposes you to growing bugs - incomplete bladder emptying is one cause of infections.
Another cause of what is apparently an infection is allowing the urine to get very concentrated - especially if you are travelling and not drinking for long periods because it is so inconvenient. You know, having to stop for a cafe and then an hour later a loo!! It happened to me on several occasions - and then the light went on! If you are taking calcium tablets the calcium level in the urine is higher. If it gets too concentrated the calcium forms into grit and it irritates the urethra - and it HURTS! Like passing tiny kidney stones.
The leaking/stress incontinence we think is probably just the PMR affecting the blood flow to the bladder wall muscles and them just being weak- like the rest of us. MrsK reckoned she should take out shares in Tena! But the good news is that it eventually stops - I haven't bought a pack for nearly a year :-)
GM70 EileenH
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debbie27473 Dinah54
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Just a quick note to empathise with your heel problem. I too get this. Extremely painful. Some nights I find it hard to sleep due to every position putting pressure on it. I end up with my foot hanging over the side of the bed! My partner bought me a footstool recently and when sitting in the evening, this is great as I can move it closer to my chair so that my heel is not on it but my legs are still supported. Takes a bit of jiggling but worth it! (Would be great if someone did the jiggling for me but that doesn't happen in our house lol)!
Dinah54 debbie27473
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debbie27473 Dinah54
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EileenH debbie27473
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Do both of you check with your doctor just in case - I don't know what other medication you are on but some things they use can lead to neuropathy and numbness as a result.
Dinah54 EileenH
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My doctors are completely uninterested in my numb heel. But I do now have a consultation booked for a second opinion from a rheumatologist at Guys, London. No idea whethere they are any better but I thought at least they might look at the whole picture instead of telling me certain parts of my body are out of bounds when it comes to a diagnosis!
EileenH Dinah54
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Good luck with your Guys appointment. Don't know anyone there - I'm an out-of-London fund of knowledge ;-)
carmel83758 Dinah54
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I now take bicarbonate of soda which helps with the pain in the back although it is still there. It is supposed to help with acid reduction and some people take it for pain so there must be alink there too.