Just been daignosed with pseudogout and need help to understand the condition.
Posted , 2 users are following.
Hi Folks,
I have just been diagnosed with pseudogout in my left knee, confirmed with x-rays of that knee. I thought it was just some cartilage problem. I twisted my knee many years ago and now and again it would swell up with no real pain. However this year it has swelled up big time two or three times and there has been significant pain so I went to the doc. He arranged for an x-ray of the knee and it showed that I have chondrocalcinosis or pseudogout, also termed calcium pyrophosphate deposition (CPPD).
When I had this recent attack I couldn't put much weight on my left knee and adopted the R.I.C.E. regime i.e. Rest, Ice, Compression, Elevation and took co-codomol for the pain. It's just about abated now but I have to be careful not to do too much or it starts to hurt again.
To be frank I've got no idea where I go from here. I surely don't want to spend the rest of my years sitting with my leg propped up on a cushion. I like to get out in the open air and walk, don't want to have to stop doing that.
The only positive thing I've found so far is that CPPD is not affected by alcohol!
It appears there's no recognised "good diet " for either preventing it or reducing the chances of another attack ... at least not that I've found so far .... and anyway, is that the way it goes? You get over an attack, the pain subsides, the swelling goes down and then all is hunky dory until wham, you get another attack.
I just don't know ............. I've got a lot to find out, so any advice would be gratefully received.
Regards,
Phil.
0 likes, 7 replies
jx41870 phil17356
Posted
Phil, congratulations, you're the first person I've ever seen who had a formal, confirmed diagnosis of pseudo-gout! Somehow I doubt you're happy about it even so.
I've read the same material as you.
I'll say this, and hope it encourages you. I've self-diagnosed with pseudo-gout in upper part of my foot and ankle. And yes, it went away.
Now in my case I had previously had "real" gout, and my uric acid levels run high at the best of times. I've avoided real gout using celery seed (search for details), but just this week have had the first return of the foot/ankle variety in several years, fortunately not too badly (so far).
Have you previous experience with "real" gout? Do you have your current uric acid levels?
Best I can recommend is keep exercising it lightly, that seems to help more than hurt. Try reducing the calcium in your diet. Have your vitamin D levels checked. Make sure you're getting the dietary complements to calcium: magnesium, folate, and vitamin D. Green leafy vegetables, vitamin D supplements. Do you take fish oil or have another source of omega-3 in your diet, might help some too.
phil17356 jx41870
Posted
Hi jx41870,
Thanks for your response, it was very helpful, informative and especially, supportive.
It is a relief to know that it will probably go away at least for some period of time, there's only a small amount of swelling today and no pain at all. When I first saw the diagnosis I had visions of being incapacitated for the rest of my life with my leg up on a cushion all day.
I used to regularly take cod liver oil capsules, ref your mention of omega-3, (and garlic pills) but for some reason I seem to have stopped that. I think it fell in importance to me since it was elective and some reports in the press seemed to indicate that they had little if any effect. It was also because of the slew of other prescribed medication I seemed to be just shoveling down my gullet and I didn't like the idea of being a hypochondriac . I think I'll reinstate the cod liver oil capsules. We do eat a fair amount of fish at least some of which is salmon so that's good.
Some advice I've seen somewhere also mentions keeping well hydrated, which I'm not too good at doing, so I need to address that. I'll also try to take on board the other suggestions that you mention but I will need to run these past my doc since I'm on Warfarin and I need to keep my INR under close scrutiny, which means that it is necessary to make sure that other supplements do not fight with the warfarin ... for example, green vegetables, especially kale, can adversely affect my INR, so I need to watch how much I eat.
Reducing the calcium in my diet? ... oh dear ... I'm afraid I'm a bit of a "Ben Gunn" personalty ... the last time that there was the thought, erroneously as it turned out, that I should stop eating cheese ... soft, hard, any cheese ... I nearly went into shock and consumed as much cheese as I could stomach before anyone dared to tell me I couldn't!!!! Hey, ho, if I have to do it, then I have to do it.
No, I've never had "real" gout. As I understand it the crystals that form on the cartilage are crystals of uric acid if it's gout but for pseudo-gout the crystals are calcium pyrophosphate. However you are right, it's worth mentioning my uric acid levels to my doc when I see him.
I don't know if you are UK based or not but if you are then I'm sure you'll know that getting an appointment to see the doc any time soon involves a long wait ... currently it's toward the end of November!
I hope your foot/ankle doesn't become too much of a problem and that it is a short lived attack, I'll be thinking of you.
Ah well, onward and upward. Now I can bend my knee a bit more easily I'll be able to get on with all that praying that I've missed out on š ..... not to mention grouting the bathroom!
Regards,
Phil.
jx41870 phil17356
Posted
Phil, thanks for your support to me, too! On my side, so far so good, but it's not quite gone yet either. It can clear dramatically overnight, or it can drag on for weeks as it slowly fades. I haven't been x-rayed so I'm not positive if it's real gout or pseudo-gout, so I stick to a regular gout strict diet until it goes away. Maybe that helps.
Now getting back to you, do you know your current uric acid levels - it's part of a regular blood test. I'd expect they did that before doing the x-ray? But even if it's high, if it's never been gout before, then that's interesting. I'm trying to determine if there's any relationship between them.
But if you're taking other meds, then of course any treatment plan might get more complicated (except, for pseudo-gout, there almost isn't one!).
I can hardly even eat fresh fish (or pickled herring) anymore because it can raise uric acid dramatically. I take the modern (oderless) fish oil capsules, much more pleasant, by all accounts, than the old cod liver oil. But cod liver oil does also contain vitamin D. And if you can eat fresh fish without it raising your uric acid, you're probably fine on that count. I suppose I should really be on allopurinol (gout drug) anyway, and then by all accounts I could eat fish and other "bad" foods.
Hey, if you ever do see a doctor about this, and learn about any relationship between gout and pseudo-gout, please do share! Thanks.
phil17356 jx41870
Posted
Hi JX41870,
Thanks for that.
I shall certainly resume a fish oil supplement, we had salmon last night for dinner š and the garlic pills, I'm pretty sure it won't actually do me any harm and if it has even a small positive influence then why not? I'll also look into the other supplements that you mentioned originally.
My other meds relate to my aorta. I had a pseudo thoracic aortic aneurysm which resulted in a significant hunk of my aorta being replaced with a Dacron graft (aortic root, aortic valve, which was already a mechanical one and the hemi-arch) last November plus a new mechanical aortic valve. So I take warfarin to guard against blood clots, and ramiprill, digoxyn and bisoprolol to keep my blood pressure in check and slow my heart rate to combat Atrial fibrillation. Not that my blood pressure was ever high in the first place.
When I see the doc later on in Nov I'll ask him what the link is between gout and pseudo-gout and I'll surely let you know what his response was but be prepared for a pretty non-committal answer. I get the impression that pseudo-gout is not a hot research area!
The knee feels good today, I hope your ankle/foot does too, might go for a short walk in the autumn sunshine.
See ya š
Regards,
Phil.
jx41870 phil17356
Posted
Phil, I never tried garlic pills but I certainly like garlic in my food and believe it has health benefits - not necessarily gout-related but good stuff. I got a letter from the doctor that we must "watch" my aorta's diameter, but no immediate need for the reinforcements. Glad the knee is already better, and no reason it shouldn't clear completely within a few weeks. Thanks.
phil17356 jx41870
Posted
Hi JX41870,
How are you doing?
My pseudo-gout attack subsided after about 2, 3 weeks and so I cancelled my trip to the GP as I was feeling fine. However I had been referred by my GP to the āMSK Specialist Triage Gloucestershire Health and Care NHS Foundation Trustā (what a mouthful!) and they set up a visit to the physio.
I thought that rather strange since there was no way I was going to let a physio yank my knee around while it was swollen and hurting and anyway it had gone away. I went along anyway and learnt lots. Strangely the knee started to swell up and hurt a bit 3 days before the appointment ā¦ this canāt be psychosomatic can it? Hey, ho.
Basically it was a thorough examination that seems to have ruled out, at least for the time being, osteoarthritis, so thatās good. He said he could neither predict or prevent another attack. He didnāt think there was a good diet or a bad diet relating to pseudo-gout. The best we could do is to prepare for the next attack by making sure that my musculature is in good shape as it is the muscles that keep the bones of the skeleton in place. To that end he gave me a series of exercises to strengthen my muscles.
I said Iād get back to you if I learnt anything about the relationship between gout and psudo-gout: the physio said he didnāt believe there was any link between the two and that the one wonāt morph into the other. It is possible to have both I think but that is not so in my case.
Well, thatās about it. Hope all is well with you.
Regards,
Phil.
jx41870 phil17356
Posted
Phil, thanks for the follow-up! Glad you got better, and I guess the doctor is too as he had virtually nothing to offer, LOL.
I saw my doctor for a scheduled checkup and asked him, and he just shrugged, too. Great, ain't it.