October 20, 2018 at 9:24 am #8337
Dean here, I’m in need of advice!
Past Medical History:
Full blood transfusion on birth due to jaundice;
Osgood schlatter disease during early teens;
Adult chicken pox and adult mumps, and shingles;
Bell’s palsy; Gout; Kienbock’s disease stage 3a diagnosis following an injury from lifting in June 2017.
Current Medication: Allopurinol 100mg (have been on this medication one week following 41 days of Uloric); Difene 50mg (three times a day); Lansoprazole (once a day).
First attack in 2014. I’m usually very active and have a good diet. I don’t smoke, and only drink occasionally (would have drank more during my college days, but that finished in 2009). However, when I got gout first it was after being in Orlando, Florida for two weeks and my diet was very poor during that holiday – sugary drinks, some alcohol, ribs and burgers. The gout was in my right big toe joint. I went to Dr and was given a prescription for Difene and a blood test to check my uric acid levels. The Difene cleared up the attack within a week, and the blood test showed my acid levels to be over 600 μmol/L (only found this out on 8 October 2018).
No further attacks occurred between 2014 and May 2018.
My wife and I are trying to conceive. My sperm count was low, so my wife saw a multivitamin supplement called Proceive and bought the max-strength dose. I took the soluble supplement which contains high amounts of vitamin b3, iron and lots of other ingredients for the month of April 2018.
On 6 May 2018 I suffered a very painful gout attack in my right toe – big toe joint and base of big toe.
I went to Dr a couple of days later when Nurofen hadn’t worked and was prescribed Arcoxia. That anti-inflammatory did not work for me and made me extremely drowsy. No blood test was ordered.
I went back to Dr. and was prescribed Difene. That helped with the pain slightly but did not resolve the attack. Took Difene for a few weeks to see if it would work but was not prescribed a PPI and had bad stomach pains as a result.
Called the Dr. for more advice. Was prescribed Allopurinol (100mg) but did not take same as I read online that it should not be taken during an acute attack.
I struggled on for another few weeks on Difene but the pain was still excruciating. In June 2018 my boss suggested I go to A&E to get an X-ray in case my toe was broken (I had been doing a lot of exercise up to the point of the May 2018 attack). The X-ray was clear and the hospital did a blood test and my uric acid level was 538 μmol/L.
The hospital prescribed Prednisone (5mg X 8 for five days), Keral, and Lansoprazole. This prescription gave me a break from the attack of May 2018. However, because of the constant swelling and inability to walk for weeks, I got an ingrown toenail in my right big toe and had to have half of the nail removed and was left with a wound, and I suffered groin and leg strain once I stopped shifting my weight around, thus causing me further pain and restricted movement.
I returned to exercise for the month of July despite my toe joint remaining stiff and achy. I took every natural supplement going because I wanted to lower my acid levels without having to go on Allopurinol (read on numerous websites that it impacts fertility). I took cherry juice, apple cider vinegar, wheatgrass juice, celery seed tablets, lemon juice, green tea with turmeric daily for over a month along with my usual 2.5 litres of water. No alcohol (hadn’t drank alcohol since April, and even then it was a minimal amount), no sugary drinks, and very little red meat (not a big red meat eater anyways).
On 28 July I had one bottle of Lucozade after a 10km walk and suffered another gout attack. That weekend my back went on me, too. I was back home visiting family when this happened. I went to my childhood GP. He prescribed Allopurinol (100mg), Colchicine (500mcg twice a day), Difene (50mg three times a day), and Lansoprazole (one a day). The prescription was a repeat for six months.
I was instructed by the doctor to take 4 Colchicine tablets the first and second day to try stop the attack and after five days, I was to commence Allopurinol. Full blood tests were also done and everything was normal except for my uric acid levels. The levels were 527 μmol/L, a meagre drop despite all my best efforts with natural remedies and watching everything I ate.
I took the medication as prescribed but suffered awful stomach cramps and diarrhoea for a number of days. I called the Dr. and he said to come off everything except for the Allopurinol. I was still having lots of cramps and diarrhoea and the worry of everything made those symptoms worse; I was experiencing panic attacks at this time due to the fact that I could not get the gout under control and was in serious pain with my injured wrist and the stress of the low sperm count and fertility tests my wife was undertaking.
I went back to the first Dr. on 6 August. He took me off Allopurinol in case that was causing the stomach upset and prescribed Buscopan for my stomach cramps, Imodium for two days, and a different anti-inflammatory (Vimovo twice a day). I was also prescribed Uloric (80mg) to be taken once the flare up had settled somewhat.
Started Uloric on 1 September 2018 even though the flare up hadn’t resided fully. I had to stop the Vimovo after a week due to repeated indigestion in the middle of the night – the side effect stopped once I ceased this medication. I reverted back to the Difene (50mg X 3 daily) and Lansoprazole for the inflammation, but I’ve been having constant flare ups/pain in my foot since August.
I even used the Colchicine sparingly when the toe got really bad but the diarrhoea returned after six days of one tablet a day, and so I stopped it. I believe any stomach issues I had while commencing Allopurinol was because of the Colchicine.
Every day I’d experience swelling, joint pain/intense pressure, joint redness, and burning in my toe and throughout my right foot; this made it difficult to walk (feels like I’m walking on stones under my big toe and my shoes don’t fit properly from the swelling).
The symptoms were usually worse between 7 to 11 pm, or if I do more than 10 minutes walking during the day, the symptoms would come on much earlier. I’d been taking the Ulroic at around 7:30 am every morning with porridge and a pint of water. And the Difene and PPI an hour later and two more Difene throughout the day.
The pain was debilitating me because if I did any walking, the foot burned, ached and swelled. I may have a touch of gout in my right knee as this joint seems to hurt when the toe is paining me at its worst.
Every evening while on Uloric I had to ice the foot or put it in a warm Epsom salt bath to take the burning and tightness out of it. If I didn’t I noticed that the entire foot swelled up almost to twice the size of my left foot. This restricted me from exercising or having any form of social life. I’ve even tried Flexiseq for the arthritis pain in my joints – it didn’t have much effect.
The stress of all of this caused me to go back to the Dr. for a referral to a rheumatogolist. I got bloods done and the results showed my uric acid was 267 μmol/L and the Dr. prescribed Prednisone for seven days (5mg x 8 per day) and to continue with Difene three times a day. The rheumatogolist took me off Uloric and put me back on Allopurinol (100mg for first month, 200mg for second month, and 300mg for third month). He gave me two steroid injections into the toe and told me to stop the Prednisone (had taken it for four days at that point), and to continue with Difene for the first month. He said to disregard the blood test since he believed it was done during a gout episode – but so were the other tests and I wasn’t having gout pain just inflammation, burning and swelling…
After a steroid flare during the first 48 hours the inflammation went down somewhat but my face went bright red for days and my leg is lacking power a week after the injections. I called the rheutomologist to see if this was normal and he told his secretary to tell me that those symptoms would not relate to the injections (never mentioned the Allopurinol switch from Uloric) and said go back to my Dr.
I feel like I’ve been pawned off again and don’t know where to turn. I don’t like being so heavily medicated all the time, and I’m getting increasingly anxious about my health.
Any help would be really appreciated.
October 20, 2018 at 4:22 pm #8340
I’m so sorry Dean.
You should really get your doctors examined! Unfortunately, it may prove difficult or even hopeless to find better ones in your area.
Where to start?
First, Uloric 80mg is much stronger than allopurinol 100mg or even 300mg. So your 267 umol test result should not have been any kind of surprise (tests do not naturally drop anywhere as low during an attack!). If you had stayed on that drug, it would have cured your gout about as quickly as it can be cured. Unfortunately, as you noticed curing gout is painful and takes a long time. And delaying treatment means it’s only going to take longer to cure down the road.
Going from nothing to 80mg Uloric is crazy. Aside from the drug’s potentially dangerous side effects, brutal drops in uric acid is known to increase the risk of serious gout symptoms. And that drop was brutal indeed.
But once you have gotten your uric acid that low, you shouldn’t let it climb back. And there’s no way the allopurinol doses recommended by your rheuma will keep your uric acid down!
So my main recommendation is that you promprly get a doctor (any kind of doctor… even a veterinarian if that’s what it takes) to put you back on Uloric or to give you a stronger allopurinol dose (it’s prudent to ramp up allopurinol rather than to suddently take a huge dose but you’d need to ramp up your dose faster than 100mg a month).
Note that I’ve been assuming you really have gout. You certainly have the signs that way but you never know without a definite test.
Another disclaimer: we’re talking about dangerous drugs and you haven’t shared your blood test results (other than uric acid) so I don’t know if you liver looks like it can handle 80mg Uloric for instance. So get some doctor (again, any doctor!) to do some due diligence about the side effects.
I’ll post about inflammation and pain drugs later since I’m not familiar with every drug name you’ve posted. Maybe some of these are brand names and I’d recognize the name of the actual drug. I’ll look that up.
There’s other stuff in your post that would require comments and corrections like the red meat thing but we can’t deal with everything at once.
As horrible as your experience was, it does sound like you were on the way to getting your life back for a while. I know curing gout doesn’t feel like you’re getting better but the blood tests don’t lie! You just need to keep at it a bit longer and stop the doctors from harming you more than is necessary.
October 20, 2018 at 5:36 pm #8341
For future reference, besides gout-specific drugs you mentionned a corticosteroid, five NSAIDs (diclofenac, ibuprofen, etoricoxib, exketoprofen and naproxen) as well as two PPIs (to counteract a suspected NSAID side effect) and two unrelated drugs supposed to help with gastrointestinal symptoms (possibly brought about by colchicine though such side effects are reported in relation to other drugs as well). No side effects were reported in relation to febuxostat or the corticosteroid however. And no analgesic was mentionned.
October 20, 2018 at 10:31 pm #8342d qParticipant
Hi Dean, I am so sorry to hear about your situation. Rest assured you are in the right place to get accurate and reliable information and we will all help to provide it. I’ll be watching this thread closely and will provide any information that relates to my case that can potentially help in your situation.
October 21, 2018 at 1:32 pm #8344Rebecca NahidParticipant
I was told by one doctor to come off allopurinol if I experienced an attack however when she checked on her computer it contradicted what she said and actually it recommended to stay on Allopurinol. I asked 2 further doctors who also told me I should not come of allopurinol during an attack I contacted the manufacturers of allopurinol and they also said not to stop taking it.
October 21, 2018 at 5:26 pm #8345
Thanks for your feedback, guys. All of this has really affected my mental health, especially since I feel like I can’t get a proper professional to help me. The Uloric impact on my liver showed that I was high and out of range on Gamma GT and one other liver test that I can’t recall at the minute. The rheumatologist I saw said he wasn’t too concerned about it – this was the same guy who told me that my dropped acid levels would not be accurate. What I experienced every night while on Uloric was an intense burning and swelling and redness in my foot in the evening times or after more than 10 minutes walking. I don’t know whether the steroid injection has helped those side effects/pains a bit since they’ve not been as intense or whether they’ve settled somewhat while on the low dose of Allopurinol. I just feel like I’ve been getting so many mixed opinions on this and I’ve been put on drugs and taken off drugs willy nilly. I can’t walk too far without my foot swelling up and burning and at this stage I don’t know whether it’s from gout, meds or a combination of both. I really want my active lifestyle back after six months of this misery before it leads me into depression.
October 21, 2018 at 6:18 pm #8346
One problem with allopurinol is that you reported what could be gastrointestinal side effects. Another is that it may well cause the same liver stress as Uloric once you reach an effective dose (you haven’t tried one yet). A third is that you’d need to ramp up your dose quite quickly which would initially require frequent blood tests and a serious doctor.
The exact tests results for your liver matter. See if you can get ahold of them because being a little out of range is typically not a problem. But considering the unspecified stress on your liver (which may be caused by Difene or other drugs rather than Uloric for all we know), I would recommend you try a slightly smaller Uloric dose such as 60mg (half a 120mg tablet if you can get hold of one of these). There should be a dose small enough that your liver would not be bothered even during the first months before your body gets used to the drug. Only that dose is going to be different in every case.
I double-checked and 267 umol/l is indeed about what you’d expect on 80mg. There are more or less random variations in test results which is why you’d ideally want several test results before drawing inferences but, based on the information I have, the minimum effective dose for you might be 40mg (this figure will have to be revised once more data comes in). It’d be best if you took a bit more but you most likely don’t need twice as much.
The burning and swelling are not unexpected when you are curing gout. Any inflammation you get from gout when your uric acid tests low (as it did when you were on Uloric) is only temporary. It’s something that you’ll have to deal with once and for all or your condition will get worse over the years.
The one thing you need to make sure is that the inflammation isn’t caused by an infection. This is very rare but you never know. If you have a fever or other signs of a an infection, get that checked very quickly, espeically if it looks like an infection that might be spreading or if your body’s temperature gets very high.
Hopefully I’ll get around to writing about other drugs before too long but the most important thing is to keep your uric acid low and your most realistic options to achieve this are allopurinol and Uloric. So work on that first! If they are both proven to be unsuitable for you, other options might be explored but you need to give at least one of these two drugs a serious try first.
October 21, 2018 at 7:13 pm #8347
Here are my results:
Total Protein: 81 g/l
Albumin: 48 g/l
Total Bilirubin: 11.7 umol/l
*Alanine Aminotransferase: 58 iu/l
Alkaline Phosphatase: 61 iu/l
*Gamma GT: 74
Uric Acid: 286 umol/l
The ones with * have a note under them on the results that states “indicates a result outside reference range”. Again, the rheumatologist didn’t take much heed of any of the results of this because he said I had the test done during an attack. I wasn’t experiencing an attack per se when they were done or in the weeks preceding the test, instead it was just burning, swelling and redness in the big toe and entire foot for that matter. He was very dismissive of me and was hard to get a straight answer from.
So basically what you guys are saying is, that unless I go back on Uloric I run the risk of my acid levels shooting up again and new crystals forming because the dose of Allopurinol I’m on isn’t strong enough and the increase timeframe the rheumotogolist suggested still won’t get me to the point the Uloric I was on did. So I’ve gone through the pain of dropping my acid levels abruptly on strong meds and now that it’s done it’ll creep up until I get the Allopurinol to a level that it’ll start to drop the acid enough to dissolve the existing crystals and the ones that may form in the meantime. Oh man, that’s crushing news. I thought I was well on my way now. I don’t know who to see professionally at this stage: the rheumotologist will dismiss this and stick to his “the bloods are not accurate” angle and my doctor is clueless – I had to personally request that he include a liver check on my blood tests after the 40 days on Uloric. He didn’t even know this was needed. I’m based in Ireland so if anyone knows of anyone who understands the condition intimately, then I’d be very grateful.
Thanks for the assistance.
October 21, 2018 at 7:47 pm #8348
You’d need the results of “clean” (drug-free) blood test for comparison before you can get a good picture of what’s going on but these numbers are not worrying as such. I had much worse alanine aminotransferase results on only 40mg Uloric for instance. And there are guidelines only recommending you quit such drugs when the numbers are much higher as well.
So unless you have symptoms of liver distress outside of the blood tests, I’d say your situation merely warrants more frequent blood tests to see if these numbers get worse over time. Having aspartate transaminase numbers would be useful as well in my opinion. If your liver values are stable, you’re probably OK. But like I said earlier, a slightly lower Uloric dose might be a good idea considering the balance of risks.
Yes, the “crushing news” is basically my opinion… my unqualified opinion I should add.
I don’t know of anyone in Ireland but I think any open-minded doctor would understand the situation if you showed them the numbers and the relevant medical guidelines. Trouble is, how are you going to get a doctor to take enough time out of their day to give a good look at your case? Hopefully you know someone who knows a doctor or something.
October 22, 2018 at 1:39 pm #8364Keith TaylorParticipant
I know how depressing it can be when you are in this situation. But, you seem to have a good grasp of the medical issues that you face. Also, your uric acid is at a good level for getting rid of old crystals.
You will not be the first person on this forum to have to train their doctor. So I recommend sticking with that if you can’t easily switch. Personally, I had this quite easy. Because I was a patient in a large group practice with online appointment booking. So I just went to different doctors until I found one that listened and understood. Incidentally, that is the background to my claim that only 20% of family doctors understand gout.
Depending on what measurements are taken, that figure is supported (more or less) by many studies from around the world. Importantly, studies of rheumatologists performance with gout are not perfect. I’m not saying this to worry you. Instead, I want you to realize that taking the lead with your doctor is often the best way to get successful treatment. You tell your tailor how you want your suit cut. You tell your chef how you want your steak cooked. So tell your doctor what you expect your uric acid numbers to be.
Hopefully, someone with more local knowledge can suggest a practitioner who can give you a better level of support. In the meantime, discuss your hopes and fears here. Then you will see that the way forward gets easier each week. Trust me, it’s better than suffering alone.
October 22, 2018 at 1:58 pm #8367
Unfortunately Dean’s uric isn’t at a good level anymore since a doctor saw fit to discontinue the treatment without explanation after the blood test.
October 23, 2018 at 2:19 pm #8372
Thanks, guys. Appreciate the responses. Given what I’ve outlined above, is it natural that I’ve been in pain pretty much every day for the last six months with this? Every time I walk for more than then minutes all of my toes go bright red and burn up and swell. I had the steroid injection two weeks ago and it doesn’t seem to have done anything for me, and I’m still on three anti inflammatories a day. It’s taking up a lot of my thoughts and all of my good spirits and I’m feeling really hopeless about making a recovery. Six months is so long to be debilitated.
October 23, 2018 at 2:28 pm #8373
Also, in relation to the Uloric and how my acid levels wouldn’t be down now that I was taken off the medication and put on a low dose of Alluporinol, I actually still have a prescription for Uloric, do you guys think it’d be a good idea to go back on it right away? Or will this increase the pain in my foot from the way it is now, do you think? I’ve been hesitant to do so since I’ve gone from one week of Allopurinol to 40 days of Uloric to two weeks of Allopurinol. I’m a bit lost for direction since I’ve no real doctor that understands what has been happening to me for half a year straight…
October 23, 2018 at 3:52 pm #8374
Obviously I don’t understand what’s going on in your body either considering I haven’t even seen your foot! But if you are indeed suffering from gout (which sounds plausible), I know you need to keep your uric acid down for many months in a row. And I know 100mg allopurinol is inadequate in your situation. As far as I can tell, you only had about a month of low uric acid starting about 6 weeks ago.
If getting a better diagnosis with more specific tests isn’t realistic in your situation, best assume you have gout and see if the treatment works. That’s better than simply waiting without a treatment. If you don’t have gout, the treatment will not make your foot worse and if you do, the treatment will do wonders for you in the long run even if it causes increased pain for a little while. If you have gout, the more you delay, the harder it’ll be for you to get rid of it.
We can’t give you medical advice. Ideally, a doctor (it doesn’t need to be a specialist) would approve the daily medication you take. If you want to restart Uloric on your own authority because you can’t get an appointment with a reasonable doctor, that’s on you. It wouldn’t be crazy in my opinion considering you didn’t experience serious ill effects from taking for 40 days but I obviously can’t recommend it or take responsibility for any consequences. In any case you’ll need to keep seeing doctors and getting regular blood tests for liver function and so forth as long as you take any drug on a daily basis.
Since gout treatments work very slowly, you could also get better relief from gout symptoms in the meantime and I’m sorry for not posting about that but the main thing you need to work on right now is to get your uric acid down as quickly as you can.
October 23, 2018 at 6:19 pm #8375
Thanks very much again for your opinions. I called my doctor this afternoon, told him my concerns about the low dose of Allopurinol, how I believe consultant confused what I said about having burning and swelling and redness as me saying I was having gout attacks every night, and how maybe I brought my acid levels down too quick, and he has agreed that my blood results re: liver were ok after the Uloric and that it seemed to have been working for me since my levels halved and it didn’t cause the stomach upset I’m having on the Allopurinol, so he has put me back on it at a lower dose commencing tomorrow. Hopefully the two weeks I’ve been off it won’t have caused my acid to shoot too high and that I’ll get it back down to the same level soon. I’ll put up with the swelling and burning if I know that it’s a consequence of the crystals dissolving and it’ll mean I’ll recover soon. It really didn’t sit well with me when the rheumatologist took me off Uloric with only the explanation that “it can cause more intense gout attacks than Allopurinol”. Hopefully I’ll be on the road to recovery soon. Thanks again, guys.
October 23, 2018 at 8:22 pm #8376
He’s right that Uloric can cause more pain than allopurinol. But that’s only because clueless doctors give their patients too much Uloric too suddenly.
What dose did he just tell you to take?
About controlling the swelling and pain while you are cleaning your system, my understanding is that you are currently taking 150mg Difene per day but no corticosteroid, colchicine or analgesic. Is that right? Are you still taking a PPI? You’d probably benefit from taking something on top of the Difene and a PPI but I want to get the facts rights first.
Are you having trouble sleeping? Do you have a history of addiction or drug abuse (any drug, including nicotine and alcohol)? Have you discussed your entierly natural feelings of hopelessness and doubt with a doctor? Are you getting your blood pressure checked?
In any case I recommend you get some mild exercise which does not trigger redness, swelling or pain. You want to do smooth movements and avoid shocks as well as heavy weights. Swimming in moderately warm water would be nice for instance. Make sure you have solid shoes which protect your feet well and be careful while walking as long as it seems to trigger such symptoms. If you feel that would be helpful, you can use a walking aid. Certainly it would be prudent to have something at hand to help you walk in case you get a violent attack.
I have no experience with Epsom salt but bathing your feet in warm water is a good idea anyway. Never let your feet get too cold by the way. You might also want to try raising your foot above your body for a little while before putting it back down as often as that is practical during your day. I noticed you reporting that evenings are especially difficult for you. This suggests to me that you are either having a poor posture (or clothes which restrict your blood flow) during too much of the day or that you are tensing your muscles too much during the day. Better pain medication could help with the latter problem but you could also try to pick up some kind of relaxation routine.
I also recommend experimenting a bit with your diet. In particular see if avoiding certain fats or limiting your salt intake seems to help with your symptoms. Different people’s immune systems react to different foods so see what works for you (possibly nothing will make any difference). Among the things which reduce uric acid and might therefore be helpful in combination with a lower Uloric dose are low-fat dairy products such as yoghurt. And be sure to drink lots of water (2.5 litres per day may not be quite enough depending on your size).
October 23, 2018 at 8:40 pm #8377
Told me to check with the pharmacist whether the 80mg can be split and to take 40mg a day. The doctor said there isn’t a 40mg prescription for Uloric in Ireland, only the 80mg. Said if it cannot be split then I’m to take the 80mg every second day – don’t know if that’d be the best thing to do though. Might just grin and bare the 80mg if it’s not splittable.
That’s right about the Difene – I’m not taking anything else and the Difene doesn’t seem to have much effect since I’ve been on them so long. Have an emergency prescription for cortosteroid, a week’s worth, if things get too much. They do help me since Colchicine just gives me diarrhea and very little relief. Doctors here are hesitant to prescribe steroids for gout for some reason. Not having trouble sleeping – I usually have settled the burning and swelling with Epsom salt baths or alternating between hot and cold. No history of drug or alcohol abuse – rarely took medication before all this and I drink very little (haven’t had a much as a glass of wine since April). Mentioned how anxious and down I’ve been because of this to the doctor (I’ve also had a rare bone disease diagnosis to deal with this year and fertility issues which led me to the supplements that spiked my acid) and he wanted to put me on more medication. Been trying CBT techniques I’ve read about to try manage the hopelessness I feel. It’s hard to do so when you keep getting pain and have restricted movement daily. I usually exercise 4 times a week and cannot do cardio because of my foot nor can I lift anything with my hand. I’m not a good swimmer so that has cancelled that as an option (haven’t had the mental capacity to try take lessons). Tried being very strict with diet and it was giving me a complex about what I should and shouldn’t eat and this was difficult in itself. I’ve a pretty balanced diet so I’ve just been a bit more vigilant. I’m 6 foot 2 and 14.5 stone and I try drink 2.5 litres minimum a day. Tried all the natural remedies too to no avail unfortunately. I’m really hoping the Uloric will get me out of the woods and all of this can be put behind me so I can focus on my hand surgery next year.
October 23, 2018 at 9:07 pm #8378
You can split Uloric pills. You don’t want to take a pill every other day (it’s something you can do with allopurinol however). Depending on what pills you have, they may be difficult to split but they still work after having been split (the blood tests would show if the split pills were ineffective anyway).
See if you can get 120mg pills which you could split in half because I’m not sure 40mg is a high enough dose for you. It’ll probably work in the long run but it may not provide enough relief during the months ahead. You can also obtain about 60mg from a 80mg pill by cutting off a quarter (precision is not important).
In any case it might be prudent not to go back to a strong Uloric dose from one day to the next. You could perhaps raise your dose in two or three steps lasting a few days each.
So you aren’t taking a PPI anymore? That may be reckless. Be very mindful of any stomach pain. Prolonged Difene use may even require progressively stronger PPI doses if you are prone to such side-effects which can evolve into very serious problems. And taking a stronger Difene dose seems unwise considering the side effects you’ve described above.
Steriods are trouble. But considering the trouble you had with colchicine, they seem like the logical option. After a few weeks on Uloric, if you could use steroids to stop the inflammation, it might not come back. You might have to take them a bit longer or take a stronger dose but I have no personal experience with that.
That leaves us with analgesics. Usually people are told to take paracetamol but since there is a suspicion of Uloric causing liver stress I would recommend against that for the time being. So see if you can get your GP or another doctor to prescribe you a moderate dose of a stronger analgesic. To recap, the rationale is as follows:
-you are already taking a serious anti-inflammatory dose and need something to reduce the pain and the stress it causes as well as to help you relax, especially in the afternoons and evenings
-you are taking a uric acid lowering drug which is known to stress the liver and your latest blood tests showed mildly elevated liver values, something you want to monitor without adding another drug known to elevate these values into the mix
-you are undergoing effective uric acid lowering therapy as your latest blood test demonstrates which means that you’ll be able to discontinue the analgesic before it becomes a habit (assuming your pain is indeed caused by gout)
As you surely know, there are exercise devices which allow you to perform smooth work with your leg while sitting or even laying down. If that’s not practical for some reason, you can probably manage to lift your own weight without using your toes by putting your weight on your heels and holding something with one arm for balance.
As to your fragile joints, you could try mild stretching (non-weight-bearing). You could also try to use these joints’ muscles to carefully push against the strength of your arm using some kind of rope. Obviously that’s not meant to replace cardio but you want to keep moving these joints even if you avoid using them for weight-bearing exercise.
Something else: you don’t actually need to swim to exercise in water. As the water holds most of your weight you can stand in a moderately shallow swimming pool (perhaps one designed for children) without hurting your feet. See if your local swimming pool (or spa) facilitates something like that.
October 24, 2018 at 5:00 am #8379
Still taking PPI and haven’t been getting blood pressure checked. Had a full inflammatory blood screening done with the blood tests done and the doctor said everything else is normal.
October 24, 2018 at 7:43 am #8380
The pharmacist advised me against cutting the 80mg Uloric pill in half (it’s branded as Adenuric here and the pill is tapered and film-coated), so I’ll have to accept the burning, swelling and tightness in the joints. Hopefully it won’t be as intense this time, since I’ve had two injections into the toe and hopefully the acid drop won’t be as extreme. Thanks for all the great tips above. My plan is to take the daily 80mg of Uloric, stay on the 150mg of Difene and the 30mg PPI until inflammation resides, and if the side effects from the acid lowering cause me a lot of grief, I can seem to handle 6 Colchicine over three days (or 1 over six days) before the diarrhoea starts, and if that’s not good enough, I have a week of Presnisone in case of excruciating pain. I’ve Codipar tablets as an analgesic but am hesitant to take anything extra that might have adverse effects on my liver function. Doctor has told me to come back for bloods in late December or early January. I’m hoping I’ll be close to being out of the woods by then. I certainly believe I’ve more of a chance of that being on Uloric (since it clearly halved my levels in 40 days) than taking low doses of Allopurinol only to go back to the consultant in January after bloods and him telling me that I need even more of the medication to get the levels down, and then go through the reduction of acid and the dissolving of the crystals in the new year. Really appreciate the time and thoughtful responses on here. Feel like I’m not just suffering alone and trying to work out my best options myself.
October 24, 2018 at 10:42 am #8391
We know these pills, unlike doctors (mine didn’t know the pills they were pushing either). Your pharmacist was unsurprisingly equally clueless. They work just fine when split.
Codipar should indeed be avoided in your situation as it contains paracetamol. If it didn’t, it wouldn’t be a problem for your liver which is why you should ask for the real thing.
October 24, 2018 at 11:46 am #8423
I rang another local pharmacist this morning after taking my first 80mg since my pharmacist told me not to split them, and they said that they couldn’t see an issue with splitting the 80mg even though there’s no split mark on the back of the tablet. They said it should be ok. It’s crazy how many opinions differ because professionals don’t know the medication they’re prescribed/selling. So do you think it would be a good idea to stop taking 80mg and tomorrow begin with the split (40mg) and stay on that for a week and then take 3/4 (60mg) of a tablet a day for another week and build it up that way to try lessen the severity of the burning and swelling? Since codipar doesn’t work for me in this case, do you recommend any other analgesic? I’m a bit sensitive to codeine so I usually avoid it if possible. Thanks again for all the advice – I should have posted on here back in May and I might not be in this position now!
October 24, 2018 at 12:53 pm #8424
I don’t actually know what dose and schedule would work best for you. Your situation is a bit unusual since you recently discontinued a strong dose. No study is going to ask participants to discontinue their therapy like you did so I doubt there is actual evidence to guide you anywhere.
I therefore think you have to go for a balanced compromise between the various concerns without knowing if being careful actually makes any difference: don’t go back to the full 80mg suddenly but don’t wait several weeks to get to an effective dose either. You could take 20mg for a few days or go straight to 40mg. Taking 40mg for a week or two sounds reasonable. After that, I think taking no more than 60mg until your next blood test would also be a decent compromise between likely efficacy and side effects (again, there are 120mg Adenuric pills out there which would make taking 60mg easier) but we know you can survive 80mg so you could justify taking the whole pill for a month or two after taking 60mg for a little while.
For all I know, none of this will help. If you already triggered your immune system into a chronic gouty state, possibly the only thing that’d help is hitting your immune system with a nasty course of corticosteroids or colchicine.
Even without any help from anti-inflammatory drugs, the worst bout of chronic gout will stop when there is no more solid uric acid for the immune system to get upset about anyway. And taking at least 60mg Uloric ought to get you clean sooner or later. Your next blood test will confirm that (if at all possible, get it done it in 4 to 6 weeks rather than in 10 to 12 weeks).
I would also not pick codeine even though it wouldn’t be the worst thing to take in your situation. I don’t want to recommend a particular analgesic considering the issues some people across the pond have with such drugs. This isn’t like Uloric which is a pretty uncommon drug. Most professionals do know their analgesics. If you explain the whole situation (which is why I laid out the three-part rationale for you above), you should get a decent recommendation from any compassionate professional.
And while I’m nobody, you have a name and so it may be wise (depending on your acquaintances) not to advertise on a public forum that you have a supply of the good stuff or even that you are planning to ask doctors for it.
October 28, 2018 at 2:47 pm #8580
Couple of days trying 40mg Uloric and the burning, sweating, swelling and stinging is back in my foot (touch of it in my non-gout foot too). I reckon I’ve a bumpy run ahead – particularly when I’m after being on my feet for a bit or late in the evenings. Hope it calms down as the crystals disappear, but I guess there’s no point asking anyone here how long I’m looking at since everyone’s different. It’s a horrible sensation.
November 3, 2018 at 4:39 pm #8681
It’s most likely just inflammation considering you’re suffering from this in the evening or after standing but make sure that’s not hiding something which looks more like a skin disease or an allergy (in that case, get it looked at because it might be a rare but nasty side effect of the drugs you’re taking).
Everyone is different but you’re not totally in the dark either. One thing I can tell your is that you are looking at several months during which you have a significant risk of experiencing a serious attack. By serious, I mean crawling. With enough anti-inflammatories, you might be able to stand on your feet but what you’re describing isn’t a proper attack but more like a chronic condition so it’s harder to tell how long that could last, especially without colchicine or corticosteroids. Others have suffered from something similar for quite a long time (supposedly it’s uncommon but it doesn’t seem all that rare based on what people post here).
Hopefully getting your uric acid very low might put a stop to it sooner. So if it hasn’t stopped after a few more days, I’d try 60mg or more. I’m not sure more than 60mg would help but given your test results, sticking to 40mg for a while is only worth doing if that keeps the symptoms at bay somewhat. But if you feel 40mg is as bad as 80mg, staying on the lower dose is only going to make your recovery slower.
November 3, 2018 at 7:40 pm #8682
Seems to really go crazy at least once a day: across both feet with the sensation that I’m being stung with nettles, and the toes go bright red and burn. The intensity lasts for about an hour or so. Happens more when I walk around during the day. Finding that I’ve a dull ache in my left groin area and a stinging in my right knee during the day, only the knee pain was present on the 80mg dose. I’m on the 40mg two weeks this coming Wednesday. On the 80mg I had waves of burning and redness and some pain in the right foot only and happened every evening for a few hours. This time around the burning and stinging, redness and prickling is in both feet. I’m hoping it’s a consequence of crystals dissolving and not a reaction to the medication. This condition is making me suffer way more than I ever thought it could. I’m not having gout attacks from it yet but I’m not without pain every day and trying to cope just on 150mg of Difene. If others have reported similar effects on this medication that does ease my mind a bit – I feel very sorry for anyone going through this misery. I’m in a particularly painful period as I write this actually.
November 3, 2018 at 7:45 pm #8683
This week I’ve also had burning eyes, stinging nose, slightly sore and swollen glands in my throat and feeling lethargic, but I few people in work have felt similar symptoms and it might just be because of the weather here at the minute. With the other symptoms I’m getting it does make me a bit worried that I’m having some reaction but I didn’t have any of that at the higher dose of Uloric I took for 41 days. I only had the foot issues on that dose.
November 4, 2018 at 2:42 am #8684
It very much sounds like you’re suffering from some kind of arthritis (most likely gout).
But you don’t want this misery to drive you to neglect a different problem (having more than one health crisis at a time is a thing). Annoying infections getting around at work is also a thing that happens obviously. If you were having a drug reaction, it’d get stranger and worse over time and I very much doubt it’d hit you after you’ve been standing or walking for too long.
In case there was a misunderstanding, you can get constant low-level inflammation plus regular flares without medication. It can basically turn you into an invalid. Medication could trigger it I guess but if you’re prone to this type of gout, not taking medication would in time have gotten you to the same place.
I should also add that I don’t recognize the exact symptoms you’re describing but that’s not surprising.
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