[Dean Brown]

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.

[Dean Brown]

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.

[Dean Brown]

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.

[Dean Brown]

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.

[Dean Brown]

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.

[Dean Brown]

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.

[Dean Brown]

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.

[Dean Brown]

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…

[Dean Brown]

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.

[Dean Brown]

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.

D

[Dean Brown]

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.

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