[Sian James]

@nobody

I just wanted to feedback – my husband’s GFR was 46, and his creatinine 136 – the rhemumie said to stop the NSAIDS and PPI immediately, and that he couldnt
use NSAIDS again. He had only been using them during flares – she was the one that told him to go to a daily dose. So, as you so presciently pointed out, that’s another med for inflammation that we can’t have any frequent recourse to.

His urate level is now 140 (RR 200 – 400) so she was open to the idea of him reducing his febuxostat to 40 mg by dividing the tablet.

Thanks again,

Sian

[Sian James]

That is such a helpful response. Thank you so much for taking the time to write it, we are both very grateful for your time and your experience.

Wishing you the best of health,

Sian

[Sian James]

Thank you very much @nobody, that helps clarify my thinking. Good point on future usage of NSAIDS. I will see if there’s a way of dialling that back, and/or switching to a less potentially damaging med.

Do you have a view re febuxostat re allopurinol and long-term safety? Or am I treading old ground here?

[Sian James]

Questions for Rheumatologist

Hi Guys,

Wondered if I could call on your experience once more? We are going back to the rheumatologist next week. She previously was hostile to discussion of whether or not febuxostat or allopurinol had a better profile in terms of side-effects.

My husband, with extensive lifestyle and diet change, and meds, seems to finally have his flares under control. He is currently on 80 mg Febuxostat daily (he decided himself to lower the dose from 120 mg), 1 500 mg naproxen and 20 mg omeprazole in tandem with the NSAID. We don’t have recent urate results. But will have after the appointment. This is the first time in a decade his gout has been under control.

My question – is this a time to continue as we are in terms of meds, or to try and lower or alter doses? What questions should we be asking of the consultant at this point?

[Sian James]

my draft questions, in case they are of help to anyone:

What is the significance of the inflammatory spondyloarthropathy referred to the the letter detailing the results of the MR scan? Is that how the scan reads to you?

2. How definitive is the MRI scan is seeing the full extent of gout damage, tophi etc, and being able to delineate that damage from other forms of inflammatory arthritis? Is a DECT scan necessary or helpful?

3. Given the urate level was 149 when last tested in January, is this current 120 mg dose of febuxostat appropriate?

4. Do you share the concerns about febuxostat and its impact on cardiac mortality? We do have concerns around the safety record of febuxostat, and would like to discuss switching back to allopurinol.

3. Does the history indicate a under-excretion of urates or over-production?

4. How much effect can dietary modification have? And is there evidence to support the lowering of purines?

5. We have received conflicting advice on managing acute attacks – could you clarify what you’ve found to be the most effective method?

6. Does it matter that the last urate result we have was 50 below the bottom of the normal range?

7. Given the strong family history on the maternal side of RA, and death via its complications, is there an autoimmune component to the inflammatory processes identified on the scan?

8. The department letter has mentioned DMARDS. Having seen up close some of the very difficult effects of drugs like methotrexate, we don’t want to blindly follow down a path without a rationale being made to us for their likely efficacy, and their limitations.

8. Given the association between AS and cardiac morbidity, and the association between advanced gout and metabolic syndrome, is it prudent to further investigate cardiac health and metabolic parameters?

10. Given the inflammatory effects noted with AS in the prostate, should relevant prostate testing be undertaken?

8. Could current issues with ‘floaters’ in my eyes be linked to uveitis, given its association with AS?

9. Is testing for the HLA B27 antigen necessary?

10. Given the association between gout and sleep apnea, is it possible to do a sleep study? My wife mentions times when I seem to stop breathing.

11. My ferritin levels went extremely high during his regime of interferon alpha/ribavirn for Hepatitis C. Can we retest iron levels and stores to exclude any abnormalities?

12. My wife has a diagnosis of Lyme disease and babesia via respected lab in the US – and is currently doing a herbal regime to combat it. I have been taking prophylatic herbs myself, and also doxyclicine after a recent tick bite. Given Lyme disease can cause erosive arthritis, is it possible to be tested for it via Western Blot, given the unsatisfactory performance of ELISA tests?

13. What is the most kidney-friendly way forward with both gout, and AS, if I have it?

[Sian James]

Thank you Nobody and Keith, those are such helpful answers, filled with great directions that I wouldn’t have otherwise have thought of pursuing. My husband has asked me to pass on his gratitude for your kindness.

I’ll let you know how we get on.

[Sian James]

Thank you very much for your great pointers Fallars. A 24 hour uric acid excretion test is such a good idea, and I’m surprised the consultant didn’t suggest it. We will contact his secretary and see if we can arrange one. He is having his bloods taken every two weeks at the minute, to monitor kidney and liver function. I will check that a FBC is added.

Thanks again for your help,

Sian

[Sian James]

Just wanted to update this thread after our appointment with the rheumatologist. He has increased the dose of febuxostat to 120 mg and suggested taking 1000 mcg colchicine daily for a month in split doses.

They are still waiting for the MRI results back, but he suspects that my husband has another form of inflammatory arthritis at work in addition to his gout, given that much of his pain is present in his spine, shoulders, and tendons. On that basis, he has suggested he add Naproxen 500 mg daily, with 300 mg ranitidine.

Not sure about how the kidneys are going to cope with all this. I asked about referral to a nephrologist, but he said best wait until the MRI results are back.

The latest blood tests showed reduced cholesterol into the normal range, and urate level of 250. The doctor felt this was likely to a ‘false negative’ in terms of urates.

My husband is starting another flare in his big toe. Fingers crossed that the new dosing will bring us to steadier ground.

Thank you again for your help. Your responses helped us ask better questions and I think get a more proactive response. We return for review in the same department in three months.

[Sian James]

Thank you Nobody for your very helpful response. I have taken on board your cautions and we will be making no dosage alterations without the doc’s oversight. And thank you Keith – this is the first time I have clearly understood that colchicine can have an immuno-suppressive effect. I guess my husband’s strong familial history of auto-immune disease is partly what has predisposed him to gout.

I will be pressing the specialist tomorrow for their thoughts on why he seems to be worsening, with less and less time between attacks. We were both prepared for an uncomfortable few months on starting the meds, but a year in, with lifestyle change as well, we are surprised that things are not looking up. I fear he may be in the place you talk eloquently about Keith – of being stuck on a regieme which is not effective enough to de-bulk thoroughly.

But as you have both so wisely said, patience! He doesn’t drink alcohol, he hydrated, and he’s eating a Mediterranean diet.

Thanks again for sharing the journey. I’ll let you know how we get on.

Sian

[Sian James]

Thank you so much for your swift and incredibly helpful response. I just read the potholes page and feel I have a better understanding of what we’re aiming for. This is the first time we’ve had a workable paradigm for managing this unpleasant and potentially fatal condition. I just wish they had you training GP’s!

I also read the paper on the dark side of colchicine, and it made me quite cautious about the med. With a preventative dose, is there an amount that you know you don’t want to go above?

I know my husband needs to keep a diary, and have tried to see if there’s a template on the site, but haven’t seen one. Did I miss it?

Thank you again Keith for your wisdom and kindness. It’s such a relief not to be alone with this.

Sian

[Sian James]

Guidance on febuxostat, colchicine, and NSAIDs

Hi guys,

Thank you for creating this amazing resource. I am posting on behalf of my husband, who has suffered increasingly severe gout for eight years.

His GP fobbed him off for most of that time. We got the diagnosis about a year ago. Unfortunately, I don’t have his most recent blood results yet, but the last urate level was around 300 and had been over 500 to start with. But his attacks are becoming more frequent, severe and lengthy.

He is currently taking 80 mg Febuxostat and using colchicine and NSAIDs during attacks. Unfortunately, he has a kidney GFR of 59, so there’s not a lot of room for manoeuvre. He has changed his diet to exclude sugar and processed foods. Also, cut down on meat drastically, and upped the veg. So far, he’s lost a stone in weight.

We see the rheumatologist on Tuesday, and I was wondering what were the right questions to ask, and avenues to explore. Any suggestions? We are also working out way through the resources on this site.

Thanks in advance for any replies, Sian

[Author]

Posts