March 17, 2018 at 9:23 pm #6662
So after that paradox result [increase of Febux resulting in increase of UA] things have completed changed. The new test results are in:
366ummol after 20 days of 60mgs Febux.
Haematology numbers seem fine but too early to tell as that takes more time to stabilise. Rheumatologist is relieved and has asked me to go to 80mgs to try and drop it a little more. Not sure if going to 80mgs will make these lower back and abdominal pains worse but we’ll see. It might be useful to try and go to 80mgs for a period just to see these low grade foot pains go. We talked about this in detail and he assured me that if this pains are due to uric acid accumulation then they should slowly settle down now that the levels are coming down. He did mention however that if damage has already been done it may never return to normal and the best thing would be to rub a thin layer of low dose Voltarol gel on the painful area on the bad days to keep mobile. Avoiding the additional nasties of pills I guess. If I remember Voltarol gel actually is diclofenac, not sure of the drug levels however. He gave me a few more blood forms and asked me to get tested again in around 4 weeks.
I’d like your opinion on a few things;
1. Any advice generally on the above?
2. Assuming hemo holds at no more then 60mgs of Febux, will 366ummol be enough to dissolve (even if slowly) and keep gout at bay going forward? For that matter even if hemo and liver are fine at the higher 80mgs dose is there really a need for lower UA levels to warrant adding more of that drug in me.
3. Can cardio based exercises bring about gout attacks (increased blood flow)..? I’m not talking about running that may mobilise crystals in joints causing attacks. Just speeding up heart rate in other ways to reap the health benefits?
Looks like things ‘may’ be heading in the right direction after all.
March 18, 2018 at 5:00 am #6663
Finally! You had me worried with your previous result.
366 isn’t great but it would be sufficiently low… if it wasn’t only one result. As it is just that, I wouldn’t wait 4 weeks for the next test (assuming you have a choice in the matter).
You’ve gone slow and safe until now. While the small SUA drop 80mg should provide would be useful,
1) you can’t be confident yet that your hemo would remain stable if you kept taking 60mg and should your hemo start dropping after you start taking 80mg, you will be glad to know for a fact whether 60mg is safe
2) your SUA might keep dropping without a dose increase anyway since this result is consistent with your deposits taking a helluva long time to dissolve
3) lowering SUA slowly seems to cause less attacks (in some cases anyway)
Unless this result is a fluke, as I understand it moderate cardio exercises can only help because crystals would dissolve anyway. Increased blood flow will only make them dissolve faster, shortening the attack window for each deposit. But recall that exercise causes an immediate increase in SUA (the general recommendation is to avoid prolonged strenuous exercise).
The notion that symptoms will abate this soon is recklessly optimistic so hang onto your colchicine.
Diclo gel isn’t quite free of the nastiness of pills and isn’t very effective but it might be an acceptable compromise for minor symptoms if you take well to NSAID pills in the first place. Don’t bet on the gel stopping an attack though so keep the pills around!
On the bright side, there’s a good chance that any lingering symptoms might in time go away. You won’t know how much damage is permanent for quite some time.
May I remind you of Keith’s advice regarding pain? Some medical professionals are used to dealing with patients in pain and they know what works.
You may now tell them you are undergoing successful therapy according to your last blood test which would make the source of your pain temporary. That changes the risk picture a bit as far as pain management is concerned.
March 18, 2018 at 5:00 pm #6664
Jean ClyneParticipantŦallars: Ŧ 42.06Rank: Researcher
Better numbers, good! Sounds like you might have to balance amt of febuxostat with your symptoms, too much gives you side effects, less you can tolerate but will take longer to dissolve existing crystals which have probably building up over 10 yrs plus. It would seem logical to me that any exercise to result in increased blood flow would help eliminate the crystals. I know if I walk a lot 15 to 20000 steps, I am much better than inactive days, good shoes or boots with lots of cushioning help me, because of osteoarthritis too. Any exercise that caused excess flexion of sore joints didn’t work for me, ie. Cross country skiing was awful, snowshoeing not so bad but walking is the best as long as the ground is not too rough. Keep moving if you can, good for overall health I think!
April 1, 2018 at 12:06 pm #6813
I’ve been assigned a new project a little further from my usual place of work so have found it difficult to get my own online time. Anyhow;
Firstly thank you both for your encouraging remarks.
Unfortunately I don’t really have a choice in the matter. I will try and plead with my GP for a blood form but its doubtful since the rhem report mentions to have a blood test in 5-6 weeks because it will give ‘a more accurate picture of my hemo status’. Really annoyed but I guess another 2 weeks wont hurt.
1)Agreed, so on that note I’ve decided to stick with the ± 60mg until my next blood test in 2 weeks. Depending on the result do you think the extra 15-20mgs would nudge me into the safer and lower 340ummol bracket?
2)Every time you mention this in your posts it gives me that little bit of encouragement and motivation that levels were high because of the constant dissolution going and have finally come down a little. I really hope this is the case mate. I guess the second blood test will reveal all and either put me into more misery or out of misery :/
3)It’s strange you say this as some days I have literally no gout pain and some days I get a few bad hours. Normally lying down for 30 minutes or so clears it all up. I think these are mini gout attacks or some sort of mobilisation of existing crystals. I’m not too sure. On the whole though, these bad days seem to be getting less week on week. Podiatrist is very happy with progress and said if things continue like this it may be time to start wearing my support insoles less and less with intention to wean me off them.
I’ve got my colchicine right by my side for sure on those days and moments when things don’t feel right. As it stands it seems I’m treating myself! Yea, I thought the same about the gel. Probably just good for those shopping days or long walk days when you need a little comfort but nothing really more. I think I’ve only ever tried it once and can’t even remember what kind of comfort it gives (if any). The branded ones are really pricey too.
I mean generally everything now depends on the hemo. That’ll be the ultimate determinist in all of this but as you say the pain management should slowly be altered from aggressive to a more relaxed approach. I’m really hoping Febuxostat doesn’t affect hemo. It probably is my last safest shot at this without going into all sorts of combination stuff. Unless I just take a low dose of Febux and try to delay gout as much as possible until a reliable and successful hemo solution comes into play (if ever – however things are in the pipeline).
@Jean, I can also say when I walk a lot I generally feel better overall. I do get a little pain but as you say I think that is a signal of good pain rather then the bad when I had much higher UA levels (blood flow moving stuff out). Well I try to convince myself to believe that anyway 🙂 . I’m really wanting to get into skipping as I hear it is a fantastic cardio and physical work out but I’m just too scared to trigger anything while being on a lower UA.
I really hate gout. It really has taken a little bite into life.
April 1, 2018 at 2:39 pm #6814
If you were to repeatedly test around 366 on 60mg (which is doubtful), yes: 70mg and especially 80mg should be enough to nudge your test results into safe values.
Obviously if your next test result was around 390, that would be all the more reason to increase take 80mg. Hopefully it’ll be around 350 instead.
The risk of attacks beign increased while on ULT doesn’t mean you’ll get a serious attack every week. It’s what most people seem to report over several months. Your symptoms might improve over a couple of months before you are suddenly be hit by a serious attack. Or maybe you’ll never have another one… all I can tell you is: be prepared regardless of how well you’re feeling. Just in case.
I was actually thinking your situation might warrant more aggressive pain management (meaning stronger drugs). You want to be especially careful with drugs when you don’t know how long you’ll be taking them but when your trouble is temporary…
April 7, 2018 at 12:37 am #6835
Well I’ll be doing my blood test next week and we’ll see how 60mgs for a month panes out. I have to admit there have been the odd day when the 60mgs have ended up closer to 70mgs with cuttings being imperfect but I’m sure they shouldn’t make too much of a difference. Since 366ummol only ever occurred once whilst being on 60mgs [only tested once whilst being on this dose] I cannot explain just how anxious (and worried) I am.
The opposite is what happened to me when I started Allopurinol, it only took 2 months and dropping into the 350ummol zone before I got hit by possibly the worst attack (which is the lingering pain today). I do get the occasional not so good day and take a colchicine. Funny actually a few more weeks completes my one year anniversary since my last attack. Being on 366ummol is almost identical to where that attack wrecked havoc.
Would a single colchicine tablet every few days give mild and very basic coverage? The reason I ask is I really don’t want anything to disturb my hemo figures whilst we get to a maintenance dose (however long that takes) should Febuxostat work?
April 7, 2018 at 6:14 am #6837
I have no idea what colchicine would do to your hemo given your condition. But I wouldn’t take less than one every other day. And that’s not going to do much.
If you handle NSAIDs well, maybe it’d be best to take a delayed-release anti-inflammatory pill every day for a little while? Or simply to take a fast-acting nti-inflammatory pill whenever symptoms seem to start stirring?
April 7, 2018 at 11:43 am #6848
With a few days to go until the blood test whilst just being on Febuxostat I’ll just wait to see what overall results I get. From there we’ll decide how to proceed. If the results are safe it may be a case of increasing to 80mgs and starting a low dose of prophylaxis colchicine for a few months.
My last prescription of Febuxostat resulted in identical imported packaging with UK labels stuck on top (from a reputable UK pharmacist). Everything was just written in a different language but text font and sizes were the same. With my blood test so close, I was wondering if any variations can occur? The pharmacy said it was just certain suppliers for certain pharmacies and I had nothing to worry about however I have a friend who takes anti-epileptics and they must be brand specific and preferably same country manufacture. Does Febuxostat have similar requirements?
April 7, 2018 at 1:34 pm #6849
I have no idea how trustworthy your manufacturers are. If the manufacturers are doing their job (and if they are EU manufacturers, they should be!), the only way brand and location of manufacture would matter would be if the packaging mattered (drugs which are broken down by stomach acid, delayed-release pills and so forth). A molecule is a molecule and I don’t know that the packaging matters for febuxostat. Maybe it actually does though.
Out of curiosity, what have they switched you to? You used to get Adenuric pills, right? There’s nothing on my packaging that says where the pills come from but if I had to guess, I’d say the pills were made in Germany though the actual febuxostat might have been produced in Italy or even further afield.
Often times, people lie about the difference between brands. There’s quite a bit of money in this game and little accountability.
April 9, 2018 at 1:45 pm #6882
There has been no actual switch. It’s exactly the same packaging and Adenuric is written on the box but just written in a different language. The first box I was ever given looked was the new box looks like
With the UK label stuck on top of the back part where the translation takes affect It does say manufacturer: Menarini – Von Heyden, Germany
The Marketing Authorisation Holder is somewhere in Luxembourg and the Distributed and Repackaged by is Kosei Pharma UK.
I’m sure its fine though.
Could you post a picture of what your package looks like?
April 9, 2018 at 2:04 pm #6883
April 9, 2018 at 3:26 pm #6884
So the pills are indeed made in Germany. I bet all pills for the European market are made at the same factory.
I had misunderstood you earlier and assumed the pills themselves were different, not merely the cardboard. The shape and color of the pills could vary without changing their effectiveness but it looks like you’re getting the exact same pills anyway. Mine look the same as well.
April 9, 2018 at 4:24 pm #6885
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