Venting, never at 100%, and kidney concerns

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SuperBowser
Regular Member


Date Joined Dec 2016
Total Posts : 23
   Posted 1/2/2018 6:23 AM (GMT -7)   
Hi,

Just wanted to know if anyone's had similar experiences/needed to vent. I was diagnosed in December 2016 with UC after a severe flare and hospital admission and started oral Mesalazine and Salofalk. Looking back, I've probably had UC for 10+ years, but my symptoms were so mild, I didn't realise.

Things have been much better since I was diagnosed, however, I'm not back to "normal". To be honest, the GI symptoms themselves don't bother me - I still have blood a couple of times a week and get a "bad" week once every month where I go to the toilet 2-3 times a day. However, I feel like I have a cold (general malaise) a lot of the time and I'm more tired than I used to be. Still, I go to work and do all the things I'd normally do. I've kinda pretended I'm fine to family and friends, even though I'm not back to 100%.

To add a complication, my renal function has dropped since 2015 but it's not clear why. I've seen a renal physician and they plan to book me for a kidney biopsy some time in the next few months. They think it's IBD related (in which case my I have no choice but to try the next line treatment) or caused by Mesalazine.

My options at the moment are basically: continue Salofalk enemas, start Azathioprine or ask about biologics. I know guidelines normally recommend Azathioprine first but I can potentially be offered biologics. If you guys had the option between Azathioprine/Biologics, which would you choose?

(I added a subject)

Post Edited By Moderator (iPoop) : 1/2/2018 6:45:48 AM (GMT-7)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11315
   Posted 1/2/2018 6:55 AM (GMT -7)   
It sucks not being at 100% and pretending to everyone else that we're fine. We've all been there.

It's possible that the mesalamine is causing kidney/renal issues, it is a rare side effect. Discontinuing the mesalamine would eventually return your renal numbers to normal, if it is medication-induced.

Pros and cons to everything. Hard to justify jumping onto biologics when your symptoms are so darn mild, in a way. I don't know which way I'd go, in your case.

Cons for immunomodulators. Are you male? What's your age? I ask as adolescent (a term that many gasteroenteroligists use cautiously for 30-ish or less) males then you do have to consider that with immunomodulators you'd have increased risk of lymphoma. During the initial clinical trials of UC and azathioprine/imuran/6MP, adolescent males were the only ones to have a lymphoma. As such, gasteroenteroligists often don't prescribe to that demographic, or will limit prescribing it to 2-years at most, and then get you off of it. Anything but a certanty of having that problem, just increased risk.
Immunomodulators require frequent bloodwork for everyone on it. Take about 3-months to work. Very, slow acting meds.

Pros, immunomodulators are generic medications, simple oral pills you can take, are overall weaker medications that enable you to save biologics for later (just incase you need them later).

Cons biologics. They are all expensive brand-named medications that require either an IV (at a hospital or infusion-center) to administer or a self-injection to administer.

Pros biologics. No bloodwork required. Very quick working, taking 6-weeks or less in most patients. Infrequent infusions (every 8-weeks with remicade). The top-down approach (that is using the strongest medications earlier) might prevent your UC from spreading in extent or severity, give you the least frequent flares and best quality of life.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Severe flares make the common toilet worse than any medieval torture imaginable. The rack? Bah! I survived the thousand razor blade poop for weeks!

Post Edited (iPoop) : 1/2/2018 7:00:33 AM (GMT-7)


TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8100
   Posted 1/2/2018 7:46 AM (GMT -7)   
what kinds of non-med treatments have you tried ?
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

SuperBowser
Regular Member


Date Joined Dec 2016
Total Posts : 23
   Posted 1/2/2018 8:14 AM (GMT -7)   
Thanks iPoop, that was helpful. I’m a 30 year old male. I know that biologicals can also increase the risk for cancers but it seems that’s a better options for me if I can get it. I’m in UK with the NHS so thankfully cost isn’t necessarily an issue to me (although it will be to the doctor!).

I haven’t really tried non medication option. The only thing I’ve noticed since being diagnosed is I don’t like raw vegetables or milk when I’m in a bad period as they give me abdo pain. I still have them when I’m well though.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11315
   Posted 1/2/2018 8:52 AM (GMT -7)   
A lot of the more recent research points to the biologics themselves not increasing cancer risks. Rather those who got the cancers were concurrently on immunomodulators. No cases of biologics only causing the cancers... yes when concurrently on immunomodulators though...

Good conversations to have with your gasteroenteroligist though, just to open up the whole risk versus benefit thing. And in your case, which is the safest and best strength for your symptoms.

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2305
   Posted 1/2/2018 11:18 AM (GMT -7)   
Tough call especially with mild symptoms. Is Entyvio an option? This medicine is gut specific so in theory it should not effect the rest of your body like the others. Another thought...with mild symptoms-- if you can continue to use the Salofolk enemas-- (but not oral mesalamine) What about slippery elm, Tumeric or something like that. I don't know if it would be enough especially since you were severe at one point but thought I would throw it out there.
B
UC diagnosed in 2010 but had prob. in 2009
2 Lialda/day Rowasa nightly, periodic anucort supp, Cortifoam as needed(needed more than I would like)
VSL#3, slippery elm
Metamucil capsules
Trying Gluten free (why not!)

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 420
   Posted 1/2/2018 2:10 PM (GMT -7)   
The thing that most people with IBD have in common is that their immune system is down-regulated or deficient. Most people think that their immune systems are over-active and that's the reason for the crazy inflammatory response, but it's actually that the immune system is dysmodulated (behaving improperly) combined with not being strong enough. It attacks the wrong things and in the wrong proportions, yet it doesn't have strength against things like the common cold.

When immune activity is low, we tend to feel run down. The body becomes less efficient at clearing viruses, bacteria and cellular wastes. The endocrine (hormone) system starts to get slower as well as the over all metabolic state.

I used to feel that malaise a lot and I still do during my recovery periods. Since taking Low Dose Naltrexone, I feel more or less normal. It boosts the immune system and modulates it. However, it doesn't work for everyone. In my first 3 weeks of taking it, I thought I contracted the flu. What actually happened was that my body was getting strong enough to clear out the backlog of stuff it wasn't able to deal with before. After that, I felt great.

Your kidney signs could be a side effect of drugs, or it could be due to a reduced metabolic rate. If you're chronically fatigued and feeling run down most of the time, then your body might be operating at a lower equilibrium. At least, that's what it was for me. When my immune system got stronger I could start exercising more, and when I could do that my kidney function increased. Unless you have actual kidney disease signs, the lowered eGFR could be a sign that the body is tired and slowing down. My eGFR before taking LDN was 65-70, and after it went up to 95 and 100 most of the time. Also keep in mind that kidney tests will be affected by how much protein you consume. If you recently ate meat then your creatinine will be higher which will make your eGFR lower.

Do you know that your blood urea nitrogen level is? (BUN test)

Post Edited (Connor77) : 1/2/2018 2:13:00 PM (GMT-7)


SuperBowser
Regular Member


Date Joined Dec 2016
Total Posts : 23
   Posted 1/3/2018 4:21 AM (GMT -7)   
hateuc said...
Tough call especially with mild symptoms. Is Entyvio an option? This medicine is gut specific so in theory it should not effect the rest of your body like the others. Another thought...with mild symptoms-- if you can continue to use the Salofolk enemas-- (but not oral mesalamine) What about slippery elm, Tumeric or something like that. I don't know if it would be enough especially since you were severe at one point but thought I would throw it out there.
B


Interesting. I actually tried turmeric for the first month after diagnosis, but decided it wasn't helping.

Connor77 said...
The thing that most people with IBD have in common is that their immune system is down-regulated or deficient. Most people think that their immune systems are over-active and that's the reason for the crazy inflammatory response, but it's actually that the immune system is dysmodulated (behaving improperly) combined with not being strong enough. It attacks the wrong things and in the wrong proportions, yet it doesn't have strength against things like the common cold.

When immune activity is low, we tend to feel run down. The body becomes less efficient at clearing viruses, bacteria and cellular wastes. The endocrine (hormone) system starts to get slower as well as the over all metabolic state.

I used to feel that malaise a lot and I still do during my recovery periods. Since taking Low Dose Naltrexone, I feel more or less normal. It boosts the immune system and modulates it. However, it doesn't work for everyone. In my first 3 weeks of taking it, I thought I contracted the flu. What actually happened was that my body was getting strong enough to clear out the backlog of stuff it wasn't able to deal with before. After that, I felt great.

Your kidney signs could be a side effect of drugs, or it could be due to a reduced metabolic rate. If you're chronically fatigued and feeling run down most of the time, then your body might be operating at a lower equilibrium. At least, that's what it was for me. When my immune system got stronger I could start exercising more, and when I could do that my kidney function increased. Unless you have actual kidney disease signs, the lowered eGFR could be a sign that the body is tired and slowing down. My eGFR before taking LDN was 65-70, and after it went up to 95 and 100 most of the time. Also keep in mind that kidney tests will be affected by how much protein you consume. If you recently ate meat then your creatinine will be higher which will make your eGFR lower.

Do you know that your blood urea nitrogen level is? (BUN test)


Don't think I've had a BUN test. My eGFR is very similar to yours; I had a single reading with a eGFR of 59 but I'm generally in the mid 60s. No other clinical signs/symptoms (unless tiredness counts). My eGFR was lowish before I started Mesalazine and I personally don't think it's drug related. I've tried all the tricks to make a high GFR reading including drinking loads of water and avoiding all protein - it's consistently lower than when I was younger.

My presenting complaint to my GP before diagnosis was feeling crap/tired all the time rather than GI symptoms funnily enough - these symptoms are still present. Not sure Naltrexone will be supported by my doctor at the moment but it's useful to keep in mind if everything else fails!


Thanks guys. I think I'm going to avoid azathioprine if possible and go for a biologic. I'll do a bit of research tonight about the different options before my hospital appointment tomorrow! Despite being a doctor, I've read as little as possible about IBD to keep myself sane nono

Post Edited (SuperBowser) : 1/3/2018 4:25:03 AM (GMT-7)


Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 481
   Posted 1/3/2018 9:24 AM (GMT -7)   
Connor not sure I agree with that analysis. I ended up sharing drinks, and kissing someone with active strep throat (diagnosed) before she started antibiotics and I did not end up getting strep.....not smart I know however if all our immune systems are worse I'm sure that's almost a guarantee for getting strep seeing how it is contagious.....
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