and its back...

yup. I have been working on it. THe clinic did call it in for me this morning but it is now 1pm and the pharmacy still hasnt figured out how to put a few pills in a bottle so i can pick it up. That means i am going to be taking it late in the day and be up all night. Work is going to be a nightmare this week with no sleep.

The wheels are in motion though.........i just cant beleive how dang slow things are. I am thinking about just going to the pharm and standing at the counter until they hand me the pills. Maybe that would speed it up.

i got them. I drove up there and stood there.

Apparently....even though there is a walgreens and cvs every 3 or 4 blocks everywhere on earth they still have 5+ people behind the counter filling bottles as fast as possible after a holiday weekend. That is insane to think of how many people rely on pills daily. I would have never guessed it was that high or in that much demand. Its kind of sad really.

Anyway...i got what i need and i am back on track popping pills for the rest of the taper.

I went in for my first blood draw/test and the test came back "within reason". My Neutrophils showed it was a bit high (in the red) but just over the allowed numbers so they said it was fine. Not sure what this does but per my googling it is something with white blood cells.

I go back in 12/3 for my second blood draw/test. I guess in the end i cant tell if the 6ap is doing anything or not. How do you tell? IT takes weeks and weeks to kick in from what they said but in the end i dont know if i just healed naturally or if this stuff did the trick or if it helped at all with the natural process. When i go in on 12/3 i get to talk to the doctors again about a go forward plan of which i have no real feed back to give based on 2 meds i was on (Lidia and now 6ap). The one thing i am sure helped was the Prednisone and even that was questionable after 1 week+ as the bleeding and issues continued. I am glad in the end that things are seeming to get a bit better. Today i have been more happy / in a good mood than i have been in a very very long. time. Health.......its an amazing thing but you dont realize it until you dont have it.

Going forward, staying on the 6mp and tapering fully off of the pred without returning to a flare would be your longterm plan. Provided that is successful, and time will tell there.

Should 6MP not be sufficient, then biologics like remicade/humira might be discussed.

Did you have a negative reaction to the Lialda (I cannot remember)? If not, then considering re-adding Lialda to 6mp might be an intermediate step before considering the aforementioned biologics.

Actually the safety profile and side effects of remicade/humira and 6mp are the same. No harsher lol.

Often uc medication classes are additive so curious why they stopped lialda. Might've helped some and been part of a bigger treatment plan.

Pred is known for fatigue and brainfog among other things. Both are real buggers, thinking clearly about complex sitiations is rough on higher doses of pred. Often gets better at lower doses.

I hope it isn't the return of a flare, but if it persists 4-days after the dosage drop then it is just that. Always have a backup plan, and a backup to that as well. There's seldom ever just one medication that gives us a remission. So talk about combination-therapy, taking 6mp, pred, and something else. Not confident you fully explored the 5ASA/Mesalamines, and adding back Lialda and a nightly Rowasa retention enema for 3-4 weeks would be my recommendation before going up the meds ladder any further.

I started reading up on vitamin d....and supplementing with it 2000 units per day to try and get it up into the normal range. Hard to say if that was caused by no sun and working indoors all day or if it is from the meds but i certainly eat alot of eggs which are supposed to be a good source of it. 3 or 4 per day so i was surprised to see it was low. I guess i have never had it tested before until now. Seems the more i read, the more important it is to get that up into the normal range. Sounds like that might help things. It surely cant hurt to get them up into the normal range.

Sorry to hear. Regroup with your doctor, and talk about both your current and your plan for new meds and dosages going forward. We can relapse shortly after ceasing pred when our maintenance meds are insufficient (as happened in your case). There is a way out, you just aren't out of the woods yet.

Yeah takes 3 months to know if 6MP is working. 1-month is meaningless.

The labs came back normal including my b12. They cant check for vitamin d again yet. It is too soon for the supplement i am taking for that has done anything yet. They put me on prednisone for a longer round this time.
4 a day for 2 weeks
3 a day for 2 weeks
etc....
Its going to be a interesting next couple of months on that stuff.

High WBCs are common during UC flares and infections. Hopefully this time you can get off and stay off the dreaded pred. if not, then start thinking about biologics like remicade/humira.

i did ask about going back on the liada but they almost instantly said no because it didnt work the first time. I wasnt on it that long initially. I am unsure what determines if it works or not. I was flaring the whole time and my understanding that is used to keep flares away...not treat them. It could be that it would help keep another one from happening if this stupid thing ever goes away.

at this point i am nervous about losing my job and ultimately my health insurance from just so much time away from work. I have my fingers crossed that this last round of pred kills it off. Sadly....im sure it will come back and some point again but i am praying that it doesnt.

yes. i am only on these 2 things currently. I have been trying to swtich up my diet as well......which i think it helping a bit but it is hard to tell. Mostly good fats......and less grains and hard to digest items. Trends aside and generically speaking, adding more fats to each meal like olive oil and avacado oil etc is what i have been doing. I figure if nothing else....that is helping grease things up in the old pipes quite a bit causing less drag and friction. My thought is .....that will help the healing of the lining if things can slide past easier by being lubed up.

Its the mechanics approach i guess but.......i have tried everything else. Why not try some "lubrication theroy". Logically it makes sense.