I'm starting Stelara (again)

Hello folks.

Dunno if anyone remembers, but I started Stelara last summer. However everything which could go wrong, went wrong. I got the infusion 6 hours late: at the time I was told it hadn't been stored properly and had to be sent back to the lab (which was 200 miles from the hospital). Now the Stelara needs to be kept at a low temperature, because if it gets too warm it will degrade. This is what I think happened to my infusion. It was July and the Stelara had been unrefridgerated for hours from the sounds of it.

Well, I had the infusion and it did absolutely nothing. I waited 8 weeks and didn't even see a slight improvement. That demoralised me considerably. When the dimwitted delivery company failed to deliver the second dose of Stelara to my home twice, it demoralised me even further. (Note: the initial dose is an infusion, but afterwards you get Stelara in the form of injections, a la Humira.) I didn't have the energy or motivation to chase it up anymore, and I let it drop. Nobody got in touch with me to find out what had happened.

In the meantime, I had such issues I genuinely considered going back to an ileostomy - I was sick to death of the endless toilet trips, the needing to be near a toilet everywhere I went, the night time awakenings, etc. But before I took such an irreversible step, it made sense to at least give Stelara another try first. However, I absolutely loathe chasing things up and it took until early January before I finally mustered the will to phone the delivery company.

As I had feared, too much time had passed and they couldn't deliver Stelara without clearing it with the hospital first. Whether they ever did this, I have no idea. I decided to get in touch with the IBD team at my hospital, explain my reservations about the quality of the first infusion, and ask for a new loading dose. To be honest, I expected them to say no. My Plan B (courtesy of ks1905) had been to save up two syringes of Stelara and do my own homegrown loading dose (probs not a sensible idea outside of a hospital setting, but since when I have been sensible?)

But I don't need to move to Plan B! My IBD team had to apply for funding again: when I heard that I thought I'd be waiting months, like last time. But no, my CCG (Clinical Commissioning Group if you must know) approved funding almost immediately and I have a date for the new loading dose: 10th February.

This time I am determined to give it a proper go, even if it means chasing up the dimwitted delivery company every day. Wish me luck, folks.

That is so fantastic to hear NCOT!! Fingers crossed it's effective for you this time around. Please keep updating us!

Thanks folks :p

I'll keep you updated. In the meantime I'm going in for an iron infusion tomorrow - I'm anaemic again. Hopefully that helps too. It would be great to feel less braindead.

Have you been for a sleep study? I went for one over the summer and I have sleep apnea, I now use a CPAP machine and it makes a huge difference with my "brain fog". It's not perfect but I feel so much better and more refreshed and clearheaded.

Way to go! This is a long time coming. Fingers crossed.

Wishing you loads of luck, my prayers and lots of hugs.

NCOT,

Are they going to test you for Stelara antibodies prior to giving you the loading dose? My GI says that Stelara is better at not forming antibodies than anti-tnfs when you stop taking them.

I had the test done and came back without antibodies after I needed to stop Stelara for 6 months to heal from a surgery.

Just a few days away from your loading dose. Good luck.

Sorry but I don’t know.

Why did they mix it before you arrived?? When I use to get Remicade they wouldn’t mix it until I checked in, I even tried once to call in get it started early because I was in a rush but they refused.

The way I look at it is that it is better then nothing. I’m able to reorder Stelara after 7 weeks so can get it about a week early if I need it. Maybe you should try to order your next dose as early as possible.

I'd try not to get depressed about it. You won't know for a few more days if the stelara will start to work for you or not.

It's still better than nothing.

Wait and see if this loading dose works for you. Give it a week or two.

No sense getting worked up about it, there isn’t much you can do a little it now. You can always save the two doses but that will take about 4 months. I’d probably stick with this loading dose and then trying to get the next two doses as soon as possible.

I’ve been on Stelara for almost 3 years since my loading dose, I’m sure my current levels aren’t as high as they were after my loading dose but it is still working very well for me.

NCOT,

Can you get your 6-mp dose temporarily increased for a month or so until the Stelara kicks in? Maybe it will help the Stelara.

My GI does that for some of his patients who flare and are on an Immunomodulator.

From my limited understanding of Brexit is that the Brits will have no bargaining power and will have to accept almost all of the trade and border restrictions from the EU and trading partners like the US. So the UK basically left the EU where they had some voting and legislating power to ended up needing to ultimately comply with all the EU rules anyways... at least you’ll have a new NHS hospital built each month unless that was a lie too.

*logs in* HW still haven't got the hang of cookies which last longer than a couple of days I see. It's almost as though they don't want anyone to stay.

@ks1905 - I read your message and decided to send an email to my IBD team asking if they can increase my 6MP dose, explaining why. I had a TPMT test alongside my usual bloods last week; hopefully it is at the low end of normal.

Lol @a new hospital being built each month. The only new hospitals we'll be seeing are ones made out of lego and they'll mostly be in children's bedrooms

@Sara - I think it's ridiculous too. I would have bet every last penny I had in the bank that no harm would have come from finishing the infusion, and I'm not a betting person. It seems like the Stelara must have been sitting around for several hours after it was made up though; I don't understand why the hospital did it so early when they knew I wasn't due to come in until 2. (Or perhaps the lab did it before sending it on a 2-hour journey to the hospital. I have no idea when it was mixed or who did it.)

I'm still wanting to get a dog, although it's not a very good time at the moment. I've just started a new 11-week course of MBT (Mentalisation Based Therapy). I'm not happy with how that went last week at all (28 people stuck in an overheated room - way too many people for comfort), but I must try and stick it out until the end. I've also got to decide what to do about my gardening place, which I've been going to for a few years. I've just been hit with a massive fee for that and I'm not sure it's worth it. That money would go a long way towards an individual therapist. Sorry, I'm babbling now: a lot on my mind.

ASellers - Thank you for that! It does actually help. Haven't noticed an improvement yet, but I know it's almost certainly too soon to. I have heard of spontaneous remission. Most people with IBD have periods of remission, but my disease is relentless in a Terminator-like way. Admittedly it's not quite as lethal but it pursues me with a similar single-minded purpose. I can only hope that in my old age it finally burns itself out and leaves me alone at long last.

My IBD nurse refused to raise my 6MP dose, after telling me my TPMT was below normal range and asking if I remembered to take my med regularly. Errrrrrrrrrr..... I usually remember, but must admit I am often late in filling a prescription - we have to fill our prescriptions every 28 days in this country and then it takes pharmacy a few days to complete the request. I've got plenty of old quetiapine, levothyroxine, etc to see me through, so there hasn't been any urgency to get prescriptions filled on time.

Guess I need to get a bit more serious about taking 6MP every day. That said, I still think there's grounds for increasing the dose to 75mg if my TPMT levels are that low. (Don't have the exact figure on me now, but I can find it tomorrow.)