Started Stelara yesterday. The journey begins!

Simon1729 said...
What are your symptoms like at the start of your Stelera journey UCyousee? Do you still have significant joint issues?

Hi Simon, so I don't derail Dontscopeme's thread, here's my answer:

Day 1 (yesterday) I had the IV infusion. I was very tired in the evening and by about 9pm fell asleep on the sofa. I did a Google search and it seems that it's quite common for the first couple of doses of Stelara to cause fatigue.

Day 2 (today) I've woken up with sore wrists, and sore finger joint (it really is just one joint on one finger usually!) but it's very early days, and I'm coming off the Clipper (beclametasone gastro release steroid - 5mg) too, so lots going on right now. I don't currently have inflammation under my foot as it seemed to get under control with some ibuprofen gel, taking a few days off from doing a lot of walking, and a change of footwear.

Coming off Xeljanz / Tofacitinib (I stopped last week) seems to have resolved the constant sore throat / sore gland feeling. Fingers crossed that will last.

I'll update on how I get on in a few weeks when the Stelara's had time to kick in. I'll start with the injections in 8 weeks time. Crossing my fingers for this one!

Post Edited (UCyousee) : 9/11/2021 7:11:16 AM (GMT-6)

I really hope it works for you!

Wow that sounds like a really good start to your Stelera journey. They do say that it is the fastest of all the bios to kick in. It is very interesting that all your joint issues are improving. How has the response been for your bowel issues? Please do keep posting here and let us know how Week 2 goes.

Pred has cleared up my flitting joint issues but toe and left flank still remain. My GI has indicated that he will start me on the biological journey if I need a second course of Pred.

Thanks

damo123 said...
Good news UCyousee. Was it difficult to get funding for Stelara on the NHS? I read that UK is tougher to start Biologicals. The rheumtalolgical patients need 3 swollen joints and a failed methotrexate experience.

Do you have any indication of your inflammatory markers before your started Stelara? Were the joint pains worse than your bowel issues? I remember we talked about this in August and you were thinking the joint issues might have been coming from an independent mechanism.

Damo123, I think it must be getting easier to try anti-TNFs on the NHS now that biosimilars are available and the cost is coming down, because the woman in the clinic who'd had just one flare, then an 8 year remission before she flared again said that she'd been offered anti-TNFs as the next step - ie no azathioprine or 6MP first.

I had 11 years of severe UC (pancolitis), many flare ups, plenty of pred, had to try and fail azathioprine and 6MP, then hospitalisation and cyclosporine to try to save my bowel, before I was offered Humira - sigh! But there were no biosimilars back in 2015 and the cost of Humira was high for the NHS.

You'd have to try and fail an anti-TNF before being offered other biologics on the NHS, and I think you'd have to have moderate to severe UC:

https://www.nice.org.uk/guidance/ta633/chapter/1-recommendations

I did have blood tests and a faecal cal done last week when I had the loading dose of Stelara, but I don't have my results back yet - have chased them up.

Be patient on Stelera. 35% respond within 6 weeks and 25% are late responders. Those numbers are for crohns but they relate to UC as well.

Sorry for the lack of updates. I'm almost at the 8 week mark with Stelara and I've been very well on it so far.

about 1 week after the IV loading dose I got painful, itchy palmoplantar psoriasis (I've had psoriasis since childhood) so was slightly worried that I might be taken off Stelara, but the palmoplantar psoriasis has cleared up for now (hopefully it won't reappear when I take the next dose), and other than that I've had no side effects with Stelara (yet).

I'll have the next dose at the end of this week, as well as a faecal calprotectin test and blood tests. Hopefully these will confirm that I'm in remission.

For the past 8 weeks I've had absolutely normal bowel movements, no joint pain, no feeling of throat / glandular soreness, plenty of energy, and a normal life. I've had a much better response on Stelara than I did on Xeljanz, and I hope it continues, for a few years at least.

With Xeljanz I was back to having neck and wrist pain, a sore throat / feeling that my glands were swollen, and fatigue started to become problematic again, as well as the fact that the Xeljanz wasn't getting me into remission. I also got plantar fasciitis type pain (possibly enthesitis as I think Damo123 suggested).

Because Xeljanz wasn't working for the UC it was an easy decision for me to switch, because I wanted to go back to something that would work for the joint pain and fatigue as well as the UC. I deliberately chose Stelara because it's used for psoriatic arthritis, so I thought it might well resolve the joint problems in the same way that Humira did (even though I don't have a diagnosis of PsA).

Like I said, fingers crossed Stelara continues to work for me!

Thanks for the update UCyousee. I know we had been talking a lot on joints and extra intestinal stuff before you went on Stelara. Sounds like you have had an immediate response. Delighted for you.

Was it an overnight thing that you suddenly felt better or did things gradually improve over the 8 weeks?

Glad you are making progress UCyousee. I may be starting Remicade similar to you to try and sort out bowel, joint and fatigue issues. Has your doc indicated that the joint and fatigue issues are IBD related now that they are all improving with the biologic?

Post Edited (Simon1729) : 11/3/2021 8:27:41 AM (GMT-6)

Simon1729 said...
Glad you are making progress UCyousee. I may be starting Remicade similar to you to try and sort out bowel, joint and fatigue issues. Has your doc indicated that the joint and fatigue issues are IBD related now that they are all improving with the biologic?

Good luck with the Remicade. I hope it works for you!

Whatever my joint and fatigue problems are caused by, they're treated by Anti-TNFs, so there must be some link with the UC. I always maintained to my Gastro that if my bowel is removed it would remove a site of attack but I'd probably still have joint and fatigue problems, just as I'll continue to have psoriasis.

Yes in theory removing the bowel may mean nothing for your EIMs. But some people have seen their EIMs disappear as a result of a collectomy. But like you say it is no way guaranteed more especially if there is an independent disease mechanism at play.

That said there are research papers on the web for which it was found that Entyvio / Vedo cleared up psoriasis. In theory this should not happen as Vedo is gut selective and should have no direct effect on the skin. The reason it happened was that the psoriasis was being induced by the bowel inflammation in those cases.

I just found an interesting article about natural ways to block TNF:

https://selfhack.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/

I've no idea how accurate this article is but there's a lot of information in it.

Regarding lectin, I know I have a wheat sensitivity (more to do with wheat than gluten) but I've never noticed a sensitivity to legumes. I LOVE lentils!

Interesting article UCyousee. The natural supplements probably work quite well for the population without highly overactive immune systems. For us then probably we do not get the same benefit and have to resort to the more powerful biologics. But nothing stopping us taking a good deal of tumeric and the like to keep on top of the cytokine expression of our immune system especially when in remission.