Xolair! Excellent News!

[floating_]

So I am still on Xolair, which I was started on due to severe CSU because of my MCAS - started in late August 2021 (I think, lol). It has also massively helped my Asthma. I'm happy to say that my allergist (who manages my CSU and MCAS), is keeping me on Xolair for the forseeable! This is a huge thing because usually they take you off of Xolair after six months if you're on it for CSU, but they're keeping me on it due to how helpful it is for managing my MCAS difficulties!

Unfortunately, did find out that the long term Prednisolone (and Gastroparesis + Anorexia) led to osteoporosis/osteopnia, so that's a bit of a bummer. But all in all, I'm doing well (aside from this small flare I'm currently in lol).

Hope everyone is doing well.

[angievere]

Pleased to hear Xolair has helped you. It turned things around for a member of my family. Take care and all the best.

[Poobah]

That is good news Floating. Bone (& dental) health does seem to be ignored until they become an issue. I can't believe there isn't more being done to prevent the effects of long term steroid use. Not in terms of additional prescribed meds, but advice on supplements, weight bearing exercises and oral hygiene/better dental products - prevention is always better than cure.

[floating_ in reply to Poobah]

All they've said to me is to start Alendronic Acid and to take AdCal-D3 (been on these a little while now). They're hesitant to do too much exercise with me due go my anorexia (I do physiotherapy though, although some people are weird about that with me as well lol). I am going to reincorporate things like K2 as well. Not really sure about anything else!

Supposedly having a Mast Cell disease also puts you at risk for osteoporosis/osteopenia so that also probably didn't help in my case.

See my dentist fairly frequently as well due to my EDS and Gastroparesis. My teeth are doing okay, apart from chipping.

Got any ideas on anything else I could do?

[Poobah in reply to floating_]

A retired dental professional recommended two products on the forum recently and maybe you could get them, or something similar, on prescription? Fluorigard mouthwash and Colgate Duraphat toothpaste. The recommendation was in relation to long term steroid inhaler use and the need to protect teeth.

There's a very well researched Facebook group, "Vitamin D & Co-factors. UK". There's all the relevant information regarding VitD plus the other Co-factors in their files, including the right quantities and recommended suppliers. There's lots of info to read but it's worth it in order to understand how to avoid mistakes in taking supplements. Members of the group have a variety of health challenges and past discussions are searchable if you want further insight. (Co-factors include VitK2 mk7, magnesium, boron but not calcium).

[runcyclexcski]

Congrats! I started X on Oct 13 2021 (I remember the date), and I am slowly getting better. Started running again 2 weeks ago. There are issues with prednisolone side effects, so I managed to taper down from 10 to 5 mg. Hoping to taper further down.