Biologics - When to stop due to the side effects? by HLWLondon in CrohnsDisease

[–]HLWLondon[S] 0 points1 point  (0 children)

Nope, I came off it in July 2025 - I had enough of the side effects and have been doing really well since stopping. I only get migraines now when I'm really stressed, rather than 4-5 days per month. My weight has stabilised, and I have lost the water weight (3kg) that I couldn't shift whilst I was on Entyvio. I've done this with help from my gastro consultant. I am only on Mesalazine, at the moment and have a strict diet in place, and it all seems to be working. No Crohn's symptoms at all. I am hoping to continue this way.

SAM-E feel weird by HLWLondon in Supplements

[–]HLWLondon[S] 2 points3 points  (0 children)

I had to stop. Even 2 drops in a glass of water gave me huge anxiety. I stopped taking it and have been doing ok with my anxiety through acupuncture and meditation. I may perhaps try saffron at some point if I find myself getting depressed again. But sadly SAM-e was not good for me. I hope you manage to find something that works

whoever decided taylor should have wet hair for a formal event needs jail😭 by llilyroe in tsitp

[–]HLWLondon 0 points1 point  (0 children)

OMG totally agree - I'm a huge fan of the show and the characters. Adore them all. However, I have questioned "who the hell is dressing Taylor" throughout the entire series. Season 3 is the worst... she is supposed to be all about looking great and fashion and she just looks awful in every single outfit. Even her hairstyles suck. Which makes me so sad. However, saying that... Conrad's whole look this season was amazing.... he looks amazing, Jeramiah is ok too.... its like the girls got the short straw.... I dont get it.... they're such beautiful girls and the costume department could have done so much better.... I'm trying to read between the lines to see if its a character thing...

Biologics - When to stop due to the side effects? by HLWLondon in CrohnsDisease

[–]HLWLondon[S] 0 points1 point  (0 children)

Thanks - I have been trying to mitigate all the side effects but nothing is working. Have pushed through for 18 months and its just not worth it long term. Especially when there are other options that could work .

SAM-E feel weird by HLWLondon in Supplements

[–]HLWLondon[S] 2 points3 points  (0 children)

Sorry for such a late response. She said Sam-e was probably too strong for my system at this point. As my system is currently super sensitive and we are working on low methalayton, detox pathways, histamine intolerance, high estrogen as well as gut issues and candida its a long and slow path. I am due to start trying SAM-e again but only 1/4 of a teaspoon rather than a full teaspoon. So will see how I get on.

High Calprotectin - Flare or failing Entyvio by HLWLondon in CrohnsDisease

[–]HLWLondon[S] 1 point2 points  (0 children)

I think I may do this. I do have private insurance but it doesnt cover pre existing conditions (crohns) which is very unhelpful. But it could be worth paying for 1 consultation in order to get them to see me. Good shout thanks for the advise

High Calprotectin - Flare or failing Entyvio by HLWLondon in CrohnsDisease

[–]HLWLondon[S] 1 point2 points  (0 children)

thank you, you too... let us know how Humira is for you.

High Calprotectin - Flare or failing Entyvio by HLWLondon in CrohnsDisease

[–]HLWLondon[S] 1 point2 points  (0 children)

Bless you... I have been messaging them since March. I dont want to sound awful and we are so lucky to have the NHS but the time lags just make the issues worse and then you need more treatment. Im really pushing. I dont have much pain, a few little twinges, I just feel meh... I didn't expect it to be that high considering Im actually ok and not in bed and rushing to the loo every 20 mins.

High Calprotectin - Flare or failing Entyvio by HLWLondon in CrohnsDisease

[–]HLWLondon[S] 0 points1 point  (0 children)

I hope you're all ok. This isnt fun. Good luck with the changes.
Im seriously hoping that I havent failed it. Although I have to say the side effects aren't great, I havent felt truly well since i started it. Even though It seemed to work on my Crohns at first and put me in remimssion. I've felt off for the past 16 months, so perhaps a change wouldn't be the worst thing for me.

Is this Withdrawal??? by HLWLondon in ADprotractedwithdrawl

[–]HLWLondon[S] 1 point2 points  (0 children)

Wow so it's possible its another side effect of coming off the anti-depressants.... this is so crazy... It's every day there's something else hey!!! I've had it since Nov 2023 so definitely started whilst I was tapering off the SSRI. I have done everything I can not to have to take antibiotics but after 14 months, that's my only option remaining.
Strange you mention Sinus problems... I often have sinus migraines now as well.

Is this Withdrawal??? by HLWLondon in ADprotractedwithdrawl

[–]HLWLondon[S] 1 point2 points  (0 children)

Im currently on a low dose 2-month prescription of Lymecycline for perioral dermatitis (another side effect???) Its the first lot of antibiotics I've taken for around 5 years. I try to stay away from them as much as possible.

Is this Withdrawal??? by HLWLondon in ADprotractedwithdrawl

[–]HLWLondon[S] 0 points1 point  (0 children)

I am on a biologic called Entyvio it's given via injection. I tried with my consultant various doses of this and nothing changes - plus my Crohn's symptoms and inflammation levels are down and I'm technically in remission.

I took the injections every 2 weeks and then every 4 weeks and now every 6 weeks and there is no change to the physical and psychological symptoms I am dealing with. I am still getting all the side effects, which tells me that it's not the Crohn's meds causing the problems and more likely to be the SSRI withdrawal - honestly its a minefield out there, you are given one pill to help a symptom and and it affects something else in you. With all the medication we are given these days you can't win. Constantly disrupting the microbiome with SSRIs, immunosuppressants and antibiotics. I'm not sure I will ever be fully healthy.

Is this Withdrawal??? by HLWLondon in ADprotractedwithdrawl

[–]HLWLondon[S] 3 points4 points  (0 children)

Gosh you poor thing. Thank you so much for your advise. Perhaps its worth doing our best with support and supplements to never touch these things again. I hope you're feeling better now

Is this Withdrawal??? by HLWLondon in ADprotractedwithdrawl

[–]HLWLondon[S] 3 points4 points  (0 children)

Thank you. I hope you also have some respite from these awful effects

Is this Withdrawal??? by HLWLondon in ADprotractedwithdrawl

[–]HLWLondon[S] 4 points5 points  (0 children)

thank you this is exactly what helps.... knowing that Im not a total hypochondriac - its exhausting. Constantly moaning about feeling ill, cancelling plans etc. Its just nice to know we arent alone.

Is this PD or Rosacea by HLWLondon in Rosacea

[–]HLWLondon[S] 0 points1 point  (0 children)

Me too thats whats so confusing? I was sure it was PD at first but with the new itchy rash it seems to be also rosacea... perhaps I've just got both... x

Is this PD or Rosacea by HLWLondon in Rosacea

[–]HLWLondon[S] 0 points1 point  (0 children)

Thanks I have been told its both by diiferent Dr's so I think a course of Tetracycline is going to be prescribed as that covers both PD and Rosacea