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Crohn's Disease Forum

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  1. R

    Is this my only option?

    Hello! I haven’t been active on the forum in some time but I’ve been having some issues recently and know that the advice I received here was always really good. I suffer a lot with pain in the anal area, and the skin around it is very compromised and had scarring and skin tags from previous...
  2. R

    Stelara/Ustekinumab Positive Experiences?

    Thank you all for your responses! It’s reassuring to hear that some have had great responses to this drug. I’ll keep you updated on whether I respond…or not. But I’m staying positive!
  3. R

    Stelara/Ustekinumab Positive Experiences?

    Hello! Many years I was on this forum white regularly seeking a diagnosis of IBD. It took some time but I eventually got that in 2014. Since then I have had many years of remission on Humira, but unfortunately it has stopped working and I’ve had a bowel resection since and am in a flare...
  4. R

    Undiagnosed Club Support Group

    Hello! Not sure if anyone in here remembers me. I've just dropped by to see how everyone's doing and how many people have finally gotten somewhere in terms of a diagnosis? I'm well. Still on Humira. But not here to discuss myself! I always said I'd drop by even though I got my diagnosis and...
  5. R

    Top-down therapy advice

    Thanks for the replies! Yeah, I'm on 6mp too. I have a couple of strictures and have had fistulas, so I suppose it would be the wise option to stick with biologics. It just sucks knowing the harm they can potentially cause, but yeah CD can do the same. I just hope this anti MAP thing is proven...
  6. R

    Top-down therapy advice

    Hello! When initially diagnosed I was told that the treatment method my GI was going to do was 'top-down' - since then I have been on Humira and recently increased to weekly. I'm now in remission and wondering when he is likely to either decrease the medication or choose something less harsh...
  7. R

    Humira/Lymph node anxiety

    Thank for the heads up. I don't feel any beading - it just worries me that it's possibly a start of something nasty! What kind of blood test would pick this up? I had a FBC, WBC, PV and CRP done yesterday.
  8. R

    Humira/Lymph node anxiety

    When I first started humira, my neck got so swollen that I could barely speak. That went away after a few weeks. Now however I get aches and tightness under my armpits - going to ask my GP to have a feel around. I'm trying not to panic! If it was lymphoma, I'd just have to deal with that if and...
  9. R

    Mental side effects of humira

    Is it possible that she could have suffered a stroke? Has she had trouble with bleeding or clotting? It could also be her kidneys playing with her sodium levels - this can cause severe confusion and disorientation.
  10. R

    6MP/mercaptopurine hair loss 😢

    Have you had a TPMT test? This identifies whether your liver can effectively break down the drug. I had a low reading therefore I have to be monitored closely and take a very low dosage.
  11. R

    Questions about Humira

    On Humira myself. No notable side effects other than hives initially. In clinical remission at the moment although I have developed antibodies against the drug so I'm now taking it weekly. I'd advise you not to take the leaflet inside the Humira box too seriously. The side effects listed are...
  12. R

    My remicade antibody number is 3.1

    Mine was 36, so you're good. I've had to up my dose to see if that helps!
  13. R

    Humira Club Support Group

    Been put on weekly Humira today due to having an antibody level of 38. But on the plus side I'm apparently in clinical remission! Just need to give it that extra push!
  14. R

    Humira Club Support Group

    Humira is starting to fail for me 6 months in. Not sure what my GI plans to do about it. Maybe weekly injections? I may ask if I can try Remicade instead. He also may up my 6MP to combat the antibodies. Fed up to say the least...
  15. R

    Undiagnosed Club Support Group

    Flaring again. Losing weight rapidly, no pain (which I'm thankful for) but having very loose BMs. Not sure what my GIs plans are. Humira has lost its effectiveness. :/ UGH
  16. R

    Starting Humira, What to expect?

    Does it hurt to inject? Short answer, yes. But for all of 10 seconds at the most, so I wouldn't worry too much about it. How quickly does it start to work? WELL. For me it started to work after a few weeks, but recently its effectiveness has decreased, so my GI is thinking about putting me on...
  17. R

    Am I the only one who is overweight and trying to lose it?

    Like Alley, I was put on prednisolone and went from being underweight, to overweight in a matter of months. Fortunately I had a lot of weight to gain, so I haven't got drastically overweight. Right now, I'm gluten-free, dairy-free and paleo - so I pretty much stick to meat, eggs, vegetables...
  18. R

    Undiagnosed Club Support Group

    Like you both, I struggle with my diet/lifestyle choices too. I'd probably not be in the situation I am if I stuck to a better diet. I've been put on budesonide for 12 weeks! It's not a major flare so I refused pred. It really doesn't sit well with me. Bloody hell Isgs, you really are going...
  19. R

    Undiagnosed Club Support Group

    Hey how's everyone doing? Haven't dropped by in a while. Feel kinda bad because I'm only here because I'm having a tiny flare at the moment. I try not to focus too much on the disease when I have my symptoms under control. Hope you're all doing well and some of the oldies from this sub-forum...
  20. R

    Humira working or not?

    Thanks for the replies! Having a blood test tomorrow. The BMs I'm having are more solid now (you really wanted to know that I'm sure!) but I'm still feeling really fatigued. Obviously I appreciate my symptoms aren't as bad a they were BUT this must indicate that I have active inflammation...
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