Hi Rusty Barr, Sorry, I've just seen this post, as I'm currently travelling in South America. That's what remission means for me - total freedom to live my life in the same way that people without...
Good luck Rusty Barr! I hope you have the same success with Stelara that I've had. I've been in remission for about 17 months now, and long may it last! It means I've been able to live life to the...
Other than the Stelara keeping my joint pains under control, I also take grapeseed extract (not grape extract), turmeric, and boswellia to help keep any inflammation under control. I also make sure...
Hi damo123! (and sorry to hijack your thread Charlie, but I'll just answer this quickly!) Without looking back at my posts I can't remember how long it took for the Stelara to kick in but it was...
I became ill in December 2003 and was diagnosed in April 2004. Prior to this I had rumbling symptoms when younger, that I thought were due to irritable bowel syndrome. I've defied the odds and still...
Although family members have been on Methotrexate for Anklyosing Spondylitis (AS, UC, and psoriasis run heavily in my family) I haven't personally taken it. I'd probably be wary of the risk of liver...
Charlie789, I understand how you feel about getting a diagnosis for joint problems. I have UC, psoriasis, and an undiagnosed SpA which I'm pretty sure is psoriatic arthritis. Fortunately biologics...
Ahahahahahahaaa! That did make me laugh (but sorry to hear you're so tired)....
Does anyone else with UC get ptosis / a drooping eyelid sometimes? Since switching to Stelara I've been waking up with ptosis now and then. Each time it lasts for several days, and there's not much I...
I avoid flexi sigmoidoscopies wherever possible as I find them more painful than colonoscopy. I tend to have flexis and colonoscopies only when I'm flaring. I can't remember ever being offered one to...
Yes, I have problems with dry eyes, and mouth (I've had a corneal abrasion in the past due to very dry eyes in my sleep, but thankfully it healed quickly, and routinely carry water around to take...
We also have a skipping / unclear pattern in my family. My parents and siblings don't / didn't have UC but two uncles do. Their children are fine (so far) but two cousins from another uncle have AS...
Thanks Sara, I appreciate your comment, as the incident was actually worse. She ranted at me, and said I was the only person in the clinic who monitored stool shape and colour, amongst other things....
I have no scientific evidence but I think grape seed extract, turmeric and boswellia make a difference for me. I also take slippery elm when I'm flaring, to act as a protective mucilage....
Yes, this happens to me a lot, because my CRP barely rises even when I'm being told I'm about to have my bowel removed (bullet dodged 3 times now). What tended to happen is that I'd have increased...
Hi Faithmac, yes I have the genetic 'curse'! UC, AS and Psoriasis run in my wider family. It's interesting that the pattern of who develops one (or more) of these illnesses and who dodges the bullet...
Do you just have one caecal patch? Just curious because I have patchy pancolitis and often get a patch by my caecum, but sadly I get it elsewhere too!...
I think with Entyvio it's probably best that you hang in there and give it a few months, because Entyvio can take longer to work than other meds. According to the internet it can take 6 weeks to 3...
I'd agree with you, Suchatravesty, that it could be hard to figure out if it's genetic predisposition or Humira that triggered the psoriasis, as it's not uncommon to have psoriasis and UC running in...
I've had psoriasis on and off since childhood and the best treatment for me was straightforward sunshine. Has your daughter tried UV phototherapy?...
Hi Deen, best wishes and I hope you're starting to feel better in hospital, from a fellow Londoner! I tested positive for Omicron on 31st Dec, but fortunately didn't flare up. I did have a deep pain...
Ooh this article looks really interesting but I don't have a subscription so will have to think about whether to buy it so I can read it in full. That's an interesting comment they make about gut...
Hi DavidEA, I hope you're feeling well today after your first dose. The only side effect I got from the loading dose was palmar-plantar psoriasis. It was very itchy and the skin peeled off the base...
RyanC, it's 3 days since I had my injection and I'm very tired and irritable. I'll let you know how I get on with my next injection (probably in 3 months time) if / when I remember! If it is a side...
Well done for keeping going through 14 years of UC, Sara! I hope the Xeljanz continues to work, to give you time to get out there and enjoy life!...
I've also only had 1 IV dose and 2 injections so far, and haven't noticed this side effect (yet) but I did have this feeling of depression with azathioprine, and once had to come off an asthma drug...
Hi Magicbeans, this is what happened to me starting in around Spring 2020. I had good therapeutic levels and no antibodies against Humira but it wasn't working, so I was switched to weekly...
Like other posters I haven't noticed biologics (Humira then Stelara) causing me to be immunosuppressed; I haven't been more sick than usual, either in frequency or severity, and I've had Covid twice...
Just to add to this, so far the only side effect I've had was from the initial IV dose. I got palmar-plantar psorasis (ie on the palms of my hands and soles of my feet). My skin peeled and it was...
That's interesting you're on monthly injections. I've been started on a 3 monthly dose, which I think is quite far apart, but I'll only be moved to more frequent injections if I start to flare....
I'm on Stelara and although it's early days it's working well for me. I'm about to have my 3rd dose in 2 weeks time, but my faecal calprotectin is normal, and I currently have no UC symptoms....
I definitely think it's worth trying Xeljanz and Stelara before surgery. One day they should be able to make drug choices based on our genes, but till that time comes unfortunately it's trial and...
If faecal calprotectin tests are useful for you I'd request one now to see whether you have active disease, and how bad it is. Faecal cal is pretty indicative of how active my UC is, but of course,...
Hi DavidEA, As I have asthma as well as UC, my strategy when I got Covid (back in March 2020, so probably the Wuhan strain, and before vaccines were available. At the time it was a very distinctive...
https://www.sciencedaily.com/releases/2021/12/211222084024.htm I suspect that it's more likely that IBD leads to an accumulation of microplastics rather than microplastics triggering IBD. The...
I once had osteopenia but I reversed it by walking uphill on a treadmill with a weighted bag on my back. I also regularly take vitamin D but I'm not currently taking calcium (I'm currently relying on...
I've had upper right quadrant pain in the past, but the ultrasound scan indicated that my organs were healthy, and I never got an answer for the pain. I think if the ultrasound scan is showing that...
When I'm flaring I eat (well drink) a lot of smoothies, with dairy alternative milk (rice milk and oat milk usually). Banana, peanut or almond butter (or ground almonds) and fine oats (Ready Brek in...
2006BM, one thing worth mentioning is that going up a rung in the drugs ladder doesn't necessarily mean that you're moving onto a drug with more risk and side effects. There's the cost to be...
Ugh - Azathioprine! It works well for some people but I have low TPMT levels so I had side effects with it, and was switched to 6MP (6-mercaptopurine). Neither worked, and both gave me side effects....
Hi TP177, I think in my case it wasn't the Xeljanz causing the joint pain and enthesitis (plantar fasciitis, neck, wrist and finger joint pain mainly), but probably a case of the Xeljanz not...
Good luck Fractal44! I'm slightly ahead of you with my Stelara journey; I had my second dose two weeks ago, and so far so good. I switched from Humira to Tofacitinib / Xeljanz this summer, but the...
Sadly if anything the opposite is true for me. I've had a few flare ups after getting a respiratory virus, which I think is probably due to my immune system going into overdrive....
To be honest I didn't do much research on the bioavailability of the herbal supplements I take, partly because I was initially just looking to add more anti-inflammatory ingredients to my diet, but...
I have had one or two iron infusions in the past due to low iron levels (but not linked with having Remicade)....
Broadly speaking there seems to be two camps - those whose inflammatory marker blood test results can indicate inflammation reasonably accurately, and those whose inflammatory markers (blood tests)...
I've been on mesalazine (mesalamine) type meds daily (well I slack off sometimes when I'm in remission) since I was diagnosed in 2004, so approx 17 years now. Personally I haven't had any side...
If it helps at all, the supplements and vitamins that I've found most helpful are: Grape seed extract (not grapefruit extract) Slippery Elm Turmeric Boswellia Vitamin D3 Omega 3 Probiotics But like I...
I agree with the other posters. It's probably worth trying oral and rectal meds first. You could also see if any of these possible ways of blocking TNF naturally might work for you:...
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...