Still around:). Just living life in remission after 30+ years of flares. I have a very tiny part time job and no one knows my diagnosis. And I've done a bit of travelling. Trying to cram in as much...
Hi Everyone, Thanks for the responses. Great to know I'm not alone. The worry now about the weight gain; aside from the aesthetic is the risk of fatty liver disease. I meet with my GI on Tuesday so...
Try a strict gf. diary free diet for a good 2-3 months and see if that helps. Could also look into the specific carbohydrate diet if you haven't already. Maybe skip breakfast on work days? I know...
Is the joint pain caused by humira? For the first 6mths to 1.5 years on stelara I had the most excruciating knee pain. I mean rolling on the floor kind of burning. Rheumy put me on benadryl with...
Thank you everyone for your responses. It sounds like a crap shoot. Pun intended. I guess I'll ponder a bit more as the last thing I want is to trigger a flare. It's very hard going from underweight...
As I said I've done medically prescribed diets.....the medication(s) are causing weight gain, not my eating habits. To clarify I'm NOT asking for dietary advice, just want to know if anyone happens...
I know it's a long shot especially given most of you are unweight - like I was. Still in blessed remission and any blips have been sorted by using Healing Bottoms turmeric suppositories I cannot deal...
Sorry this happened. Seems rather extreme! Perhaps anti histamines/ prednisone for pre meds. I had some bad days in the early months buts it’s pretty mild now. It attacked my joints and gave me awful...
Take it every 6~8 weeks as needed....
Hi Minnie , Any chance you get get on Ivig? You can combine that with biologics....
I would also assume she’s grieving the loss of her dad. I certainly hope her health has been kind to her and she’s living it up somewhere spectacular. She deserves it....
I've been dealing with an abcess/fistula since last week:( First in years. Too soon to say if Stelara is failing as it may be an anomaly like I had in 2019. Throwing everything at it. GI put me on...
That’s all you need Minnie! I hope it clears up. Any fistula relief? Likely too early to tell if Rinvoq is helping....
Heck no! It was an easy decision - in fact it was made for me given that I've lived in hospitals/bathroom since I was a teenager...and it got miles worse than anything imaginable since the whole...
Let us know how u do, particularly with the fistula issue. If Stelara ever fails me I’ll have to switch. Not sure there’s anything else for our unfortunate situation....
34 F’in years of hell. It dies with me....
Oh no Minnie! I'm so sorry - one of my biggest fears is the fistula return - among so many other things. I would be beyond devastated too. Did you try Healing Bottoms turmeric suppositories? I think...
Still doing very, very well on Stelara! Extremely well. Hope it works for you too!...
HI 73- thanks for the update! I'm so happy to hear that her issues are much better. Is she in the "r" word? I don't dare say it:) I had significant side effects the first 2 years which varied. First...
Hi Clo - you're absolutely right, I am enjoying life!! I even have managed a small job but I'm still fiercely advocating for a livable income for the disabled. It's an uphill battle but I hope within...
Hi Minnie (& Clo!) I'm almost hyperventilating reading your post. It just fills me with such anxiety. Perhaps this is a blip regarding remicade, especially if you haven't had an abscess in 3 years....
Most excellent news Sara! The “R” club is pretty sweet!...
Any update 73?...
Well... I'm officially a bada$$ and got my first (and likely only ) tat last Wednesday. I figured if my port didn't cause a PG flare then I should be safe with a tattoo. I've had no issues with my...
Wonderful news!! I hope it works as well for her as it's done for me....
I did 40 HBO treatments. It has to be done consecutively for it to take. It was a massive commitment especially when I was so sick. It closed my RVF but did not help with the other fistulas. I...
Continuing to do amazingly well. I have a history of PG (legs) but that's been in remission for years. Crohns is in remission with Stelara and supplements I'd like to get a small tattoo on my...
I would highly recommend Healing Bottoms turmeric suppositories. They’ve worked amazing well for me....
Thank you both. I’ve just emailed her again. Will let u know if I hear from her.......
Anyone heard from her? We've been communicating rather consistently via email but I haven't received a response back and it's been over a month....Her last email was troubling....too many health...
Stelara and imuran- nothing else worked. I add turmeric, oral and suppositories, when I feel like my fistulas may be an issue. I steady and healthy....
Not sure if this has been covered or is relevant....(it's been a while since I've checked in) Stelara - nearly destroyed my knees - rheumatologist suggested I continue to take premeds 3-5 or even 7...
Remi gives you D?!! Wow. I'm so sorry to hear this. My suggestion would be to continue taking "pre meds" including imodium post infusion. I had the most painful knees about 2 years into Stelara. I...
OMG- that was 5 hours of hell. I'm sure my neighbors heard me screaming. As soon as it passed I was better. I was sweating, shivering, lying on the bathroom floor with blankets and a heating pad. Fun...
I’m screaming on the toilet & sweating so much. I got a dulcolax suppository & it’s been in for 20 min. It’s burning so bad & nothing coming out. I can’t sit down because of this rock of poop & im...
Thank you @Flowers. I actually don't think I can drive to the drug store I'm so uncomfortable. I'm walking like I have something stuck up there because I do! It seriously feels impacted. I'll try to...
Never thought I'd be writing about this issue! Last bm was Tues. Since then I'm having difficulty passing anything but a tiny hard rock. Nothing today so far despite the urge to go. Aside from water,...
Thanks everyone. Special hello to you Q:) It’s not Covid. I did think of calling my doc but I’m not sure what they’ll do. May just have to ride it out. I’m feeling a bit better & functioning. We’ll...
Anyone else absolutely flat on their back due to booster? 10 days prior to booster, Stelara 3 days prior IVIG I think this might have been too much for my body. I had momentary dizziness after...
Wow. Clo! I hear you. It’s extremely traumatic! Yes, I think it’s some kind of allergic reaction. No more burning since I started benedryl. I’ve been itching like mad....even my eye balls. Hopefully...
Hi Clo- nice to hear from you. I'm sorry that you too suffer with PG. This is such a hideous disease!! I don't have a derma, since I've not had PG issues for years. I haven't had a response from my...
Thanks Sara14....I’ll look into that. Only side effect I’ve had was yeast infections in the 3rd year. That cleared up. Sometime I’m nauseated or headache but remission is fantastic. So far no rash....
Posting on the UC side for more input) I have a history of PG which has (thankfully) been in remission for years due to IVIG treatment. Friday evening, hours after my Stelara injection my PG scar on...
From Canada- Imuran and Stelara both qualify for the booster shot regardless of age. I get mine in 2 weeks - post my last Stelara injection....
NCOT- Yes, it was Canada Mark who helped connect me with MAP and with the testing. My reading was off the charts. My GI was able to get the blood work done "off the record" and I sent it in. He's...
You know who didn't get CERB...the disabled; those who actually need it; like me! (But you already know what i'm doing to fix that NCOT!) I'm glad you're moving forward with surgery, though I...
Whoa...this is awesome. I have (possibly had) extremely high levels of MAP..... NCOT - if you're reading this...did you ever get tested for MAP?...
Hi There! Stelara totally saved me from fistula hell. I started in May 2017 and still on it every 8 weeks. I've only had 1 abscess since and am very stable. If I ever wobble or fistulas return my GI...
NCOT - Clo must have dragged up an old post of mine. TIES replaces the need for a conventional stoma so there's no need for a conventional bag always attached to you. I've been following the...