I'm at my Rheumatologist's office now waiting to be seen and to share your video with her so she can tell others about your story which is such an inspiration to me!!
I was on sulfasalazine for a week when I was 13 (diagnosed at 12) and it gave me a full body rash right before school picture day (yikes!). Turns out I was allergic to the sulfa in it lol. Long story short I'm 22 now and I have been on biologics since 2011 and it works just right for me. Hopefully you have a better experience with it than I had! Much love from Canada!
Hi sweetie, your videos are great, thank for sharing your story with us. Unfortunately I’ve pain and stiffness for almost 5 years but I was diagnosed with AS 9 months ago, I don’t feel well most of the time and the worst part is that I have to study 8 or 9 hours a day with a pain in my sacroiliac joint, I can’t sit for an hour straight and I have to change my position every 5 minutes so that I can reduce the pain and be focused on what I’m studying, I’m also taking Sulfasalazine and Prednisolone in these 9 months but I don’t feel well yet. I wish you the best and I hope you get better day by day.
When I was first diagnosed I took sulfasalazine and I remember taking 2 horse pills 3x daily, which worked for a brief period, but soon was changed to methotrexate with folic acid, then biologics. 1mg of Folic Acid per day will take care of the mouth ulcers.
I've been taking 2000mg of sulfasalazine (sulfa-sala-zeen) daily for approximately 20 years to treat my AS which has eliminated any of the excruciating hip pain I had prior to treatment to the point where I don't even feel like I have the disease anymore but after being on the medication for 10 years or so I was then also diagnosed with IBD, the biologic treatment put me into remission for a number of weeks at a time until it eventually stopped working which led me to need a subtotal colectomy in 2014 and I never looked back! Anyone who lives with IBD knows how debilitating it is and how hard life can get but getting an ostomy gave me my life back!
Hi Izzi, my daughter was just recently diagnosed with AS. I'm frantically searching for someone she can learn from. Are you still making videos? I wanted to check in with you and see how you were and if you are still making videos. Thanks for your time!
Hi Carrie, I just want to say that I'm really sorry to hear about your daughter's diagnosis. I was diagnosed at 16 (am 23 now) and am always happy to help chat with others who are going through this!! Did you end up finding anyone else on RU-vid to direct your daughter to? I am trying to learn more too (since we live with the disease forever) and am curious if anyone else on the internet shares their stories like Izzie? Hope you and your daughter are well :)
Hi I know this comment is a year old but if you need a community for advice on AS (I have it too) look up the subreddit called r/ankylosingspondylitis it’s a community of both people who have the condition, healthcare professionals and family members of those who have it 😊
hi, i'm just starting to take this too. i got rheumatoid arthritis and ulcerative colitis about the same time around the age of 28. i'm 35 now and balding :( anyways, is this working for you? i'm scared that i can get kidney or liver failure from this medicine or not being able to pee. it sucks when your condition gets worse over time and blood is coming out. it feels like these diseases are going to kill me at a somewhat young age. but, i'm sure that most of us in here feel the same way. meanwhile, healthy people are taking their health for granted. i'm starting at 500 mg to try it out first for the first week.
Thank you for your videos. I was diagnosed last year with AS and although not specifically diagnosed with IBD I have suffered with bowel issues my whole life that have improved quickly since I've been on Sulfasalazine. Unfortunately I'm still having a lot of inflammation (primarily ankle & foot) due to the AS but I am hoping my continuing to work with different medications I can sort it out. I was also nervous about side effects but luckily have not experienced anything serious. I'd be interested to know if you have tried non-inflammatory diets to improve your symptoms as well. Perhaps this is in some of your earlier videos I have not seen yet. Thank you again! JE.
Thanks for your comment! Ah I’m glad to hear that your bowel issues have improved since taking Sulfasalazine! Funnily enough I’m also experiencing inflammation in my feet! Currently managing plantar fasciitis symptoms atm, although thankfully my ankles are okay! Hope you get your pain under control! I haven’t strictly tried anti inflammatory diets as I know some anti inflammatory foods are contra-indicators with some medications. I would want to see a dietician prior to commencing any such diet to make sure it was safe! Have you tried any? Sending love! Xx
Hey Izz I know you posted this about a year ago but I was just wondering your not on biologics for AS?? Hope your doing well and thank you for posting makes me feel less alone.
@@mcren6781 this is inflammation, any autoimmune disease is a chronic inflammation in body. Please watch your diet, avoid sugar, processed foods, diary products, red meats, and gluten... detox/cleanse your body ... take sunlight and follow a cardian Rythym... you will be good. I feel wonderful ever since, I have reduced the saaz to jus once a day now...
Hi. Have you played with your diet? I’ve gotten relief when I was strict keto but I’ve been bad and paying the price. I’m scared of the meds but may have to bite the bullet soon. I have a bottle of sulfa I’ve been staring at for 2 years and have AS for the last 20 years. Started when I was 20. Off topic you remind me of RU-vidr Johanna James. Keep up the positive vibes!
Celecoxib didn't work for me. Might be different for yourself though. It's used for Rheumatoid arthritis a lot I was told. I am still taking etoricoxib tablets. Any reason why you stopped Etoricoxib?
Celecoxib didn’t work amazingly for me either. Arcoxia (Etoricoxib) was more effective but I stopped that because it’s far more expensive here in Australia as it’s not eligible for any subsidies under Medicare. The reason I’m moving away from NDAIDS is because they do aggravate IBD and my rheumatologist thinks I should be on medication that treats my IBD too! Hope that helps! All the best! Xx
Hi Izzy miss you hope you are ok. I have been told that I am not on the vulnerable list for a covid 19 vaccine even though I have Ankylosing Spondylitis. Very strange how they work that out. Hope to hear from you soon. Malcolm
Hii .i jus want to ask one thing .my doctor has told me to start taking sulfasizine (dmart) but she told me to take nsaid along with that .. but i was thinking taking both doesnt affect my liver ?? . . If i take them for long time ..😩
Anyone with AS ever try any sort of stem cell therapy? Or know anyone who has? Been living with this for 7 years now and like everyone else, searching for any and all help!
Hi Izzy, first thank u for sharing it’s nice to know I’m not alone lol and I love how u pronounce the drug but it’s actually pronounced sulfa-sala-zeen that’s how my doc told me lol. I was on it for a few weeks but the headaches I was getting was insane, then she tried me on a few different meds that didn’t work so now I’m starting back up on sulfasalazine cuz I did realize it was helping a little bit so fingers crossed the headaches go away after my body gets used to it. Can’t wait for an update from u. Stay safe and healthy.
I also have AS..I am taking indomethacin and I like it but my doctor wants to switch me to celebrex or meloxicam..in relation to AS which do think is better and why? bioligcs are not an option for me unfortunately... I also have Spinocerebellar ataxia type 2 or SCA2
I have had AS for 10 yrs now and just got diagnosed with IBD I take organic sulphur MSM tea spoon in morning and at night it really helps with my inflammation I don’t take meds
@@jayapareek7221 How many months have you taken sulfasalazine and how is your hair growth now? Pls reply as i am also facing the same condition. Thanks in advance.
I haven’t read anywhere about weight loss apart from as a secondary effect due to nausea and decreased appetite. Might be worth checking with your DR on that one? Best wishes! Xx
@@ThisIzzTheLife you talking about decreased appetite!!! I lost appetite initially .. nausea is a nightmare in the beginning . I still don't like most of my favorite dishes which I used to love eating all day.... Rice is one of them, I replaced it with wheat flour and I don't like most of the vegetables which I used to love eating and Now a days ,I like meat more than I used to..... That severe the decreased appetite problem really is ... I have been on sulfasalazine for one and a half years, 2 grams a day....... and take methotrexate 15mg a week.....
Hi, my name is Grecia. I’m Mexican. I was just diagnosed. I’m really confused and would like to chat with you. I’m 21 and I feel very lost about it all.
Hi, I have seen your videos and progress my suggestion to you stop using NSAIDs and DMARDs medication instead try something natural like COD LIVER OIL and TUMERIC to reduce inflammation (and try doing intermediate Fasting if it helps / possible). You can try using TENS EMS Machine which I have been using and it did helped in reducing the pain (without taking painkillers) please use it and it will help you alot. Wish you to recover soon.
We use TENS to remove pain and EMS to build and relax muscles during the gym exercises during Body Building also try Hot Massage / Hot Bath that will decrease pain.
@@jethrox827 she's not a dude, she's a lady, have some respect, but yeah I'm also curious to know if she's okay, she has her own life though, we can only wish her the best 🙏🏻
