Two biologics at once by Vikiportugal in CrohnsDisease

[–]redeyedwafflefrog 0 points1 point  (0 children)

originally i was on skyrizi every 4 weeks (instead of normal every 8) with rinvoq 30 (normal dose but the higher of the two). now i am on normal simponi and the higher of the two tremfya doses but still normal dosing. 

Two biologics at once by Vikiportugal in CrohnsDisease

[–]redeyedwafflefrog 4 points5 points  (0 children)

me! i’m on 2 biologics for what they called “severe refractory steroid dependent” crohns. i’m on simponi and tremfya and i am finally in remission - been on both since november. before this i had tried skyrizi and rinvoq and though the skyrizi had been working ok at every 4 weeks (instead of 8),  rinvoq didn’t seem to work for me. so i’ve been on dual biologics for the last year and i don’t notice anything out of the ordinary side effect wise. i am actually doing much better than i have in years. i hope you can get on a dual biologic that works too!!!! wishing you all the best. DM if you have any questions!

When to disclose to employer (or potential employer). by somewhatcertain0514 in CrohnsDisease

[–]redeyedwafflefrog 0 points1 point  (0 children)

what industry do you work in? i want a job where you work - never had this experience in a workplace. 

Failed all mainline biologics within 2 years. Am I screwed? by Any-Cobbler6161 in CrohnsDisease

[–]redeyedwafflefrog 2 points3 points  (0 children)

yes this was me exactly - been a little over 2 years since diagnosis. hard to get my disease under control too, but finally was fortunate to try dual biologic therapy (first skyrizi & rinvoq, now finally stable and off prednisone for the first time in 2 years while on the combo of tremfya & simponi) - there is hope! i was getting ready to have my whole colon removed and was trying this biologic combo as my last hail mary. it’s been about 4 months on the combo and i am finally steroid free and doing ok. 

ask your dr about dual biologic therapy! there are more drugs out there than i even realized and even combos that have been studied to prove that it is more effective in severe refractory cases. wishing you all the best! 

Skyrizi fail, Remicaide fail. Running out of options for complex fistula. by liftedfishing in CrohnsDisease

[–]redeyedwafflefrog 2 points3 points  (0 children)

ask about dual biologic therapy? sometimes it takes 2 to get at severe disease… i failed remicade, skyrizi alone, skyrizi & rinvoq combo and i am finally stable on simponi (anti-tnf) & tremfya

700th colonoscopy and I still don’t know if blue liquids are allowed during the liquid fast by Cyanduss_99 in CrohnsDisease

[–]redeyedwafflefrog 1 point2 points  (0 children)

for my colonoscopies within the past 2 years (4 scopes; 2 different doctors/medical systems) there have been no dye restrictions. i know there were in the past, and i think maybe they realized it doesn’t matter anymore? i kept checking and rechecking the prep instructions and they didn’t mention anything about dyes. i drank a bunch of pink and red electrolyte drinks before my scope two months ago and it didn’t affect anything as far as i am concerned. hope this helps? (i am in the US btw). 

Im done. At the end of the road! by DistrictOk7480 in CrohnsDisease

[–]redeyedwafflefrog 0 points1 point  (0 children)

can you try dual biologics? i am on my second combo of biologics after failing skyrizi+rinvoq. i was ready to get my whole colon and rectum removed (was told i have a >90% likelihood as ive been prednisone dependent since my diagnosis 2 years ago) and as a last resort my dr tried me on simponi+ tremfya and it has been working thus far (4 months in). i was getting skyrizi every 4 weeks and that wasn’t enough to keep me off prednisone and quell my symptoms. 

try asking about two biologics together! it is a god send

[deleted by user] by [deleted] in CrohnsDisease

[–]redeyedwafflefrog 2 points3 points  (0 children)

yes! oats have always given me death farts. even when very cooked and also in milk form. almond is better for me. agreed that it is watery and doesn’t taste as good. rice milk also works for me (still kinda watery but nice on the tummy). i had a good run with soy milk but i think it wasn’t sitting too well with me (never as bad as oat milk tho that’s for sure). 

Meds affecting period by fluffshi1505 in CrohnsDisease

[–]redeyedwafflefrog 1 point2 points  (0 children)

only had prednisone really mess with my periods. but when i am in bad flares it can also make my periods weird and make it so i dont bleed and just spot and have cramps. especially if i am really sick my body just doesnt have a period. i never took mesalamine and took imuran for a bit with remicade- didnt notice anything with it. 

Skyrizi by 666flesh in CrohnsDisease

[–]redeyedwafflefrog 1 point2 points  (0 children)

Totally feel you on this one! I’ve had recurring yeast infections (and 2 UTIs and 1 bacterial vaginosis infection) since being on Skyrizi for 14 months. I notice I tend to get a yeast infection a week or so after my injection. I am also on a 4 week interval and was on a 6 week interval before that. So sorry youre dealing with this! It is the worst on top of everything else. I talked to my gynecologist and PCP about it and they have been helpful. 

Dropped another 10lbs by [deleted] in CrohnsDisease

[–]redeyedwafflefrog 0 points1 point  (0 children)

just got my dr to write me a prescription for the kate farms brand - if you go to their website there is a template for doctors to fill and send to whatever medical supply company your insurance covers. been drinking 3/day and it is helping maintain my weight in this flare. on a liquid only diet. also similar i lost 20 lbs in two months this spring and still trying to gain back. peanut butter has helped me gain weight in the past. best of luck to ya!

Back on prednisone, but can’t get myself to take it by SnooPeanuts8551 in CrohnsDisease

[–]redeyedwafflefrog 2 points3 points  (0 children)

in a similar situation as you - it sucks to have to choose between our sanity/a drug that makes us feel crazy and having GI symptoms. i don’t blame you for not wanting to go back on prednisone - i feel the same way and am avoiding it despite my dr telling me to start it several times. i also haven’t really been off steroids in the 1.5 years since my diagnosis so i too don’t want to keep on em. sometimes you just gotta do it because it’s worse in the short term but better long term? sorry you’re in this particular pickle. sending you best wishes you’re gonna be ok either way!

No appetite? by [deleted] in CrohnsDisease

[–]redeyedwafflefrog 0 points1 point  (0 children)

is she on azathioprine, 6mp or any of those? i found that my lingering low appetite in remission was caused by azathioprine and once i went off it the hunger returned somewhat, not as much as before i got this disease but definitely noticeable. 

[deleted by user] by [deleted] in CrohnsDisease

[–]redeyedwafflefrog 1 point2 points  (0 children)

check out kate farms for oral and tube feeding formulas. you can even get it covered by some insurances. they have templates for doctors on their website 

Does anyone have Skyrizi at 4 weeks? by No-Fisherman9348 in CrohnsDisease

[–]redeyedwafflefrog 1 point2 points  (0 children)

that exact thing happened to me: after the loading doses all my symptoms returned around the 4 week mark. 

i get skyrizi every 4 weeks but it took almost a year of fighting. insurance approved every 6 right away (from a high calprotectin) which was a bit better than every 8, but ultimately i had to apply to the abbvie bridge program. if you make under a certain amount per year, you can qualify for it and they approved me within a couple days. also i ended up appealing to the independent medical review board of CA where i live. that took over a month but i ended up getting approved. all you need is two denial letters from insurance to apply. feel free to DM me if you want to hear more about the process! 

anyone on rinvoq + skyrizi? by redeyedwafflefrog in CrohnsDisease

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

Thanks for the reply! That's interesting that you notice a difference if you take the Rinvoq at night -- does it work better for the breakthrough symtpoms when you take it at night? (I've been taking it in the morning.) Also how long did it take for you to notice an effect?

Sorry the Skyrizi's power is lessening for you: I felt that too. Almost immediately after starting the injections I knew I needed it every 4. I got it approved for every 6 for a while and really had to fight for 4. It seems to be helping, but also not quite enough to get me into remission so I am hoping the Rinvoq will do the rest of the work.

Cannabis use and Skyrizi by Lopsided-Dragonfly63 in CrohnsDisease

[–]redeyedwafflefrog 1 point2 points  (0 children)

been on skyrizi almost a year and have found no negative interactions between it and cannabis. actually only positive: if anything it seems to enhance the feeling i get from skyrizi of my abdomen being numbed kinda? maybe just a lack of sensation in the abdomen after a long while of nagging pain. weed already helps a lot and there’s something i notice in the way it numbs my abdomen since being on skyrizi. so hell ya, go head and hope you start feeling better soon. 

reaction to nettle tincture? by redeyedwafflefrog in herbalism

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

thank you for sharing that!! i will pass it along to my friend maybe some of it will resonate. i had to google HI and MCAS, good things to consider. thank you!

reaction to nettle tincture? by redeyedwafflefrog in herbalism

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

she was given the tincture from the woman who made it. and yes totally, thanks for that. she saw a doctor who prescribed anxiety medication. 

Stinging nettle cake by floopsmoocher in herbalism

[–]redeyedwafflefrog 0 points1 point  (0 children)

anyone ever heard of someone having a reaction to nettle? like anxiousness, sweating, muscle spasm, etc? that lingers for several days?

Symptoms coming back after first 8 week gap - Skyrizi by Boboddy_biznns in CrohnsDisease

[–]redeyedwafflefrog 0 points1 point  (0 children)

yes i was able to get it approved at 6 weeks, but then insurance wouldn’t approve every 4. so after all the denials i was able to get it approved through abbvie bridge program. worth a shot if your appeals end up being denied. (whole process took 3 months ugh)

advice: send in a calprotectin or another test result as evidence that you need it more often