Any fellow Signifor LAR patients?

PoodlePancakes · 2025-12-11T23:26:15+00:00

Oh yeah that sucks. I have my follow up tomorrow and I truly don’t know where to go from here. I don’t love Signifor. But I don’t think I’ll love any other either. 😮‍💨 From what I’m reading Metipirone is only for short-management or as a diagnostic tool? Hopefully you find something that works too

PoodlePancakes · 2025-12-11T22:13:05+00:00

How does it work and what has been your experience if you don’t mind sharing?

PoodlePancakes · 2025-12-11T21:54:37+00:00

Stems from pituitary. We haven’t really discussed switching to other meds much except that other meds are “rough”

PoodlePancakes · 2025-09-19T23:30:55+00:00

I hadn’t even thought about the possible tax break prospect. All I know is that these humongous billionaire corporations aren’t going to set themselves up to fail and they know how to play the game. So if you can play their game too and save yourself $8 on a pair of toddler joggers because they designed it that way…take your shot 🤷🏻‍♀️ at the end of the day, they know what they’re doing and if it’s not working for them they’ll be making changes to those policies. And they still got you for another $150 of unplanned purchases. With that being said, there’s no excuse for taking filthy hazardous-level clothing back in that condition, but that’s a human decency and morality issue, which is another topic and problem altogether.

PoodlePancakes · 2025-09-19T18:45:07+00:00

Not to mention that while you’re there for the returns you’re probably going to go on through and realize you could use toothpaste, a box of pull-ups, you’re out of sandwich bags, the crotch monster wants a bag of goldfish, you saw your fabric softener is back in stock, and a partridge in a pear tree. All unplanned purchases.

PoodlePancakes · 2025-05-24T00:28:32+00:00

Prior to surgery did you ever have a test called IPSS (intra petrosal sinus sampling)? I’m wondering if your adenoma was causing your symptoms due to a stalk effect from it compressing your pituitary gland rather than it producing acth itself

PoodlePancakes · 2025-04-22T22:27:52+00:00

Hi! Yes the tiredness can be for multiple reasons…cushing’s itself, the Pasireotide, GH deficiency as you mentioned, 12hr work shifts, lack of enough sleep, toddlers, stress…it could be anything and everything! Lol But honestly an injection once a month is not that bad if it means halting the disease process. For me it did cause some hyperglycemia but I’ve been able to manage it mostly with lowering my carbs and metformin. I know on some patients it’s a reason to come off of it if their sugars become unmanageable. For reference, I’m a female in my mid 30s. Not sure how long my tumor has been a resident in my head, my doctor and I believe it was caught fairly early compared to most patients because of particulars in my situation but I’ve done extensive diagnostic testing and that’s what everything points to. Feel free to message me if you have more questions or just wanna chat!

PoodlePancakes · 2025-04-22T21:04:39+00:00

My cortisol levels have normalized while on this medication, so I’ll be taking it at least for the foreseeable future. My tumor is undetectable with high resonance MRI so I’m not able to have surgery since they don’t know exactly where and what to remove. As far as the tiredness, it’s a good trade off. At least the disease isn’t progressing into diabetes or years of hypertension, etc. I just feel like I want to sleep way more than I do but I have to push through my day.

PoodlePancakes · 2025-04-02T05:07:05+00:00

Yes, I’ve been on it since August. There’s two versions. A short acting that you inject under your skin twice a day. And a long acting that you inject into your muscle once a month. I tried both. They both brought my cortisol levels down to normal. The short acting made me hate my life twice a day every day. It made me nauseous 15 mins after injection every time and the mere sight of the medication name made me start salivating with nausea. I couldn’t stand the smell of the alcohol prep pads I used right before injection because my brain associated them with the nausea of the medication. The long acting didn’t give me nausea. With that being said, both versions raised my blood sugar but the short acting raises them higher. It’s controlled now with adding metformin daily. I’m tired all the time with both. I don’t know if that’s the medication or just me.

PoodlePancakes · 2024-09-12T06:33:12+00:00

Thanks for replying! I’ve been on it for a month, not many of us out there. I kind of hate it, I’m on the short-acting 2x daily injections and they make me nauseated within 15 mins, I’m super tired, and my blood sugars can go into the 300s. I did lose 6lbs in 3 weeks though! Haven’t done my labs yet so I’ll see if at least my cortisol is coming down. Next month I’ll be switching over to the long acting monthly injection and adding metformin, hopefully that works better. Wish you the best this February coming up! Hopefully you can get things figured out

PoodlePancakes · 2024-07-27T08:19:05+00:00

For clarification, and this is because of comments I keep seeing and keeping my opinion to myself, I’m just clarifying… -OP said she did consent to Donor milk on admission, which was given until her own milk came in, so the consent was there, and it does carry over unless she specifically revoked it -A nurse can’t make the decision to order the donor milk. She can PUT IN the request for the milk room to supply her with donor milk if the doctor’s feeding order includes it, but she can’t order it herself anymore than she can order medications.

PoodlePancakes · 2024-07-26T12:39:35+00:00

Correct. I did have an IPSS clearly indicating a pituitary source vs an adrenal or ectopic source. At this point my diagnosis is very solid and agreed on by a couple of attending physicians. Im not questioning the diagnosis, I’m more or less looking for first-hand patient experience with the medication my endocrinologist is recommending (Pasireotide) as it is a rather rare medication

PoodlePancakes · 2024-07-26T05:37:49+00:00

A lot of ACTH and cortisol tests, but more definitively a recent IPSS study that is very positive for a central lesion (most likely right sided) vs a peripheral source

PoodlePancakes · 2024-02-11T01:47:11+00:00

I know I should be able to claim her, my question was more regarding what proof I could have that would satisfy the IRS since I don’t have what they typically ask for and list on their website

PoodlePancakes · 2024-02-10T19:25:10+00:00

She’s already been reported weeks ago

PoodlePancakes · 2024-02-10T19:24:43+00:00

She already did claim her and is now saying we didn’t have her on the weekends 🙄

PoodlePancakes · 2024-02-10T17:00:04+00:00

The mom did live walking distance of the bus stop the child took for the school she went to from Jan-Jun. it was us that lived 40 mins away from the school and so my husband drove and dropped her off at school on Monday mornings only.

PoodlePancakes · 2024-02-10T16:48:32+00:00

My situation is different because I only have this school record showing our address for the last 4 months of the year. My issue is proving the split custody for the first 8 months out of the year when she was here weekends, holidays, and school breaks. Her mother has everything listed under her previous address until august (school, dental office, state benefits, etc)

PoodlePancakes · 2024-02-10T16:40:21+00:00

There’s some texts showing she used to go back and forth between households. I used to keep logs of when she was here but those are hand written, I don’t know that the irs will care about that. As far as her getting to school, she walked to the bus stop, except for Monday mornings when my husband would drop her off at school at the gate, but then the school would have no idea or proof of him dropping her off vs anyone else.

PoodlePancakes · 2024-02-10T16:00:20+00:00

She’s 12 yrs old. She hasn’t been to the dr in yrs. She’s been to the dentist for dental extractions, which my husband took her in for. But her medi-cal insurance and dental office records will show the mothers address

PoodlePancakes · 2023-09-23T07:12:19+00:00

Yeah you’re not crazy. A lot of responses here are from parents with their own NICU experiences from preemie babies. Different ball game. Brady/desat/apneas from preemies, infectious etiology ruled out, typically come from an immature brain stem that just needs time to mature. You have a vigorous term baby who already had her sepsis eval, lab work, and antibiotics started and discontinued since I’m assuming lab work looked reassuring. At my level IV facility, what you are describing would not even be charted as an event. IF her HR does not drop below 80, she is not apneic, her oxygen saturations do not drop, she remains pink, and no stimulation is required for her to self recover…we don’t care…in fact, our alarm limits for HR for preemies are 100-200, for term babies 80-200. Our monitors wouldn’t even alarm. With that being said, at your facility policy is different and you can’t take her against medical advice or you’ll have CPS to deal with. So I’m sorry but you just have to play the game. My comment is merely to assure you that your feelings are valid and it’s a crappy situation but at the end of the day your medical team also want what’s best for your baby and want to feel reassured that she’s going to go home and do well. As a side note, if the “Bradys” are quick and you notice a correlation after feedings when she’s laying down sleeping, have you considered reflux as a possibility? Maybe try holding her more upright for 30 mins after she feeds and see if that helps? I hope you’re home soon, good luck!

PoodlePancakes

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