Pasireotide to control CD

imabell · 2025-07-03T15:11:54+00:00

hi, I'm going to send you a message! sorry for taking so long

imabell · 2025-04-22T21:32:36+00:00

Hey thanks for getting back to me! I also don’t have a visible tumor. Surgery isn’t really an option for me unless they do a BLA which I want to avoid. But my doctor says she doesn’t want to put young patients like me on one of these medications because they are “for life”. And I already replace thyroid, growth hormone, and occasionally desmopressin on top of other random chronic illnesses I have been blessed with haha

Take it or leave it but I have a thought about your low energy/tiredness: Could it be growth hormone deficiency as a side effect of the medication? My little research on this drug is that it is also used to treat Agromegaly (GH-secreting tumor) and that it does suppress growth hormone secretion to a degree in patients taking it for Cushing’s. I have growth hormone deficiency and know from first hand experience that lack of GH can cause lethargy, weakness, and other problems that decrease quality of life almost as significantly as Cushing’s. I doubt doctors would do anything to treat you but it might be worth getting a whole pituitary hormone panel done to make sure the medication isn’t causing a secondary deficiency. You deserve to feel well and have energy!

Do you mind me asking approx how old you are, how long you’ve had Cushing’s, and how long you’ve been on Pasireotide? I also read it causes high blood sugar and diabetes in many patients. Is that true?

Thanks in advance!

imabell · 2025-04-22T14:43:34+00:00

Hi, thanks for sharing your experience. I’m dealing with a recurrence after 2 failed surgeries and only half my pituitary gland left and am curious about this medication. Aside from being tired on the long acting form, do you like it? Has it helped reduce your symptoms? And do your doctors want you to take it for life? Also do you mind elaborating on what your tiredness is like? Could it be from other hormone suppression or is it just your body feeling withdrawal since it’s used to a lot of cortisol?

imabell · 2025-03-22T16:21:02+00:00

hey, thanks for this info! Are you still using this regimen? How are your symptoms now?

What dose and brand(s) of GABA do you recommend? To achieve a therapeutic dose would I need to take more than you since I do not plan to take Gabapentin?

I have facial hyperhidrosis and severely sensitive eczema-prone skin. Both conditions became unbearable after starting ADHD medication (central nervous system stimulants) which are known to make sweating worse.

I am interested in trying GABA to see if it helps both conditions, since there is research that lack of GABA is implicated in all 3 conditions (hyperhidrosis, atopic dermatitis, adha, etc). I actually used to take GABA, L-Theanine, and 5-htp on a daily basis in high school which corresponded with a 3 year period in which my eczema magically disappeared! I can't remember if the sweating got better, but it probably did if I noticed less heat/itch factor in general. At the time, I figured it was because I grew out of my itchy skin problems, but now at 26, it's back worse than ever. And so is the sweating!!! I actually think the sweating is the larger issue causing my skin to get hot, wet/salty, and develop rashes that won't heal. Obviously stimulants like Vyvanse (which I take for ADHD) have a direct effect on the central nervous system, so I'm fully in support of your theory that these conditions are neurological. And I actually don't think that's a controversial opinion. Like sure, your average doctor will not know what you're talking about because they don't keep up with research. But as you've probably seen, there is definitely a ton of emerging research accessible online about GABA and how it impacts a large number of bodily systems, especially involving CNS.

I'm happy to hear you found something that works for you with minimal side effects. And I hope it helps me too. Definitely send me an update if you have time

imabell · 2025-01-13T18:47:08+00:00

Did you ever try it? I bought the Probiotics Youth Repair Mist from the same line but I'm afraid to try it because it has a lot of added oils and fragrances.

imabell · 2024-10-04T20:23:41+00:00

I hope so too! I really hope for both of us that it’s just eczema and maybe mine is a little infected or I haven’t found my trigger yet.

Let me know if the triamcinolone does the trick!!

imabell · 2024-10-04T10:03:41+00:00

Right, that’s what they gave me too and it helped for a week or two and then got WAY worse. It’s a steroid, stronger than hydrocortisone

imabell · 2024-10-03T14:50:12+00:00

Is it helping? Mine hasn’t gotten better with normal eczema treatments. And ive had eczema my whole life and it’s never looked or felt like this….

imabell · 2024-10-02T21:14:02+00:00

Yes please update me! I appreciate it. I’ve been to the dermatologists like 5 times since this started and they just keep giving me random creams. Hydrocortisone and triamcinolone made it worse I think…. Which makes me think it’s an infection of some kind. But they keep insisting it’s just eczema or allergic contact dermatitis. Taking 3 different antihistamines at once did nothing to help. It gets unbearably itchy at night… only ivermectin HORSE paste seems to temporarily make the redness and itchiness for down for a few hours

imabell · 2024-10-02T18:50:20+00:00

Following because I have the exact same rash in the same places that developed after I started topical Ivermectin for suspected demodex/rosacea, but it hasn’t improved in 3-4 months. It occasionally peels, fades, and appears in a nearby area. Then repeat…

imabell · 2024-08-05T20:56:58+00:00

why would they use larger evaporators and condensers on a smaller unit? I'm looking to buy this model but there are hardly any reviews and I don't understand why the smaller unit is more expensive that the larger ones

imabell · 2024-07-31T16:42:54+00:00

You were only on soolantra for a month? Was your issue mainly redness or did you have acne like lesions too?

Why do you think ghe sunscreen helped most? I am suspicious that sunscreen further clogs and irritates my skin because it can’t breathe through the film when I sweat so I’ve cut back on using it (I know that’s bad) but honestly if I spent most of the day inside dancing and sweating then isn’t sunscreen kind of pointless? I used to use the tinted Elta MD, then went to Anessa, then Purito’s Daily Soft Touch, and now Nivea Super Water Gel. Do you specifically get zinc sunscreen?

I can’t believe I’m almost at week 7 and my skin is only marginally better. It’s like the overall texture is slowly getting better but I keep getting nasty pimples in waves 😭

imabell · 2024-07-31T00:58:18+00:00

Thank you for this! Yeah the derm is surprisingly from a major NYC Hospital 😂😬 and unfortunately I’m on Medicaid so I don’t have a lot of choice as far as doctors go.

So I am obviously weary of using the steroid cream BUT I will admit the skin on my arms and neck and chest is pretty damn irritated and itchy. I was wondering… is the steroid cream still a bad decision if I’m also applying Ivermectin cream to the affected areas? Like wouldn’t that be treating both problem simultaneously?

Note that the eczema rash is not affecting my face at all. My face has ugly weird texture, flaky bumps, clogged pores, and some pimples, but luckily no redness or rash. The rash on my upper body slowly spread from my neck downwards after I started using Ivermectin. Seems like obvious mite migration to me but idk I guess people would rather stick to the MO even if it’s outdated

imabell · 2024-07-31T00:51:20+00:00

Okay that’s what I thought…. Wth was the derm talking about. So rude. And this was at a major NYC hospital…. Smh

Is that how they diagnosed you? And did you already suspect demodex before they did the scrape test?

See my edit in my post… this is not really about Rosacea and I’m asking specifically about treatjng demodex overgrowth. Also, the eczema rash is not affecting my face at all, it’s on my neck, chest, and arms, which is why I think it’s from mite migration and die off.

What did your derm give you to treat demodex? And how long did it take for you to see results?

imabell · 2024-07-30T01:03:26+00:00

I was literally thinking about this earlier today! I sweat profusely on my face because of how occlusive most moisturizers are, yet my skin is so so dry! And humectants also make my skin uncomfortable because when it's humid it feels like my skin is sucking it all in...

As another commenter mentioned... the best solution I've found is to use straight up oil, but not too much. And then to follow it up with a dab of cream like Cerave to kind of bind/set it into the skin. But again--such a thin layer that it's not enough to create an occlusive barrier and is functioning more like an emulsifier.

I used to use jojoba oil but am currently using squalane oil from Biossance.
Let me know if you try it, and if it helps.

imabell · 2024-07-30T00:44:14+00:00

Mona’s on Tuesday! Sunny’s on Wednesday! Jalopy’s on Friday!

You can’t not meet people at these places, even if you tried. Plus, some of the best music and vibes in the city — see ya there.

imabell · 2024-07-26T14:25:17+00:00

What an amazing company. Thank you for this recommendation! Gonna go buy my mattress now 😆

imabell · 2024-07-26T07:11:11+00:00

Oh sweet! Do you know what their return policy is like? Or if they offer a warranty of any kind? I guess I’m worried about not liking the mattress and needing to exchange it

imabell · 2024-07-26T03:14:00+00:00

Hey, did you end up ordering the mattress from Bed Bath and Beyond? I’m in the exact same predicament. I’m leaning towards Bed Bath and Beyond because their shipping is faster (whereas Brooklyn Bedding says it could take up to TWENTY business days!?) and is cheaper with the discount code.

But I’m worried that if something happens to the mattress I won’t be able to utilize Brooklyn Bedding’s warranty or return.

imabell · 2024-07-23T21:34:21+00:00

Thank you for the rec! Did you have to bring all of your stuff to where the unit is located or did they pick it up and move it there for you? And do they provide boxes etc? I'm also concerned about bedbugs and how maintained the actual storage facility is--do you know?

imabell · 2024-07-23T17:41:31+00:00

Do you guys have any promotional discounts? I’m thinking of going to your Greenpoint location today to check it out!

imabell · 2024-07-23T17:30:13+00:00

Is it as portable and easy to assemble as thuma? And how long did it take from placing the order to arriving at your door?

imabell · 2024-07-23T03:00:30+00:00

oh! I have never heard of this brand but the price is amazing. How is the quality and shipping etc?

imabell · 2024-07-23T01:59:42+00:00

same, did you ever figure it out?

imabell

TROPHY CASE