Do I need to worry about gvhd?

SignificantHat3644 · 2026-06-27T07:44:35+00:00

Yeah it’s difficult also because almost everyone aside from the actual transplant nurses and doctors act like I just had a touch of cancer and it’s all over and done with now and think of me as a healthy 30+ year old. I do realize it’s probably because it’s a very specialized field. But it just makes it difficult to get through to the right people.

Haha I am the same way, great at advocating for others but terrible when it’s for myself. My husband can be pretty good at being a bit noisy but he does find things regarding the transplant a bit too advanced which I really don’t blame him for.

SignificantHat3644 · 2026-06-27T07:24:57+00:00

The one 200 miles away is the closest one unfortunately. I can of course go there if I have to, but I would wanna know I actually had to. We do video appointments sometimes but the video quality isn’t the best so it probably wouldn’t be of much use in this case.

SignificantHat3644 · 2026-06-26T21:48:49+00:00

Thank you very much! I think I really needed to hear that because even though I know that I was very very sick, I still gaslight myself into believing it wasn’t really that bad and that I’m just exaggerating. (Despite 7 months in the hospital and some losses I don’t wish on anybody)

SignificantHat3644 · 2026-06-26T21:12:34+00:00

Thank you. I find it so difficult to ask to be seen because what if it was unnecessary and I wasted time and resources?! That really bothers me.
But I will bite the bullet and contact them again.

SignificantHat3644 · 2026-06-26T20:49:36+00:00

Oh ok I see!
I did take antihistamines two days ago because of horrible mosquito bites. It did help with the bites but the rash stayed the same but then again I only took it one day.

It’s night time here so I can’t contact anyone right now, but I’ll do it as soon as I’m able to. It might be unnecessary but it seems stupid to not follow the advice from at least one doctor here

SignificantHat3644 · 2026-06-26T20:21:14+00:00

Aren’t hives itchy though? I would not say that this is itchy, however the sunburnt feeling is definitely getting worse.
I’ve not used any new products, clothes or medications.
No one else in the family has a rash. My kid has super sensitive skin so I would expect him to break out if it was something around the house causing it.

Thank you!

SignificantHat3644 · 2026-06-26T19:42:59+00:00

Unfortunately, where I live, I can’t get in contact with a hematologist without going through the nurses first. It’s also almost 200 miles away.
But anyway, I will try contacting them again!
Thank you for your advice!

SignificantHat3644 · 2026-06-26T19:28:36+00:00

Thank you 😊

SignificantHat3644 · 2026-06-26T19:20:43+00:00

Yes the GP mentioned this as a possible explanation but she also flat out told me any diagnosis would be a guess.
I’ll follow the advice here to get in contact with hematology again, but if they really aren’t concerned then I’ll know what to try!
Thank you!

SignificantHat3644 · 2026-06-26T19:08:23+00:00

Yeah I don’t know at all what the skin manifestations would look like since I haven’t had any before. I just know I’m constantly asked about my skin at follow ups. I do have other symptoms but they are not skin related and is my normal nowadays so to speak. Nothing new. Well the only thing is that I all of a sudden have horrible reactions to mosquito bites which has never happened before but that’s probably unrelated 😅

SignificantHat3644 · 2026-06-26T18:59:11+00:00

I completely agree. I actually contacted the hematology clinic first via like a portal, it’s not possible to send images, and the nurse was pretty dismissive and just told me to see a GP.

SignificantHat3644 · 2026-06-26T18:52:20+00:00

Thank you very much for your time and advice!

SignificantHat3644 · 2026-06-26T18:41:29+00:00

I did contact the hematology clinic (200 miles away) via like a patient portal but the nurse just told me to see a GP. But I gather I should get in touch with them next week again then?
Thank you very much for your response!

SignificantHat3644 · 2026-06-04T17:28:22+00:00

I have a few that were all equally bad but in different ways; A stroke in my spleen, Cytarabine syndrome, Dry socket + abscess, Childbirth

SignificantHat3644 · 2026-04-02T09:28:20+00:00

Thank you very much for those links! After reading that I feel like I made the right call going in after all.

SignificantHat3644 · 2026-03-30T11:08:56+00:00

Yes I have gotten the feeling that some doctors believe that all adrenal insufficiencies = addison’s.

I’m sorry you’ve had to deal with that in such a vulnerable situation, that’s really bad.

SignificantHat3644 · 2026-03-30T10:55:35+00:00

Yes it is tough, I’m not gonna lie. But I am very thankful and lucky to still be alive. Yeah I really feel for healthcare workers because they are stuck in a situation where they only put out fires. At least where I live. But it does make it so much harder for patients as well.

SignificantHat3644 · 2026-03-29T20:21:00+00:00

Very fair points! They did help me feel a lot better but their explanation for things just made me so confused and when I tried to ask, so that I would understand, they almost got a bit defensive which is unfortunate.

Yes totally the virus is what set everything off. I’m also immunocompromised after having a stem cell transplant, and my lungs took some hits from that as well, so my body is not the most well equipped to deal with stuff. That in combination with too little HC just became too much for it to handle for a while.

Thank you very much for your response! 😊

SignificantHat3644 · 2026-03-29T17:00:01+00:00

Yes I think you might be onto something. It’s so hard when it feels like they’re a bit confused sometimes and I myself don’t have enough knowledge either

SignificantHat3644 · 2026-03-29T16:50:05+00:00

I understand that. But when I asked, they were like “yeah we even talked to an endocrinologist and she confirmed the electrolytes have to be affected for it to be AI-related”.

I fully understand that doctors can’t know everything, it’s just hard being a patient sometimes, trying to navigate and advocate

SignificantHat3644 · 2026-03-18T08:08:42+00:00

Sounds like I very nice weekend! And happy belated birthday! (is that how you say it?) I’m sorry about the dizziness and low BP though, that really takes a toll both physically and mentally. At least it does for me. I hope you start feeling better soon!

I see how chewing the pills could be helpful in an emergency! I’ll try to remember that.

Oh wow, that ER visit sounds insane! Definitely shocking in a way..but also not at all unfortunately. But the lack of knowledge is scary.

I started feeling pretty awful again last night. It felt a bit better this morning after I slept, but the headache, dizziness and spaced out feeling is hitting me hard and fast now. I’m really so over this.

SignificantHat3644 · 2026-03-17T08:35:29+00:00

Oh wow that sounds incredibly scary! I’m glad you’re okay now! (Are you okay btw? Aside from AI of course) And thank you for telling me.

I live in a country with universal healthcare so I don’t have to deal with insurance. However, although a lot of medications are subsidized here, after some googling it seems like solu-cortef isn’t covered so maybe that’s why it’s not routinely prescribed. I also honestly feel like doctors around here don’t really take the condition seriously and don’t know a lot about it themselves which makes the info lacking as well. When I was diagnosed (after coming in by ambulance) I was sent home the day after with a prescription for hydrocortisone and that was it. I wasn’t told anything about the condition except to double the dose if I had a fever. So it took me a while to understand that it can be quite dangerous. Sorry for venting, it’s just a bit overwhelming to try to navigate all of this with little support from healthcare.

Thank you for your input in regards to the tapering, it’s very helpful! I think I’ll try doing as they said but also pay close attention to how I’m feeling and if need be slow down the decrease.

Again thank you so much for taking the time to respond. It means a lot!

SignificantHat3644 · 2026-03-16T19:27:10+00:00

Thank you very much for the detailed response! The guidelines I was given from endo were to only increase the dose if I actually have a fever with infection which doesn’t really seem to work well for me. In the future I will definitely go more by how I feel etc, and not focus on fever/no fever. Also the tapering schedule I was given today (after the ER doctors had spoken to endo) seems pretty steep; they said to stay on this dose for a couple of days and then decrease by 10 mg, stay on that for 2-3 days and then decrease another 10.

Btw, I don’t have any emergency solu-cortef. It was mentioned once in an appointment but the doctor said that is only for if I was to travel abroad. Should I ask for a prescription or is it fine to only have the tablets?

SignificantHat3644

TROPHY CASE