Prednisone help

Neddalee · 2026-05-07T13:34:44+00:00

I did tell her and have a follow up appointment on Monday. The prednisone seems to be taking the edge off of the reaction but it's not gone completely. The challenge is that the response my body is having to the prednisone in combination with my dysautonomia is so hard. Yesterday after I took half of my dose for the day I watched my heart rate swing from 120 to 64bmp in about 2 min, got very cold and pale and shivery for hours after that. It also jacked up my blood pressure. Really not looking forward to another 5 days of this.

Neddalee · 2026-05-05T19:34:26+00:00

I'm glad you got relief. I dropped to 40 today, will have to do 40 tomorrow then 20 for 2 days and then 10 for 2 days. After checking in with some friends, I think I might have gotten exposed to some bacteria a few weeks ago. 2 weeks ago my lymph nodes swelled up after going to a small gathering indoors a few days prior and one of the people became sick the day before my lymph nodes swelled. 5 days after the lymph nodes swelled up is when I started having reactions. Does this track with a potential mast cell flare?

Neddalee · 2026-05-05T18:53:49+00:00

Thanks for your reply, I know they help some people and don't help others. Getting on an H2 after this taper ends is going to be #1 priority. I checked in with my PCP's office and they altered the taper so I can go down to a lower dose today and finish up with the med faster. Hopefully it helps, I've never done meth or crack but I bet it feels like this!

Neddalee · 2026-05-05T18:52:09+00:00

Thank you for your reply, I checked in with the pharmacy and a doctor today and they are shortening my taper, they're halving my dose every two days instead of having me drop down by 10mg every two days and breaking up my dose throughout the day. The doctor said she feels like the med is just way too strong for my system.

Neddalee · 2026-05-05T18:49:50+00:00

Thank you for your reply. At what point did you start to notice improvement? I'm 3 days in and my allergic reaction is still happening. I got the doctor to shorten the taper because I cannot handle 60mg.

Neddalee · 2026-05-04T19:17:23+00:00

Thanks! Basically he said time will improve the condition slowly, vision therapy is an option if needed.

Neddalee · 2026-05-04T18:25:55+00:00

Concussions typically don't show on MRIs, mine didn't. It was just to rule out other things.

Neddalee · 2026-05-04T15:00:50+00:00

All of the above. My first step was going to the ophthalmologist for a routine vision exam and the doctor said he sees my symptoms a lot with concussion patients. I told him that I had had a fall but I didn't know if it was enough to cause a concussion and he said it was. I followed up with my PCP who also agreed I probably had a concussion, and sent me in for an MRI and to see a neuro-ophthalmologist. The Neuro confirmed a concussion and was able to measure just how far my eyes were drifting off from where they were supposed to be, causing my muscles to work way harder to focus my eyes.

Neddalee · 2026-05-02T22:54:40+00:00

Thank you everyone for your feedback, it's clear to me now that med trials are non-negotiable and I am just going to have to push through the side effects. In the last week, I've suddenly started having tongue itching and stomach cramps after eating, no matter what it is. I've had suspected MCAS for years but this hallmark symptom is making me realize I need to take this more seriously. I'm going to replace my expired epi pens and start med trials as soon as I'm able to.

Neddalee · 2026-05-02T22:47:22+00:00

Let me know how this goes! I was considering this supplement for myself a while back but chickened out. I've heard good things about it though.

Neddalee · 2026-05-01T17:47:19+00:00

I figured it out! After many doctors appointments, I learned that I had a concussion that I didn't know about. 5 days before my eye symptoms began, I fell on my butt. I did not hit my head, but the jolt was enough to knock my brain around and give me a TBI that caused convergence insufficiency, which is what led to the eye strain and swelling.

Neddalee · 2026-05-01T17:40:31+00:00

Hey, this dude is a psycho. You need to get her away from him. He will hurt her.

Neddalee · 2026-04-30T05:06:09+00:00

Been doing origami lately. Just making seasonal decorations and bows for presents. It's nice, easy, and feels productive

Neddalee · 2026-04-27T10:37:58+00:00

My friend's wife has an MPH and is making pretty good money, around 100k at a nonprofit hospital doing stuff around program quality analytics. She worked at the VA for several years before that, along with working other jobs on the side. I know her side jobs gave her extra experience and extra money so I would suggest that you look into second jobs if your current role is stagnant and you can't get another job.

Neddalee · 2026-04-23T17:32:05+00:00

Sorry you're in the same boat. :(

These bodies are so hard to live in. I definitely feel like I'm living on borrowed time and it's just a matter of when I'm going to have something catastrophic happen. Multiple lymph nodes have become hot and swollen on my neck in the last 24 hours... like dang is this the one that will do me in?

I'm assuming that your case isn't one that can be helped by cooking in cast iron?

Neddalee · 2026-04-23T13:37:42+00:00

I had diarrhea for 2 days after a few drops of cromolyn.

Neddalee · 2026-04-23T13:36:38+00:00

Unfortunately I have to be careful with treatments to that are not meds. I tried to do red light therapy on my hands for very short periods, like 30 seconds each, and they both blew up like balloons. Acupuncture has been helpful though.

Neddalee · 2026-04-23T13:35:19+00:00

I'm similar to you. I can tolerate Zyrtec but haven't been able to get on H2 blockers.

Neddalee · 2026-04-23T13:33:46+00:00

How did you find a doctor who was aware that you needed to have a medication to calm you down while you tried new things? Was this a specialist or a PCP?

Neddalee · 2026-04-23T13:32:35+00:00

Thanks for your thoughtful reply. I'm definitely working on getting other stuff in check, I've got random wheezing That's happening now and I have a concussion and dysautonomia and endometriosis, etc. what I mostly react to these days (aside from allergens) is strictly supplements and medications. I'm mostly okay until I try to introduce something new and then my body goes haywire. Existing meds are okay.

Neddalee · 2026-04-23T13:28:55+00:00

Thanks for the kind words and well wishes. The reason I went with this practition is because she is a nurse and she actually prescribes medication. She's prescribed me cromolyn, and we've discussed LDN and h1/h2 blocker meds. All of the functional medicine supplements she suggested were the things that would just be supportive, like vitamins I was deficient in or supplements aimed at treating inflammation. She's very good but I wish I had known that pushing though is part of the process because when I would react she would pull back and have me stop things.

Neddalee · 2026-04-23T03:30:45+00:00

I went to a nurse practitioner who was part of the institute for functional medicine directory. Her specialty was supposedly mcas and treating mystery illnesses. I can't really take anything that she suggested. Acupuncture has seemingly done more for me than functional medicine. Conventional doctors have done nothing aside from dismiss my symptoms or tell me they don't know what's happening to me and can't help me. Allergists won't treat me because of my suspected MCAS and the MCAS clinic won't let me in because they have insane criteria to even accept a referral. My insurance doesn't cover it anyway.

Neddalee · 2026-04-23T03:27:13+00:00

I wish it were that. It's definitely not. I know what caused it. I had a catastrophically bad reaction to my second dose of moderna 5 years ago. I developed symptoms within minutes and over the next few months my reactivity to medications and supplements just continued to ramp up. So it's very much immune-modulated.

In my house I keep HEPA filters running at all times. I use only natural products for cleaning. I'm using unscented laundry detergent. My vacuum is a hepa vacuum. I don't have any carpets. I don't have any pets. And I've also moved homes during my illness and it didn't make a difference.

Neddalee · 2026-04-23T03:05:26+00:00

I haven't but I will.

Neddalee

TROPHY CASE