Can’t catch a break

I feel like writing on here is like my therapy since I am just so sad and defeated. I’ve only been off prednisone for 8 or 9 days but now have to go back on it for a long time. I have been feeling really bad since I dropped below 10 mg. Just a lot of symptoms but not GI related thankfully. Turns out my adrenal glands have not woken up so I have adrenal insufficiency. My doctor wants me back on 15 mg since I am really a mess right now and tapering 1 mg every 2 weeks. I don’t even want to think about how long I will be on it again. I just can’t stop crying and shaking. I feel like my body is in a detox it doesn’t want to be in. I have been extremely manic, suicidal and awake for a very long time at this point. I just wanted to update you guys and also say that I hate prednisone so much for what it does to my body. I wish they would research/fund better treatments for us but instead we still have prednisone that just destroys the mind and body. I am just so fed up with suffering and being miserable.

I do have one straydog since all of my osteoporosis and hormone issues from prednisone last time. She is very helpful. I will schedule one with her too. I have an appt with my pcp coming up as well. I don’t feel like myself at all. I would even take a psych med at the moment just to get over this insane feeling in my brain.

Oh no, I am so sorry to hear this!! I think of you often, Bacon Girl. I have no advice to give, but maybe in your low moments you can think of us who are thinking of you and sending virtual hugs. I know that can help me, so I hope it helps you too.

My other reaction is.... this just strengthens my resolve to avoid Prednisone at (nearly) all costs!! That is serious stuff, and both my GI & family doctor refer to it so casually.

Thanks you guys. You all make me feel so much better! I totally forgot to mention that I got a raging vaginal yeast infection last week which I always get from prednisone. It is usually accompanied with oral thrush but I didn’t get that (yet). I figured I would be able to deal with that alone but now having to be back on pred, I will just be a pile of yeast at this point. Probably need a lifelong difflucan prescription. I am also concerned since I had prediabetes the entire time I’ve been on prednisone. I was hoping to repair that being off of it.

I am so sorry you're feeling down. I totally know the feeling when you're hoping to get off the evil pred and things don't go your way. Yeast is the worst too, especially with pred or antibiotics. I used to use boric acid supps to put an end to it. Keep your chin up, there are so many medical options now. You will find something that works, get off pred, and be back to yourself before you know it. You should see someone for the mental anguish. I always felt incredibly down while on pred.

I remember after my first hospitalization that I was in REALLY bad shape. I visited my GI and my hands wouldn't stop shaking, headaches, emotional and sleep deprivation. After my visit, he took me to his office, asked me to sit down, and said he wanted to find one of his doctor friend's numbers - his friend specialized in treating athletes/bodybuilders who were going through withdrawal. He rang him up, told him my case, and symptoms, and my GI wrote the script himself. I was on Dexamethasone that night. I didn't have to wait for an office visit two to four weeks away with an endocrinologist. Dexamethasone did the trick for me without all of the effects of Prednisone.

So sorry you are going thru this.

Your adrenals will wake up. It will take some time, but an endocrinologist knows how to do it. At some level you will switch over to hydrocortisol which is in your system for a shorter period of time so easier to regulate. My husband had same issue and it unfortunately will take some time to wean off prednisone, but you will get there.

So sorry you're going through this BG, we all know the evils of prednisone but you seem to be catching the worst of it. Try to breathe, deep breathing, it really helps. Maybe try some cannibis products? Vent away, you have a group here that knows exactly what you're going through.
This will pass, until then, sending good thoughts your way.

BG...hope your endo will help get you on a different tapering schedule for the pred. I've read a lot about alternating tapers...something for you to ask about and consider. It's supposed to help kick 8n the adrenal glands, but takes a while.

Hang tough!
Hugs,
q

Bacon Girl.......I know where you head is as to prednisone.......I stay hungry all the time even at 15mg and 10mg dosage.....on my second round of prednisone now and have gained 20 pounds since May 11. I have mood swings too. I want off it so bad so hoping the infusions kick-in and thus far has not yet. Praying that pred. ends when the prescription ends on July 7 are I'll be buying a complete new wardrobe.

Hey guys. I am wondering if any of you are well versed with medicare and drug coverage. My medicare starts Sept 1. I called upmc for life medicare plan to get enrolled in Part D since my GI’s office takes it and I would like to stay with them since I am on a new med right now. The guy I talked to put in all my meds and they dont cover any except for zofran. He said no way is rinvoq going to be covered and I need a generic or cheaper drug to be prescribed. As you may have guessed, I have been having an anxiety attack ever since I talked to the guy. I cannot stop rinvoq after being so sick this year and now just getting out of the hospital a few months ago. I will end up back in there really fast and for a long time if not medicated on any kind id biologic/jak. How can they just not cover a UC drug if it is what my doctor wants me on? Is there a way to get biologics covered? It’s my fourth biologic so I have failed enough to get it covered under step therapy in my state. I asked him about biologics and jak inhibitors in general and he said no coverage for them because they are Tier 5 drugs. I have had my biologics covered no problem every year on highmark and then more recently on medicaid. Anyone been through this nightmare? I am honestly so sick to my stomach about it and can’t think about anything else. The thought of getting so sick again because they wont cover a drug for me to survive is just horrible.

I don’t know anything about the Medicare advantage plans except I’ve heard they have more rules as far as which drs you can see and getting prior approvals. And I think there might be copays.

I am on regular Medicare with a plan F supplement. Medicare pays 80% and plan F picks up the other 20% so I have $0 copays on medical expenses. I don’t think plan F is available anymore but plan G may be close?

Then I have a plan D for prescription and yes coverage is not that great on “brand names”. Someone here (enjoy golf maybe? Or geezernow?) is getting rinvoq from the manufacturer. You can look them up online and find their patient assistance number and call them to see what they offer for Medicare patients. We do not qualify for copay programs. I get a migraine medication for free and my husband just started dupixent for free. Once a year you have to fill out an application then they ship 3 months worth of drugs at a time. The yearly application is kind of a hassle but once it’s done and approved you’re good for a year.

Part D: supposedly there’s going to be a yearly cap of $2000 on costs to us. In 2024 or 2025 maybe? Also there are TONS of part d plans. If you go to Medicare.gov you can enter your drugs and search for plans that might work for you. I always do that plus check with a Medicare specialist. These are not affiliated with insurance companies (at least not in CA) so they are impartial to the different plans and there’s no fee to you.

It’s very overwhelming at first but try not to stress. Search up the rinvoq threads to find that post on the manufacturer assistance.

Thanks guys. I left a message with the hospital social worker to see if she can help me with all of this. Also going to call the Rinvoq manufacturer and see if they can send me it for less. I do know Simponi’s manufacturer was amazing and sent me Simponi at no cost while I had no insurance several years ago. I just know Medicare is so limited with what kind of assistance you can get. Trying to get a hold of someone who can actually help is the hard part. I called the medicare number and the lady I got said she can’t give any opinions on plans or what plans cover Rinvoq. I told her I was asking for advice and facts on plans, not her opinion. She hung up on me! That was after being on hold forever so I officially hate them.