Stopping cold turkey on prednisone I’m so sorry for not mentioning

[Hali12]

Hello everyone

I’m just wondering with all the problems that I have been having with this prednisone headache body ache. Is it at boils down to me maybe. I stop taking the prednisone all in all. I had stopped it a day before seeing the surgeon after the postoperative appointment. Could that be the MY MAIN REASONS for all the pains. I’m just so tired out with all of the prednisone. PLEASE HELP ME EXPLAIN THIS TO ME. I TRULY HATE PREDNISONE. 🤕🤕🤕🤕😔😔😔😔Again I want to apologize to you all for not letting know that. Please anyone thinks that I should leave this group let me and I will. Again my deepest sorry

[SnazzyD]

Ah, well this is encouraging! If your symptoms have worsened since then, it probably is the lack of Pred. What I would urge you to do is restart, PLEASE. There are two reasons for this: 1. You are risking blindness because nothing is stopping the inflammation. 2. Pred in large doses switches off your adrenal glands which supply your stress coping hormone cortisol. It can be dangerous to stop Pred without decreasing slowly.

I can understand your hating this. All of us who started on high does hated it and in the early weeks before your body gets more used to it, it can feel like you are out of control. The Pred makes ones thoughts run out of control along with anxiety and lack of sleep. It does get better; you have to hold on to that thought. Talk to everybody on here if you feel overwhelmed.

[Rugger]

Hali12, you really must let your doctor know what you've just told us.

You do need a diagnosis, we understand that, but at the moment they are assuming you have GCA and this can affect your vision amongst other things, so you do need the prednisone to reduce the inflammation in your arteries - if that is what is causing your pain.

PMRpro has explained that a negative biopsy doesn't mean you don't have GCA. It just means they didn't see it in the sample they took.

PLEASE speak to your doctor today - before the MRI tomorrow.

High doses of pred do cause all kinds of side effects, but without it, you could lose your eyesight. You will not be on the high dose for ever. Once the inflammation is under control, you will start to taper the dose down to a level that is low enough to control your symptoms.

PLEASE stick with us - there are many on this site who have been in the same position and have come or are coming through and they will surely be able to add in their words of encouragement to you.

This forum is a lifeline for many of us and we learn such a lot from each other.

I wouldn't ask you to leave the group and I don't believe the others will, either, but you must help yourself at this stage by doing what your doctor has advised.

Take care. x

[Hidden]

Hi - please don't disappear from the group. It sounds like a diagnosis is revealing itself if all the symptoms are not fully controlled by the pred you were taking as your previous posts suggest. Please don't just stop treatment yourself as it muddies the waters. I have read lots of GCA sufferers on here struggling with the diagnosis and treatment and have seen them get better as the treatment evolves. If it is a vasculitis effecting your upper body then you need to take the pred to stop any further damage. Please speak to your Dr. Maybe a higher dose is needed which sounds counter intuitive but don't forget that the illness you have will be causing a lot of the symptoms...not just the pred. I hope you can move forward a little bit today. Baby steps I am afraid. My very best wishes and please stay in touch 🌻🌻🌻

[jinasc]

You need to go to your GP as an emergency, stopping pred can and does cause and adrenal crisis and you need to see medical people fast and that means today.

[Hidden]

Ohhhhh Hali12, I can hear the desperation in your voice... and so wish there was something I could do. I have been where you are! Lost, in pain and plenty scared! The last thing you need to do is leave this group! Stick with us and follow the good advice from the site "experts." Things get better, I promise, I am living proof of that! There were so many times I wanted to quit, and run away... but thanks to the amazing people on this site, I didn't. I trusted that things WOULD get better and I persevered though the horrible, debilitating side effects, disease and withdrawal symptoms and you will too! The Pred makes you crazy, not yourself! Don't trust yourself while under it's influence. This too shall pass. Try to relax and rest. Try getting outside of yourself and into something... An art project, an interesting or just mind numbing series on TV, music, a book.. try RANTING! Pour out ALL your thoughts and fears onto paper (or a screen), it does wonders for me!!!

Hang in there, we all have your back.

[SheffieldJane]

Don’t be daft Hali12. You tried what crosses all of our minds at least once. For now Prednisalone, as imperfect as it is, is all we have. It stands between us and real disability. What you really want is to cast off feeling terrible. That is something that will take time, real patience and acceptance. I am grateful not to have other diseases that initially, I thought this was. I truly believe that I will get better and so will you.

No more striking out on your own you noodle! Keep the doctor informed and stick closely to us until things are back on a even keel.

[PMRpro Ambassador]

What dose were you on? If it was more than 1 or 2 mg you MUST NOT STOP TAKING CORTICOSTEROIDS SUDDENLY. It can make you very ill. You must taper the dose, it can be fairly speedy if you do not really need to the pred for GCA or another condition but you MUST taper.

If you stopped taking high dose pred suddenly, no wonder you have headaches and feel bad.

None of us LIKES taking steroids - but we are taking them for a very good reason as the others have already explained. There are a lot worse things we could have and a lot worse drugs - but it will pass and things will get better.

[Hali12 in reply to PMRpro]

I was on 50mg. I really don’t want them to increase the dose. But at the same token want to be myself again.

[Grants148]

I agree with the previous posts Hali,it is very important to taper the steroids down slowly.

[piglette]

Hi Hali, you are on a pretty high pred dose, so things can only get better as you reduce. Most people do get side effects and some more than others. On the other hand not taking them could be a lot worse. Keep with it you will look back at all this on day and laugh!1

[karools16]

Wow! I can't believe my eyes. You say you have gone from 50mg to o? I am surprised you are not seriously ill. Take what jinasc has written, to heart, and see somebody NOW. Yes, Pred gets to all of us, but it keeps us GOING.This wonderful forum will give you incredible help and encouragement. Show the site to your husband.Sending you a big hug. x