Feeling horrible after been on the steroid prednisone

Hello!

I was starting to get back into the groove but unfortunately hit some setbacks recently. Hoping it's all very temporary like some of the other symptoms I had

I dropped a lot of weight that I couldn't afford to lose when I was prednisone. Luckily I stabilized it right after I got off the medicine, but recently started dropping more weight sporadically. 

Also, my blood sugar is all screwed up. In all my yearly physicals I tested in normal range and all of a sudden now I'm getting readings in high prediabetic ranges. I started lowering carbs but added more calories for the weight issue and this has helped blood sugar get back down closer to normal. Blood pressure is also high which is a first for me.

My sleep is still screwed up. I thought it was improving last week but then hit a plateau and has returned to not great. I've started waking up multiple times at night again and have fast heart rate and my blood sugar jumps up when I do wake up.

It could all be unrelated to the prednisone but, as far as my Dr can tell, I was perfectly healthy in all my physicals and felt good and after the prednisone my blood work is not so good and I feel not so good. We're still hopeful it's all going to normalize soon. I think exercising was really helping me, but unfortunately I have been unable to exercise since I just feel terrible last few days.

I'm trying to stay positive! I'll check back in when I notice any changes.

That's great I hope all goes well for you.

Hey! Was wondering how everything went ? What your doctor said?

My update: went to the endocrinologist, high cortisol, low DHEAS, almost low ACTH. Lower sugar . She was confused . Said to stop taking any vitamins and supplement a and we will redo the labs. So weird... my muscles are still very tight and contract , little worry cause the whole chain of reactions. Today had an enxiety attack and the middle of the street. When it will end ?( next week I’m going to see neurologist. I’m not myself anymore , it’s so depressing . Let’s keep hanging in there. Just want to check how everyone is

My MRI came back perfect. The nausea is associated with a concussion from an accident that happened in December. Surgery may be the answer to fixing the ear crystal problem that comes with a concussion. Driving, flying, boats etc will be an issue that I can choose to live with or risk some hearing loss from the surgery. The cluster headaches can be from a lot factors, stress and tension being most common. My memory and cognitive functions will eventually get better and being that this happened months after the accident, this may come again and I may have suffered this attack before with mild symptoms. Vitamins and natural supplements are best for me unless I go through severe headaches and migraines. The initial symptoms happened a week after taking the meds. 

Hi,

Everything checked out ok, which I knew it would. She still doesnt think my symptoms are from the prednisone, but wtf whatever. I have zero faith in doctors pretty much. I seem to be having more good days then bad now, so maybe its starting to let up. Thank god for benadryl , it has got me through the worst of this. Still not sleeping that great but its better then being deathly sick. Been 3 weeks today for me since I got off that stuff.

That’s good! Good dynamic!

On 30th will be 2 months of me on recovery.  Also melatonin helps me with sleep and yoga ( not sure if you are into that stuff lol). I’ll let you guys know what neurologist has to say and how my blood test will turn out , but now I also do have more good than bad ! Keep fighting 💪🏻💪🏻

Good that MRI is perfect! Hopefully everything will go back to normal for you pretty soon and if you do choose surgery it will go perfect too!

Hello! Thanks all for updating. It's so nice to have this support group

Karina - I remember reading a while back that somebody had similar test results. I recall she worked closely with naturopathy Dr and was taking Phosphatidylserine & Banaba to reduce the cortisol, which worked for her. She did say that you shouldn't just take it without guidance but, from my research, it is naturally found in some foods. I have no idea if it's safe or not, but this lady swore by it.

I'm lucky I have most of my brain and emotions back, but I'm still trying to do more meditation and especially diaphragm breathing. I think the whole ordeal has my body tired and stressed, along with obviously being out of homeostasis.

I had to go to urgent care that day because I literally could not talk or swallow. I was hoping it was some kind of infection but unfortunately the Dr was pretty set on it being silent reflux from the prednisone. I've done a lot of research and it seems to be a very bad thing. I'm hoping it dissipates on its own because there doesn't seem to be much hope out there in the medical community. It's making day and night pretty miserable but I'll give it another week before I talk to someone else. At that point, they'll prescribe PPI's which I'm deadset against, so I'm trying to find some other "miracle." If I could get rid of this throat thing, I would be very happy at this point; I can manage the other side effects I still have...Just hoping and praying it goes away and finally nothing new comes!

The anxiety part is the worst! Just know that you are not alone and it is not you, it's the medicine. We're all here for you. Although this all sucks, having done so much stupid research in the last month, there are many many people that have lived with such terrifying diseases and illnesses for their entire life. I definitely have a new perspective in my life and I am happy to be alive. I shouldn't complain.

Ha! That's funny. Every Dr. I see tells me, yep that's from prednisone. I can't believe so many Dr's are in denial. My sleep is all screwed up too. It must be from circadian rhythm being screwed up but can't figure how to get it back! Crazy. More good days than bad is a good trend. Keep doing what you're doing!

Hi karina, I dont get it at all why most of us with short burst prednisone blood work results seem to be fine. I checked once and my cortisol is so high. what's going on in here shouldn't the pred suppressed our cortisol? or we didn't on it long enough and we didn't tapered down slowly. so confused.

Hello. Did the throat thing eventually ho away? After how long did it go away?

what throat thing?

how are u feeling now

The silent reflux he @Macd279 mentioned on one of his posts.

yes I have that as well

Is your side effects getting better over past 2 weeks?

they have been coming and going had a hole week of hell . and the stomach problem is back major hart burn .

Something to consider, I did some reading and the drug is lipophilic, meaning that it's stored in fat cells. Obesity can prolong the time it takes for it to leave the body. I had gained some weight but started losing it a month ago, and the progress seems to be going faster although I get short bursts of side effects which might be because it's being released from the fat cells as I lose weight.

sounds right . i have noticed when i work out side and sweat i get side effects again . but if i just lay around house i feel ok . this sucks

That's because exercise releases stress hormone cortisol, and prednisone is a synthetic form of cortisol. I get more side effects just from going for a walk. But I found something that works if I get side effects in evening, I take melatonin which is a natural sleep aid. It makes you tired and also lowers cortisol, so side effects go down within half an hour.

how are u guys doing i was doing pretty good tell tonight having bad anxity have not had a night like this in a long time

I had a big spike 2 weeks ago and the side effects felt as strong as a year ago, I couldn't believe it. It was temporary though because now it's getting back to baseline and I feel almost normal. I don't know how its possible for it to keep coming back but each time the "spikes" get shorter and less intense after a few days.

same here im so lost had a bad spike the other day now my hole body hurts feels like i was working out for hours . im so over this crap it sucks and every doctor call me crazy . i bet 90% of doctors them self wont take them the way they hand them out like candy seems life they have no regard to lifes just how muchbis going in bank .

Yeh I just think of it like each day that goes by is one day closer to the end, and I'm never going to take a pharma drug against after this. The muscle weakness went away for me completely though around 1-year mark.

im 2 months from the 1 year mark ughhh cant wait . to get over this crap !

I might have found the actual cure. I'll report back in 2 days because I don't want to get too optimistic, but this might be the biggest game changer.

Holy crap this might be too good to be true. I'll just share what I found out. I wanted to understand how the drug can still be in the body after so long, and I found out it's stored in fat cells but that still doesn't explain why I still have so many side effects after losing weight.

After doing some more reading I found out corticosteroids go through enterohepatic circulation, which means that unlike most drugs which go from the blood to liver to intestine and are then removed from the body through feces and urine, enterohepatic circulation means it can be REABSORBED back into the blood from the intestine. The drug is literally being recycled over and over again in our bodies, which is why it keeps going active again and again.

After doing more reading I found out that hospitals use something called Activated Charcoal for drug overdose and poisoning. It works by binding to things in the stomach, preventing it from being absorbed. So it can bind to drugs and poisons in the intestine before they are absorbed into the bloodstream. It speeds up the rate that this stuff is removed from the body. Then I found a study showing that Activated Charcoal reduces the side effects of corticosteroids taken by inhaler for asthma.

I just received the capsules a few hours ago in the mail, I took 5 grams on an empty stomach and I started feeling better within an hour. This might be too good to be true so I'll wait a few days and see how it works, but if it does this information is too important not to share.

Day 2 of activated charcoal, I took my second dose a few hours ago, and the drug side effects now already feel much weaker now than 2 days ago. The only side effects from charcoal I've noticed so far is dry mouth and a bit of a headache because I didn't drink enough water, it can dehydrate the body. I think this is the real deal.

Warning: taking activated charcoal on an empty stomach caused diarrhea for me. This is my new regimen:

I've been experimenting with different doses and frequency, because the cortisone is constantly circulating from the blood to the liver to the small intestine a little bit at a time. I'm taking activated charcoal in capsule form. You're also going to need oats or oat-based high fiber cereal. It's high in soluble fiber, prevents diarrhea and constipation from the charcoal, and it acts as a sponge to soak up both the charcoal and cortisone so the drug can be neutralized.

This is the regimen:

-When you wake up take 1g of activated charcoal. Immediately eat a very small bowl of oats or oat cereal. Do this every hour for the next 6-8 hours.

-You need to drink a lot of water to prevent dehydration and constipation from the charcoal.

-Take a multivitamin at night because the charcoal also depletes vitamins from the body. If you take any medication take it at night also as far away from the charcoal because it also interferes with it.

-Start with a smaller dose to see how much your body can handle. I may increase the dose of charcoal in the future.

-I also experimented taking the charcoal on an empty stomach every hour. It worked quite well except this causes diarrhea.

-Last point, either use water or a very small amount of milk with the oats. I read that milk can reduce the effectiveness of the activated charcoal.

Don't expect an overnight cure. The cortisone is spread throughout all the fat tissue and blood in your body. It takes time for it all to circulate through the liver and small intestine where the charcoal can bind to it before it's reabsorbed into the blood.

Also, please report back on how it worked for you. I'm seeing huge improvement.

Thanks for sharing this information. Are you still feeling better with the use of the activated Charcoal?

Yes I notice the side effects start going down within 20 minutes after taking the activated charcoal. Yesterday I was able to keep the side effects away almost all day long by taking it every hour with oats, and then a few hours after my last dose the side effects of the drug started coming back pretty strong. I think the charcoal is going to reduce the total time left from years to a few weeks or months.

Also a warning I forgot to add, the activated charcoal can reduce the effectiveness of any medication you're taking. It's best to take medication as far away from the charcoal as possible, either a few hours before first dose before or 5 hours after last dose.