2mg and fatigue and nausea

[Maggie1313]

hello again all but can anyone give me advice on what I’m suffering is normal. I’m sitting at 2mg now and it’s 5weeks since I started the reduction. I take my tablets @ 8am in morning have my porridge etc and by 10am I am spaced out with extreme fatigue and nausea and I mean extreme fatigue like I can hardly walk back to my bedroom, and stays most of day it’s like I am drunk or doped ( by the way I don’t drink ). My daughter makes my food and I eat it even with the nausea as I don’t want to lose any more weight.

Had to go to opticians on Wednesday as eyes got so sore and I panicked he said it is dry eyes give me gel and now to bad now . Could it be that that the coated tablets could be doing this to me or is the 2 wee walnuts having trouble kicking in again . I have been feeling this for the last 5wks , will it get easer as I reduced down, the Dr told my daughter I need to get of them as soon as possible as having an adverse reaction to them (easy for him now to say that )😱

Can anyone tell me how long it takes for the coated tablet to work and how long for the plain one .

sorry for long message but just need reassurance again that I’m not slowing going mad 🙏

[DorsetLady PMRGCAuk volunteer]

I don’t the issue is necessary with the tablets more likely to be adrenals as we discussed in your previous posts- and I did give you a link about them.

Plain tablets take about an hour to get into the system, whereas coated ones take about four.

As for doctors comments, rubbish… if your adrenals are struggling then you need to taper very slowly….and for a start maybe offer you a basal cortisol blood test to check if your adrenals are actually capable of working…

[piglette]

If your adrenals are not happy at having to work again they can knock you out cold. I would sit in my chair and have trouble lifting my arm up to scratch my nose even.

[PMRpro Ambassador]

It is absolutely typical symptoms of adrenal insufficiency and there have been a few posts about that this week - including someone ending up in hospital which is exactly what will happen to you if your doctor insists on you tapering any further at present. You are not having an adverse reaction to the pred - you are having an adverse reaction to not enough pred.

The coated tablet takes about 4 hours to get into your system, the plain ones about an hour.

healthunlocked.com/pmrgcauk...

Is your daughter with you or are you on your own? It is the weekend now so if you feel any worse please call 111 and tell them this is probably adrenal insufficiency and getting worse, It would be better if you weren't alone and do please show your daughter these replies including the link I gave you.

I don't want to sound dramatic but we really don't want to hear of another collapse on Monday!!!!!

[SnazzyD]

If your adrenal glands aren’t yet working properly, you are starting the day on very low when your cortisol should be nicely up. Then you pop a coated Pred and you stay on empty for hours more because coated doesn’t reach peak for some 4-5 hours. With uncoated Pred I could feel better after 1-2 hours. It can feel horrendous and like you’ll never be right again if your cortisol is low. piglette isn’t exaggerating. It took me months to get better and whilst you need to ride it out to keep reminding the body to make its own cortisol, it’s a fine line to cross to adrenal crisis. I am not sure why your doctor thinks it’s the Pred now you have got all the way to 2mg instead of checking your cortisol first.

[RT18]

take care Maggie1313 Be especially careful if u have any other illness / stress, faint or start to vomit or have diarrhoea. Make sure u follow sick day rules.

my mum was fine at 5am, vomit & v high temp at 9am and unconscious at 1330 - remained that way for 2 hrs & only improved at administering of hydrocortisone having had full adrenal crisis. I was shocked at how quickly it happened and didn’t give me time to fully comprehend what was happening.

make sure ur daughter knows to say adrenal crisis - goodness knows what would have happened to my mum if I hadn’t suggested to paramedics they try the hydrocortisone.

I don’t wish to alarm you, but something clearly isn’t right for you. Can u take the pred earlier so it kicks in before u start the days activities?

The balance between persisting thru the low doses to awaken the adrenals and staying safe seems a tricky line - sadly not helped by lack of awareness of health professionals. I’m thankful for the wise advise and education here which gave me the heads up.

[Maggie1313 in reply to RT18]

Thank you so much RT18

[Karendeena in reply to RT18]

I tapered too quickly at one time. My GP wanted me off prednisolone because of the affects on my mental health. She had me reduce quickly and once I got down to 10mg she took me down by 1mg every two weeks. Although you might not think this is too fast I wasn't prepared for the consequences, nausea, palpitations, weakness and my weight was dropping really quickly. I felt so poorly. Went to see a rheumatologist and he put me back up to 5mg and then I reduced by 1mg every 2 months. I am going slower than that reducing by half mg. I am now down to 1.5 not going there again, I felt awful

[Maggie1313 in reply to Karendeena]

thank you Karendeena 💐

[Karendeena in reply to Maggie1313]

Forgot to say once the taper begins at a much slower pace, the body stabilises. I felt much better and for me things have improved. I was so ill I even had a CT colonoscopy as I convinced myself I had pancreatic cancer as I suffered diarrhoea as well

[Maggie1313]

thank you 🌸

[Wizards]

Maggie I've been were you are and I actually wrote my sister saying think I'm dieing.This is no joke. Symptoms of adrenal crisis: loss of weight, vomiting, please look up. You literally can be dead in 24 hrs .

My Endicronologist pushed me to get off and my # was 24 barely functioning at 2mg.

If I had to do it over I'd stay at 3mg were I was still extremely tired but functioning and sit and wait for months if need be.

Everyone is right, you must tell your daughter. My husband knew and what to say.

Good luck.

[Zareda]

It took me almost 7 months to get off of 1mg and I felt the same exact way. I’m now off all steroids and that feeling is slowly easing. The rheumatologist told me it’s a combination of the adrenals being sluggish and my body physically withdrawing from the prednisone that I was on for 4 years. It’s a matter of how much discomfort you can stand without increasing the dosage. I hope things get better for you but it certainly is a struggle!

[Maggie1313 in reply to Zareda]

thank you 💐

[Ruthie_64]

If it is adrenal insufficiency which it sounds like, the coated tablets are no good for you (they take 4 hours to start working which is you feel so bad by 10am) unless you take at bedtime for sufficient cover overnight. You need normal tablets as they kick in after 30-60mins. Also for adrenal insufficiency no less than 3-4mg is recommended. I have sai due to long term steroids. I actually take 10mg split 4x daily to cover all my conditions. I probably won't get lower than 7.5mg tbh. If you're really struggling then I'd go back up to 4mg and maybe split either 3mg am and 1mg pm. Also take your morning dose an hour before you get up. I have an alarm set for 6am, take 5mg then go back to sleep til 7.30. Either way you need to get your cortisol levels checked.

[Maggie1313 in reply to Ruthie_64]

thank you 💐

[PMRnewbie2017]

At low doses i venture to suggest you shouldn't need enteric coated Pred. Try and get a supply of 2.5mg and 1mg uncoated tablets. Once you get past this stage you will need them as you might have to reduce by as little as 1/4 mg. Carry a steroid warning card and don't leave home without a few tablets in case of emergency. Perhaps consider taking the uncoated Pred at 7am. Then it can supplement but not override any natural cortisol you produce.

[Maggie1313 in reply to PMRnewbie2017]

thank you 💐