Adrenals?: Morning all. Can anyone tell me what... - PMRGCAuk

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Adrenals?

Suet3942
Suet3942

Morning all. Can anyone tell me what symptoms they got when reducing to less than 7mg pred. I am now on 6.5mg and keep feeling hot and a bit shaky. Also getting slight palpitations. Are these normal symptoms?

69 Replies
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Hiya, I've been shaky ever since I started on the Pred...really bad today too. If you didn't shake before you started to reduce it must the reduction that's causing it. For me no, defo the Pred. Horrible feeling isn't it ?

Anne

SnazzyD
SnazzyD in reply to Staplehurst

Trouble is, high levels cortisol in the system can cause shakes as well as at the other end when there isn’t enough.

Staplehurst
Staplehurst in reply to SnazzyD

Dreading when I get that low and experience more problems.

SnazzyD
SnazzyD in reply to Staplehurst

You might not, not everybody does, especially if you don’t rush it. Be hopeful but be aware and don’t worry about what hasn’t happened!

Staplehurst
Staplehurst in reply to SnazzyD

Very true our bodies all act differently

Luciejc
Luciejc in reply to Staplehurst

Me too! I'm on 8 mg.

Rimmy
Rimmy in reply to SnazzyD

True - you can't 'win' either way with that one (I've found) Life seems to be FULL of 'too much(es)' and/or 'not enoughs'!! 🤣 🤣 🤣

I used to feel nauseous too Sue. I think it was my system recognising low Adrenaline. It eventually led to an Endocrinologist referral. It interfered with my taper. I had to go really, really slowly. Definitely alert your Rheumatologist. Mine did right itself. Lord knows what will happen now I’ve developed GCA.

Thanks Jane. Yes I feel a bit nauseous now and then as well. Trouble is I’ve had my rheumy appt cancelled because of the virus.

They will do a telephone consultation. Mine does.

Apparently not. I would have though that would have been the way forward. Usually see a rheumy nurse as well. She cancelled and can’t get through to her on the phone. X

Then maybe talk to your GP to see if they can get access. I must say that the response I got from mine was “ Oh I don’t think you have Addisons”.

Once I got to an Endocrinologist my Adrenal system was underperforming. He wanted me to swop to Hydrocortisone, it is weaker than Pred and performs more like our natural system. In the end, I didn’t change anything and it all flickered back into life. Stop tapering until you’ve got proper medical guidance. It is a stressful time and I know you worry about your OH. These things can loom large. My guess is that you will be fine, but you’re right to be careful. X

Thanks Jane. You are a comfort. You always know what to say. Hope you're feeling ok ish. X

MrsNails
MrsNails in reply to Suet3942

That’s pretty poor Sue, my Rheumy Team said even if DrD or any of the Nurses were redeployed if you had an issue, there would be someone to take a call even if the answer had to come from a Rheumy elsewhere in the Country......

I’d try the Consultants Secretary to say you need some advice.

Cheers

Angela x

Suet3942
Suet3942 in reply to MrsNails

Thanks Angela. X

PMRpro
PMRproAmbassador in reply to Suet3942

If it is any consolation - I could never get through to the rheumy nurses! That was more than 10 years ago - couldn't blame Covid then!

bunnymom
bunnymom in reply to Suet3942

I have found ginger capsules help with nausea.

Telian
Telian in reply to bunnymom

Any kind of ginger instantly helps me with nausea - crystallised ginger, I know it’s sugar, but one works for me as does Tesco’s low calorie ginger ale. Never seen capsules where do you get them from?

Suet3942
Suet3942 in reply to Telian

I got mine from a company called Peak on eBay. They were recommended.

Telian
Telian in reply to Suet3942

Thanks I’ll try them - OH takes ginger too.

bunnymom
bunnymom in reply to Telian

I'm in the US and get mine at Wal Mart.

I think so, at least, it is for me. Definitely dodgy from 7mg, downwards. Also anxiety, not necessarily to do with the current situation. Just started slow reduction to 4.5 from 5mg., and treading very carefully.

On the other hand, it’s probably worth getting things checked.

Suet3942
Suet3942 in reply to Mrsd12f

Yes I’m anxious as well which makes me get hot.

bunnymom
bunnymom in reply to Suet3942

CBD oil, 4 or 5 drops had helped my anxiety when reducing. Currently at 5.5. I just use it when needed. A bit pricey but lasts a long time. I don't get any side effects that I can tell.

Suet3942
Suet3942 in reply to bunnymom

Thanks I’ll give it a try

Telian
Telian in reply to Suet3942

Sorry butting in- It’s all linked to the adrenals trying to kick in but takes a while and you should talk to your GP in the absence of your Rheumie appointment.

I received a paper copy of the advice on the renal insufficiency today that ‘one nil to the Arsenal’ - think that’s who sent it, put on here the other day and you should read it. It was produced by Leeds Hospital Rheumie dept but sure other areas will have it.

PMRpro
PMRproAmbassador

medicalnewstoday.com/articl...

This a pretty good explanation - the first part of the article explains why the "adrenal fatigue" so beloved by alternative practitioners isn't a real illness.

Suet3942
Suet3942 in reply to PMRpro

Thank pro.

AdoptMeow
AdoptMeow in reply to PMRpro

Thanx for that article. I purchased an ashwaganda supplement for stress relief, then decided that I probably should take it with prednisone.

AdoptMeow
AdoptMeow in reply to AdoptMeow

Meant to type 'should not take it'

DorsetLady
DorsetLadyPMRGCAuk volunteer

I just got random bouts of fatigue - seemingly for no apparent reason.

Lasted about 8-9 months during my reduction from 6mg to 3mg - 0.5mg a time.

Suet3942
Suet3942 in reply to DorsetLady

Thank you DL.

I am afraid to say nobody with PMR / GCA is normal ( physically ) so its probably not rational to expect a standard norm of reaction to treatment or withdrawal.

I am yet another abnormal ,had big trouble at 7mg going to 6.5 twice. I now believe this was my adrenals waking up.

Feeling sick and headaches shaking palpitations etc lots of fatigue.

On the third attempt to taper nothing at all happen'd at 7mg . I reduced 1/4mg a week from 7mg to my current 2.5mg without any side effects or issues except a little fatigue from time to time.

I did however have a flare and went up to 7mg it went away and I went straight back to my taper at 3mg

I have been able to do large drops like this since the third attempt to go below 7mg.

I carry an NHS medical Emergency card now to warn that I may need emergency IV steroids. My consultant finds me kind of scary. I seem to be able to move the level of steroids I take from 7 to about 2 mg or anything I like without anything happening re side effects.

But this worries my consultant as the PMR / GCA may or may not have gone away and at any time in my taper I might run out of luck and my adrenal gland may not work well enough.

I am due to have an adrenal function test as soon as I'm off the steroids

Peptink
Peptink in reply to survivalist

So, do you think the adrenal gland plays a role in developing GCA? Also, what is involved in an adrenal function test? Thanks.

You can have some adrenal function tests even at low steroid eg below 5 you don't have to be totally off them. There is a 9am cortisol blood test and also the synacthen test which shows whether your adrenals are capable of responding. You may have 2 things going on here: 1 the PMR is still active so you need a certain amount of steroids for that and 2 you may have adrenal problems now that you're at a level of Pred below the point where adrenals should be working but possibly aren't (the physiological dose) or they are working but only sluggishly.

I have been trying to taper from 7.0 mg to 6.0 for a year now by using the very slow taper schedule, i.e. .0.5 mg once a week until eventually after 6 weeks 6.5 daily.

But just like you feel very shaky, dizzy, sometimes feel nauseous in the morning. My Rheumatologist is pretty sure it's adrenal fatigue & she was about to introduce hydrocortisone to see if that helped in reducing the steroids. I had a telephone consultation a couple of months ago but she felt it would be sensible to wait until life was more normal. I have now gone back to 7.0 & I do certainly feel better at that level. So frustrating as it seems like a backward step but I think necessary for now..

Good luck.

Suet3942
Suet3942 in reply to Sho-Sho

Thanks for your reply. That’s quite a fast taper. I’m reducing every 6 weeks by 0.5mg. I knew I would probably feel fatigued but didn’t know about the shaky anxiety.

I'm only just into the '6.5mg every day' phase of a slow taper. In the stages leading up to this I felt more than usually tired on the 6.5mg days but no shaking. But I haven't had shaking/palpitations since the early days at much higher doses. Have you had these symptoms before? If not, as Staplehurst suggests it could be related to the reduction, and as Snazzy D implies, your system may not be ready for 6.5 yet. Or, of course, it could be unrelated - just a coincidence - caused by something else - maybe the anxiety you mention which may also mean that the 6.5mg isn't enough..

ChinaWuntoo
ChinaWuntoo in reply to Hildalew

Thanks for this. Just proves how helpful this site is....I have been shaky for some time but didn't realise it could be steroid treatment / adrenal problem. I am on 10mg, due for consultation with consultant in early September so will stay on 10mg at least until then, which I am happy about. I may not have thought to tell him about my shakes - but will do so now. Telephone consultations are better than nothing but you can't beet face-to-face: I have no idea what he looks like! And I need to see lips when listening to a strange voice.

I'm only on 9mg. but the minute I started with a rheumatologist, she had me start with an endocrinologist I see only every 6 months. It is a quickie appt., but I feel somewhat confident he will catch any problems ...I hope. My cortisol level is 2 right now, but they tell me the prednisone is taking care of it? So far, so good. Anticipating another taper when I see Rheumatologist in 2 weeks. It has been 2 years. Also continue the Leflunomide as she still maintains new research shows this is a better drug for those who are having bone issues, which I have with 4 stress fractures in 1 year. We'll see. I know there is controversy over this drug.

I decided once shielding not to reduce pred. Been on 6mg pred for about 5 months now, Recently have experienced chronic fatigue but only slight pains. So bad yesterday I went for a short nap after lunch - 3 hours later.... Felt slightly better. Was tempted to reduce by 1/2mg but shall stay on 6mg for now, Having taken nearly four years to get this low I don't want to blow it. Also feeling nauseous at times.

tangocharlie
tangocharlie in reply to tansy13

Sounds potentially like could be a bit of adrenal problems there with the nausea and fatigue. On 6 Pred you re just below the level when adrenals should be waking up to give out the missing cortisol that you are not getting from Pred anymore but they may not be functioning properly yet so you're lacking cortisol. If you get worse consult your doctor and query if yuo have adrenal problems

tansy13
tansy13 in reply to tangocharlie

There definately seems to be a problem area for lots of people around 6mg mark. My Rheumy said not to worry about adrenals until on 3-4mg. Presumably level adrenals kicks in varies from person to person. Apart from fatigue I have a general apathy for doing things and even eating, even though I have been buying favourite food.

tangocharlie
tangocharlie in reply to tansy13

The physiological dose is around 7 which is why I suspect a lot of people have problems getting below 7.5 barrier. I suspect problems might start then but not be so noticeable. I was OK until I got to 5 and just could not get below that. Whether that is to do with adrenals or PMR or both I don't know.

I've had adrenal problems twice now, once 3 years ago coming off Pred and second time a few months ago. The first time round, symptoms for me were sudden big weight loss - nearly a stone in a week, followed by as time went on fatigue that was different to PMR fatigue and dizziness on standing (reverse hypo-tension I think it was called). I'ts hard to describe but I just felt really really unwell, like I was dying. The second time was a few months ago when there was too long a gap between the steroid injections I have, which are now monthly but were then every 3 mnths. Similar symptoms, particularly the dizziness, nausea and inability to respond to changes in temperature eg going from warm house to outside in winter.

For what it is worth, I am down to 2.5mg. It has been a battle all the way, especially after the 8mg. level. I have come to expect fatigue after lunch time, however, sometimes it is better than at other times. The last three days I have been much more physically active than normal, although I do try to exercise and walk regularly. Surprisingly, this morning I feel extremely well. I am trying to not always expect the worse and look for it. To-day I am looking forward to an outing with my daughter, and am sure the tired old legs will manage quite well. Hope you get to feeling better. :) Additionally, I follow advice given here and reduce very slowly at half an mg. each time.

Peptink
Peptink in reply to Noosat

I hope you have a wonderful day with your daughter!

I am currently at 5mg and feel better than i have since dx in March/19. Maybe because I have GCA only, but I had a lot more troubles at the 20-30 mg level. When I reached 10 mg, started to feel good, and just felt like it was over. Have reduced from that level (10) to 4 now fairly quickly, with absolutely no effects that I know of. Blood tests are good, feel fine, weird to feel "normal" again.

Hi Suet3942

When I got below 6.5mg I started to get the symptoms you mention plus a whole body painful muscle ache I’ll call it that made me feel out of control with my body. I had to stand, when I could, to try and stabilise it. My heart felt as if it was leaping out of my chest I sweated profusely and felt dizzy. My BP rose too.

It lasted about 45 minutes each evening at the same time then left me feeling exhausted - but so relieved it had passed. I used to think what happened there! I hated that feeling when it started and couldn’t do a thing to stop it It had to do it’s party piece before subsiding.

Went on for 9 months gradually improving as I tapered - then just stopped when I got to 3mg.

I’m starting all over again for the second time around.

I had my first telephone consultation with my new consultant since moving yesterday and, after six + years of GCA / PMR, was a little nervous should she try to change what I know works for me ie quicken my taper.

My fears were unfounded, she accepted my current taper ( asked me if I was following DSNS) AND took note that I was finding it more difficult second time around tapering AND acknowledged the adrenal problems - which was a real result I thought. Result there Pro!

She asked me if I would take part in research study.......

Sounds very much like you are going through it but let your doctor know how you are feeling too. You might be able to educate him/her.....

Suet3942
Suet3942 in reply to Telian

Thanks for your reply Telian. It really helps to discuss problems.

Telian
Telian in reply to Suet3942

A problem shared as the say.

Only when I saw your photo did I realise it was you Sue? Think it was the numbers made me think it was someone else.

Stay safe

Suet3942
Suet3942 in reply to Telian

Hi Telian, it’s Mary isn’t it? You’ve changed your profile pic.

Telian
Telian in reply to Suet3942

Never put a profile pic. It’s Terri, remember we met at the AGM couple of years back. Prof D and Sarah Mackie were guest speakers.

There was a Mary with us.

Suet3942
Suet3942 in reply to Telian

Sorry Terri. Getting you mixed up with another lady we met that day. .

Telian
Telian in reply to Suet3942

That’s okay I know who you mean.

I am on 7mg , reducing to 6mg next week, but on my last reduction had palpitations and a tender scalp plus a feeling of anxiety or dread. I phoned the main hospital for advice , and was told that the symptoms would lessen after several days ( call was made a few days after I’d gone down to 7 mg ).I have a bedside fan to deal with the hot feelings. I was thinking of using my tablet splitter and taking less Prednisolone than recommended on this next reduction as I believe someone said that reductions shouldn’t be more than 10% at any time , and going from 8 to7 is , I think , 12.5%. Correct me if my arithmetic is suspect. In other words, I’m experiencing similar symptoms.

Suet3942
Suet3942 in reply to Tahiri

Horrible for you but has made me feel a bit better knowing I'm not alone. I've requested 2.5mg pred from my gp which greatly helps a slow reduction.

tangocharlie
tangocharlie in reply to Tahiri

Going from 7 to 6 is a very tricky one. I'd go by 1/2 from 7 to 6.5 and use the DS method. Around about this level you have a double whammy of the adrenals needing to wake up (symptoms of shakiness and sweats are common for adrenal problems) and also still trying to stop the PMR from flaring up again. Withdrawal pains can last abut 3 days which is maybe what the hospital is thinking but if it goes on beyond that it is not normal. The 'tender scalp' thing worries me too as that can be a sign of GCA

Tahiri
Tahiri in reply to tangocharlie

Thank you for the advice. It is GCA so I’ll be careful with the taper. I spoke to the Dr and mentioned that my scalp was tender , but she said that it was stress because my blood results were excellent a few days before.

Tahiri
Tahiri in reply to tangocharlie

Forgot to ask - what’s the DS method ?

tangocharlie
tangocharlie in reply to Tahiri

Dead Slow Nearly Stop method (DSNS) you'll find it if you use the search box on the top right of the screen

I am on 6 trying to reduce. Currently doing it by 2 days on 6 and then 1 on 5. It is just about working

How does anyone reduce by 1/2. I only have 5’s and 1’s

PMRpro
PMRproAmbassador in reply to Notspeedy

You get a pill cutter from the pharmacy and either cut the 5mg to get 2.5mg and add 1mgs to get the dose you want or you cut a 1mg to get 1/2mg.

This

healthunlocked.com/pmrgcauk...

is an even slower approach than you are using - maybe that would help with using 1mg?

Suet3942
Suet3942 in reply to PMRpro

Gp will prescribe 2.5mg. Mine has

PMRpro
PMRproAmbassador in reply to Suet3942

Mmm - but are they all the same sort of pred? All enteric coated which always comes with a 2.5mg dose or all plain uncoated pred? Persuading them to find 2.5mg plain pred isn't always easy even though it does exist too.

Suet3942
Suet3942 in reply to PMRpro

I just take 4 mg uncoated abd 2.5 coated. I know they will be absorbed at different times and it hasn't been a problem until now.

PMRpro
PMRproAmbassador in reply to Suet3942

Sometimes it is a positive move - but not for everyone.

Suet3942
Suet3942 in reply to Notspeedy

Order some 2.5 mg from yr gp.

I have just started 6.5 and am rather tired and having a lot of allergy type reactions.

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