reduced of increase advise please

[Maggie1313]

Hello again i am 5wks to tomorrow at 3mg I have developed a new symptom with this reduction heightened anxiety and panic , plus  still haven’t fatigue and weaknessNausea and dizzinessThe top of my legs feel like the muscles have been tightened and when I walk sometimes is like walking in concrete. Is this a symptom of the adrenal glands trying to kick in or is it the sign of flare 🥴I had my bloods last week and my CRP is up from 49 to 58 And my ERS is up from 17.8 to 25.84  just wondering if it be wise to try to go down by 0.5mg to 2-1/2mg on slow reduction for 5wks or stay for another week on 3mg would really appreciate any advice please 🙏 

[SnazzyD]

I don’t know about the concrete legs but the rest of it sounds like adrenal function being low. When they kick in you should feel nothing at all, just that life carries on and you don’t suffer like you did. The idea is that the adrenal glands produce enough cortisol so that you don’t notice your body under stress from activity, illness, emotional upset, living.

Have you increased any of the above recently, so demanding extra cortisol you don’t have.

[Maggie1313 in reply to SnazzyD]

thank you Snazzy for your reply and yes I have in the two weeks past a day of each week did a spring clean as I felt ok do you think this could have caused how I feel. Do you think I should wait a week or two before I reduce again 🤔😊

[SnazzyD in reply to Maggie1313]

It could be. A day’s satisfying cleaning is quite a lot of activity and if you aren’t producing enough cortisol it’ll take more of a toll than it should. If you are not used to the movements required by cleaning like squatting, repetitive movements with one’s arm, bending, it is actually quite strenuous. You can also get delayed muscle stiffness too because you’re not used to it.

I had to go very slow during this time. Even a short drive to a small supermarket in the next village was enough to wipe me out for the rest of the day. I went for the approach of doing less but having lower Pred and waiting for things to improve which they did but it was many months. The only way your body will start producing cortisol for itself is if it keeps having low levels in the body. It is a case of striking a balance between keeping it low or having it too low and becoming ill. For me that compromise was having a boring life.

[Maggie1313 in reply to SnazzyD]

thank you so much Snazzy great advice I can barely walk today with the fatigue. Are you saying I could feel like this for many months 🤣🤣 or as I lower does it get better or worse 🥴😊

[DorsetLady PMRGCAuk volunteer in reply to Maggie1313]

Have a look at this re adrenals - how long it takes is “how long is a piece of string” type of question - unfortunately

healthunlocked.com/pmrgcauk...

[Maggie1313 in reply to DorsetLady]

Thank you DL your right how long is a piece of string I’m hoping mine is very short 🤣🤣

[DorsetLady PMRGCAuk volunteer in reply to Maggie1313]

Never is when you want it to be, but then too short can be a problem as well ! 😳

[Maggie1313 in reply to DorsetLady]

👍🤣🤣🤣🤣🤣

[SnazzyD in reply to Maggie1313]

Yes, it can have a delayed effect in that you have a good day and go to sleep feeling smug but the next day the tank is empty. It is impossible to say how long it takes as we are all different. Some people have no trouble and some like me, struggle for over a year. What you don’t want is to keep upping the Pred so you can keep being busy. I’m not saying you are but it can be tempting when one gets fed up of living like a shadow of oneself. Another thing that can happen is that you can feel pretty good and then for no reason it hits which is why you need to carry Pred. Sometimes it takes a little extra stress to make one realise the ceiling os still there, just higher than it was. Do read the piece on adrenals in Mrs Nails’s FAQ’s on the right here, as it is important to know when it is time to ask for medical advice and a possible test.

[Maggie1313 in reply to SnazzyD]

hi Snazzy my Dr told me today they don’t do a cortisol test and asked me why I would want it 😤 My daughter was telling a girl at work what I was going through and she said her mum had the same symptoms coming of steroids for last 2 yrs . She had the very same symptoms coming of tranquillisers 10 years earlier

Her mum is just of the phone to me and I can’t believe the similaritie of symptoms of coming of tranquilizers and steroids

It took her 2yrs to get off tranquilizers with cutting down every 4wks a kind of same way we reduce .

Has anyone else over time said this on the site or is it just a coincidence? 🤔

[SnazzyD in reply to Maggie1313]

That’s a totally different mechanism but might feel the same in some respects.

To be honest, if you had a test now it would probably tell you what you know now, that your cortisol production isn’t tip top. It is early days for being this low in Pred and your body needs a bit more time. My tests were done at 4mg and 1.5mg Pred. The first was not great but by 1.5mg it was much better. It’s worth asking for one if the bad feeling keeps on and on and you are doing your part by not over doing it. Even then the test (Synacthen) doesn’t tell you if the glands will work all day every day come hell or high water, just that they can on the day when prompted. The early morning cortisol done by the GP just shows if you got any showing at all at the point the blood is sampled. Some people need a referral to an Endocrinologist but as I said, it’s early days for you.

[Maggie1313 in reply to SnazzyD]

thank you all for being there for me today and for everyone else. 🙏😘

[christi48 in reply to SnazzyD]

I'm confused. I have read here that if pain comes back during a taper, one needs to up the dose in order to mop up the accumulating inflammation. But now you say we don't want to up the dose and should wait it out until we start feeling better...

[DorsetLady PMRGCAuk volunteer in reply to christi48]

Pain can be caused by many things -not just your illness flaring.

In this case due to low doses it could be adrenals not working as they effectively as they should be, one symptom of adrenal insufficiency can be muscular aches. So then you do need to try and ride it out.

Another reason could be DOMS (delayed onset muscle soreness ) -from overactivity.

If it coincides with a reduction is too easy to blame that.

[christi48 in reply to DorsetLady]

Thank you.

[DorsetLady PMRGCAuk volunteer]

Most symptoms do sound like adrenals stuttering, and honestly the only thing to help them is a very slow taper.. time and patience.

However don't like the sound of your increasing ESR, which could be a flare [but would have expected that to surface quicker than 5 weeks from last reduction, unless as you have increased activity] - this link contains usual advice on how to cope with same-

healthunlocked.com/pmrgcauk...

But whatever it is, no further reducing for time being....

Presumably no advice from doctor on increasing ESR!.. but that may need investigating just to make sure it's not a one-off... unless you can pinpoint any occurrence that may have raised it other than your illness...

Edit - just seen your reply to SnazzyD - spring cleaning might well be the culprit - and no reducing for at least 3 weeks..

[Maggie1313 in reply to DorsetLady]

thank you both I will not reduce again for a few weeks 🙏

[Maggie1313]

hello DL thank you for your reply my Dr said if ESR increases again in 3wk when I get bloods done he will review. 😤 I did increase my activity on 2 days over last two weeks by doing a day a week spring cleaning nothing very strenuous 🫣

[PMRpro Ambassador]

I think you have both things raising their heads at once. You are onviously hatching a flare since the inflammatory markers are going up and adrenal stuff wouldn't affect that at all. You need a bit more pred to get that under control. But the other bits are suggestive of low adrenal function and you have done an awful lot to cause DOMS,

I think you need to be patient and stick where you are at least for a a few days until the DOMS improves but if that gets worse it is most likely to be the flare manifesting. You need to keep your eye on the CRP and ESR levels.

[Maggie1313 in reply to PMRpro]

thank you will stick it out for few more days and see if DOMS improve . I don’t get my bloods done again until 15th May 🥴 😊

[Ridge in reply to Maggie1313]

That is the best advice ever! Perhaps trying Paracetamol at night might clear a bit of mystery. If it works, probably DOMS ? This is such a confusing condition!

[Maggie1313 in reply to Ridge]

thank you 👍

[Karendeena]

These are the symptoms I had when tapering. I am down to 2.5mg but unfortunately the anxiety and panic remain 😢

[Maggie1313 in reply to Karendeena]

thank you Karendeena the anxiety nausea and panic is terrible. Has your fatigue and nausea subsided 🤔🙏

[Karendeena in reply to Maggie1313]

Hi Maggie, yes they have gone back to normal. What happened really scared me and I thought I was dying. I got these awful butterflies in my upper abdomen, like real panic, couldn't eat, felt sick, lost weight and developed health anxiety. It was so bad I paid to see a gastroenterologist and convinced myself I had cancer. Following a CT colonoscopy nothing significant was revealed. I then paid to see a rheumatologist and he said my taper was too fast at 1mg every 2 weeks. He put me back up to 5mg with a taper of 1mg every 2 months but I listen to our group's experiences and decided to go slower than that. I am currently alternating between 2.5mg and 2mg every other day. This is much better.I have normal appetite now but muscle loss and I haven't increased in weight but I don't mind that as I am neither over weight or under weight.

The anxiety controls me unfortunately and I think the prednisolone brought this back as I suffered with this when I was a teenager. This is why my GP tapered me too quickly as she wanted me off it because of the anxiety, unfortunately it didn't work that well. I also have problems with irritability and can lose it at the slightest aggravation.

[christi48 in reply to Karendeena]

I, too, had a spell of increased anxiety while I was tapering. Had to go back to original dose for a while and the anxiety and pain went away. After waiting a couple of months I have now started on the ds taper schedule again - fingers crossed.

[Maggie1313 in reply to christi48]

morning Christi48 may I ask what dose were you taking when you developed the increased anxiety 🤔

[christi48 in reply to Maggie1313]

I was at 4 1/2 I believe, tapering slowly from 5.

[Maggie1313]

karendeena I to suffered with anxiety as a child also and because of the panic and anxiety my Dr has said I must get of the steroids . I am following the advice of the wonderful team here and reducing very slow @ .5mg every 5to 6 weeks at the moment I am on 3mg and team has advised me to hold back for few weeks to see if symptoms I have at moment settle 🙏 it is good to know I am not alone with the panic and anxiety. I to thought I was dying. Please keep me updated on how you’re getting on 😊

[PMRpro Ambassador in reply to Maggie1313]

"because of the panic and anxiety my Dr has said I must get of the steroids"

Which is all very well - but there are other ways to deal with the anxiety - that allow management of the PMR too.

[christi48 in reply to PMRpro]

I had been managing my anxiety quite successfully until I started the taper...

[christi48 in reply to PMRpro]

We'll see what happens this time around...

[Karendeena in reply to Maggie1313]

You are not alone ❤️ I woke again this morning with the butterflies in my chest and a feeling of panic. Every morning around 6am it starts, awful feeling. I often think it's my afib but my pulse is always regular albeit sometimes a little fast. I could cry sometimes and the stress of looking out for mum at her age....95, makes me more anxious

[Maggie1313 in reply to Karendeena]

With a fantastic team here to reassure us you also are not alone stay strong and you will get through this 🙏

[Maggie1313]

yes your right PMRpro that’s why I told him I was doing it the way you all have advised (slow tapering) he said when we get you off the steroids you will have pain again but we’ll give you another drug used for PMR i said a bad word in my head 🥴 but out of my mouth I said I’m reducing them the slow way Dr every 5to 6wks. 😊

[PMRpro Ambassador in reply to Maggie1313]

That sounds like uninformed bilge to me! Apart from anything else - the steroid sparers can ALL be taken alongside pred so you can tell if they actually are any help for you - because they aren't always,

[Maggie1313 in reply to PMRpro]

thank you PMRpro maybe he wants me of them because I’m on the coated pred and he has already reminded me the are quite more expensive then the plain ones 🤣🤣

[PMRpro Ambassador in reply to Maggie1313]

Prat ... him, not you!

[Maggie1313 in reply to PMRpro]

🤣🤣🤣🤣🤣🤣

[DorsetLady PMRGCAuk volunteer]

he said when we get you off the steroids you will have pain again but we’ll give you another drug used for PMR..

What's the point in that...bonkers view!

[Maggie1313 in reply to DorsetLady]

This is the Dr I have DL also asked me yesterday with the anxiety and panic I feel would I like to see a psychiatrist, I was crying at the time because of how sick I felt with the nausea etc I said no thank you. He did not offer to take my blood pressure etc I showed him the red patchy rash I have developed on my body in last 4weeks and he give me Priciption for anti-fungal cream and said try that . So you see DL that’s the new Dr I have 😢

[DorsetLady PMRGCAuk volunteer in reply to Maggie1313]

Think [no know] he 's in the wrong profession...

Caring...nah! poor you 😥

[Maggie1313]

I say thank God we have this site and all you wonderful patient people to be there for us. Thank you once again for all the great support you give 🙏😊

[sferios]

Hi Maggie. I have no advice because I'm new here and still learning, but I want to say you're not alone. I am on 25 mg pred and I have the same upper leg symptoms as you when I do activity like gardening. Even 10% of the leg activity I used to do causes days of really bad aches in my thighs. And I feel mild aches every evening just due to the normal day of walking.

I have learned from people here that this is very likely DOMS and not inflammation.

I yearn for the day I can get down to below 10 mg on the pred.

Best of luck to you. You're not alone.

[Maggie1313]

thank you so much and good luck to you also 😊