flare up

[Cashewnutty1962]

Morning all again.. If you recall, I posted a few days ago about my post gardening pain followed by tripping when out walking… I increased my prednisone dose from 4 to 5mgs 2 days ago. Felt ok yesterday but last night was the worst pain ever!!! I could barely take a deep breath without shoulder pain. Getting into and out of bed was an ordeal. Spoke to GP just who said too early to see any results.. increase dose if no better after 5/7!!!

I’m already noticing increased irritability from the rise in dose… I feel like I should just ignore my GP… she is not feeling my pain. I’m worried in case I get even more irritable as I increase the dose…so hard to know what to do… I would prefer to follow the tapering protocol here but I’m sure my GP would not be impressed. She has referred me urgently to see the same Rheumatologist who I found quite dismissive.

[123-go]

I know exactly what it’s like to be faced with a dismissive rheumy! I asked not to see the offending consultant in the future and to have that request written in my notes. It is your right as an NHS patient to choose. Be honest with your GP about how you feel. I have to go out now but you will have other replies. Good luck and stand your ground.

[Cashewnutty1962 in reply to 123-go]

Hi I told my GP. She says I will be at the bottom of the waiting list if I get referred to someone else.

[123-go in reply to Cashewnutty1962]

In car- not driving😂 do replycwill be all over the place. Please ring your rheumy helpline.

[DorsetLady PMRGCAuk volunteer]

We gave advice on increasing dose in your previous post.. and maybe your irritability is down to pain as much as Pred.

If the pain is DOMS -delayed onset muscle soreness] have you tried ordinary painkillers or other therapies - heat/cold rather than Pred?

[Cashewnutty1962 in reply to DorsetLady]

Hi I have tried heat/ cold no change. I’m thinking my GP won’t be happy if I go my own way so to speak…

[DorsetLady PMRGCAuk volunteer in reply to Cashewnutty1962]

Well she do say increase if no better [assume 5/7 means 5 to 7 days] so will she be aware if you do it slightly easier - or do you have to report back?

[Cashewnutty1962 in reply to DorsetLady]

Haha.. I have just increased it self!! I took 5mgs about 30 mins ago and have just now taken another 1 mgs. She’s not feeling the pain I am!! I don’t have to report back to the GP.😂

[Cashewnutty1962 in reply to DorsetLady]

sorry 5/7 means 5 days not 5-7 days

[PMRpro Ambassador]

Adding one mg is unlikely to achieve anything if this is a flare - you will just play catchup. Is this just one shoulder? If so, it could be an injury rather than PMR and a proper examination might be needed.

You don't necessarily need to be re-referred - you can try going via PALS to submit a request to the department you are under to not see a particular doctor because of strained relationship.

[Cashewnutty1962 in reply to PMRpro]

Hi ok. It’s actually a 2mgs increase as I was on 4mgs.

[PMRpro Ambassador in reply to Cashewnutty1962]

Still a bit tokenist. That it is all joints suggests a good going flare - there is a paper that discusses a fall being enough to trigger a flare.

[Cashewnutty1962 in reply to PMRpro]

it’s both shoulders and both hips. The right shoulder is worse but that’s a chronic matter many years standing.

[DorsetLady PMRGCAuk volunteer in reply to Cashewnutty1962]

One shoulder more than the other - that’s because PMR targets the weaker parts first.. and re massage - sometimes the first 24-48 hours after make you feel worse, but it then improves..did you drink plenty of water afterward?

[Cashewnutty1962 in reply to DorsetLady]

Hi I drank plenty of water as I usually do. I don’t drink tea, coffee, soft drinks etc. I’m still waiting to feel better after the massage…

[SnazzyD]

Just a thought. I know we have different sensitivities to Pred but feeling irritable from just 1mg increase seems unusual. I wonder if it is due to low cortisol because all this pain is needing a fair amount and some of that will have to come from the adrenal glands by now. 4/5mg is enough to cause an amount of suppression but possibly not enough to deal with your physical distress. If your adrenal glands can’t keep paying out you have too low cortisol for the situation.

I do wonder how much is due to the injuries too. Did you have your deep tissue massage after the trauma?

[Cashewnutty1962 in reply to SnazzyD]

Oh ok thank you. Yes I had I had a deep tissue massage last week which was about a week after the fall. Normally this helps albeit after initial pain increases. I was hoping that this would be the case as it has been previously.

[Angelsmummy in reply to Cashewnutty1962]

Hi C,I had deep tissue massage on my back and shoulder and to be honest I was in worse pain afterwards than before.Think our muscles are too weak to take all that stress!Find yourself another Rheumy,it is YOUR right,!!Wishing you well,xx🌷😜

[Cashewnutty1962 in reply to Angelsmummy]

Hi … my hopes of feeling better after that massage were certainly dashed!! On a plus point, increasing steroids from 4-6mgs seems to be working… I don’t want to speak too soon. I’m happy (ish) ! to increase further if necessary. It’s finally in my thick head that being painfree is preferable to being on a low dose. I can always reduce slowly again.

[Angelsmummy in reply to Cashewnutty1962]

Do you know what C,when I knew that I was going to be on lerm term steroids,I got panicky,all the awful stories about them but do you know what,like you I would sooner be on them to be in pain all the time.Am on my third fake and reducing nice and slow ,and however long it takes is fine by me.We are a long time dead so who wants to be in pain rather than take our “ little helpers?”The very best of luck to you C,well get there eventually eh?XxxPS You ain’t thick,we just sonetines let our head rule what our body is trying to tell us!xxxHave a lovely Easter.xx😜🌷🐣

[Angelsmummy in reply to Angelsmummy]

Oh my days,I put FAKE instead of flare,really must read before I send.m😱😜🌷

[Cashewnutty1962 in reply to Angelsmummy]

Thank you so much.. you also enjoy the BH break ☺️

[Cashewnutty1962 in reply to SnazzyD]

is there a way of increasing cortisol levels normally? Would it work being on steroids?

[SnazzyD in reply to Cashewnutty1962]

The cortisol levels are low because the Pred dose has been so high that your adrenal axis hasn’t needed to work because of the surplus given by the artificial corticosteroid Pred. Somewhere under 10mg Pred is no longer providing that surplus and your adrenal glands need to kick in to top it up for daily needs. As they have been ‘asleep’ for so long they don’t always wake up to be a reliable topper upper of cortisol. The only way of waking them up is by being in deficit on a daily basis. For some this process is pretty smooth and on a normal day they manage it and feel not too bad. 4/5mg can be still enough to keep them sleepy and it might be ok until your body has an assault like pain, upset, trauma etc. If the adrenal glands can’t stump up that extra cortisol yet you can feel tired and irritable amongst other things.

Normally the only way to get more cortisol production is to weather the storm and reduce slowly to keep reminding the body it needs to open shop. BUT if your PMR is flaring you have to deal with that first and the adrenal ‘training’ has to come later. If you decide to go up to 10mg and your irritability improves you know it was more likely to have been low cortisol. If it gets worse, you may well be very sensitive to Pred.

Do have a read of this essential reading for all those under 10mg about all things adrenal, especially as some GP’s and rheumy’s don’t understand it or completely under estimate the effects.

healthunlocked.com/pmrgcauk...

In your case you need to decide if it is a flare or left over injury issues, possibly stirred up by the massage. Or, joy of joys, both.

[Cashewnutty1962 in reply to SnazzyD]

Thank you so much👌🏽👌🏽

[Omanain in reply to SnazzyD]

I had to have some fairly major dental treatment on Monday and my dentist contacted my GP to see if I needed extra pred before the treatment, she finally received an email from them saying we don't know !!

[DorsetLady PMRGCAuk volunteer in reply to Omanain]

That’s always reassuring! Not..😳

[SnazzyD in reply to Omanain]

Oh my. That’s pathetic. Lucky you can advocate for yourself then!

[PMRpro Ambassador in reply to Omanain]

Next time you see your GP give them a present of these links:

pituitary.org.uk/informatio...

There is even a video presentation for those who struggle to read ...

pituitary.org.uk/understand...

[Cashewnutty1962 in reply to PMRpro]

Thank you good idea.

[PMRpro Ambassador in reply to Cashewnutty1962]

My reply was actually to Omanain - whose GP seems equally clueless!!!!

[Cashewnutty1962 in reply to PMRpro]

😂we can share!! Can I ask if this group covers other conditions please? If so… do U have a list? I have sung the group’s praises too much I fear ….

[PMRpro Ambassador in reply to Cashewnutty1962]

Really it is PMR and GCA but we do have members with other conditions for whom the advice we offer is relevant and useful. Living with a chronic illness whatever it is has many commonalities and using pred is the same whatever the illness. So no, there isn't a list - and we don't turn anyone away as long as they stick to the forum rules.

[Cashewnutty1962 in reply to PMRpro]

Thank you z

[Angelsmummy in reply to Omanain]

😱👎🏼And that from people that we have to put our trust in………🌷😜

[PMRpro Ambassador in reply to Cashewnutty1962]

The reason the cortisol is low is BECAUSE you are taking pred which suppresses cortisol production. A bit like having the wood stove on in the room with the thermostat will suppress heat coming from the central heating. Only no heat from the stove - or less pred from your tablets - will encourage the boiler (adrenals) to produce heat (cortisol).

[Cashewnutty1962 in reply to PMRpro]

Thank you.☺️

[4840]

I had a flare up you described 1 month ago. So horrible!

I contacted my Rheumy the next day. I was on 5 1/2 prednisone.

He said to take 10 mg for 2 weeks and then go to 7 1/2 another two weeks and then taper further if it is tolerable.

It probably would not! I will take 8 because it might happen again.

It has to been done VERY slowly!

Good luck with your Rheumy!

Caring thoughts from

Erika

Vancouver, WA

USA