Prednisolone withdrawal.: I just came from a... - PMRGCAuk

PMRGCAuk

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Prednisolone withdrawal.

pomeranion profile image
13 Replies

I just came from a Rheumatologist appointment. He has discontinued my prednisolone. I'm currently taking 5/10mg. tablets. I ran out of the liquid about a week ago (15mls.) every morning. I started having severe GCA symptoms (headaches, scalp tenderness, jaw and gum pain). Also, my PMR symptoms have returned. GP had me on a slow taper that I was unable to maintain. I will run out of the tablets in two days. What can I expect? What do I do?

I already went to the emergency room when I ran out of the liquid last week because my GP denied me any more pred. He was the primary prescriber from day one. The emergency staff wouldn't give me any pred. I returned home and luckily found some 10mg. tablets that were prescribed years ago. I have been taking the 5/10mg. tablets every morning. I feel like a drug addict. I don't know where to go from here. Do I have any recourse? I value your advice greatly.

Sincerely,

Pomeranian

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pomeranion
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13 Replies

pomeranion, you are aware of the dangers of an adrenal crisis, I assume. If not, Google the term. It is life-and-death.

After writing a reply, I looked at your profile and see that 5 months ago, you posted almost the exact same thing. How did you manage to survive the five months?

Good luck!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As mentioned, the most serious occurrence is likely to be an adrenal crisis - are none of the medical staff you encounter aware of that?

Even though your primary care doctor normally prescribes your Pred, you say you are under the care of a Rheumy -why has he stopped your Pred? - you need to engage with him again … otherwise it looks like another trip to ER.

posthinking01 profile image
posthinking01

Hi sorry hear this - are you in the UK?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toposthinking01

no…US - says so on profile.

SnazzyD profile image
SnazzyD

It might be worth asking the doctor, who is prepared to take responsibility for adrenal crisis should you have one due to withholding a Pred prescription as it could be a life or death situation?. Let them see you take their name or that of the person overall responsible for your care, it might help. I presume you’ve read about it in our FAQ’s given this has happened before as has been said above. You could Google secondary adrenal crisis and take some info with you.

What rationale did the doctor give for not giving it to you 5 months after a GCA flare?

PMRpro profile image
PMRproAmbassador

What are they at - long term pred patients cannot discontinue their dose overnight without tapering or they are at risk of an adrenal crisis which at best would make you pretty unwell and at worst could be fatal.

I would ask your GP if his medical insurance is up to date ...

TinaAird48 profile image
TinaAird48

I would recommend you to go private . Why have the medics withdrawn your pred. I hope you can find a solution, all the best for the future x

PMRpro profile image
PMRproAmbassador in reply toTinaAird48

The poster is in the US which is effectively an entirely private insurance system.

carlat profile image
carlat

I'm sorry you're going through this, please see your gp (I'm in Scotland) as soon as you can. I had a Synacthen test before I completely came off Pred and it showed my cortisol levels to be OK...so no chance of adrenal crisis. I've been off them for over a month now and I can say the first few weeks were awful, sickness, nausea, extreme fatigue, but that's maybe just me, I have a friend who came off them with no bother. My pain is all back again but I'm determined not to go back on Pred...but as I said that's only my experience. Hope you find some answers, x

PMRpro profile image
PMRproAmbassador in reply tocarlat

The poster is in the US - a very different system,

carlat profile image
carlat in reply toPMRpro

I was aware of that, I just thought I'd let them know how I got through it. Apologies.

PMRpro profile image
PMRproAmbassador in reply tocarlat

No, no, no problem, just thought maybe you hadn't realised how different the "see your GP" system can be there.

carlat profile image
carlat in reply toPMRpro

That's why I said 'I'm in Scotland ' !!!!

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