GCA-Prednisolone withdrawal

[pomeranion]

I've posted recently about my PMR and GCA. Now I am going to run out of my prednisolone. Because my GP wanted me to reduce I did for about 10 days and then flared. I went back up to the previous dose of 60mgs. but still experiencing most of the flare symptoms. He is now refusing a refill. I spoke to his nurse and questioned her what can I expect with a withdrawal. Can anyone hear advise me?

[DorsetLady PMRGCAuk volunteer]

If he is refusing to prescribe and that means you are likely to run out of Pred completely then he is putting at risk of an adrenal crisis.

Or are you saying you will have some Pred, not not at the level you are now at? If so, then life is likely to be very painful until you get a new supply.

Whatever you need to speak to the Rheumy nurse again, or someone who will fulfil your prescription.

[pomeranion in reply to DorsetLady]

The GP nurse not the Rheumatologists. I then contacted the Rheumatologist office. Being so late on Friday afternoon she forwarded a message for a refill to him (the Rheumatologist). So far, I haven't gotten notice of a refill being ordered. I doubt that one will be forthcoming before I run out on Monday. What is an adrenal crisis? What can I expect? Is the hospital ER my last resort?

[piglette in reply to pomeranion]

Acute adrenal crisis is a medical emergency caused by a lack of cortisol. You may experience lightheadedness or dizziness, weakness, sweating, abdominal pain, nausea and vomiting, or even loss of consciousness. It is definitely a visit to the ER.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

TY

[pomeranion in reply to piglette]

The nurse mentioned adrenal crisis when I told her I was going to run out. I will watch for any of the mentioned symptoms while reducing with my remaining pred. Try at 20mgs. Maybe enough for 2-3 days. Then off to emergency room.

[DorsetLady PMRGCAuk volunteer in reply to pomeranion]

As piglette has said…

[pomeranion in reply to DorsetLady]

I am going to try my OB/GYN for an appt. Such short notice. She had prescribed the pred. first but at 30mgs. Warned of the danger of diabetes. None of the Drs. addressed that danger until my in home nurses advised me to talk to my GP about monitoring my sugars. Maybe that is why they are now cutting me off of the pred. I am experiencing both high and low blood sugars. Especially low when I wake. Weak, dizzy and balance issues. (scary). This is something I will also have to contend with. I'm still experiencing breast pain and tenderness. She will be the best to consult with this also. I feel like a real mess.

[Suffererc]

wow. That sounds pretty dire. What a non caring in compassionate GP he is. Hope you get sorted 😊

[PMRpro Ambassador]

What had you reduced to that led to the flare? How much pred have you got?

I can only emphasise that you having been on 60mg for 10 months is a piece of nonsense and you MUST see a rheumatologist if you have GCA because it is also possible it isn't GCA and a GP is out of his depth with it.

If you are at or above 20mg you are unlikely to have an adrenal crisis BUT your symptoms will probably return. Your GP would be medically negligent to leave you without ANY pred after keeping you on 60mg for so long and to some extent he has caused this problem. WHY have you been kept at 60mg for so long?

[pomeranion in reply to PMRpro]

I just got a reply from the Rheumatologist. He says his recent blood tests confirm his diagnosis that I don't have PMR or GCA as he previously thought. He forwarded the test results to my GP. They both refuse to refill my pred. I will probably have enough for a few days at 20mgs. I don't know why I was kept at 60mgs. for so long. Sorry it took this long to reply. I was waiting for his findings. I really appreciate your response. I had a terrible weekend of anxiety and depression. I will need to find Drs. with some knowledge of my possible conditions and symptoms. I don't know if there are any.

[PMRpro Ambassador in reply to pomeranion]

After 10 months on 60mg they cannot cut you off with nothing - that would be life-threatening because your adrenal function is bound to be at the very least blunted. You MUST seek medical advice from someone who is less blinkered or ignorant,

You need the test results - because if he is going by the ESR or CRP as inflammation markers they are unlikely to be raised if you have been on 60mg pred. But it isn't a question of whether it is PMR or GCA that is the bottom line, It is that you are a long term corticosteroid patient who will have developed secondary adrenal insufficiency as a result and you MUST be tapered off the pred dose slowly. At worst - the ED or an urgent walk-in centre with all the info you have available to you,

[pomeranion in reply to PMRpro]

I know where the ED is. I have been there in the past. As for the urgent walk-in center I don't know if they can administer prescriptions. Thank you.

[PMRpro Ambassador in reply to pomeranion]

Well they can in the UK! Your other option would be to speak to your pharmacist who should be aware of the danger of stopping long term pred suddenly.

[pomeranion in reply to PMRpro]

I was lucky to get an appt. tomorrow afternoon with my OB/GYN. I have all the recent lab test results downloaded on my son's phone. The CRP and ESR are elevated. The Drs. always said they were normal. My son is taking me for my appt. He is my primary caretaker. I'm sure my Dr. is familiar with secondary adrenal insufficiency. When I called to make the appt. I was lucky that the Dr. answered. I told her that they wouldn't refill my pred. She said they can't do that. She was able to fit me in tomorrow. I also discussed my painful breasts and diabetes. I have full confidence in her. She has been in practice for over 45 years. She delivered my Great Nieces triplets. They are now 18yrs. old. Thank you for all the warnings. The reference to the pharmacist's knowledge is very interesting. I never thought about it. I learn so much from all of you. As I keep repeating I don't know where I would be without this forum. Thank God.

[PMRpro Ambassador in reply to pomeranion]

Excellent - sounds as if she has her wits about her! Pharmacists learn ALL about drug effects in their 7 years of training. Sometimes I think some doctors skipped their pharmacology lectures!

[LIVEORDIEHEREIAM]

WHAT!!!!!!!!!!!!!? I hope you have gone to pick up your pred! If not...

[pomeranion in reply to LIVEORDIEHEREIAM]

No refills ordered by both Drs. Sitting here in limbo. Thanks for your concern.