Prednisolone tapering

[Avon14]

Hi Everyone

I’m currently on 7mg of prednisolone, reducing 1mg per month, down from 60mg when diagnosed with GCA in April 2021. Through the past months I’ve suffered with extreme spaciness and balance issues but since seeing a private ENT specialist and having neuro physio and, of course, the reduction of prednisolone these symptoms have eased greatly. However during the past month following a minor cough and a minor injury to my arm I have suffered with severe rib pain which fortunately is now easing. I’m now wondering should I continue with the 1mg prednisolone reduction this month? Other than the spaciness and balance issues I’ve not had any pain so was very concerned about the severity of pain with such minor complaints.

I have tried without success to get any response from the ‘rheumatology helpline’ and can’t get a GP appointment.

I’m due to make the 1mg reduction this week so would welcome any suggestions on whether to continue with the reduction and how to make contact with the rheumatology team.

Many thanks

[Grammy80]

I'm amazed at how fast you reduced, from 60mg to 7mg in 11 months. I just got to 10mg last Wednesday after 2.5 years. Why don't you just coast for a few months until you feel better? It certainly cannot do you any harm. Let your body rest.💕

[Avon14 in reply to Grammy80]

Thank you. Yes, I could do that, just didn’t know if I could. I feel so on the dark about it all. Thank goodness for this forum.

[Grammy80 in reply to Avon14]

Avon, this forum taught me 'I could' and I have been ever grateful. When I was diagnosed I knew nothing and I wasn't at all sure about the doctors!! Relax, heal and be well!💕

[DorsetLady PMRGCAuk volunteer]

Hi!

As Grammy80 says a very quick reduction…..so although rib pains are not directly connected to GCA , I wouldn’t be reducing until you’ve got that sorted out.

As for contacting Rheumy team, I’m hoping you have a contact number for such eventualities- if not ring main hospital switchboard and ask either for the number or look through any paperwork you may have relating to appointments etc, assuming you have actually had some!

[Avon14 in reply to DorsetLady]

Thank you. I will remain on 7mg for the time being until my rib pain has completely eased. I have tried leaving messages on the rheumatology helpline but no response. The only contact I have is the rheumatology secretary who says understandably that she can’t answer clinical queries. I think I will contact my local PALS service who have been very helpful with previous difficulties. I have an appointment scheduled for April with rheumatology consultant.

So grateful for your insight.

[DorsetLady PMRGCAuk volunteer in reply to Avon14]

Well surely the Rheumy Secretary can give you a number of someone who can answer your question…..why do they have to make it so difficult ?

[123-go in reply to DorsetLady]

I was going to say, "It's their job" - but better not.😉I know some people on the forum receive wonderful care and support as I myself have with a just a couple of blips. Perhaps when the 'new' nurses arrive we'll be able to have scheduled telephone calls between appointments 😂. I'm looking forward to meeting my new consultant face to face in April who is replacing the trusted one.🤞🏼

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

I meant the secretary -rather than the medical team. Like all -there’s some helpful and some …

[123-go in reply to DorsetLady]

I know. I do go off on a tangent sometimes/often-apologies.

[Avon14 in reply to 123-go]

That’s interesting as I have received a new appointment for April when I already have one for end of May?

[123-go in reply to Avon14]

We don't live boring lives do we? If you feel the need to check, ring the main hospital number and ask to be put through to the rheumatology appointments clerk who will confirm for you.

[Avon14 in reply to DorsetLady]

They just tell me to call the helpline or call my GP or 111. Haven’t yet tried 111 but possibly if I still get no joy.

[DorsetLady PMRGCAuk volunteer in reply to Avon14]

That’s not good enough -they are the specialists in PMR - think a complaint to PALS is in order..,but it shouldn’t be necessary.

[Megams]

~Hi Avon14 - as Grammy80 & D/L have mentioned I would have thought your reduction especially with the GCA component (all within less than a year) way too fast.........Can't help but feel that you are setting yourself up for a flare - I would be staying put in meantime and take a breather & continue to try & connect with the Rheumie team.

Others will be along shortly with their thoughts but good luck - please stay safe ~

[Avon14 in reply to Megams]

Thanks you. I will remain on current dosage for time being and continue my attempts to make contact with the rheumatology team.

[toots1951]

Hi Avon I agree with what has been said regarding tapering. Regarding severity of pain from minor issues - This happens to me. Recently pulled the garden bin onto the pavement (simple thing) and terrible pain as had pulled my shoulder. My ribs remain the most sensitive areas through this. well. Take care.

[Avon14 in reply to toots1951]

Thank you for your reply. I wasn’t prepared for the intensity of pain for such minor issues. Thankfully easing now. Do hope your pain eases.

[123-go]

Hi, Avon14. If you ring the main switchboard and get no joy I suggest writing directly to your rheumatologist marking 'For the Attention of' (rheumatologist name) on the envelope.In the letter explain your problems in bullet points and how this is making you feel and ask (politely) for at least a telephone appointment. Mention the difficulty you have had in contacting the department and keep a copy of your letter. I myself have had almost immediate positive response after writing.

Good luck and no reducing for the time being.

[Avon14 in reply to 123-go]

Thank you. I will definitely try again, phoning main switchboard and writing. I really feel, as I think many people with this illness feel forgotten. So grateful for the support here.

[123-go in reply to Avon14]

It's not only frustrating but concerning and doesn't do a lot of good for stress levels 😏. It does help when we advocate for ourselves so don't give up. I'm sure you'll get answers soon.

[Avon14]

Thank you, I so value your support.

[cycli]

As someone who also has GCA I am in awe of your reduction. I hope it goes well for you in further reduction, but like others say I would caution further reduction for a while until you feel really secure in how you feel. 9months in and I'm stuck on 22.5mg pred and have a stinking cold. Just tested for covid and not that thank goodness. When this cold is gone I'm hoping to continue reducing, but we never know what's around the corner. Good luck.

[Avon14 in reply to cycli]

Thank you cycli, I guess I’m lucky that I haven’t had the awful pain that so many on here have so have been able to follow the tapering regime. I’m just horrified by the lack of clinical care when needed. I do hope your cold clears soon. Take care.