GCA - Hit my first problem after reducing from 30mg to 25mg prednisolone. Advice please. Thank you

[HappyDiamonds]

I have GCA diagnosed in May this year when I started on 60mg prednisolone. At first I was told to reduce by 10mg every 2weeks until I get down to 20mg and then 2.5mg every 2 weeks until I reach 10mg.but that was changed to a drop of 5mg every 2 weeks as I had symptoms on the first reduction. Actually each reduction has given me what I considered to be 'withdraw' symptoms usually on about 5th or 6th day and lasted a couple of days. Everything was ok until I got down to 30mg on 17th August and I had mild symptoms so I stayed on this dose for 3 weeks instead of 2 and felt fine when I reduced to 25mg on 7th September. 6 days after going down to 25mg (last Sunday) I got some pain - eye area, temple, ear, sinus area and top jaw. Its not terrible but nevertheless its the most Ive had since starting prednisilone. Im due to reduce to 20mg on Monday 21st September but don't feel its safe to do so and Im a bit worried if honest as I woke up with it this morning and I still have it although I took my 25mg first thing. Other days this week it has started in the afternoons and lasted a few hours.

I phoned the Hospital Nurses during the week and a lovely doctor called me back. She said to hang in there and see if it resolved and if so reduce to 22.5mg on Monday instead of the planned 20mg. If it doesn't resolve to go back up to 30mg and let them know so that a slower reduction from this could be planned.

Im having my monthly blood test next Tuesday 22nd September. Last month all was normal, with crp less than 1.

Took 25mg this morning, should I take another 5mg today? Whats the best way of preventing further problems, especially at a weekend? Should I try paracetamol first? It concerns me that Im having problems at 25mg as I thought I would get a lot lower before this happened!

Apologies for the long post and numerous questions. Would really appreciate someone talking me through this please.

Thank you

[DorsetLady PMRGCAuk volunteer]

Personally I would take the extra 5mg, there is no point in not taking enough - and if it's GCA then paracetamol will not help.

I would stick to 30mg for the next 3-5 days and see what happens - and then speak to the nurse/doctor again... will you be seeing them when you get bloods taken , or is that another person?

You need to ensure that 30mg is controlling symptoms again before you reduce - and my advice would be 2.5mg a time and 3-4 weeks between drops - 2 weeks is not always long enough to know if the current dose is enough.

Earlier higher doses you can probably manage dropping every 2 weeks, but you've proved that you have now reached (and gone below) the level you actually need.

You are not reducing relentlessly to zero - you are trying to find the lowest dose that controls symptoms - and if that's 30mg for you at the moment - that's what it is!

Blood test taken a month ago may have been okay, but a lot can happen in that that times, and they do have a tendency to lag behind symptoms ---so symptoms every time dictate whether you reduce or not.

Not sure if you've seen this - might it might be useful - and hope things soon improve -

healthunlocked.com/pmrgcauk...

[HappyDiamonds in reply to DorsetLady]

Thank you Dorset Lady for taking the time to reply on a Saturday afternoon.

My blood test is taken at my GP Surgery by a healthcare assistant and sent to the Hospital via their transport which takes away the necessity of having to go to Hospital in the current situation.

I will gladly follow your advice which is pretty much what Im hoping the Hospital will also suggest as Im currently having 5 or 6 not so good days out of every 14, although the pain today is GCA I'm pretty sure of that.

Would the extra 5mg I am about to take now be likely to improve things or will take it take a couple of days of being on 30mg again before I feel the benefit?

Its so reassuring to be able to 'speak' to someone and I hope you all know how much you are appreciated for what you do and the time given to help.

[DorsetLady PMRGCAuk volunteer in reply to HappyDiamonds]

You might find the extra 5mg makes a real difference today, it really depends how much inflammation has built up - or it might be a couple of days to notice an improvement.....you’ll just have to try and see.

[PMRpro Ambassador]

Are the symptoms getting worse? Or are they stable? Either way, they haven't gone so definitely don't reduce at all on Monday until after speaking to someone. And if they are still there tomorrow - she has already told you to go up to 30mg again.

In the meantime you could try paracetamol if you haven't already done so. But only you know what the symptoms are like - and it sounds as if you feel you need to go back to 30mg. In the great scheme of things going back 2 or 3 weeks is nothing - especially if it means you not letting an increase in inflammation out of control which might mean you have to go to a higher dose. And they are obviously aware that they were asking you to reduce quite quickly and it might need to be slower.

[HappyDiamonds in reply to PMRpro]

Thank you for your reply PMRpro. This time is different, its GCA pain, previously it has been more vague and fatigue and achey. However the pain is not severe and its not stopping me from doing anything, even started sleeping well. I genuinely fear going back to the dreadful experience I had before diagnosis.

I definitely do not want or intend to reduce on Monday, I have been half expecting this to happen as its been grumbling under the surface each time I reduced. My mission now is to get the Hospital to agree as they were pretty keen to get me below 20mg even though they are aware that I have been reducing after only being stable on each dose for a few days.

As always, your help is appreciated.

[PMRpro Ambassador in reply to HappyDiamonds]

Then as DL says - you need the extra, and they need to rethink. It is obviously in their minds. Hope it works - and don't let them bully you into hurrying. I think you would be better using 2.5mg steps now, not waiting until 25mg. And maybe one of the slowed taper approaches might help you cope better with the change in dose.

[Devoid in reply to HappyDiamonds]

Hi just to say down from 30 mg I could never manage 5 mg drops , found 2.5 worked well for me, but as others have said don’t drop at all while symptoms persist.

[HappyDiamonds in reply to Devoid]

Thank you that is reassuring to know as I wasn't expecting this just yet. Such a lot to learn but this forum is so helpful with many very kind members. Im not feeling so worried today.

[SheffieldJane]

Paracetamol won’t help. Because it’s GCA and there are risks involved, go up in dose. Unless you are experiencing relief from symptoms the 5 mgs could safeguard you. This phase will not last too long.

[HappyDiamonds in reply to SheffieldJane]

Thank you. I took the extra 5mg yesterday late afternoon and 30mg this morning, do feel a little better and not so worried.

[baxternoni]

Hi HD,

I was diagnosed in late November and was put on 60g of prednisone. I had been having vision issues as well as other GCA problems. Because my doctor went to Thailand for a month, I was unable to start Actemra until January. This is the only Biologic that works for GCA. I get bloodwork every month to see how my Sed-Rate and CRP levels are. If everything is ok I am allowed to taper down. I am now down to 5mg, hoping to go to 2.5 in two weeks. I have had a lot of health issues due to the prednisone, but at least my vision was saved.

L

[FnF36 in reply to baxternoni]

I had a similar experience at 25mg in May having reduced from 60mg when GCA was diagnosed last November. I went up to 30mg for two weeks and thereafter have been reducing by 2.5mg every two weeks. I have had occasional recurrences of shoulder/arm aches and my rheumy prescribed Naproxen in the event I needed relief. I have continued to taper, have taken Nap occasionally and it does the trick.

Wishing you wellness and safety.