Increasing my dose

[Zozoi]

Good Evening from the UK.

I am totally new to this kind of open conversation but I am so glad and relieved that I have found you all. English is not my mother tongue, so please do excuse my mistakes.

I was diagnosed with GCA back in november, put on 40mg to control the inflammation and have seemed to have done very well very quickly. My consultant started to taperr down the med, I reached without any problems 15mg by mid jan. that is when I started to feel micro symptoms, nothing alarming. I put it down to the withdrawal more than anything. next taper, 2 weeks later at 12,5mg that is when my face started to feel stiff, my scalp sensitive, my left eye tight and a couple of light headaches, again all borderline. I waited 10days but felt I had to go back into 15mg with aproval of GP. I felt immediately better, but still not 100%. Over the last few days I have had lots of stress, and decided after reading many of your posts and experiences it s evident the taper became too much too fast, and I have accumulated little inflammatories build up. The GP I saw today was a bit dismissive but mentioned that may be I should go back onto 20mg and decided to do a blood test first. I am flying out to the US on monday, she still said I could go no problem, the consultant back in mid jan also said that my MRI scan was clear, and that I am only borderline GCA. Today she thoroughly examined my eyes too and temples and said I should slow down the tapper and stay on whatever dose makes me feel comfortable. But I am the one who pushed asking if I should nip it in the bud and go to 20mg. She asked me to call from the US to get my blood results and then it will be decided. On one hand very re assuring, on the other, I m left dubious about waiting.

However, being totally new to this condition, and totally ignorant about prednisolone, i have been relying over the last 24hours on what everybody posts here. I found it so informative and full of common sense and also I am relieved to see that Gps can be out of their depth on the matter.

My question is should I just go straight onto 20mg? Or should I just give another few days to the 17,5mg. I have no clue of what is normal, what to expect, how long it takes to get back onto the right track. I am pretty lost. I see that many of you have learnt how to master the going up and down, and it all makes so much sense but I have not yet gain the confidence due to my ignorance and lack of experience.

Any advice, input would be amazing. And I will subscribe to Dorset lady tapering the minute I get back

Thank you all.

[Boozsa]

You are in the right place. I am newly diagnosed and asking the same questions. Someone on here will respond and be able to help answer your questions. Best wishes

[PMRpro Ambassador]

"I am only borderline GCA" - what in the name of everything I can think of is THAT supposed to mean! Either it is or it isn'T!

If you were only diagnosed in November you shouldn't be as low as this yet - the evidence is that GCA remains active for at least 6 months even though the markers may still be "within normal range". Not that many doctors seem to understand that - for a lot of patients a raised level may still be within the "normal range" even though for them it is significantly raised.

This is a typical and effective approach to reduction:

rcpe.ac.uk/sites/default/fi...

You will see that after 3 months you wouldn't be as low as you are with that approach. Many doctors comment that flares are common in the first 18 months - we believe that that is because they reduce the pred dose too fast.

I would say go back to 20mg - at least. If the symptoms are gone. If not, go higher. And don't budge from a dose that manages ALL symptoms until you get back from the USA. I hate say this - but MUST you go? Before you go, PLEASE be sure your insurance covers you fully. And take enough pred with you to go to a high dose if you need it for the entire trip. US medics are even less on the ball with GCA than UK ones and if you go to the USA you will have to be proactive. And the blood results are a subsidiary - symptoms are ALWAYS trumps as blood levels can lag behind - and don't always fit with what doctors expect.

[DorsetLady PMRGCAuk volunteer]

Hi

Totally agree with PMRpro- in dose advice and also flying.

Some consultants are not happy about GCA patients flying within the first 6 months.

As PMRPRO asks - is your trip really necessary ? Flying is stressful at any time, if it were me I’d be thinking very seriously about going.

As for “borderline GCA” - don't think there is such a thing.

Whatever you decide about your trip, I think you need to request a referral to a Rheumatologist - you should have been referred by GP.

Take care.

[Zozoi]

Thank you for such prompt answer,

I am only quoting what I was quoted about the “borderline” By the GP , which re assured me at the time but glad to have a more realistic feed back. Also, I now understand that it is not just an 18 months treatment and all will be well, as I was told, again thanks to the posts.

I have paid a premium to cover the GCA in the USA, and I have plenty of tablets with me.

I will go straight back onto 20mg as it was my initial gut feeling after reading all the posts. And definitely will study the reduction programme in the link.

I cannot thank you enough.

[Valnvaughan in reply to Zozoi]

If you fly to USA you will have a very long day because of the time difference. If it was me I would take the 20mg morning of flight and a booster of say 5mg at USA bedtime. Then the 20mg with breakfast in USA. Travelling across time zones and Pred dose is always tricky.

Valerie

[CT-5012]

First of all welcome to this site, you will always find someone to help. Try to get airport assistance I think you can book it by phone but I am not sure, it really does help even if you feel well, ask Dorset Lady. If you are embarrassed because you don’t look ill then limp! Take it easy for the first day or two and have a good trip.

[SnazzyD in reply to CT-5012]

That’s what I did! We assistance passengers were coraled like a herd of lame creatures. I felt like a fraud because I didn’t look the part even though I was weak as a kitten, so I developed a limp.

[borednow in reply to CT-5012]

Don't know if you were joking about the limp, but I've tried this and it works!!!

[Hidden in reply to borednow]

Like the time l took a turn of D.Fatigue in the airport lounge, so DH arranged wheelchair assistance, how guilty did l feel in 3”Heels?.... Which l was wearing as my Achilles Tendon was playing up & a high shoe 👠 helped!

[Louisepenygraig in reply to borednow]

I've done similar when I've got out of the wheelchair to go to the toilet or to look in one of the shops! When I get up I walk slowly and a bit awkwardly until I'm out of sight of the chair!

[SheffieldJane]

I would Zozoi. You have got the stress of a long flight to face. I would also take an emergency supply of Prednisalone, in case of more overt symptoms of GCA eg visual symptoms, jaw pain whilst eating, unusual headache. I would like to see this condition taken more seriously, just in case. Take care!

[SnazzyD]

Hello. Your English is very good.

After being on 40mg for 6 weeks, it took me 7 months to get to 15mg and that was with no flares, just a slow run down. During that time I did nothing, no journeys, no work, nothing, just rest and the minimum domestic activity. For me, going back up was not an option, I never wanted to be there again. I’m not sure what “borderline” GCA is. Even when my eyesight was shutting down I still had normal blood tests, negative biopsy, negative CT scan and inconclusive eye exam.

It’s easy for us saying your docs are being too hasty, what do you do? Read PMRPro’s link info and as much as you can on this forum. I had this problem but I found it easier to state my case for reducing at my speed (which was about six months slower than theirs) when I was able to back it up with evidence and/or reasoning.

[Rimmy]

Hello I also know that 'feeling' of the inflammation building back up but cannot add much to PMRpro's and SJ's informative and helpful posts - but will say trust your own body's signals despite even what blood tests or doctors might tell you. I know without a doubt when things are deteriorating with some of the symptoms you described - you just know you are not taking enough Pred to control things. The actual amount you need to get things under control is not always easy to ID initially but a few days at a higher dose won't really hurt in the long term and may curtail a longer period of inflammation. If you add any extra stresses simultaneously then this won't help - so you need to avoid them if you can .

All good wishes

Rimmy

[Zozoi in reply to Rimmy]

Thank you, all done as suggested. Arrived safely and particularly well considering. Just a micro tenderness on my left side but no headaches.

[GOOD_GRIEF]

Make sure your preds are in the original container, and bring a copy of your prescription.

TSA can go on hyper-alert when there's recent or expected drug-running activity, and you simply won't know about it. It rarely makes the news unless there's been a mega-quantity seizure.

Indeed, do use airport assistance. It makes a great deal of difference, and some airports here are miles and miles long and wide. It can be a very long trek, especially with luggage.

Have a great stay!