Sharing my first week on Pred

[Rabbit090]

I was diagnosed week before last with a large vessel vasculitis, which for all intents and purposes my consultant is calling Takayasu's arteritis but he says GCA and Takayuki are a bit of a spectrum in his opinion. Before the diagnosis I only had some intermittent claudication in the left arm and unequal blood pressure however several scans later and there’s stenosis and a “halo” appearance to my inflamed arteries.

Last Wednesday I started 3 days of 500mg methylprednisolone infusions. Those went well. I had a bit of a headache in the evenings that cleared by morning and a miraculous cure of a backache (which had possibly coincided with a new mattress) that had been bothering me for a few weeks.

I’ve had high blood pressure mostly controlled by lisinopril 2.5mg for at least 20 years so asked if I should adjust and the Dr said not to worry until I was at 160 since he didn’t want to risk restricting blood flow to my bad arm

On Saturday I started 60mg of prednisone and my arm claudication seemed like it was improving however on Sunday my blood pressure had skyrocketed to 187/110 so I got myself to Urgent Care where the duty doctor suggested doubling the lisinopril. He said my heart sounded fine and I had plenty of oxygen rolling around

On Monday spoke to the consultant who recommended 7.5mg of lisinopril and to take readings on my ankle as my arms are likely not that accurate. Assuming ankles are +15-20 higher systolic it seemed like BP was better. At least not so scary. Last night I also had what seemed like an ocular migraine: zigzag lights across my visual field which went away in about 10 minutes. I also got zero minutes sleep and had the driest sinuses all night.

Still, I’m very anxious about it and am very nervous about checking my BP! Today I’m feeling tired-ish with palpitations and my jaw when eating feels a little tired as well. Or maybe I’m imagining that!

Otherwise, I’m being so so good I think. Drinking 2+ liters of water, carefully watching what I eat (no simple carbs, no added sugar, no added salt, lots of veg and lean meats). I’d love to exercise but I’m too worried.

I’m hoping all of this is just “settling” into Pred. Otherwise, I feel pretty decent - just my normal hypochondria on steroids (as it were).

[DorsetLady PMRGCAuk volunteer]

Hi,

I’m somehow missed replying to your first post… but guess I was either still travelling back from NZ or recovering from jet lag.

BP does have a habit of skyrocketing with Pred, but as you can reduce the Pred, it should settle back down to a more acceptable level.

I found my headaches and jaw claudication took a couple of weeks on 80mg to settle as well.. so hopefully yours will as well. But do mentor things, and obviously if not happy then seek medical advice.

You might like to have a look at these [from the FAQs] and there is a more info in there- when you feel up to browsing -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk....

[Rabbit090 in reply to DorsetLady]

Thank you so much! Everything I read said symptoms should resolve in days so I was wondering if I was some crazy anomaly.

[DorsetLady PMRGCAuk volunteer in reply to Rabbit090]

Don’t believe everything you read- apart from on here of course!😊..-and no you’re not some crazy anomaly- but you’d be in good company if you were..

Just monitor things and ask if you’re not happy- we’ll tell you pretty quickly if you need to do something…

[Rabbit090 in reply to DorsetLady]

You are all amazing, it must be said and so happy I found this place!

[LemonZest11 in reply to DorsetLady]

Hi there DL, I'm heading to NZ tomorrow, for the first time and I'm really looking forward to it. Where are your family?

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

On the south island - not far from Methven - and the mighty Rakaia river is but a stone's throw away!

Im home now - back to the cold and wintry northern hemisphere!

[LemonZest11 in reply to DorsetLady]

Oh wow, we’ll be passing right there, on our journey from Christchurch via Tekapo to Queenstown. We’ll be traveling all around the South before we head north. Funny what you say about the weather … NZ is quite chilly compared to our 30C+ days here in Aus. I’ll look out for the mighty Rakaia!!

[PMRpro Ambassador in reply to LemonZest11]

You two really should have compared notes on dates!!!

[LemonZest11 in reply to PMRpro]

Agree!! It would have been sensational!! I will just have to be content to walk in her footsteps.

[PMRpro Ambassador in reply to LemonZest11]

😂

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Ha, ha... well you will as you're going to places I know, and have walked ! .. and if not working sure my daughter would love to have a chat and offer a cuppa! No matter how tenuous our connection...

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

You will - imagine you'll go through Rakaia - don't blink! .. and then on down to Ashburton, and the via Geraldine to Lake Tekapo. If you turned right at Rakaia - the road runs along side of river [cannot see it, as it's down in gorge] my daughter lives along there at a small 'village' called Barrhill - quite unique in its history.

A trip to the Rakaia Gorge is worth it if you have time, you get full majesty of river which you don't get in Rakaia itself ..

As my daughter used to tell all her foreign students [she was home coordinator in the past] the bridge over the Rakaia river on state highway1 just outside town is the longest one in New Zealand! [1767 meters/5764 ft] - and you should see if you can hold your breath when going over it! Or maybe not..

We went to Queenstown and Milford Sound in my last full week - fantastic. Some great eateries in Queenstown... but it is busy..

Enjoy...

[LemonZest11 in reply to DorsetLady]

Thank you. I will definitely be aware as we pass through and I'll send hugs and love to your family as we pass by. It's so peculiar that it's taken so long to visit NZ and our own Tasmania, both so similar in climate and hospitality I believe. Of course yoy can't really compare, NZ wins!!! But we Aussies did invent the pavlova!! xx

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

But we Aussies did invent the pavlova!! xx

Don't start on that subject.... 😒if you want to get out alive...

[LemonZest11 in reply to DorsetLady]

Haha, it happens to be true. But they can have Kiwi 🥝 fruit, which they stole from the Chinese 🤫

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

I'm not going there.... 😂🤣

[PMRpro Ambassador in reply to LemonZest11]

Well not ENTIRELY true. Apparently NZ had the first name for the concoction but Oz claims the first recognisable recipe. However - MY suspicions of a Germanic- European origin were also confirmed.

abc.net.au/news/2024-06-23/...

[LemonZest11 in reply to PMRpro]

No, not quite true, in fact, the other way round. Meringues are not pavlovas. As explained, the pavlova, as we know it today, was adapted from a merangue cake recipe by a chef who prepared it for the ballerina. Simple, undeniable and the truth. Come Downunder and I'll make you one!

A Christmas tradition!

[LemonZest11 in reply to LemonZest11]

And that’s settled 😄 🤣 😂

And on Australia Day 🇦🇺

[PMRpro Ambassador in reply to LemonZest11]

I said ORIGIN - didn't say it was the same.

[LemonZest11 in reply to PMRpro]

🤣 😂 😉 😜

[Purplegloss in reply to LemonZest11]

Well worth going to Skippers Canyon when you are in Queenstown.

[LemonZest11 in reply to Purplegloss]

Thanks Purplegloss, I'll keep that in mind!

[PMRpro Ambassador]

At least you have some answers now. As DL says - not everyone is bouncing symptom-free in a few days, especially with GCA and, I would imagine, Takyasu's.

I wonder if he is saying Takayasu's so he can introduce tocilizumab more easily - it is approved for it without the same hoops that apply for GCA.

[Rabbit090 in reply to PMRpro]

Yes, exactly that for the tocilizumab but also because I don’t appear to have the temporal or above the clavical symptoms (although they said they couldn’t really tell anyway as the brain is too noisy to see much on a scan).

Seems such an odd restriction.

[PMRpro Ambassador in reply to Rabbit090]

Tell us about it!!! Grossly unfair - and it is also available for inflammatory arthritis without the restrictions. Which doesn't quite seem to match with their pathetic excuse it couldn't be approved for longer than a year because the documentation didn't cover longterm adverse effects. I think it is ageism.

[Rabbit090 in reply to PMRpro]

Ohhh! That sounds plausible and quite unacceptable. My Dr seems unconvinced about the reality of the artificial line between the various large vessel diseases as well. Having read far too much, I do have to wonder about the confounding variables that might be skewing things.

[PMRpro Ambassador in reply to Rabbit090]

During the NICE process for TCZ, it was clearing not their intention to approve it and a close friend of mine piped up to say where she was sitting it looked like ageism since GCA is generally experienced by older patients who are no longer a financial factor in the workplace, Oh no, no, no they hastened to assure her, not at all. And a couple of months later - TCZ was approved with the silly limitation of 1 year. But it did get its foot in the door. No coincidence we felt.