Now on the LVV journey too

[Smellydog9]

I posted recently about being sent for a PET CT scan as I have leg claudication in addition to my usual PMR and GCA. Got my results and plan today. Scan positive in head, most of aorta, both legs and left arm. I expect my right arm feels left out 😀. Anyway, back to 60mg prednisone and consultant is applying for tocilizumab as long as new bloods and chest x-ray are okay.

I initially felt quite panicky with the results but I’ve had a good chat with myself. At least we know what’s going on and I can get treatment that may work better than the prednisone alone has done.

Anything else I could be doing to help the process? I’m on all the usual additional meds.

[SnazzyD]

Oh dear, let’s hope for onwards and upwards (except the Pred!) and I hope you get the biologics. Knowing where you stand is much better than being a medical mystery but I’m sure you’d rather not be either. Good luck. Keep us posted.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this -but as you rightly say at least you know what you are dealing with.

SheffieldJane and Rugger and others will be along I’m sure with their experiences.

I did post this recently- which may give you a bit more info -

healthunlocked.com/user/Dor...

[Smellydog9 in reply to DorsetLady]

Thanks. Yes I did see this and I’ve been doing some looking into LVV as the symptoms have been there for some time. All advice helpful.

[PMRpro Ambassador]

I wonder how many of us would fit into the same class! Quite a lot I suspect.

Never mind - you know now, can only get better.

[Smellydog9 in reply to PMRpro]

Let’s hope so. Thanks.

[Dochaz]

I'm a fellow GCA / LVV sufferer and wish you the best for your journey. A note of hope maybe... I have managed to reduce from 40 mg of Pred to almost 2 mg in a year and 8 months with a couple of minor setbacks on the way. No steroid sparers. I'm currently upping my dose by 5 mg extra for a few days because the drop from 2 mg to 1.5 mg was a step too far and neck and shoulders became stiff and painful, but I'm confident that I'll get past it.

Like PMRpro, I think a lot of us have undiagnosed LVV because it isn't looked for.

[Smellydog9 in reply to Dochaz]

Thanks for this. Glad you are doing well and it gives me something to aim for.

[SheffieldJane]

Gosh like Rugger, she said her inflamed arteries lit up like a Christmas tree, in the MRIMy LVV/ GCA was diagnosed by a vasculitis ultrasound scan the halo effect was spotted in my left armpit. I do have an issue with my Aorta too. I was glad to get a year of Tocilizumab as I got off the 40 mg Pred dose I was put on quite quickly down to 10 mgs. I am still lingering at 5 mgs after 3-4 years.. Fatigue, and lack of get up and go are my main symptoms. My latest Covid jab set me back a bit with PMR type pain and wobbly mobility. Watch out for your GI system, I believe my diverticulitis was caused or worsened by the Pred/ Tocilizumab combo. Always protect your gut.

Does the LVV in your head make your sight more vulnerable?

[Smellydog9 in reply to SheffieldJane]

Not sure about LVV and sight but I have had 2 episodes of temporary sight loss since GCA began so it’s a concern.

[SheffieldJane in reply to Smellydog9]

Presumably your doctors are all over that?

[Smellydog9 in reply to SheffieldJane]

Yes. Fortunately it has been temporary each time and regular checks with ophthalmologist not showing any scarring etc at present.

[LemonZest11]

Hi Smellydog, I too have LVV, diagnosed through PET/CT. That was back in 2020 but with the help of TCZ, I am now off pred. The taper took ages, I was cautious after a couple of flares, only reducing by .25mg towards the end. TCZ was a game changer for me and I hope it will be for you, however not everyone has had a positive result, since we and our disease are all different. I hope for the best for you. 🙏

[Smellydog9 in reply to LemonZest11]

Thanks so much for this. I’m definitely going to take it slowly now.

[LemonZest11 in reply to Smellydog9]

Good for you!

[Rugger]

Just off to my PMRGCAuk support group, but I'll write soon.

[Smellydog9 in reply to Rugger]

Thanks

[Sharitone]

Have lots of rest. Protect your sleep as far as is possible. Never even look at the vacuum cleaner.

By the time you get TCZ you will have come down the pred ladder a bit and with TCZ you will probably get lower than ever before. Almost exciting!😀

[Smellydog9 in reply to Sharitone]

This is very helpful and gives hope that things will settle. I’ve felt rubbish since going back to 60mg of prednisone but some of the stiffness and aching is better. The sleep thing is tricky but I was a lifelong shift worker and my sleep has always been poor. I can manage with not too much though which is good. Thanks

[Rugger]

I was diagnosed with PMR in 2016 and then developed claudication in my legs in 2019. A PET-CT scan showed inflammation in my aorta and all its branches (including both my arms!) 😀. My Rheumatologist started me on Tocilizumab, which obviously targeted the cause of my GCA-LVV and I felt really well on it. I was fortunate to benefit from the TCZ extension during the height of Covid in 2020 - 2022, so had 2 years of TCZ which enabled me to reach zero pred. 6 months later, the PMR symptoms resurfaced, so the 'remission' had been temporary. I started pred again in January this year and 10 months later I am tapering to 1.5mg. There seems to be some light at the end of the tunnel!

Like you, I feel reassured that I know what's wrong and have excellent treatment to manage it.

Best wishes.

[Smellydog9 in reply to Rugger]

Thanks so much. All the best to you too.