Does LVV ever go away?

[Sharitone]

I have been told to expect to be on pred for life, as well as TCZ. I am just wondering whether anyone with the LVV variation has ever been known to ride off into the sunset?

[PMRpro Ambassador]

I think they probably have - not least because no-one ever discovered that they had it in the firrst place!! Quite a high proportion of PMR patients have either LVV or GCA but their only symptoms are of PMR and nobody looks.

[Sharitone in reply to PMRpro]

But is it possible that the ones with sneaky GCA and LVV are the ones that remain on pred for years and years?

[PMRpro Ambassador in reply to Sharitone]

Not sure. Mine has gone on for years and years but a PET-CT a couple of years ago showed nothing in the arteries. I think they are the ones who struggle at higher doses maybe although sometimes it doesn't appear until they get to a lower dose and don't feel "right".

What I think does contribute to a longer course is not being diagnosed and treated quickly or being messed about with being forced to taper too fast and developing flares. One theory about that is that the body learns to expect pain and other symptoms and the immune system also learns bad habits and so the disease process doesn't burn out and it doesn't reset if you see what I mean.

[Sharitone]

Thanks. Not sure whether that's good news!

[Grammy80]

Hi, I've been on pred and TCZ since 2019. Presently I'm on 2 mg plus the weekly injection and feeling good. My rheumy has already said he will have me continue the TCZ if I get off the pred. I have one friend with GCA who could not get off 1mg and has taken that for 22 years. Personally, that would be fine with me. Another GCA friend (86) hasn't taken pred since 2018 but takes TCZ every other week. At one point is was monthly for her but her PMR kicked in. My philosophy is that we are all unique and will have to do what works for us. Any steroid damage has long been done and at 83.6 years of age, I'll do whatever it take to continue as I am. My best...💞.

[Sharitone in reply to Grammy80]

Thank you, Grammy, that's good to know.❤️ I just want to be hopeful, but in a realistic way. I've just asked the Rheumatology nurse whether TCZ was likely ever to be reduced, and she didn't know. She thought the ongoing DF was down to the disease rather than the meds.

[piglette in reply to Sharitone]

Sorry to be stupid but what does DF stand for?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Deathly fatigue?

[piglette in reply to DorsetLady]

Thanks. All I could think of was Dengue Fever!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

😲...

[Sharitone in reply to piglette]

Dengue Fever caused by PMR? Now that would be a subject for a PhD student!

[piglette in reply to Sharitone]

😆😆😆

[Grammy80 in reply to Sharitone]

Hopeful and realistic....super approach. Those two words will get you doing the most that you can without overdoing. As far as TCZ reduction...time will dictate most of what we do. Since she thinks the DF is the disease, take it easy...and remember you are passing through that stage to the next.💞

[LemonZest11]

I'm trying to ride off into the sunset, but I have fallen off my horse a few times. I have LVV and PMR. I'm in my 5th year of TCZ jabs but off pred for one year this weekend, not that I've been counting!!! I have managed to stretch my TCZ jabs to 4 weekly and I feel well, but I am reluctant to cease because I feel the disease is still active. I may have Stockholm Syndrome, captive to the disease, but just hanging in while I am still able to access TCZ. But I can see the sunset in the distance 🐎

[Sharitone in reply to LemonZest11]

That's really encouraging, thank you. Good luck!

[Oxfordboy2]

Hi Sharitone,I hate to be the one to say it but I think we may have this for life.I am just starting year 3 of LVV and my rheumatologist thinks I will be on MTX for 4 years in total.There is so little known about this disease and almost no meaningful research.As there is no cure that’s why I come to this conclusion.Lets Hope I am wrong but good luck to you.

[PMRpro Ambassador in reply to Oxfordboy2]

GCA burns out and goes into remission almost all patients. So does PMR. Why should LVV be so different?

[Devoid]

Hi I’ve been off pred for a while now but I’m still on Toc . They did try me with no medication but I was symptomatic in just a matter of weeks and ct scan showed active vasculitis. No problems just on Toc .

[Sharitone in reply to Devoid]

Not even tired?😮

[Gangley]

Hi Sharitone: Yes it is possible to ride off into the sunset - I am. Was diagnosed with GCA in January 2023 and after 9 months of prednisone and 11 months of Actemra, my last Pet Scan said the LVV has resolved itself. Not sure how long the "sunset" lasts but I am hopeful. My Rheumy said she was very surprised with the results. So now we wait!

All the best in your journey.

[PMRpro Ambassador in reply to Gangley]

Good to hear!!!

[Gangley in reply to PMRpro]

Thank you.

[Sharitone in reply to Gangley]

That's great news. I just wish she hadn't been so surprised! Fingers crossed for you.

[Chrisellie]

hi

Yes

I was on pred reduction and 12 months of weekly Tocilizumab injections at home.

All details in my profile but myPMR,GCA and LVV went by the end of the 12 months injections and treated overall from diagnosis for about 16 months total.

I was one of the lucky ones.

Always stay hopeful if you can.

Good luck