Advice for future treatment of GCA /LVV

[5lupins]

I wrote last week to say I had to have urgent PET scan as ESR 49 and CRP 10. Also letter said true iron deficiency. I expect to hear from consultant early next week, but as there is a “ difficult lead consultant who I dislike I want to be prepared….”

I am on two and a half prednisolone daily a now back to 10mg of methotrexate weekly. Getting a bit worried this week. as I spend most days alone I try not to worry. Have the new meds worked for anyone without too many complications?

It is thirteen years since I was first diagnosed and was very ill at the time. Luckily no eye problems but pet scan showed full body inflammation.

Hoping you are all enjoying a sunny day. Thanking you . J.

[Rugger]

Maybe the best thing is to try not to worry, but wait for the result of the PET scan and see how it compares with the previous one, so you know what you're dealing with.

Last year I got down to zero pred, then was started on Methotrexate 15mg weekly, as a precaution. I had no side effects, but it didn't seem to do much for my PMR / GCA-LVV, which re-surfaced 8 months later. My Rheumatologist stopped the MTX and put me back on 5mg pred. After 5 months at that dose, I'm just starting to taper again.....

The years are passing by - 'only' 7 since diagnosis for me!

Enjoy the sunshine in your lovely garden. 🌹

[5lupins in reply to Rugger]

Thank you Rugger. I felt so confused and heavy headed about everything yesterday . I just couldn’t think straight. We all have to learn to be patient on this site but there are other questions that the Pet scan will answer.

Beautiful day here and my garden in its wild state is full of bees. 🤗

[springeramber]

Hello

I have not contributed for a while because I am confused about my treatment - I was on Methotrexate for a while but I hated it - felt nauseous the day after I had it - I have been on tocilizumab for over a year and it is fine but i cannot get down to below 3mg although the consultant is one of the 'lets get you off variety' - I also have LVV detected by a pet scan and I had severe anaemia which was eventually sorted with an iron infusion but they took their time getting round to it!! Please push for an iron infusion it worked like magic. I am hoping I get another pet scan to check the LVV

Good luck - push for what you want its your body not theirs

[PMRpro Ambassador in reply to springeramber]

What is the problem at 3mg? Is it the adrenal function being slow or is it symptoms? GCA has 3 different mechanisms creating the inflammation, it is reasonable to assume that so does LVV. Only one of them is controlled by TCZ - you need pred if the other two are involved.

[springeramber in reply to PMRpro]

MY adrenal function is fine =I am interested in the 3 mechanisms is there any info on that? I am also looking up rheumatoid arthritis as my finger joints are swollen and extremely painful- I am due an appointment with the rheumy soon

[PMRpro Ambassador in reply to springeramber]

It is a tad heavy - don't know your science background! But I think this is very good - just found it when looking for the rather simpler mention I usually use

ncbi.nlm.nih.gov/pmc/articl...

They mention t-cell involvement, and that IL-17 and anti TNF factors are also causes of inflammation - but they are minor contributors for most cases I think, Minor or not, they are not managed by tocilizumab/Actemra and continue to produce inflammation which can also build up if not controlled by appropriate medication. You can't use 2 biologics and most doctors in the UK seem to hope MTX will do the job - jury is still out on that and it is high time NICE approved TCZ properly.

But 3mg of pred is minimal - Prof Dasgupta told us in a webinar during Covid that he often kept patients at 2-3mg as it reduced the incidence of relapse.

[springeramber in reply to PMRpro]

Sorry I did not thank you for the info - I have a Chemistry degree so most is beyond me but i found some bits interesting thank you

[5lupins]

Thank you for your reply. Going for urgent brain and aorta mri soon. Pet scan did not show lvv as before so everything in the ether at the moment. Consultant is being thorough but it still fees like I was 13 years ago. Just resting and keeping calm for now.

Glad you are much better. J 🌸