HI Everyone,For those of you that have the same condition as me I can update you on my progress.I had a PET CT 3 weeks ago with a view to reducing Methotrexate if I had improved.Just had my results back today and it’s fairly good news.This scan shows an improvement on the one I had 2 years ago but there are areas of concern.There is some inflammation in thoracic and brachiocephalic.The first refers to aorta in chest and the second is the blood supply to the liver.No signs of PMR.Because of this small amount of inflammation the rheumatologist recommends staying on 15mg until next review which is in January 2025 when I will be 3 years along.I am taking this as a positive and maybe the next 10 months will show more improvement.Light at the end of the tunnel.
GCA.LVV part 4 : HI Everyone,For those of you that... - PMRGCAuk
GCA.LVV part 4
Excellent news. I have GCA LVV too and had my scan in November 2022. I’ve not had one since then. Did you ask for the scan or were you offered one? Did you have any symptoms of LVV? I can only tolerate 7.5mg of methotrexate and my year long Tocilizumab is about to run out. Just curious as to whether I should be pushing for a follow up scan or whether I will be offered one in due course.
Hi Noni71
In answer to your question no I was not initially offered a scan until I asked if I could reduce my MTX as my bloods had been consistently good.The doctor said a scan was the only safe way to check if LVV was present or improved,the bloods would not do that.When I was diagnosed I had no symptoms and felt really well as I do now. The big change for me was reducing from 20 to 15mg MTX and taking them late morning instead of after breakfast.All the nausea and most of the fatigue disappeared.Do push for a scan it’s important to know what is going on.
Hi OB and Noni. I also have GCA, the LVV type. It’s good news re the improvement in inflammation. That’s why we have the treatment we do. Inflammation in the blood vessels is bad news as you know. I had my first PET CT in 2020 which diagnosed LVV in the aorta and the subclavian arteries (these feed the head and neck with blood supply). Since then I have had my one year of Tox (in UK ), I’ve been on MTX which was changed to Mycophenolate. I started Sarilumab end of 2022 as a replacement for Tox. Another monoclonal antibody. I have had multiple flares since stopping Tox plus two small (luckily) strokes linked to the LVV, hence changes in meds. Pred dose has been up and down obviously. Sometimes back to 40mg other times lower. I had symptoms again end of last year, fatigue, night sweats, loss of weight, so had another PET CT in November 2023. This showed improvement compared to 2020 scan but still patchy inflammation throughout aorta. Not in subclavians. So I had Rituximab infusions in January.
Sorry for long post but just wanted to say it is important to be body vigilant and report symptoms for two main reasons 1. To reduce symptoms which can be very debilitating and 2. To prevent more serious consequences in the future e.g. aneurysm etc. I’m just glad I’m getting good treatment in a London hospital now. This wouldn’t have been available at my local hospital.
Sorry- this isn’t a lecture just hope it’s informative. You may well know all this anyway. The other thing is LVV can be silent, no symptoms, which I worry about. I don’t think there is an exact pathway for scanning in LVV but I would think a repeat scan, despite some risk, is probably wise after 2-3 years. Just my opinion.
Good luck and keep making progress 👍😀
Thanks for that. I felt really poorly before diagnosis but felt better fairly soon afterwards apart from the horrific side effects of Pred. Absolutely no symptoms for LVV and for me that’s the worrying bit! Had an adrenal crisis whilst on holiday in Majorca which was very traumatic and just had the beginnings of a flare of my GCA this month. Just went up slightly with the steroids and it seems to have abated. I go to a local hospital and the treatment has been excellent. The rheumatologist is on the ball and his team of nurses are at the end of the phone whenever you need them. BUT I have found that all of this has had a profound effect upon me mentally and I have periods when I’m really down and others when I’m very anxious. It’s very difficult explaining to friends and family why. I just keep on trying to enjoy myself day to day but am resentful that I doubt life will never revert back to how it was before. Keep on improving Kafkaontheshore and Oxfordboy2!
Yes it has had a profound effect on me too. I had to stop work and it greatly affects my QoL. I’m a positive sort of person so do what I can within my limits but have had to give up a lot compared to friends of a similar age etc. have to go with the flow I guess. Good luck going forward 🤞🏻
How are you getting on with the Sarilumab? have you found much difference from the Toc?
Hi Sharitone. Well it’s better than nothing. I was better on Tox but obs in UK can only have the one year currently. When I stopped that I felt awful and flared. I’d say the Sarilumab has been helpful but as I said above I still have inflammation present. I might just be a stubborn case though. I have tolerated it well. Fortnightly injections and no side effects for me. 😀
You notice a difference then? That is known with the biologics but I suppose it could work both ways and be better than TCZ ...
Hi PMRpro. From experience, and looking back at my ‘journal,’ I was better symptomatically on Tox but of course didn’t have a scan at the end of it so don’t know what it did for my inflammation. Now it’s a case of trying to keep inflammation as low as possible as a preventative thing 🤪
That's sounds like you're saying that the Toc was more effective than the Sarilumab?
Yes I think so. But I’d rather have Sarilumab than no other IL-6 blocker
A perfectly reasonable conclusion - but the price isn't that different so why not let the patient have the one that suits them best?
Thanks for your reply which is very informative and I do appreciate it.It’s good to hear of others stories as it seems there is no clear cut treatment for this disease and its very much up to which rheumatologist as to your treatment.As you so rightly say there are no markers to alert you to this disease as there are with Pmr.I personally could overlook it completely as apart from ageing each year I do not feel as if anything is wrong.Good luck to you also.
thank you for this information I have been trying to get a PET scan but can’t seem to convince any doctor to order it. I have PMR and GCA. Why did your doctor feel it was important for you to get? What was going on? GCA issues? Thank you..
For me it was because I was having symptoms despite treatment. Fatigue has been my worst symptom. I’m 63 so not young but not ancient and I can only really do one thing a day and then can just potter around and rest. They can’t order PET CT scans with no good reason as there is some radioactivity involved so it’s weighing pros and cons.
And long long waiting lists for an expensive test!
I didn’t have to wait long actually for either of them
Must be improving some then.
Hi Plains, Although I realise this disease is serious I did ask my rheumatologist if he could get me onto the lowest dose of MTX which would control my condition.He suggested the PET so he could compare it to the first one I had in 2022 I had no issues just hoping I could take a few tablets less.
Forgive my ignorance here but is MTX a steriod. I have been on Prednisone for almost 9 months and it is messing up my liver and other organs. I am also on Actemra which I understand isn't readily available everywhere.
Hi Abby 78
No MTX is not a steroid but it still suppresses your immune system. It is used along side steroids to help you reduce said steroids. It is also not without its side effects. It works for a small amount of people but doesn’t suit everyone. I have only ever taken steroids and methotrexate on their own so have no experience of taking them together. You could try your own post on this as there are many members on here who have been down this path.
No it's not a steroid... used in Rheumatoid Arthritis but sometimes in PMR to help reduce the steroid more quickly Actemra is not authorised for use in PMR in the UK, and only occasionally for GCA.
If you are on Actemra without any limitations then MTX isn't really of much interest to you. Actemra is also certain to work, MTX works for a small proportion of patients. If pred is messing up your liver function, which isn't that common, the MTX will probably do it even more, Liver function must be monitored consistently when you are on MTX.
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