Hello Everyone, It’s been about a month since I asked about a PET scan and the likelihood of underlying GCA, as suggested by my Rheumy. Well I had the PET scan last week and she called me yesterday to say that it showed a couple of things she’d like to discuss with me. I wanted to get your opinion about medication so that I am armed before I go. She said that the scan showed inflammation in blood vessels ... that was one thing, and that I have a swollen gland under my arm (who knew?). I asked her if she was thinking GCA re the blood vessels and she said perhaps, but she wants to change my medication!!!! I am freaking about this because I have heard so many different opinions about alternative medications on this site. There is one starting with M ... methotextrate or something? Another beginning with A. I am currently on 10/9.5mgs of pred and feeling no pain, just mild stiffness in the morning which is really nothing to be honest, however my CRP was 110 and ESR 57 after several weeks reducing from 15 to 10mgs. What the hell is going on?? Can you please arm me with questions that you think I should ask? It’s 8.30am here in Western Australia at the moment, I don’t see her until 11.20am tomorrow. Always grateful for your advice, thank you.
Medication advice ...: Hello Everyone, It’s been... - PMRGCAuk
Medication advice ...
Take questions with you and a pen for answers. Lots of questions that you are asking us. Concerns about Methotrexate and other steroid sparers. Was the other one Alendronic Acid for your bones? Do a bit of research on these drugs and questions will emerge. What the hell is going on? Is a reasonable question. I am in a similar situation following and Ultrasound Scan. My treatment will have to wait a few weeks. Make your own mind up about drugs, some people sail through. Let us know what happens. I guess I have the same to face soon. Good luck. X
Thank you Jane. To me it seems strange that the inflammation is so high when I feel relatively OK. Yes, I will ask her about the drugs, but if she is prescribing then I guess she will be pro. Poor you, having it hanging there is a worry, but then if you are managing then that is the main thing. Thanks for taking the time to respond. Xx
I am relieved that in February my Temporal Arteries were clear. I know that I am not being treated with Methotrexate because of increasing vulnerability to Covid 19. I am alert ( I hope alert enough) to the classic Temporal Artery symptoms. I have adjusted to lockdown. My OH goes out occasionally for provisions - the biggest risk factor for me I guess.
My Rheumatologist is a big fan of Methotrexate and says “ ask any Rheumatologist, they would rather take it than Pred. .I sleep a lot, which helps most things. Currently on 3 mgs Pred with an emergency stash.
3 mgs of pred ... Jane, that is my dream. So glad that your temporal arteries are clear, that must be so reassuring for you. You are so lovely, thank you for your reassuring words about Methotrexate. I will see what unfolds tomorrow and I have heard your advice. Take care. I will probably report back tomorrow. Xx
Hi,
Did she comment in the swollen gland? That could be some of the reason why your inflammation markers are high - they aren’t just specific to PMR/GCA - so don’t let the Rheumy assume they are. Ask her about that.
As Jane says she may be talking about Alendronic Acid - if so check if necessary ask for a DEXA scan to check strength of bones and signs of osteoporosis.
She might also mean Actemra (not sure if used in Aus) - no experience personally - but others might - seems to be used more in US than UK . Also known as Tocilzumab - look it up.
Sorry DorsetLady, I did reply but I see that it didn’t go through. Thanks for this information. She is going to explore the gland thing further. She mentioned that scans like this often show up unexpected things but this is one worth following up. She was more concerned, I think, about the blood vessels. Yes, I think Actemra is the one she mentioned, but also methotextrate. I’ve done a bit of reading, not too keen on more drugs but she’s the expert I suppose. Thanks for your supportive advice, as always.
I really don't see how it is possible to predict what she is going to say - and I doubt anyone would expect you to make a decision on a change of drug there and then. Apart from anything else, all the things you have buzzing through your head require screening tests to be done first and you then have time to think about it and ask questions then.
If she thinks it may be GCA in the form of LVV, large vessel vasculitis, then she is possibly considering Actemra/tocilizumab. It is possible that she is looking at methotrexate - but it may not be. Stop panicking about it, take a notebook and pen, or, even better, record the conversation on your phone. Tell her you need to do it to be sure you have it right and she shouldn't object.
I’m not panicky, just want to consider which medications she may have in mind so that I can do some research before I see her. My main fault is that I haven’t prepared in the past, and having learnt so much here, I do have an idea of what she might be thinking, if she does, in fact think it is GCA. My research today has taught me that methotextrate is often used in RA patients. There has been some research done on its use with pred in PMR. I have read on here that many patients find the side effects worse than pred, but the literature suggests that it is more gentle. I don’t know ... just looking for a bit of info. Thanks for your advice.
Everyone reacts to mtx differently and really you do have to try it before you reject it. But using mtx alongside pred for GCA and using tocilizumab for GCA are very different approaches and you have to know what is being suggested and why before going further. THAT is the question to ask once you know what she is offering - the rest come afterwards.
Sorry if you don't like the word panic - you were the one who said you were freaking out and that is the same thing in my vocabulary.
I don’t mind the word panic ... that is why I used it! I have had the PET scan, in case you missed that bit, so there won’t be too many more screenings to be done. Thanks again for your advice.
Blood tests, dexa, perhaps further scans....there could be lots of tests and screening processes.
No, I’ve had bloods, bone density, CAT and now the PET. She’s armed with a plethora of info ... but thanks.
Before you start new meds they always like bloods at least done again and then done at least every 3 months.
No - the screenings are blood tests and stuff to be sure whatever drug they want to use is safe for you - they are all a bit hard on the liver so that must be monitored. I have been exposed to TB in the past (OH had it years ago we were told recently!) so would need other tests and abx for months if I wanted to try tocilizumab and TB must be ruled out first in anyone. And yes, I knew you had had the PET scan.
OK, so more blood tests ... I do have them done monthly but if she wants some more then I will, of course, have them done. Liver has been good, which is always a surprise for me because I love wine and have been drinking it for years ... not too much at a time, but frequently, well I am Australian! Hope I don’t have to give that up, it’s the only thing left, having given up carbs, sugar, fat etc. etc. Bloody hell, pretty soon I will have no vices left!!
Me too - keep thinking maybe I should have less but when you can't go out at all, it is a pleasure to have a G&T or wine that really tastes good. If I don't like it, I don't drink it - so it isn't the alcohol!
It’s a little bit about the alcohol I think, that is what makes it taste so good and makes you feel a little more relaxed. Anyway, hopefully we can continue to enjoy our drinks PMPro, small pleasure in the scheme of things.
I stopped altogether for the first two years of PMR. I now find that a little wine lifts me out of the flu type symptoms for a short respite. 🍷
My CRP and ESR were rising last year, for no apparent reason, so I had a PET scan which showed inflammation in my arteries = GCA/LVV - Large Vessel Vasculitis. My Rheumatologist asked me to consider Actemra/Tocilizumab, which I decided on. If I had declined Actemra, her alternative choice would have been Methotrexate. She gave me time to make my decision, but I needed numerous blood tests for the Actemra screening - TB, HIV, lipids, as well as the more usual blood markers.
After 5 weeks on Tocilizumab, I have more energy than in the previous 4 years since I was diagnosed with PMR!
Best wishes and hope the discussion with your Rheumy goes well.
Thank you Rugger. That is exactly what has happened to me. I saw my Rheumatologist today with the results of the PET scan and the diagnosis identical to yours. I had the blood tests today in preparation for Actemra. I am a bit nervous but she reassured me that it is far safer than Prednisolone. I have to wait for approval for the drug, which will take 3 weeks but in the meantime, she gave me two doses that I can begin if the bloods come back OK. She wants me to halt my tapering of pred until we see how the inflammation is responding. Are you on prednisolone?
I was nervous too, but decided that to have inflammation in my aorta and its branches was possibly more scary than starting a new drug to tackle that inflammation!
I had got down to 4mg pred for the PMR last year, but went up to 10mg to tackle the vasculitis from November until I started Tocilizumab in March. I also had to wait for approval. My Rheumatologist has asked me to taper the pred by 1mg every 28 days, so I am on 8mg just now.
I've just learned this morning that my liver function tests and CRP etc are fine after 4 weeks on TCZ, so onwards we go!
Make sure to stay safe and 'shield' yourself from Covid-19 - even more so if you start Actemra.
Thank you so much. You have really given me hope. With my CRP at 110 and ESR at 56, I really need to tackle it. I am so appreciative of your taking the time to share your story with me, it sounds like we are on similar journeys. Please take care, I will check back in a couple of months to compare notes and see how you are travelling.
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