Don’t know if you remember that I recently had my second flare in succession and took myself back up to 15mgs pred from 6.5mgs, with a CRP of 96 and ESR of 65. Five weeks later both have come down, though still high (CRP 57, ESR 39), after tapering to 12.5 and then 11, and now first day on 10mgs pred. So the thing is that I saw a new rheumy today who thinks there might be something else going on because she thinks my markers should have settled after over 5 weeks above 10mgs pred. She wants me to stay on 10 for another 2 weeks, repeat the bloods and if they haven’t returned to a reasonable level, undergo a PET scan. She said that blood vessels can be closely examined, along with other things and that there could be underlying GCA. I don’t have any symptoms, except perhaps dry eyes, but she seems to think that it can be there without other obvious signs. Do those of you who know so much, think that she might be on the right track? I was just going to continue to taper using the dead slow method.
After another opinion from the experts here ... - PMRGCAuk
After another opinion from the experts here ...
I would stick with her advice until scan done and results received.
She may be correct in thinking something else is going on, you would expected the markers to have reduced a bit more than they have.
Have you had a cold, virus or stress to make the markers run high? Or as it’s your second flare in a short period, maybe you’ve just gone below the level you really need. Whatever a few weeks at 10mg may be beneficial - disappointing as it might feel.
Thank you DL. I have only just made it back to 10mgs so not too worried about another 2 weeks, in fact I was planning the dead slow taper which would mean that I will be hanging around at 10 for quite a while anyway. I haven’t had any illness or stress so not sure about the high markers but was really just wondering if you thought a PET scan was a good thing. I guess you do and thank you.
I’ve never had one, so not sure exactly what it will show - but any test to find out what’s wrong is a good thing surely.
Please let us know how things go.
She’s going to be looking at blood vessels apparently, but lots of other things can be explored too. Thanks, I will let you know. By the way, I told her about my taking the dose at 2.30am ... she was gobsmacked!! She asked me if I have tried taking it later in the morning to see if it is makes any difference and I told her “of course, that’s why I do it”! I think she learned something from you today!
It's like they don't know how inflammatory processes work in pmr/gca isn't it! 😉
You can say that again!
I got down to 8mg first time round Nd my crp was higher than at diagnosis... Back to 15mg for weeks and then very slow taper. Got to 6mg in 3 years. There may be some tho g going on but you may be someone who needs longer at higher doses. Hope fly 2 weeks at 15mg may help sort it out to some extent but I wa above 10 for almost 2 years.
Thank you Scoopitup, I take all the great advice from this group and it has helped me so much. Xx
I have had a PET Scan for those reasons too. Although all kinds of factors can cause a rise in CRP, even the common cold. Are you feeling well? Symptoms do rule, even if they aren’t typical GCA symptoms.
It is a privilege to be offered these expensive investigations. I welcome them. Good luck!
Thank you Jane, yes, I think my new rheumatologist is trying. I love this group, it feels so comforting to be able to chat with people who know more than the “specialists”. Xx
To be honest - once you have the date for the scan I WOULD continue reducing because the lower the pred dose, the better the chance of them finding something! A study did say "even" 10mg could suppress the signal.
I have a PET scan next Tuesday and the rheumy said to try to get to 10mg but that I could leave it until shortly before to do so. I was at 17mg at the time and reached 10 a couple of days ago - and yesterday I felt awful! Things I had almost forgotten from when it all started! Last night I took 11mg and the difference is unbelievable.
I do think a PET scan is a good idea - and maybe this is the beginning of them acknowledging PMR is often rather more than they think it is because a few of us have been offered them recently. It will show up any inflammatory foci - shoulders and hips especially in PMR but, in our cases, they are looking for the large arteries in the trunk being inflamed.
PMR pro What does that mean, arteries in the trunk? Why would they look at that? Are there some kind of symptoms that would make it need to be done?
GCA also affects the large arteries around the heart and lungs and supplying the legs and arms - hence looking at the brachial artery into the arms.
ncbi.nlm.nih.gov/pubmed/285...
You can see how the arteries are "lit up" in some of the images here. The radioactive glucose is taken up by the inflamed areas - and show up on the CT scan.
Wouldn't you think more rheumies would order such scans to build the knowledge and research base up. Interesting.... Maybe I should stick to pictures..
I would - but it doesn't work like that!!!
Crikey. Thanks.
My new rheumatologist said that they are incredibly expensive, we only have one machine in Perth, so they need a good reason to order a PET scan.
The machine itself and 1 year maintenance etc costs from $300K to $500K - plus the running costs, staff and disposables. And the isotope is on top.
Wow. Well I have another 2 weeks on 10mgs, then the blood tests and after that a few weeks for a booking so I had better sit tight and be patient.
I had to travel from Dunfermline to Dundee for mine.
I was on 40 mg at the time and had been on that for about 3 weeks. The aortic inflammation plus others still showed up though.
Someone (don't recall if it was on this board) posted a website on the amount of investigative radiation exposure (risks) and benefit ratio for the whole body PET scan.
It could be on the fb. People as we grow much older, we naturally worry about this sort of thing. It's easy for the doctors to suggest it but I was unsure. They never seem to care to bring up the risks and we, patients, go to other patients sites to inform ourselves...
It would be useful if the medical community would invent radiation-free PET. I can usually tell if my vessels are flaring. But I guess the doctors would want an "objective measure" from "Do No Harm" point of view...
From what I have read, radiation is minimal with a PET.
I believe this is fairly a relatively new concern amongst older patients.
Whilst I am not a PET/imaging basher (I seem to have to have these over the past few years), I ought to educate myself more re. risks. The link shared on another board (FB) is:
health.harvard.edu/cancer/r...
I hope it helps.
I suspect most people in the UK rarely have more than the odd xray and for me getting scans has been difficult to the extreme. It has taken 10s of visits to the Dr's post surgery for prolapsed discs in 99, to have a further mri for the constant pain, sciatica and numb tingling arms and legs. Since 2006 when I had to leCe work at 46 I have asked. Finally in Dec I had one which found several areas of trapped nerves, as well as further damage below and above the surgery. I finally got some meds that are starting to help the pain. Almost 15years if pain, 2 Dr surgeries, 3 physios and Levels at 8, 9 and 20 (yes that's a number and a suicide number at that) . Reduced in2 months to 6 and bearable with the dosage still going up. Without a scan I would still be a bucket case. So I am all for the bits and bobs of radiation if the result helps treat the patient. I don't fly anymore so no radiation there, I covered up so much I had vit d deciency.tbe main take I took from that article was there wasn't much to worry about.... Research into the impact and new techniques will hopefully keep pace. Looking through the body and inside the body is contained by our understanding and manipulation of the laws of physics. Hard to push against those. Let's face it there are particles going through space and matter we don't fully understand so it may be a way down the higgs boson line... There may be a song about it. 🤔😉
And I had contrast ct in November too. Glad I had that and the referral was efficient...
The radiation load associated with the PET part of the scan is low. The radiation load associated with the CT scan depends on the type they are doing, the general scan is fairly low but when they do detailed scans for accurate diagnosis it is higher. But since those sort of scans are to diagnose potentially life-threatening/changing things such as cerebral bleeds or cancers the benefits must outweight the risks.
Background radiation depends on where you live - a lifetime in Aberdeen will have exposed one to quite a few equivalents of a CT scan.
I’m not going to let concerns about radiation deter me. As you say, weight up the benefits with the possible risks ... I want to know, if it is possible, what is going on with my crazy body. The PET might provide insights or at least rule out other suspicions. Not happening for a few weeks so will report back later on that.
Unexplained symptoms need investigation. It's not like you just woke up one morning and thought I think I will have an x y z scan today. The article is not as negative as some interpretations so I am pleased you are not letting it put you off. When it's needed it adds to the body of knowledge as well as knowledge of your body. I have had, dexa scan, xray, ct scan and mri in the past 12 months which have all enhanced the quality of my life vis a vis reassurance, diagnosis and treatment. Now. Today. 👍🌻
Thanks Poopadoopy, it's comments like yours that offer encouragement and reassurance to members of this group who often struggle for answers.
I hope so. I do try and do research and apply them to the real world. So I really appreciate your kind words. A large percentage come from asking pmrpro when I can. 👍🌻
I agree with you.
The link like this is worth reading when someone had posted. Sadly, I'm too lazy.
I ended up at A & E and had to have X-ray, had iodine contrast last Dec... You can't really say, "no" as there is no easy radiation free option.
Timing for PET is usually, as far as other patients and I experienced, before the treatment (diagnostic) then another, after the treatment (to see the positive change). Again, there's no other options to replace PET.
Would I care to have another whole body PET this year?
No. My radiation bucket is probably full for me this year if it's not for anybody else.
I also noticed that it all depends on who/which Dr you talk to, their philosophy & attitude to try safer methods. A patient-centred one said, "CT chest gives you such and such radiation, do you still want to go ahead or do you want a less invasive test (US) instead, that will give us a good idea just as good?" I like that.
This goes back to the highly specialised ultrasound for GCA. Nothing beats directly looking at the inside of the arteries and it's non-invasive/radiation free.
That works for certain arteries - but u/s for the aorta is a different matter, And the time it would take to identfy ALL the areas that are inflamed is totally impractical.
Yes, thank you.
As for Aorta, MRI (non-invasive) is widely avail.
Cannot comment if MRI/MRA would be sufficient
for aorta.
Maybe, not.
I hope your PET scan went well. 
says "Ultrasound is of limited value for assessment of aortitis."
Interesting! "Aortitis".
Never heard of it before. . .
My believe system is geared towards "economy".
But if you/your Doc is determined...or would need to
investigate, then.....,
You would have to do what's "best" for you.
Your life, your body, your decision...
There is a totally new scanning unit in the final stages of construction at the second large hospital in the city. Hopefully that will speed peoe through and it will hopefully have a research centre with it.
Yes it does...
As far as I know the PET scan is the best/most accurate at dx of GCA, it can show any area of the body with ANY sign of gca. Consider yourself lucky you have access to that, here in B.C. Canada, unless you have a cancer dx, you cannot access the PET scan, period.
Thanks Pugrescue, yes I do feel relieved that I have a Rheumy who has a plan to investigate my soaring inflammatory markers. I also feel relieved by the wisdom offered by this group, such a forthright yet kind group of voices.
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