MRI or Cat Scan contrast & PMR/GCA

[Hindags]

I was referred for an MRI by my physical medicine doctor. When the radiology Dept called to schedule I asked if it would be with contrast and was told, "no". It was scheduled for today at noon.

At 9am this morning I was called by radiology and admonished for not having had the blood work needed for the MRI since it was ordered with contrast.

I hurried to the lab and had the tests thinking the appt person had probably given me the wrong info. My physical medicine doctor went on vacation the day after my appt and won't be back until next Tuesday so I couldn't check with her.

But at the appt time, when I was already disrobed, I found out that the MRI technician said that it should have been ordered with contrast so he had gotten the clearance from the radiologist to include contrast. I asked if the contrast would interact with Pred. I asked what the risks were...the usual itch or maybe nausea. I signed the consent and they proceeded as planned. The first 75 minutes were without contrast.

Inside an MRI there's nothing to do but think and almost immediately I realized that I hadn't asked the most pertinent question, whether the radiologist who added contrast to the order knew my medical history, that I had PMR, vasculitis.

When they ended the first session and wheeled me out to start the contrast infusion I asked that question. The technician said he didn't know. I said I wasn't comfortable doing the infusion if no one familiar with my PMR history could reassure me that it wouldn't put me at risk for a flare.

Everyone was very nice about it. I probably was overly cautious, but I had to make a judgment call. In the absence of any knowledge.....I said,",No".

All those 75 min I was wishing I could ask you guys for help deciding what to do. Really, I kept seeing myself at my computer posting this very post.

Is anyone familiar with the safety of contrast infusions for MRI when under treatment for PMR? I don't remember it coming up here.

[HeronNS]

What an interesting question. I suppose the experts are sleeping as it's the middle of the night. But I did find out that prednisone is actually used to help prevent allergic reactions in people who have that tendency. And this: whatispolymyalgia.com/tests...

I hope you are feeling okay now? Will the results of the scan you did have be sufficient, do you think?

And I'm off to bed because it's the middle of the night here now. 😴

[Hindags in reply to HeronNS]

Thanks do much for your reply. I'm feeling ok. I didn't like the last minute change of plan...standing there in a hospital gown...I don't make decisions quickly when I can't assess the risk/benefits.

The MRI was ordered because I've developed some intermittent pain/tightening between my shoulder blades. A new gift if time or PMR or Pred. Just want to know if anything more interesting/sinister is going on.

I hope the got enough to know if they have to redo.

I wish I asked the right question before I got into the machine. If they need to redo they'll have to start from the beginning because the no contrast and contrast segments have to have the exact same positioning.

[SheffieldJane]

I just woke up and had a quick peak. I had a recent MRI scan with contrast to look at my blood vessels. It was definitely ordered and administered. Some folk have trouble with the contrast fluid itself but at no time was it suggested that I shouldn’t have contrast because of PMR or any of my meds like Prednisalone. This was discussed on here a few months back on the forum. They should have known the answer. Sorry you may have to have it repeated. X

[SheffieldJane]

Here : healthunlocked.com/pmrgcauk...

2 months ago 42 replies.

[Hindags in reply to SheffieldJane]

Thanks for the link. I must have skimmed that discussion without digesting it.

I wish I remembered....but I didnt. I made the right decision for me at the time. Just probably the wrong decision.

[Hidden in reply to Hindags]

Better safe than sorry. It can be done if needed. I would have gone through same dilemma I hope. By that I mean I might not have had the mental doodahs to even ask the question. Sometimes I am like a lamb to slaughter with things like that.

[Hindags in reply to Hidden]

Me too. I don't change course very easily. There I was standing in one of those wrap around gowns, my stuff locked away, unable to phone a "friend" because no phones around MRIs.....I signed the consent and immediately regretted....

[Hidden in reply to Hindags]

Standing half naked in a strange room sort of makes you submit to the process. You had lock all your personal things away feeling vulnerable. You did better than I would!

[Hindags in reply to Hidden]

Thanks for understanding. I felt like an idiot.

[Hidden in reply to Hindags]

Like I said above safe not sorry is a good approach when we are all struggling with various health issues. 🌻

[Jamie345 in reply to Hidden]

yes I agree, with so much going on to think about as well .

[Pat9442]

I had MRI and CT with contrast. Never even gave a passing thought to Pred or PMR. No effects from it at all. Sometimes we have to get on with life and stop worrying about what MIGHT happen

[PMRpro Ambassador]

It sounds as if you might have some myofascial pain problems - nerve tingling and sore muscles between my shoulder blades are a common feature for me. If it is muscular even an MRI will show nothing.

The probable reason you haven't heard much talk about MRIs in PMR is that getting one in the UK is like finding hen's teeth! SJ had a good reason for one but for PMR it wouldn't generally be requested unless there were other concerns.

I don't think that PMR or pred themselves are any reason not to have contrast - but to order it without proper informed consent on the part of the patient is rather naughty. There are medical reasons to avoid contrast - and it sounds as if they didn't ask you specifically. As for whether anything would or would not cause a flare, I doubt it is possible to give an informed/100% accurate answer.

What I CAN say for certain is that contrast-enhanced MRI is used in the diagnosis of vasculitis. And they should have had someone there who knew that to answer that part of your question.

[Hidden in reply to PMRpro]

I often wondered why. Surely MRA or Vascular CT would be better for any vascular disease? I also get to hear that ultrasound is not too great to check arteries. Could spinal arteries be checked by ultrasound if you don't mind me butting in? TUIA.

[PMRpro Ambassador in reply to Hidden]

"I also get to hear that ultrasound is not too great to check arteries" - I can't image ine why anyone would say that. It depends what you are looking for - the u/s technique for looking at the temporal and brachial arteries in particular is excellent for identifying the signs of GCA and preferable to a TAB. And u/s is used to scan the carotid arteries to identify blood flow and blockages - and many other larger arteries too. Good surgeons may use u/s to track the position of the temporal artery - a relatively small artery - before biopsy but also other arteries.

Horses for courses - it all depends which blood vessels are affected and how. PMR is a vasculitis, part of the spectrum that includes GCA and some large vessel vasculitis (LVV), but you will never see anything on any form of imaging. u/s will image large vessels well, but you could search all day for the tiny arterioles and arterial side capillaries. Arteries vary in diameter from more than 1cm (the normal diameter of the aorta, the largest artery as it leaves the heart is 2cm) to as little as 0.1mm. And if all arteries, veins, and capillaries of the human circulatory system were laid end to end, the total length would be 60,000 miles, or 100,000 km. So you could assume that there may be about 30,000 miles of arterial vessels.

[Hidden in reply to PMRpro]

Thank you, PMRpro. Fascinating.

I looked it up last night thanks to your medical presence. In GCA, I notice that vertebral arteries could be affected, instead of carotid arteries or as well as carotid arteries. Someone I knew (with GCA - working in medicine herself but forced to retire due to the condition) had a whole body V scan for larger arteries, and her Dr was extremely thorough.

[Hindags in reply to PMRpro]

Yes. There should have been someone to ask. There probably would have been had it not been all so rushed with a call on the day of etc. Up until the time I was standing in front of the tech and the MRI machine, I thought my physical medicine doctor had ordered the contrast so I was Ok with it. She is well aware if my PMR.

Thank you for your reply. Might well be myofascial pain but it has been more spasmlike than my other myofascial pain. Takes my breath away when it hits. And I've found myself having trouble holding my shoulders back and head up.

My back is an advertisement for what you don't want your spine to look like at any age

[PMRpro Ambassador in reply to Hindags]

I sometimes get stabbing short spasms while changing position which stop once I have moved - it depends which bit of muscle is affected.

[Nap1 in reply to Hindags]

Yes me too. I went from 5.7.5 to 5fi 5 inch in a very short time. I could be a walking ad for what you don’t want to happen to your spine and so take fosamax or prolia etc.

[HeronNS]

I think under the circumstances your decision was absolutely the correct one. The mere fact that the people doing the procedure weren't able to answer the questions, the fact that you hadn't been given enough information ahead of time, and some of what you did get was inaccurate, these are very good reasons to stall the procedure. The reason you needed the bloodwork was, I believe, to make sure you have good kidney function. My stepmother had an operation (heart?) where some dye was used but they didn't check her kidney function beforehand. So although the operation was a success she spent the rest of her life having dialysis three times a week, more than negating any benefit from the operation. Sometimes the Universe leads you to the right place.

[Celtic PMRGCAuk volunteer in reply to HeronNS]

Heron, I was sorry to hear about your stepmother’s appalling experience. Within months of an investigative scan with contrast in my undiagnosed PMR/GCA days, I was informed that my latest blood tests showed decreased kidney function (Chronic kidney disease). The jury is out as to whether this was as a result of the contrast or the undiagnosed, therefore untreated inflammation coursing through my body for so long, or the low dose Ibuprofen taken for several months. The rheumatologist who arranged the scan with contrast knew I had just a sole kidney and he knew I was taking Ibuprofen so he really failed me on two counts - a medic who I heard worked with the Olympic team! Anyone with a kidney issue should not receive contrast.

[Hindags in reply to Celtic]

Celtic,

So sorry to hear about your experience.

[Celtic PMRGCAuk volunteer in reply to Hindags]

Hindags, doesn’t it just confirm that you made the right decision in opting out of the contrast until you had the answers you wanted - ‘when in doubt, leave out’! Your pain between your shoulder blades reminds me of a similar experience I had during my PMR/GCA days. I was lucky to find a great physiotherapist who was familiar with PMR and the need to treat gently. He found that the muscles in my shoulder blade area were knotted and he carried out gentle massage, heat treatment and ultrasound. The result was complete resolution within three sessions. Like you, I also found it difficult to hold my head up and shoulders back. This was aggravated by the swelling (‘camel’s hump) that is so familiar to those with PMR, but it resolved at the very low steroid dose and I remember it being quite a revelation when I suddenly discovered that I was standing quite straight again! I hope you soon find a resolution for your pain.

[HeronNS in reply to Celtic]

What a terrible experience. Does this mean you also were not checked beforehand? How are things with you these days? These are things laypeople simply don't know - we wouldn't even know what questions to ask. Like Donald Rumsfeld's unknown unknowns. "...As we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don't know we don't know."

[Celtic PMRGCAuk volunteer in reply to HeronNS]

You’re so right - often we do not know the questions we need to ask. But is it too much to expect those caring for us to “know”, or is that just in an ideal world? Thank you, Heron, some years post-PMR/GCA, I’m doing ok. My kidney function causes a few problems when it comes to needing medications plus my body likes to be dramatic with side effects! I’m being monitored regularly........and I question everything! I do hope you are winning the battle with PMR - you’re a great asset with your helpful and wise replies on the forums.

[Hidden in reply to Celtic]

Drs can be cavalier about these potential risks on patients. If it was going to be done on their mothers or their children, they might have been far more careful. Their lack of concern over drug side effects always bothered me since many years ago. I would add to say, "except few good ones". It sounds utterly unacceptable.

[Celtic PMRGCAuk volunteer in reply to Hidden]

Exactly! The problem really stems from putting us all in the same box and treating us all the same, when, in fact, our bodies are all different - different presentations with one disease and different responses to medication. It’s so heartening when we do come up against those “few good ones”.

[HeronNS in reply to Hidden]

I come from a medical family and even that doesn't save you. The stepmother mentioned above re the kidney damage was a nurse. My father was a doctor and towards the end of his life he had an operation (lung cancer) where the wrong side was opened up, and had to be closed and the other set of ribs cut extending his time under anaesthesia by hours not to mention the extra damage and recovery.

[PMRpro Ambassador in reply to HeronNS]

We have both always said that if we needed surgery on one side of two options, kidneys, lungs etc, we would mark ourselves up in indelible marker pen the day before - including a "NOT HERE" label. Many hospitals do do that now but I want to see it myself...

[Nap1 in reply to Celtic]

You folks in Europe know this but we in the US Are first hearing about the damage contrast can do as a matter of fact, I am watching a program called 20/20 tonight which will go into the issues of contrast and kidneys and brain issues.

[Celtic PMRGCAuk volunteer in reply to Nap1]

Ooh, Nap, the programme sounds interesting. Do please let us know if anything exciting comes out of it.

[Nap1 in reply to Celtic]

Sure. If I can stay awake long enough I will take notes

[Celtic PMRGCAuk volunteer in reply to Nap1]

I’m just off to the land of nod - nite nite!

[piglette]

I had contrast for my CT scan, there is no problem with contrast for CT or MRI scans if you have PMR, except I had an allergy to it so felt fairly rough after it for a while.

[Hidden]

How frustrating! My Rheumatologist ordered a CT scan of my chest.... "query PEs." Just a precaution I'm sure, but I asked on phone if Contrast was iodine, as I am allergic. "No," was the answer. Showed up for scan, asked again, " Yes," was answer.... 😡 <<<< my actual face colour!

No scan that day... ball back in Rheumy's court to figure out no iodine contrast solution!

Of course if I do gave PEs I could die at any time! 😵

[PMRpro Ambassador in reply to Hidden]

Did they do a blood test first? For d-dimer? Do you have any symptoms?

"A normal D-dimer result less than or equal to 500 ng/mL fibrinogen equivalent units (FEU) on the IL D-Dimer HS500 kit has a negative predictive value of approximately 100% (range 97%-100%) and is FDA approved for the exclusion of acute pulmonary embolism (PE) and deep vein thrombosis (DVT) when there is low or moderate pretest probability for PE or DVT."

[Hidden]

🤔 I literally have no idea what you're talking about! 🤣

No, no blood test. I complained of constant cough, breathlessness, palpitations, lightheadedness, feeling like an elephant resting on my chest.

Had chest X-ray 6-9 months ago before GCA/PMR diagnoses, I think she just wants more detail of chest.....

[PMRpro Ambassador in reply to Hidden]

Possibly - but if she is saying it is to check for PE then FIRST she should do a simple blood test called d-dimer. Many hospitals would refuse to do the CT scan without a d-dimer result. If the result is normal the chances of PE are very very unlikely. And anyway it would stop you worrying it might be PE. THEN she can request imaging of whatever sort. But to do a CT scan is a big radiation load - and shouldn't be done without good reason. Not that that seems to bother doctors in the USA!

[Hidden in reply to PMRpro]

Hmmmmm. 🤔 Well since it wasn't done, because of iodine contrast, I shall ask! Thanks.

[Rimmy in reply to PMRpro]

'Big radiation load' - but when asked my OH's radiologist said usually 'only' equivalent to a long haul flight from here in OZ to the UK ... so they don't worry too much here about this either it seems !!

[PMRpro Ambassador in reply to Rimmy]

Depends on the scan they do, the longer, the more obviously. And it all mounts up - in the US there is considerable concern about the fact many doctors in the ER do head scans as normal on children who've fallen. Now I don't know about you - but most kids of my acquaintance would qualify for that at least once a month...

[Hidden in reply to PMRpro]

Medical professionals downplay this sort of stuff. I agree with PMRpro.

Why could they just be honest about stuff with patients, especially, when these are real risks? Do they want us to be naive and oblivious of what they are doing to us?

I was told chest X-ray exposure is a hefty dose (and that was commented by someone, who had a medical degree). Has anyone had a scan in nuclear medicine for GCA? You swallow radioactive stuff.

[PMRpro Ambassador in reply to Hidden]

health.harvard.edu/cancer/r...

A chest x-ray really ISN'T a "hefty" dose - it is towards the lower end of the scale, especially given one's natural background exposure is over 30 times higher, depending on where you live.

Comparison Doses:

Natural background 3.1 mSv ............. Domestic Pilots 2.2 mSv per year

Average US exposure 6.2 mSv/year ... 7 hour Airline flight 0.02 mSv

Chest x-ray (2 view) 0.10 mSv .............. Chest CT 7.0mSv

[Rimmy in reply to PMRpro]

Scary !! - probably the expense might deter many here ...

[Nap1 in reply to PMRpro]

True true. That’s why I like your medicine better. Your doctors seem to go more on the homeopathic side and less on the drug side. And in the states it is getting difficult to get an appointment with a specialist these days and the really good ones do not want to take insurance. So I have an appointment in New York when I get back with an Endocrinologist and his fee for the first visit is $850. There after it is $650. My insurance and Medicare are useless. The medical system is changing drastically. Hospitals are merging. Doctors are now employed by the hospital’s so they do not have to carry malpractice insurance which is a devastating number in most cases. I will pay the $850 and travel into New York city which will cost me another $120 for tolls and parking because I have many issues involving adrenals, thyroid, prediabetic, and this is a very important person to me. He does not have to see 2000 patients which is what the average doctor in the states need to make a good living. I will stop here because I don’t want to say anything I will be sorry for. But I guess you can tell how pissed I am at the system. With 2000 patients it’s no wonder they don’t even remember your name.

[karegodd in reply to PMRpro]

Before my PMR diagnosis back in 2012 I had a CT scan for PE’s here in Canada but it missed the PE’s. They were picked up by a VQ scan (ventilation/perfusion scan) which picked up the 4 PE’s. I was fortunate to have an extremely good intensivist who was like a dog on a bone with my symptoms. Of course I am now over reactive with chest pains which I was getting when I was on 30 mg of prednisone for the PMR. My rheumatologist ordered another VQ scan which was negative- significant peace of mind. I wonder if there is a correlation between the past PE’s and the present PMR. A clothing disorder was ruled out.

Food for thought.

I continue to learn so much from this forum - especially discovering that PMR is a vasculitis. It makes more sense to me with the symptoms.

[karegodd in reply to karegodd]

Oops. Clotting disorder

[Hidden]

What are they looking for on MRI with contrast for V patients?

[Hindags]

The reason the tech said the dept recommended contrast was on my last MRI, 2.5 years ago, pre PMR, there were two suspicious spots, neck and upper thoracic spine. They were followed and showed no change. Five radiologists looked at them and four pronounced them degenerative changes. The fifth said they looked suspicious until the follow up, six months later, showed no change.

When my physical medicine doctor sent the recent request for a new MRI she referred to these places as lesions. That rang all kinds of bells within radiology.

[Hidden in reply to Hindags]

😧

[Hidden in reply to Hindags]

"there were two suspicious spots, neck and upper thoracic spine"

Are you referring to white spots if you don't mind me asking this?

[Hindags in reply to Hidden]

No, more empty spots as I recall. The new pain isn't in that area, a bit lower.

[Amkoffee]

I can only speak for myself but I have had an MRI with contrast well I had PMR so from that I deduce that it's probably safe. Have you ever had contrast dye before? Because that is one question they ask me every single time.

[Hidden]

It is usually said, "contrast dye" is harmless. hmmmmm

[PMRpro Ambassador in reply to Hidden]

It is - under most conditions. If you have existing renal problems or have had an allergic response in the past, then it isn't. That is the same with antibiotics and most other medications, they shouldn't be used in certain situations.

[GCA1947]

Dear Hindags,

I am not sure if what I experienced is the same as yours. When I was referred to Heath Road NHS Trust to try to determine what was causing my extreme Liver Function Test results, something was injected into my right arm eventually which I was told would give me a funny feeling in my face and make me feel as if I had wet myself. I was told not to worry. I warned the nurse that trying to get anything into my right arm was fraught with difficulties although the veins are underneath my arm they are difficult to find, she would insist in trying to get the needle into my forearm. The bruise lasted for three months. In the end she pushed a cannula into the back of my right hand where the veins are prominent. The CT Scan/MRI that followed was inconclusive, and was the first of several such tests by the Gastroenterology Department. This has been going on since July 2017 and I've lost count of the CT Scans, MRI's, Fibroscans and Ultrasound tests. I know that the Consultant Gastroenterologist thought a gall stone had passed through my system and was the likely cause. Doesn't explain why the test results have started to go up again.

Best Wishes

Colin

[Hindags in reply to GCA1947]

Fortunately for me PMR and various muscular skeletal issues I've been OK. I've had that Cat Scan contrast infusion and am familiar with that "heat". Very strange feeling, but benign.

Sorry for all the complextities you have been facing. It can feel overwhelming.

[Nap1]

True true. That’s why I like your medicine better. Your doctors seem to go more on the homeopathic side and less on the drug side. And in the states it is getting difficult to get an appointment with a specialist these days and the really good ones do not want to take insurance. So I have an appointment in New York when I get back with an Endocrinologist and his fee for the first visit is $850. There after it is $650. My insurance and Medicare are useless. The medical system is changing drastically. Hospitals are merging. Doctors are now employed by the hospital’s so they do not have to carry malpractice insurance which is a devastating number in most cases. I will pay the $850 and travel into New York city which will cost me another $120 for tolls and parking because I have many issues involving adrenals, thyroid, prediabetic, and this is a very important person to me. He does not have to see 2000 patients which is what the average doctor in the states need to make a good living. I will stop here because I don’t want to say anything I will be sorry for. But I guess you can tell how pissed I am at the system. With 2000 patients it’s no wonder they don’t even remember your name.