MRI Scan Contrast Agent Issues

jamieA

I had an MRI scan of my hand yesterday morning first thing after I had been referred by an orthopedic consultant. I've had a number of MRI's before but cannot remember ever having had a contrast agent injection. I was in the scanner for over an hour and about half way through I was injected with the contrast agent. When I came out I was a bit unsteady on my feet and after an hour or so I started a blinding headache which hasn't gone away 24 hours on. By yesterday afternoon my joints started aching and that hasn't gone away either. This morning I googled the MRI scan contrast agent - gadolinium - and lo and behold side effects include dizziness, headaches and joint pains. I've been popping high strength cocodamol since last night to no avail.

Has anyone else encountered this?

stickywicket

No problems but I did have a hip scan a month or two back and was told beforehand they might need touse the contrast. Apparently, it just gives a clearer picture. Like you, ages in, they repeated the whole thing with the contrast but, unlike you, I had no reaction (though I was warned some people do, but not what happens). I hope it wears off quickly but don't take chances. 111 is always available. I wish you well in every sense.

Trish9556

Hi @jamieA

I've had lots if mri's both with and without contrast and never with any side effects.

I'm surprised you weren't told in advance that you would be having contrast and even more surprised that you were not warned of possible side effects

I hope you are feeling better this morning but if not please contact 111 as priority.

This obviously needs to be added to your records as a severe reaction for the future.

Love n hugs

Trish xx

jamieA

Hi @Trish9556 @stickywicket

Thanks for your responses.

The only reference on the appointment letter to what they refer to as a 'contrast agent(dye)' is with regard to Female Patients and if they are pregnant or breastfeeding. There is no detail of what the agent is or any possible side effects. When I was being prepared for the scan a nurse inserted a cannula into my right arm and injected a saline solution. I asked what that was for and was told it was to open up my veins - there was no mention of a subsequent injection. I was too disorientated after half an hour in the scanner to question the medic who came in and injected the agent half way through the scan.

I haven't slept well this last two nights - though that may be due to the heat and humidity. However the dizziness has been at it's worst getting out of bed and getting up from a seated position. I've also still got a blinding headache and my joints are still aching more than they were previously and it's all over not just the joints normally affected by my PsA. I've read a few medical articles yesterday that state most of the agent should be flushed from your body after 72 hours and to drink at least 8 glasses of water a day during that time. I'll wait till tomorrow and see if the effects have lessened and if not contact my GP.

stickywicket

Thankfully, you're a sensible chap and will do what's necessary. I'd actually be more concerned about the headache than the joints. Have you checked your BP?

I can understand them not going into detail about potential side effects as I think not many get them but also many of the worried well will decide they have them by fretting about them. However, I think my hospital's approach was a much better one all round.

Take care.

jamieA

Hi @stickywicket

Thanks for your concern. I have checked my blood pressure and it's normal.

I do understand what you are saying about people being worried unnecessarily and that the majority get no side effects. However it is a toxic rare earth metal that can remain in your system and can seriously affect people with kidney issues. It's also been shown to cause inflammation due to the increase in the TNF alpha cytokine after injection of gadolinium based contrast agents. My biosimilar is the anti TNF alpha adalimumab which blocks and neutralises the TNF alpha cytokine. I think I might be lucky that my adalimumab injection day was Thursday - the day before my MRI.

I think I'd have liked to be told what the process was and what potential issues were of the contrast agents use. I was referred for the MRI by an orthopedics consultant who in turn I'd been referred to by rheumatology as they determined my hand issue was now 'mechanical' in their words. The orthopedics consultant obviously hadn't read my medical history as he assumed I had RA when I spoke to him at my consultation. Similarly on Friday the nurse who put in the cannula and went through the pre MRI questionaire had never heard of psoriatic arthritis - he actually asked me if I could spell it for him to note down. At no time was I asked what drugs I was taking.

stickywicket

I'm pleased the BP is OK and take your point about the kidney issues. Might it be worth asking the hospital (well, all of them really) to have a marker system for referrals of those more likely to have issues?

I think it bad that they didn't appear to notice your post-scan wobbles.

As for '-psoriatic' - for years they tried to make mine psoriatic as my Mum had psoriasis. It wasn't. But, re lack of info, virtually every time I was in hospital when I was on penicillamine, I was offered penicilliin on at least one occasion. Stay alert. Stay alive!

Trish9556

Hi @jamieA

I'm glad you're feeling better. May I suggest you put in a complaint to the hospital? What they have done us dangerous and careless. No drugs should be administered without knowing what you have and what you're on and the fact they assumed you had RA and the nurse hadn't heard of PsA makes alarm bells ring. You have been lucky. The next person they di this to might not be

I have two personal experiences to share, both if which could have been fatal and both malpractice.

My at the time 11 year old son was rushed into hospital with food poisoning and given, without anyone asking, for his history, penicillin. He wasn't allergic but that's not the point. They didn't check

The second case my husband went to a and e with a small wound that was a couple of days old. Swollen hand and a red line halfway up his arm. Sent home with a marker pen line and told if the line gets any longer after a week to go back. Within 24 hours rushed back and advised he had sepsis. Immediately send to theatre. Dr and surgeon who treated him that time was furious with the first Dr who was very lucky to keep his job

We all know that drs and nurses generally do ab excellent job but some dint and some cost lives..if these aren't made aware if their mistakes, like anyone, they don't learn by them so please, fir the next person, complain.

Love n hugs

Trish xx

jamieA

hi @stickywicket and @Trish9556

Just a quick update on this - unfortunately from my hospital bed. I called my new GP Monday and was seen in the afternoon. While she was checking me over my blood pressure spiked at over 200 systolic and my pulse went tachycardic. So she called the hospital and had me booked in. I had a CT scan of my head at 01:30 Tuesday morning and I’ve been kept in since. A doctor has just confirmed the scan is clear. He also thinks it’s plausible I’ve had a reaction to the contrast agent so I’ve to keep drinking copious quantities of water to try to flush it out. I’ll be seeing a rheumatologist tomorrow and they’ll continue to monitor me. Hopefully I’ll get home tomorrow.

Trish9556

Hi @jamieA

You have certainly had a rough ride with the contrast agent and I hope you are able to get home tomorrow. Apparently there is an alternative that uses Manganese which by all accounts is supposed to be safer and non-toxic. I'm not sure how freely available it is in the UK, it's deemed suitable for patients with kidney disase so should be widely available? Might be worth checking out with youro doctors for next time. As a side note I've also seen that people with asthma so I might have to double check next time I have one as this has not been mentioned to me in the past.

Hope you feel better soon

Love n hugs

Trish xx

jamieA

Well I’m still in hospital - awaiting another MRI scan this time of my head. The consultant I saw yesterday did a whole series of tests and said I had an intention tremor on my left side so wanted an MRI of my head to rule out a mini stroke. He did agree that it seems I’ve had a reaction to the contrast agent so the scan will be done without the contrast agent.

The good news is the headache has lessened considerably and the joint pain has gone. I’ve still got a slight balance issue but it’s not as bad as it was. My blood pressure is back to normal.

The strange thing about the joint pain was it was worse in my finger and toe joints. I couldn’t bear the weight of bed blankets on them. Seemingly it’s the extremity joints that are most affected.

jamieA

Well I finally got out of hospital last night after 8 days. The MRI scan of my head showed no issues and my discharge letter refers to the fact that this happened after an injection of the MRI contrast agent but doesn't draw any conclusions.

I did a considerable amount of reading on this subject whilst in hospital and all of the side effects I have experienced - balance issues, severe headaches, joint aches and high blood pressure - have been documented in peer reviewed published medical papers. As well as this what's also been documented is the significant increase in TNF alpha levels in laboratory tests on animals. Considering my biosimilar is the anti-TNF alpha adalimumab I think that that should be noted.

For me I think without doubt the contrast agent was the reason for this and I'll be ensuring that I don't have this procedure if in future I need another MRI. I appreciate I'm probably in a small minority who are affected like this but I do think patients should be made aware of possible reactions.

Trish9556

Hi @jamieA

I'm glad you're feeling better and managed to get discharged.

I hope it is noted on your record for future reference should you be unable to confirm your allergy in an emergency. Maybe though it might be worth investing in a medic alert chain/bracelet? It's peace of mind and I'm a firm believer in if you have something you won't need it. I had one in my teens while I was suffering with temporal lobe epilepsy and without it, my parents would've worried every time I went out

Love n hugs

Trish xx

jamieA

Hi @Trish9556

Thanks for your concern. I contacted my local health board to raise this with them and to try to ensure that this is noted on my health records. The only way to do so was to raise a complaint - so I've done that. I detailed what happened at the scan - including the fact that I'd offered my list of medication to the nurse prior to the scan because it was obvious they did not know my medical history. This wasn't looked at and indeed the nurse didn't know what psoriatic arthritis was and asked me to spell it. I was asked what outcome I would like and posted this :-

What I’d like from this complaint is the following

1.     A suggestion in the appointment letter that patients should not drive themselves to these appointments in case of the side effects of the contrast agent.

2.     A clearer statement on possible side effects of a contrast agent injection.

3.     A better understanding by staff administering these contrast agents of patients pre-existing conditions and existing medication.

4.     A note on my medical records stating I’ve had an adverse reaction to an MRI contrast agent and that in future if I require an MRI I should not receive a contrast agent.

Trish9556

Hi @jamieA

Well done for putting in the complaint. I hope you get the answers you need and don't have to wait too long for a response and that they take the necessary action. However, knowing how long the NHS take to respond to complaints, it may be worthwhile sending a copy to your MP who may need to chase them up if you've heard nothing within a month

Love n hugs

Trish xx

jamieA

Just an update on this as I've received a reply from my health board complaints department.

1. Patient information from the manufacturer of Clariscan (the contrast), contains a section relating to driving and using machines. This section advises that there is no data available on the effects of Clariscan on the ability to drive and this guidance was taken into consideration when developing the MR appointment letters.
2. Various different types of gadolinium-based contrasts are used, dependent on the investigation required, and examinations for the same body part can even use different contrast agents. Due to the limited space on appointment letters, it would not be possible to print out all of the information relating to possible side effects caused by each contrast used for each examination. However, each dose of contrast contains a detailed leaflet provided by the manufacturer which can be supplied if required.
3. Your queries have been discussed with the staff member who scanned you, who recalls a discussion with you when inserting your cannula, prior to the examination and remembers explaining that saline was being injected to keep your vein open, but unfortunately cannot recall if they discussed the injection of contrast. Saline is injected through a cannula to ensure that it is sited correctly within the vein for the injection of contrast during the examination. 
4. Unfortunately, the imaging department were not notified by the referrer or the rheumatology clinic that you may have had a reaction to contrast. I can confirm an alarm has now been entered onto the Radiology Information System detailing your reaction to MR contrast and that this should be discussed with you should you require a MRI in the future.

So the manufacturer has no data on whether driving is affected so the health board does not include this on their letter. There are many different contrast agents used so there is insufficient space on the letter to print the possible side effects. The staff cannot remember whether they talked to me about the use of the contrast agent. At least they have now put an alert on my records regarding my reaction to the contrast agent.

Trish9556

Hi @jamieA

That response sounds as much use as a chocolate teapot!

Have you put in a yellow card against the contrast? If you Google yellow card medications a comes up which goes on a national system. Sorry, I had forgotten I was told to do this when I had a severe reaction to one of the covid vaccines.

With response to (2) maybe they should routinely give out the leaflet to all patients, not just those who ask for it, as us routine, for example, with other vaccinations, covid jabs etc? They could even send the information sheet out anyway with appointment letters as well as at the appointment.

Will the alert against your name be accessible nationally or just locally? Different authorities use different systems and some are unable to access other authorities information.

It seems to me also that your note (3) hasn't been responded to properly as they've just replied they weren't aware you had had a reaction previously unless I have mus read your item (3) in your complaint?

Overall it sounds like they are fibbing you off in my opinion?

Love n hugs

Trish xx

jamieA

Hi @Trish9556

Funnily enough I did a search this morning on Clariscan drug interactions and on both drugs.com and drugbank.com they list it interacting with Verapamil which is one of the heart drugs I'm on. So I've responded to the email pointing this out. I actually carry a note in my phone with all 8 drugs I take and had offered this to the nurse that did the pre-scan check but he did not take me up on it.

I'll look into the yellow card submission as I really don't want this happening again.

Arthuritis

@jamieA @Trish9556 This is one of the situations where the American system is far superior (far from perfect but superior) in terms of patient safety. Their fear of litigation that would arise from our bumbling shambolic approach that relies more on luck and probability rather than careful PROVABLE computerised elimination of contradictions ensures that this would not happen, and if it did, they would be able to prove they did everything that they could to avoid an adverse outcome. In the UK drug interactions and contraindications rely on you being lucky that your attending medics have know every medication you are on and have cross referenced them. This virtually never happens in practice. While on MTX I was prescribed penicillin based antibiotics, all contraindicated even on the UK doc’s bible, (BNF), but not one medic checked against that. They just sent the prescription orders through the nhs electronic order system, which itself could easily have been programmed to automatically check against the BNF, a trivial task for a computer, but never implemented. Like a nhs booking system, such projects are simply “not big & sexy enough” to pursue, and instead the nhs wastes millions each year on failed IT projects (sometimes Billions as in the famous 10bn write off), over staffing where it’s not needed and having to pay out for repetitive cockups that could have been avoided, each time claiming “lessons have been learned” by the relevant trust, but never have, and certainly not shared. Quite the contrast to the US practice of weekly Morbidity & Mortality conferences at all major hospitals where all medics have to attend while mistakes are presented and discussed in excruciating detail. (Not having an M&M process would get a hosp shut down and it’s leaders facing court). Yet the NHS remains a sacred cow that cannot be reformed or touched, and the UK med community looks down on both US & EU medical practice because we are somehow “superior”. US gets derided for being commercial, yes it is, but it makes them sharper, success makes profits, failures make losses, and that focus ensures they will always be streets ahead looking for solutions eg automated checks and preventing lossy failures. During the pandemic despite the Italians and French sharing their dire experiences including distinctive symptoms like loss of smell, UK NICE & NHS failed to list those for months… because it wasn’t discovered here… I think we need Trish’s Mylar common sense hammer applied frequently and generously to NICE & NHS LEADERS… who are all over £100K in salary but not delivering.

jamieA

Hi @Arthuritis

The contrast agent I was injected with (Clariscan or gadoteric acid in it's generic form) isn't listed on the BNF. I did however take @Trish9556 advice and report it via the yellow card system. When looking at the yellow card system for this agent I came across quite a bit of information including reported issues by year. Here's a screen scrape of those results - you'd think someone would be questioning the significant trend increase in reported side effects.

I appreciate this does not give context of use - they may well be using it more but it is quite a startling graph.

I did send a follow up communication regarding the listed interaction with verapamil on drug.com and drugbank.com. The response I got was that the manufacturer does not list any interactions and so the case is closed.

Trish9556

Hi @jamieA

I find it totally unbelievable but yet hardly surprising, that because th e manufacturer doesn't list any interactions they have closed your case! How many notifications does it take before the manufacturer, or NICE, take any notice of these notifications and investigate it. I wonder who is responsible for making the decision to follow up on these apart from the manufacturer because somebody needs to!

Love n hugs

Trish xx

Arthuritis

@jamieA Agreed, contrast and other specialist drugs/materials won’t be in the BNF as it’s mainly for GPs, hospitals and consultants who are supposed to do their own risk assessment that can override BNF anyway as they are expected to have a risk mitigation plan if things go awry. What I do know is that patients chaperoned by another consultant or a lawyer get treated a lot better, as there is a high chance litigation will stick and won’t be the hospital consultant’s word against a lowly patient. (I know this from talking to senior consultant medics that this happens). If they fear the prospect of a negligence case and a hefty pay out they are a lot more careful, it only has to happen once, and the manufacturers and consultants will amend for that specific product, but not become more careful in general (UK).

In the UK people aren’t litigious and don’t like to cause a fuss, allowing bad practice to flourish at the patients’ expense. Even when there are cases brought to court, it’s usually the hospital trust that pays the full cost, whereas in the US both hospital and the consultant are liable and can be bankrupted. Really bad cases of course can both result in prison on both sides of the pond, but multimillion or unlimited claims are not the done thing here.

jamieA

Hi @Arthuritis

Funnily enough one of the first reports I came across when trying to find out if what happened to me was a one off was an article about the American actor Chuck Norris 's wife. For whatever reason she had 3 MRI scans in one week with a gadolinium based contrast agent (GBCA) and suffered serious consequences. She subsequently sued 9 different medical services involved from the doctor to the manufacturer. However the case was eventually abandoned as the costs were prohibitive. Large pharmaceutical companies come with expensive lawyers and if you lose you pay all costs. There doesn't appear to be any appetite for investigating side effects of these GBCAs either side of the pond. I was quite taken aback by the graph I posted above at the sheer level of increase in reports on the yellow card system for this GBCA - and that's only one of them there are multiple others.

So my advice to anyone going for an MRI is to ask the medics if the contrast agent is a necessity - maybe it's simply to speed up the procedure. It's strange that I had a GBCA for a hand issue but when they thought I had possibly had a mini stroke they could do one of my head without it.

Trish9556

Hi @jamieA

Funnily enough, although not for me, I spent 70 agonising minutes in the MRI machine having scans of my hips, lower back and pelvis yesterday. I wondered if they would pull me out for injections as I was in so much pain and I was wondering what I would say if they did to pass the time lol.

Luckily, or not, they didn't. Not a total experience I would like to repeat in a hurry. I didn't reach a decision either but as I'm not on as many meds as you and it's never been a problem before I don't suppose I would've raised any objection but I certainly would have listened carefully to what they said but this post just stuck in my head lol.

Love n hugs

Trish xx

Arthuritis

@jamieA I completely agree on the unfairness of paid “justice”. In that sense it’s worse in the US, but all the same, sometimes the Goliath giants do lose even to David, but that is so rare that it gets to be made into films😔(eg Erin Brockovich)

However consultants and hospitals don’t have the pharma’s super deep pockets, and if caught early before being backed into a corner where there’s no choice for them but to fight, they prefer to avoid court, and they do take notice of patients taking careful notes and or having a chaperone and behave better in order to avoid a litigious consequence on both sides of the pond.

@Trish9556 Were you in pain because of the awkward position in the claustrophobic MRI cavity? The MRI itself does not cause any pain unless you have recent metal implants, which would have excluded you anyway. I have metal but have been ok, just bored as time passes slowly in those things and you have to keep still. And knowing you have to keep still means that dreaded itch decides to make itself known at that time! I am happy you did not get any gadolinium or other metal contrast injected!

Trish9556

Hi @Arthuritis

I was in pain before the MRi and thought it would've been over quite quickly and stupidly didn't dose up with my tramadol.

What made the experience unbearably painful was a heavy blanket type thing that was placed over my hip/pelvic area which stayed in place for the whole 70 minutes. The thing just seemed to increase the pain I was already feeling. I've never had anything like that used on me before and don't particularly want it again!

Love n hugs

Trish xx