CT scan with contrast,advice please

[lizzie47]

I was diagnosed with GCA in Dec 2016,a very up and down journey and have 2 vertebral fractures and trapped nerve.Because of feeling so unwell for at least 6 months,losing weight,tummy problems,feeling constantly sick I am having a CT scan with contrast tomorrow.I am sure I have seen posts over the time about the contrast used but of course I cant find them now! Could anyone please give me advice on the effects and why or why not I should have the contrast as I believe I could refuse it,I really do not want to feel any worse.Although this is my first post I have been following since GCA started and the advice and stories have helped me get through so far,thank you

[PMRpro Ambassador]

To some extent it depends on why they are doing the scan - some don't need the "dye", and different contrast media are used for different purposes,

This explains very clearly how and why:

imaginis.com/ct-scan/inform...

and they point out that the contrast is used for them to gain more information. They are aware of the downsides and risks of contrast and if they want to use it it is generally because the advanatages far outweigh the potential risks.

It will be explained to you before the scan and you will be told all the risks before you are asked to sign your "Informed consent". If they have any concerns they will do it without contrast - but it may make the interpretation less straightforward.

This is another site for patient information:

radiologyinfo.org/en/info.c...

Overall, contrast media are very safe medications - but of course, you always hear about the bad experiences and if you are the person it happened to, that 0.1% risk they told you about turned out to be 100%!

Probably the thing to be most concerned about is renal damage - but that is restricted to patients with existing kidney disease which they should know about.

[Nap1 in reply to PMRpro]

I broke out in hives at Mayo Clinic from CT dye. They told me not to use it again because it could be a worse reaction next time.

[PMRpro Ambassador in reply to Nap1]

Exactly - but they and you are aware of that.

[lizzie47 in reply to PMRpro]

Thank you so much for all the information. As the hospital rang me with appointment I have no written information to refer to so both links were excellent,thank you. I am such a wimp I get worried over the smallest of proceedures!

[Ruadh in reply to lizzie47]

There is much information regarding contrast dyes - 4 of which have been removed from use in Europe. I was damaged : Iatrogenic Lipodermatosclerosis. The resulting will be permanent. You can search the internet for information as well as the excellent group, edited by Sharon Williams : -

gadoliniumtoxicity.com/auth...

On December 19, 2017, the FDA issued an update to its Drug Safety Communication regarding brain retention of gadolinium-based contrast agents (GBCAs) used for MRIs. Despite mounting evidence that GBCAs leave gadolinium in the brain, bones, and other tissues of all patients who undergo MRIs with contrast, the ...

Damage may be sustained without kidney disease. If have a kidney problem, then contrast dyes are counter indicated.

Please take care with contrast, and do not be shy to ask as many questions as you wish - do not be 'pushed' into accepting Gd. Ah. See yours will be a CT scan. Then will not be using Gd based contrast (Gd/Gadolinium). You should be fine, but do ask questions. Drink plenty of water. Need to get rid of the dye - for some it can take longer than for others. Everyone is different. Go well -

[lizzie47 in reply to Ruadh]

Thank you for your reply.I am very pleased it was a CT scan reading your post,not so much to think about.Yes it all went well and have been drinking more water as you suggested.Thank you

[stellafmdm in reply to PMRpro]

I had a CT scan when i was in hospital recently, and they told me all the effects of the dye. To my surprise it had no effect on me at all! Great news!

[Celtic PMRGCAuk volunteer]

Yes, obviously you are at liberty to refuse the contrast if you wish but it is commonly used in order to get the clearest images possible and unlikely to cause side effects, or at least I haven't come across anyone who has mentioned side effects - maybe someone will prove me wrong. Occasionally, there are medical reasons why someone should not have contrast - in my case it is because I have just a sole, low-functioning kidney and the dye could cause further harm - unfortunately, I learned that too late and to my cost! Do seek reassurance from, and raise any concerns you may have with your doctor before the appointment for the scan. Just out of interest, you aren't taking a PPI such as Omeprazole by any chance are you? I ask because that caused horrendous tummy/bowel problems for me. I wish you well and hope that the scan will reveal the cause of your problems and lead to successful treatment.

[lizzie47 in reply to Celtic]

Thank you Celtic.I understand having read the threads that PMRpro I understand that the images could be clearer so I suppose that is the way to go.Poor you having a bad reaction that must have been rather worrying and frightening,I am a bit of a wimp at the best of times.Yes I will discuss my concerns when I get there as I was only given the appointment by phone this week.I take Ranitidine 300mg twice a day,I used to take one a day but GP upped it to see if that helped tummy,will speak to him about alternative,did you take anything else instead please? Thank you Celtic for your good wishes.

[Celtic PMRGCAuk volunteer in reply to lizzie47]

Lizzie, I took no other medication alongside steroids for the 5 1/2 years from 40mg to zero. I relied totaly on my diet which contained as many known anti-inflammatory foods as possible, plus a daily live organic yoghurt for my stomach - no further tummy problems after discontinuing the Omeprazole and Lansoprazole. Good luck with your scan and do let us know how you get on.

[lizzie47 in reply to Celtic]

Thank you for your reply.Unfortunatley with my fractures I have great difficulty standing more than a few mins to prepare a meal so I have to rely on 'meals for one' for my main meal plus most of the time fresh vedg and fruit which is rather limiting.I am going to read up on more anti-inflammatory foods to see what more I can do.I do have live organic yoghurt.Can you suggest a website on anti-inflammatory foods please? My GP seems to think I need the Ranitidine,which I presume is similar to Omeprazole and Lansoprazole but I think with your experience it is worth a try to do without.I started on 60mg 14 months ago and am now on 14mg,I have got down to 13 twice but had to go back to 20 twice now so am followind DorsetLady's plan in the hope I will get further down this time.Have had injections in my back 3 times but not worked so am waiting for another appointment to discuss way forward,I have osteoporosis and presume from what I have learned the high dosage of steroids in the beginning was the cause,I am trying to eat and take D3 to help with Risedronate which I don't want to take but as I already have fractures on balance rightly or wrongly I had to make a decision or I might never be mobile again.Its sometimes difficult to see anything but half glass empty! Thank you so much for taking the time to reply.Lizzie

[Celtic PMRGCAuk volunteer in reply to lizzie47]

I can so understand how painful it must be with spinal fractures to stand for any length of time preparing food. Reminds me of the days when either the PMR or the spondylolisthesis would be so bad that I would find myself sitting down to have a break from just preparing breakfast, so Heaven knows what it must be like with fractures as well.

To answer your question about anti-inflammatory foods, I didn't use any particular website. I researched generally and also learned more from a dietitian who came to talk to our support group some 6 years ago. My mainstays were oily fish (sardines - with bones, good for our bones), mackerel, salmon, trout, beetroot, avocado, garlic and turmeric. The dietitian recommended low GI foods due to high blood sugars being pro-inflammatory. These include oat based cereals, wholegrain/granary bread, noodles, pasta, basmati rice, pulses and legumes. Phytonutrients in plants, predominantly flavonoids, are anti-inflammatory substances and these are found in cruciferous vegetables, berries, soya, red peppers, tomatoes, beetroot, carrots, green and black tea and 70% dark chocolate. She further talked about herbal medicine and how some herbs are known to be good at reducing inflammation, such as turmeric, ginger, garlic, chilli, basil, cinnamon, rosemary and thyme, but stressed that care should be exercised and doctors' advice sought before taking Boswellia, Liquorice Root extract, Willow Bark, Cats Claw and St Johns Wort because of potential drug interactions. Margarine, corn and sunflower oils contain greater amounts of omega 6 fatty acids which tend to be linked to inflammation.

Hope that helps, and good luck tomorrow.

[lizzie47 in reply to Celtic]

Thank you Celtic for your very indepth reply.I have copied all the food and vitamins and minerals to help.As I cannot drive at the moment I have to rely on Sainsbury's on line shopping which is more limiting than going around the shelves but I shall start stocking up on what I can get.Scan of course went well and was very quick.Thank you so much for all your help and advice.

[Celtic PMRGCAuk volunteer in reply to lizzie47]

You’re very welcome, Lizzie. Glad the scan didn’t prove scary after all - now you’ll be able to reassure others following your experience!

[piglette in reply to lizzie47]

Hi Lizzie, I have had to shop on-line recently too due to medical problems. The good thing is you do not tend to impulse buy!!

[lizzie47 in reply to piglette]

Yes that's very true but it is a little limited I find but when you have no choice there's not much you can do about it! I would love to go around a supermarket again but then you have got to carry it to car then car to house!!

[Soraya_PMR]

I had one last month. No problems.

The info that came with my appt mentions to contact dept if diabetic; to contact if possibly pregnant; allergy to iodine. Not to eat for 2 hours before, but to drink 500mls fluid. (Nothing fizzy). To stay in hospital 1 hour post injection in case of adverse reaction. (I only stayed 20 minutes, I was allowed to go, I didn’t run away!)

Possible strange taste due to contrast dye (I felt I was breathing out the fumes of nail varnish remover!). Possible warm flushed feeling and sensation of passing urine (mostly ladies). I had the mildest of warm flushes and didn’t wet myself

Inform staff of hay fever, asthma, previous allergic reactions to contrast media.

One thing they didn’t tell me til after was that the dye can affect kidneys and as I have ‘impaired kidney function’ I needed a blood test 7 days later. Maybe everyone has that blood test? (I don’t have impaired RF, and as I have heard nothing 2+ weeks later I assume all is well).

My CT showed I did not have dilatation nor stenosis of my aorta. (Really not sure if this rules out vasculitis???? I’m hoping it is a precise enough scan/method to identify this??) I do however have liver cysts and gall stones. Booo!

[PMRpro Ambassador in reply to Soraya_PMR]

Lovely!!!!! So what are they going to do about those? OH was advised he has a hernia (hiatus I assume, it was in Italian) which was found during his MRI for prostate ca. That's the trouble with hospitals - you go there feeling fairly well and come out less well...

[Soraya_PMR in reply to PMRpro]

I don’t suppose they’ll do anything!

I asked my GP for his comments. ‘Liver cysts are liver cysts’ (seriously!) and no comment re GS. Although in his defence ( ) he did not have the report, just the brief letter from the rheum that I was cc’d into.

My view, I had the liver cysts before but didn’t know. So no point fretting.

GS don’t surprise me. After all I’m dark haired, was skinny as a rake, and long past 40! (Fair, fat & 40). Had pain years and years ago. A locum GP at that time assured me ‘it didn’t really hurt’, whereas I was sure I had an axe between my shoulder blades and the ‘indigestion’ was on the edge of becoming an MI in my perception. Still, what do I know? Pain is so personal, and he didn’t feel a thing

I shall ask the rheum for details when I see her. Maybe the GS are now big enough to be stable? I have no intention of cutting out fat, at least until I get further symptoms.

Reminds me though, when I was a kid I always went to bed with a mug of warm FF milk. For YEARS I fell asleep accompanied by nausea. I never knew any difference and thought this was ‘normal’. Odd child!

Did OH have a full body scan? I’d also assume hiatus. He’d surely have a more physical presence/swelling with femoral, inguinal or umbilical. Does he experience reflux? Or maybe he doesn’t ever lie as flat in everyday life as he had to for the scan?

[PMRpro Ambassador in reply to Soraya_PMR]

No - just the thorax/abdomen as far as I know. His gut is a walking disaster from one end to the other - so I was hardly surprised...

Isn't it amazing how doctors know things "don't hurt"?

[Soraya_PMR in reply to PMRpro]

Amazing and so so so comforting.

[lizzie47 in reply to Soraya_PMR]

Thank you Soraya for your reply.Pleased it went well for you apart from the fact you had to have blood test to check on your kidneys which they should have informed you about I would have thought and the fact you have liver cysts and gall stones but no dilation nor stenosis,will you be having treatment? I am not very clued up I am afraid.I will be aware of the taste thing and hope I don't wet myself! Thank you for all the information and wish you well.

[Soraya_PMR in reply to lizzie47]

I’ve been on steroids for 11 months for PMR.

Treatment for gall stones and/or liver cysts? Unlikely I think. No symptoms. PMR is enough to contend with currently!

You won’t wet yourself, it’s just that feeling apparently. But it’s good to know of the possibility of ‘that feeling’ then you can discount it.

[lizzie47 in reply to Soraya_PMR]

Yes I agree with you PMR or GCA are enough to deal with let alone with all these other things! Thank you

[SheffieldJane]

I have had a contrast scan twice in my life and didn’t notice any effect at all, except perhaps in the slightly uncertain attitude of the woman administering it, this last time.Ignorance is bliss, because I have now read on the Internet that some people are sensitive to the dye. It didn’t occur to me ( I just thought I’d pee it out).

I am sorry, not much help I know.

[lizzie47 in reply to SheffieldJane]

Thank you SheffieldJane,any comments are gratefully received especially when it puts my mind at rest a little.As I have replied before I am such a wimp!

[MichaelW]

I had a brain scan just before Xmas using contrast medium. Precautions are as the previous linked article so nothing much to add. I had no problems - staff will keep you back after the scan for 20-30 mins to make sure there is no adverse reaction. I got the results about a week or so after the tests.

Hope all goes well for you

Michael

[Soraya_PMR in reply to MichaelW]

I had a brain MRI with contrast in 2011. (So contrary to popular rumour, I actually have proof that I DO have a brain)

I mentioned this to the tech when I went for my CT contrast. He became quite indignant! The CT and MRI contrast ‘dyes’ are quite different, have no connection, and should not be confused!!! I stood corrected

[MichaelW in reply to Soraya_PMR]

My brain scan was a CT procedure using a soluble iodine salt as the contrast media

[Soraya_PMR in reply to MichaelW]

You dont need a reprimand as I did then

I recall the MRI injection was quite painful. Felt nothing with the CT injection.

[MichaelW in reply to Soraya_PMR]

Most painful part of the procedure was the cost of the car park😀

[Soraya_PMR in reply to MichaelW]

Oh that made me laugh! Thanks!

[lizzie47 in reply to MichaelW]

Thank you Michael,I hope your results were good.

[1Purplecrow]

Hi, had a contrast- aided scan in September 2017, the first thing done was a blood test to check kidney function. All well... and scan proceeded with no adverse effects. Good luck...don’t worry💜

Kind regards, Jerri

[lizzie47 in reply to 1Purplecrow]

Thank you Jerri for your good wishes,wish I wasn't such a lightweight,comes of not had any health problems for most of my life till GCA hit me! Thank you.

[Jura1959]

Hi lizzie47

I was diagnosed with pmr in Jan 2017 put on 15mg pred reduced very quickly to zero pred in less than 12mth. Within 2 weeks pain started again so reintroduced to 15mg pred which helped sort things out but while on it this time I've had other issue's like yourself very upset stomach ok one minute then making world records in getting to the toilet. I also suffered with an infection or very bad flu virus in early Jan this year also very odd pains/feelings in my head temple region area so has a precaution my doctor has now put me 30mg of pred and have to attend hospital to see specialist /consultant to have test run ultra sound possibility of biopsy so very much like yourself and very concerned I also have lost weight this time I was around 110kg before Christmas I now weigh at 98.9kg which isn't a bad thing but I've done nothing to encourage weight loss.

Jura1959

[lizzie47 in reply to Jura1959]

Hi Jura,yes ait all of a bit of a nightmare and you do seem to have gone through a lot.I have experienced the same tummy issues hence the CT scan and Endoscopy,only hoping there is nothing more evil lurking,mind you GCA is pretty evil with all the other things that it brings with it! I would love to think my reduction in steroids is going to go smoothly but as you have discovered its not always so.I hope your appointment with consultant goes well.Wish you well.Lizzie

[Gaijin]

I just got a PET Cat scan with contraste.. They told me it was glucose and then something about being radio active and to stay away from children and pregnant women.. I felt no effects except food tasting weird.. I won't get the results till mid March, but not looking forward to the incidental findings,I'm sure they'll be some with a full body scan!

[lizzie47 in reply to Gaijin]

Hello Gaijin,thank you for your reply.Funnily enough food hasn't tasted right since my scan yesterday as you found.I hope your scan results are good and nothing to worry about.Thank you

[tgca]

This site (wonderful lot they are!) suggested coming off omeprazole... nasty stuff... and make certain your preds are coated. If you have any tummy problems, yoghurt seems to help.

[lizzie47 in reply to tgca]

Thank you for your reply.Yes I was going to talk to my GP about coated pred with all my tummy problems.Trouble is when I go to the GP the list seems to get longer every time but reading the Posts here I am not the only ones.Yes I do eat plain yogs but think I should be eating more not every few days..Thank you

[tgca in reply to lizzie47]

Definitely go for the coated preds as, when I stupidly forget to order more and rely on the uncoated ones, I can feel the difference. Good luck with your GP