GCA patient saw cardiologist yesterday, med changes

[weatherman69]

Hi all: So I took, my weatherman to Cardiologist yesterday. Routine checkup, because of the history of CABG 2005 and stent replacement last year and occasional chest pain with flareups. So during his visit yesterday, Mac told cardiologist about needing nitro 3x in one week with symptoms of GCA. This is one of his symptoms, if a flare is going to be really bad. He has been tested many times for Troponin levels, which are always normal. Anywho, we were told early on that the giant cells are more evident in his right carotid. So when he does have chest tightness, he takes a nitro right away. I encourage it, because you never know, because he has history of heart disease. So the cardiologist and I got into a conversation about his tapering of predisone and inflammation factors that happen in the middle of the night. Especially the IL-6 cytokine etc.........and Macs chest tightness is always in the am between 2 and 4. So he said that he wants me to change his blood pressure medicines around too. He takes Metoprolol 100mg and 30mg Imdur in am , at noon, I give him his Losartan 25mg . I told him about the split dose of predisone, and he was very supportive of the 2am dosage of 1/3 dosepredisone. He went on to explain more inflammation and stress factors that happen in the night. Mac was a little behind on understanding, but believe today he is understanding of it. As a RN, I will have to rearrange a few things, to make sure there is no interference of other meds. I am really protective of him on this.

So after much discussion, we are considering doing as DADCUE did with his, but I would really like to know if everyone that is on a split dosing is doing the 1/3 dose at 2am and then what time do you do the dose in the day?? is it after breakfast?? what are your times?

Mac is also on Actemra biweekly, and he has always had a tender mouth, so early on he was put on folic acid, when he was tried on methrotrexate for awhile. He has not been on it for a long time, but it really helped him. He take 8mg a day, 5 in am and then 1 mg each med time for rest of day. Problem is that he gets a mouth breakout every 3 months it seems a day or two after Actemra shot. Does anyone out there experience this. He luckily has a lidocaine/mouth swish and spit and a mouth paste pain reliever that usually turns it around quickly. I also have been told to give a couple more folic acid tabs until relieve too. Mac wanted me to ask if anyone has this happen to them. He is really thankful to this site, and I do most of the writing for him due to essential tremors and problems with computer. thanks, Charlie

[SheffieldJane]

That sounds like a very useful meeting you had there with Mac’s doctors. I have nothing to contribute. I just thought how much we would all benefit from this scrutiny of our meds and the informed rearrangement of dosing. I haven’t split doses so far but would aim for 2 am if I did. My sore mouth is thankfully very mild but you have reminded me about Folic Acid. Mac is fortunate in you Charlie.

[MrsNails]

Hi Charlie

So sorry to read about Mac’s difficult journey with his health, l was thinking about his mouth issues, when l had Chemo inside my mouth was destroyed for long periods but the Unit prescribed me ‘Gelclair’ l’m not sure if it would help Mac or not but thought you might want to look into it.

drugs.com/cdi/gelclair.html

Best Wishes & Kind Regards to you both.

MrsN

[weatherman69 in reply to MrsNails]

Well it has been a hard 4 days, but the mouth is starting to resolved. Mac's previous INternal Medicine doctor always said to increase folic acid. He takes 5mg in am and 1mg at all other med times. Well we have in the past increased the day of the Actemra shot. We believe when it happens it co incides with the the day after Actemra. Every 3 month or so it happens. Anywho, we have decided to preload on folic acid next time. Taper going well, just had a bad 4 days over mouth. Oh I forgot, maybe not great week, he is not adjusting to the blood pressure meds moved around, so we went back to our regular times. It works much better and feels better already. He is getting much more sleep since the new taper, which makes him stronger, however, his pain in mouth did not help things. Today is a good day. I really am so happy to of found you all, especially the taper system!! 8 days until next lab draw, cannot wait to see.

Do you all recommend taking the flu shot for him?? I cannot have it, because of latex allergy and all the tops are latex to vials. I found out yesterday the flu shot stock is in and they are giving to seniors first!! I just have to get into the Naval Hospital for it.

[PMRpro Ambassador in reply to weatherman69]

Yes - flu shot is highly recommended. Is there no version without latex?

[weatherman69 in reply to PMRpro]

not here in Guam

[PMRpro Ambassador]

Over the years I have got the impression that most people who do split dosing tend to split 2/3-ish in the morning and the other 1/3-ish later in the day so its effect lasts over the 24 hours until the next dose is due, which is the main reason for doing it - and that obviates the need for a 2am dosing. In fact, I don't know of many who do both 2am and split dosing.

The timings with splitting can be played about with a bit, as can the proportions - half and half may also be used. The 2/3 in the early morning (6am or so) and 1/3 early-mid afternoon would parallel the normal production of cortisol most similarly - does that make a difference? I don't know, but what works best for YOU (or him indoors) is what matters.

Interesting he finds a parallel between the GCA and chest pain. I have a.fib caused by sick sinus syndrome which the cardiologists are confident was caused by damage to the electrical cells by the a/i part of PMR. I was mainly getting episodes around midnight, they don't last long but that is when my blood pred level will be at its lowest (I am on Lodotra/Rayos, taken at 10pm and released at 2am). Strangely, I often get a short period of tachycardia in the early evening, about when it is time to cook dinner - and an immediate dose of liquid oral magnesium then seems to improve things all night. The a.fib is clearly worse when I have symptoms suggestive of flaring. The pred dose I need tends to be as much for the cardiac management as the PMR.

[Mikb]

I was told not to split pred dose for GCA.

[RoadTrip in reply to Mikb]

Private Rheumatologist said ok to split doses, 30 mg 6am, 30 mg 6pm for GCA.

However, just had first telephone appointment with local hospital Rheumatologist , who said not to split doses, take full dose in morning, as split dose can increase Cushing syndrome.

[PMRpro Ambassador in reply to RoadTrip]

Rubbish - you will gain weight and look Cushingoid with GCA doses whether you take them all in the morning or split them to control the inflammation better, What on earth makes him think that?

[RoadTrip in reply to PMRpro]

No idea, that was one of his better statements!

Decided to go back to single dose, but early morning I.e 2 am as up anyway, rather than 8 am as previously and see how I do.

[PMRpro Ambassador in reply to RoadTrip]

"that was one of his better statements!"

Blimey - the mind boggles!

[RoadTrip in reply to PMRpro]

Another, he’s not convinced that I have GCA and GCA has not been diagnosed by him!

No idea what he thinks it is! Not that I want GCA, but to be frank this has greatly upset and stressed me out.

I have updated my profile to include all relevant GCA markers!

[PMRpro Ambassador in reply to RoadTrip]

I wonder if it ever occurs to them just how much their squabbling affects us? I don't mind them disagreeing but please provide your evidence and a suitable alternative.

Researchers make such a song and dance about finding an alternative to pred - that is NOT the greatest unmet need, we need a definitive marker one way or t'other to stop this swithering. I've even heard patients with a POSITIVE TAB who were told the new doctor didn't agree!

[RoadTrip in reply to PMRpro]

As far as I know he is not aware of my private Rheumatologist appointment, I did not bring it up in a somewhat tense conversation.

As far as I understand, if my symptoms return with inflammation markers then the diagnostic process will be repeated and unless a positive ultrasound or TAB is found then a GCA diagnosis will be discounted.

I will however NOT submit to a TAB. Not that they are doing them at the moment anyway.

[PMRpro Ambassador in reply to RoadTrip]

And after HOW much pred?

[RoadTrip in reply to PMRpro]

He didn’t specify, just that if inflammation makers are present I.e. elevated CRP, mine was certainly high before diagnosis and PRED, then it should be possible to find a positive u/s or TAB for GCA, if it is GCA.

[PMRpro Ambassador in reply to RoadTrip]

No - I meant how long have you been on how much pred so far?

Hasn't read any of the papers about how high dose pred affects the TAB results then?

aafp.org/afp/2017/0115/afp2...

says

"Patients were grouped into three categories: those treated for less than two weeks, those treated for two to four weeks, and those treated for more than four weeks prior to biopsy. Eight patients were excluded because of long-term corticosteroid treatment for polymyalgia rheumatica. Biopsy results were positive in 78% of those treated less than two weeks, 65% in those treated for two to four weeks, and 40% in those treated for more than four weeks."

The results are disputed - but a negative biopsy even immediately does not mean you don't have GCA - it means the slides they looked at didn't have the giant cells. The vasculitis may be affecting other arteries though.

[RoadTrip in reply to PMRpro]

Sorry misunderstood. I have been on 50 mg or over for 68 days.

He is not proposing doing u/s or TAB now, only if I flare.

In a flare, he said that the inflammation markers (CRP will also be raised) should be present, to be found by u/s or TAB if it is GCA.

[PMRpro Ambassador in reply to RoadTrip]

As I say, depends where the inflammation is though doesn't it. Could be in any large artery - not necessarily the temporal artery,

[RoadTrip in reply to PMRpro]

I see your point, if, however, the new inflammation was in the TA would it be there to be found regardless of previous PRED doses?

[PMRpro Ambassador in reply to RoadTrip]

Maybe - but maybe not. TAB isn't 100% certain even on day 1 without any pred involved at all. The rate of positives is not that high - for all sorts of reasons. GCA may not affect all the length of the TA, it forms what are called skip lesions so if you happen to get a bit of artery with no lesions or the slides you select to view don't happen to go through a lesion you may not see it. I'm not sure how the inflammation regresses under the effect of pred - it will heal but at some stage there will still be granulated tissue to be seen but not sure for how long. It depends on the skills of the surgeon - and it is something that tends to be given to the duty guy rather than the best vascular surgeon in the place. It isn't unknown for the surgeon to take a chunk of vein or nerve in error!

ncbi.nlm.nih.gov/pmc/articl....

says "Positive biopsy has a specificity of 100%. Because of this, by definition it is the gold standard of diagnosis of temporal arteritis. However, it has a poor sensitivity when compared with clinical diagnosis with a false-negative rate reported as high as 44%.12 In clinical practice, a temporal artery biopsy is rarely the factor that establishes the diagnosis of temporal arteritis, although it continues to be widely advocated. Careful clinical evaluation is essential. Clinical evaluation may be the most accurate diagnostic technique; information from biopsy adds to diagnostic yield only in a minority of cases."

ncbi.nlm.nih.gov/pmc/articl...

says "If biopsy negative the guidelines recommend continuing treatment if: “there is a typical clinical and laboratory picture and response to glucocorticosteroids, or typical findings on ultrasound, or ischaemic complications typical of GCA (such as anterior ischaemic optic neuritis).” "

So frankly - a TAB being done after months of pred really seems just a bit pointless if it has such a high false positive rate early in the disease. And he is being a bit unprofessional if he disagrees with the doctor who saw the clinical situation at the time ...

[RoadTrip in reply to PMRpro]

Many thanks, essentially why I would refuse to have one!

[PMRpro Ambassador in reply to RoadTrip]

Quite. But no doubt the gentleman thinks he knows better

[RoadTrip in reply to PMRpro]

Indeed, he wanted me after 5 days at 50 mg to go straight to 40 mg yesterday, as that was the correct thing to do from his experience. I was behind the GCA protocol reduction curve. I said no.

Additionally he wanted me to rapid taper .... I managed to divert conversation to 2 week GCA protocol at that stage, as I’m almost sure I would have been looking at 1 week 10 mg reductions otherwise. So 2 week reductions were proposed.

As you can see it went really well! Things started off badly and only went one way!

[PMRpro Ambassador in reply to RoadTrip]

Mmmm - don't think I could have contained myself! Haven't ever seen a reducing schedule that goes at that speed! Wonder what his experience is ....