Confused

[Joseph14612]

I have been on high dose pred for 5 months....from60mg down to 30 and back up a few times. I had 2 Actemra injections(epi-pen) and my rheamy says my bloodwork shows almost normal inflammation . I am currently on 35 mg pred and going to 30 next week. I still get a light headache....now my problem is that even though I only eat veggies for the last 2 months, my cholesterol has gone through the roof! Almost 300 on bad cholesterol and very low on the other.

The GP wants me to see an endocrinologist, but they are booked until mid Feb....I asked what can I do in the meantime and my GP just said continue the diet...after pressing her, she prescribed Zetia because I am intolerant to statin drugs.

I am however still on Plavix, several years now for stents in the arteries...., so should prevent a stroke.....any advice would be appreciated.....thank you

In the US diagnosed with PMR/GCA

[nallufl24]

my cholesterol went to 359 because of Actemra. I can’t take statins either. I started a drug called Rapatha which brought my cholesterol down to 223 pretty quick. However, my cardiologist said that’s not good enough. I’m trying to watch my diet and get exercise but I can’t get any lower. I have some blockage and too many heartbeats and some angina so this really bothers me. I take a beta blocker and low dose aspirin. Don’t really have any advice for you but our situations are due to Actemra and not sure what to do about it

[Joseph14612 in reply to nallufl24]

That is what I suspect as well...but my rheamy disagrees and says I should continue the Actemra....

[JuneWalker in reply to Joseph14612]

I have been on weekly self injections of Actemra, down to 5 mgs of prednisone. I have bloodwork every two weeks and my cholesterol is perfect.

[Joseph14612 in reply to JuneWalker]

Congratulations, glad you are doing well.

[JuneWalker in reply to Joseph14612]

ty

[Joseph14612 in reply to JuneWalker]

How long on Actemra?

[JuneWalker in reply to Joseph14612]

Actemra since August. My rheumatologist is adamant that I have complete bloodwork done every two weeks. She said if any markers increase above the normal range she will reduce my Actemra to every two weeks or once a month. So far so good.

[Joseph14612 in reply to JuneWalker]

sounds like you have a good rheumatologist👍

[JuneWalker in reply to Joseph14612]

My rheumatologist deals mainly with GCA and PMR patients. She randomly calls me at home to find out how I am doing.

[PMRpro Ambassador]

Biting my tongue here - %%$. The markers are nearly zero BECAUSE OF THE WAY ACTEMRA WORKS. It does NOT mean the inflammatory process isn't still active, just that no IL-6 is being produced.

The high cholesterol is due to the Actemra - mine only went up a bit, from 160 to 180 (or maybe 180 to 200, can't remember). I can't take a statin so was given ezetimibe instead - no idea if it works, haven't checked yet. Not stopping Actemra.

It is extremely difficult to reduce cholesterol by diet unfortunately since most in the body is made by the liver.

[Joseph14612 in reply to PMRpro]

I start ezetimibe tomorrow 10 mg. they say it isn't as effective as statins though.

[PMRpro Ambassador in reply to Joseph14612]

Someone said on here recently it had taken her level down a lot.

[Joseph14612 in reply to PMRpro]

my numbers...

CHOLESTEROL 278 mg/dL 1 to 199 mg/dL1 - 199 mg/dL

TRIGLYCERIDES 281 mg/dL <150 mg/dL<150 mg/dL

HDL CHOLESTEROL 35 mg/dL 40 to 60 mg/dL40 - 60 mg/dL

non-HDL-C 243 mg/dL 0 to 129 mg/dL0 - 129 mg/dL

CHOL/HDL RATIO 7.9

[PMRpro Ambassador in reply to Joseph14612]

My rheumy assured me that Actemra improves HDL - mine is already very high! That is part of the reason my total is high. We'll see how it goes, Maybe it's worth investigating improving your HDL?

[Joseph14612 in reply to PMRpro]

So if Actemra will improve my HDL, maybe I need do nothing....They recommended seeing an endocrinologist...have an app. in February, earliest I could get. I also noticed my sugar is creeping up too...😓

[PMRpro Ambassador in reply to Joseph14612]

With pred or with Actemra? Have you cut your carbs drastically? Especially processed ones, added sugar and limited fruit.

[Joseph14612 in reply to PMRpro]

Actemra...I have one green apple a day, carbs are cut drastically, one slaice of Ezekiel 4:16 bread, almost daily, 1/2 teasp raw honey in black coffee daily. no sugar.

[PMRpro Ambassador in reply to Joseph14612]

What else? Very little food is carb free, even salad all adds up! However - your apple and slice of bread probably come to 30g of carbs on their own. Contrary to perception, a slice of Ezekiel bread has 15g carbs, an ordinary slice probably 13g carbs. Snazzy and I know to lose weight we have to get below that, 20g carbs is our limit. The trouble is, every gram counts and it is amazing how they mount up when you are honest and weigh what you eat.

[Joseph14612 in reply to PMRpro]

The veggie diet I am on (mostly) and despite taking 35 mg prednisone and the weekly shot of Actemra, I have lost 30 lbs. in the last 3 months....I'm not looking to lose weight just inflammation.

[Karenjaninaz in reply to Joseph14612]

The raw honey is lots of sugar.

I am in a high protein low carb diet to control reactive HYPOglycemia. It includes fats. It seems really reducing carbs lowered my cholesterol <100 despite using butter. (I am under the care of an endocrinologist in the US.) Truly low carb diets: watch for the sneaky sugars in prepared foods- even when they say “no sugar added” they’ve added fruit pulp or honey.

I found monkfruit drops a helpful sweetener. One drop goes a long way.

[Joseph14612 in reply to Karenjaninaz]

I will have to look for monkfruit drops , thank you

[Joseph14612 in reply to Karenjaninaz]

just ordered it from Amazon, thank you 🙏

[Joseph14612 in reply to Karenjaninaz]

if I may, what brand of monk fruit did you buy?

[Karenjaninaz in reply to Joseph14612]

I buy Likanto monk fruit drops on Amazon.Just one drop in coffee is fine for me. Avoid ads for “Monk fruit sweetener” . These have sugar alcohols mixed in and that can cause the runs.

[Joseph14612 in reply to Karenjaninaz]

thank you 🙏

[Joseph14612 in reply to PMRpro]

how long on Actemra before HDL went up?

[PMRpro Ambassador in reply to Joseph14612]

My HDL has always been high and I'd been on TCZ for a 4 or 5 months before the first blood test so not really sure if it went up a lot and when

[Joseph14612 in reply to PMRpro]

Thank you PMRpro.... what a terrible catch 22!

[PMR2011 in reply to PMRpro]

isn’t IL6 still being produced, but it’s that the IL6 receptors are being blocked? That then blocks the inflammatory process in one of it’s “branches”? We checked my IL6 levels after I went on Actemra to get a baseline and IL6 was very high. We were trying to see if it could be used as a disease marker. When levels went down (even tho they’d be higher than norm), could that mean my body is producing less and the disease process slowing? Sadly, it did not seem to correlate.

However my inflammatory markers went to near zero and stayed there which was due to Actemra. I do hope they are able to identify a disease marker specific to both PMR and GCA it would certainly make our lives easier!!

[PMRpro Ambassador in reply to PMR2011]

You're right - what on earth made me think it interfered in an enzyme pathway? But that stops the development of inflammation - no inflammation means the markers don't rise.

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

I think the hope is that the TCZ preventing the action of the IL-6 will result in less and less being produced and the process dying out though I don't quite see HOW. Plus it isn't the only mechanism for inflammation in GCA,

I've been saying to Sarah Mackie in Leeds for ages that the greatest unmet need in PMR/GCA is the lack of a diagnostic marker - not new expensive drugs that NICE won't approve!

[Joseph14612 in reply to PMRpro]

The experts definitely need to find some way to understand this terrible disease.

[PMRpro Ambassador in reply to Joseph14612]

It isn't that terrible! I was just saying to a senior member of the charity that a reality check is due: PMR and GCA really are child's play and innocuous compared with the other members of the vasculitis team! Wegener's arteritis or GPA is just one of the more horrible players.