Oh no not me again!😱Update on TCZ and LFT results

[Angelsmummy]

Good evening everyone,posting yet AGAIN regarding the above.Mainly for PMR pro and DL.Probably bored everybody else!😂Anyway,phonecall from rheumys “specialist “ nurse today,Alkaline Phosphate (hope that is right) gone down from 289 to 160,HDL 2.02 calc.LDL cholesterol 2.85,Triglycerides 1.62,cholesterol HD ratio 2.8 non HDL 3.6.😱😱😱😱All double Dutch to me,but Rheumy reckons LFT is ok to start TCZ which will be delivered in 2 to 3 weeks.My CRP was only 4 so guess that the aches and pains are nothing to worry about.Anyway PMR pro,would you be so good as to tell me my cholesterol level please?I deciphered it as 5.8 but no doubt got it totally wrong.If I am right,it has gone down 1 in about 5 weeks by new diet instead of suggested statins.Hopefully now all this is finally sorted out I can give you good folks a bit of peace!Many thanks ,x😜🥱🥱🥱🥱🥱

[PMRpro Ambassador]

Your total blood cholesterol is calculated by adding your HDL and LDL cholesterol levels, plus 20% of your triglyceride level. According to that I make it 5.21.

2.02 + 2.85 + (1.62 divided by 5) = 2.02 + 2.85 + 0.32 = 5.21

which is the same as this calculator gives

omnicalculator.com/health/c...

so that's even better than you thought.

[Angelsmummy in reply to PMRpro]

Wow!Thanks for that PMR pro,really cheered me up,shall continue with the diet as it is obviously working Guess 5 would be my optimal level then?Thankyou once again for all your support and help,x💐

[PMRpro Ambassador in reply to Angelsmummy]

What is this diet? Getting cholesterol down with diet is notoriously difficult.

[Angelsmummy in reply to PMRpro]

Well,I don’t ever eat meat,since 1988,live on fish,quorn,always eat 3 veg daily or a leafy salad.Have cut out pasta,hard cheese,been drinking Aldi cholesterol yoghurt drink after meal plus half a tub of their protein yoghurt with fresh fruit.Stopped eating chocolate,biscuits,homemade cakes but allow myself a little treat now and again.Oh and I have a satsuma,orange and maybe a pear every night,plus eat some of the peel.Walnuts,almonds,and pecans,just a few during the day and a small handful of pumpkin seeds.Started doing this properly about 5 to 6 weeks ago.Have lost about 10 lbs.Probably getting lower on the pred might have helped the weight but I was more worried about the 6.8 cholesterol which my dr gave me statins for but did not take.

[PMRpro Ambassador in reply to Angelsmummy]

That's brilliant! No, couldn't live without some meat, really can't befriend quorn I fear! Do like fish. The weight loss will have helped the cholesterol too.

My daughter and granddaughter are both vegan but I can't go that far!

[Angelsmummy in reply to PMRpro]

Got to admit,unless I jazz the Quorn up with tomato and herbs,it is like eating a cardboard box but palatable,knowing I have a nice protein yoghurt to wash it down with afterwards.Interesting to hear from you that it is difficult to lower cholesterol by diet alone.Maybe I am just lucky eh?Shall keep it up as apparently TCZ can raise cholesterol Rheumy says.Suffolk has been SUNNY today,really lifts the mood,especially seeing as I was at Drs surgery today having my arm steri stripped after gashing it on a metal fixing.Might change my profile name to “Lucky”!,haha.xx

[PMRpro Ambassador in reply to Angelsmummy]

TCZ does raise cholesterol - mine went up further and I'm on ezetimibe and bempedoic acid as I can't take statins. However - I read in an article a few days ago that although it raises cholesterol, it isn't associated with increased cardiovascular risk. Strangely, the level fell with ezetimibe to something quite acceptable to even cardiologists but then went up again - hence the bempedoic acid because obviously my rheumy hadn't seen the article I did!!!

Well done - the wonders of aging skin ...

I can't be doing with food you have to "dress up" for it to be edible. I use relatively little in the way of flavourings - I like what I eat to be good for its own sake, if you see what I mean. Have had tofu once that was worth eating - in S Korea I think! Long way to go for it!

[Angelsmummy in reply to PMRpro]

Thanks for info on cholesterol.Regarding food,I don’t really dress up food only the cardboard quorn which is about once a week with a nice flatbread!Like my fish plain just cooked in skimmed milk and loads of black pepper.Live on tinned tuna and salmon,with my salads.Got a liking for baby spinach with my salads now as well.So annoying to have had high cholesterol,seeing as I have always eaten healthy most of the time.Dr told me it has been about 5 for years.Never told me though!!😱😱😱🤬🤬🤬Not that I go to Drs much,try and steer clear unless I have to!Maybe a bit of hereditary in there?X🌺🌼

[DorsetLady PMRGCAuk volunteer]

TCZ - good news… are you happy about that?

[Angelsmummy in reply to DorsetLady]

Hi DL,well,I can’t say “Happy” as I hate taking drugs.But if it helps stop the flares and gets me off pred( maybe!) then I will do it.As you said to me before in a previous post,if I don’t like it I can stop basically.It seems from most other users of it,hardly any side effects unlike what I experienced with Metho and Leflunomide,so fingers crossed it works for me.You have been such a support to me with all my windging and moaning,you really have.You and PMR pro deserve medals!xx😱💐💐🎖️🏅

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

See how it goes…. and good luck.

We don’t want medals - just to make life a bit easier if we can…😊

[Angelsmummy in reply to DorsetLady]

Morning DL,hope you don’t get an alert on your phone and the “ping” wakes you up?😱Forgot to ask you yesterday,I am on the9 th day of the suggested increase to 10 mg pred.Shall I keep on this dose for 2 to 3 months until TCZ kicks in or should I go back to my original 7 mg seeing as my CRP levels came back as 4 ?Many thanks,x🌼

[PMRpro Ambassador in reply to Angelsmummy]

Maybe to 8mg? I have to say, seems strange adding TCZ at this stage when you are as low as this. Have all your flares been associated with reducing the dose?

[Angelsmummy in reply to PMRpro]

Hiya,had a flare at 20 mg.(started at 60 mg dose after discharge from hospital) second flare at 7 mg ,put up to 40 mg.Developed eye pressure so made to reduce quickly .Told to stop Leflunomide because of “ back door trots” and chronic fatigue.Thats when Rheumy said to try TCZ.Personally if I did not have to have the TCZ I would not have it.Now I am wondering after your input about being so low on pred whether I SHOULD have it?? X💐

[PMRpro Ambassador in reply to Angelsmummy]

Just seems a bit OTT to me. When you flared at 7mg you probably didn't need to go to 40mg - that was most likley just an overshoot, Did no-one give you drops for the eye pressures? Though with you having already lost vision in one eye, they are probably being extra careful.

If things don't change, then you will only get the TCZ for a year - there is a 50/50 chance it will get you entirely off pred but then there is a distinct possibility of symptoms returning if you do get off pred in the meantime. For some GCA is done and dusted in 2 years, 4 is much more common, and if the underlying autoimmune disorder is still active after you finish the TCZ, you could well find you need pred again. It isn't a simple case of TCZ "cures" the problem. There isn't a cure. I still need pred for the PMR bicep tendinitis which returns after a few weeks when I go to 6mg, no sign of it at 7mg.

[Angelsmummy in reply to PMRpro]

What to do eh?,I got latanaprost eye drops as pressures were 31 /33.Dropped to 19/18 ( I think) .Still on eye drops.Now I am wondering should I have this drug if I am that low as you say.!Had to drop 10 mg every fortnight because of the eye problems and DL said that was a very quick taper.Now my head is full of thoughts shall I shan’t I!xx😱😱😱😱

[PMRpro Ambassador in reply to Angelsmummy]

Indeed. And if the drops were that successful - why the panic? All seems a bit running scared to me. Sorry to have stirred things up!

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

No it didn’t… as you can see.. 😊

Agree with PMRpro,,probably not necessary to stay on 10mg until TCZ kicks in.

As you are unsure, then why not treat as if you were tapering as usual from now…and try 9mg for a month, then 8mg… and then see how you feel before you drop down any further.

[Angelsmummy in reply to DorsetLady]

Hi,notworried about the tapering,just thinking now,is it a good idea to start the TCZ ,should Ijust stick to the pred and taper as necessary??Maybe the rheumys are just thinking about my eye loss and being cautionary as PMR pro suggested?What a conundrum!😱

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

As we’ve said before, you can try it, and if it doesn’t suit then stop it… but as PMRpro has said, it’s not a magic bullet for all.

As you know I didn’t take it, so cannot give personal opinion.. so your decision-sorry 😊

[Angelsmummy in reply to DorsetLady]

Thanks DL.Will have a good old think about it today,and phone Rheumy up and ask his reasoning for giving it to me as I am on a low dose ( and not quoting ANYONE) and listen to his comments.Thanks for input,great as usual and will do your tapering plan if I don’t start TCZ or stick to your previous regime of staying on the dose for 2 to 3 months if I have it and weaning off 1/2 mg every 6 weeks .!,💐

[Angelsmummy in reply to DorsetLady]

Sorry,just re read your comment about tapering down now if I do have the TCZ so will do the 1 mgdrop once a month as suggested and NOT stay on current dose.Sorry for mis read!x🌺

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

👍

[Angelsmummy in reply to DorsetLady]

Rheumy nurse phoning me at 10 15 so I will ask her to relay my queries to Rheumy dr.Thanks to you and PMR pro again for very constructive comments.🌼💐👏🏼👏🏼xx