Blood results from Rheumy!

[Angelsmummy]

Should I lower my intake of I cal D3 seeing as my Vit D levels have come back at 78?Also,EGFR is 89.a bit high maybe?Also Endo has offered hydrocortisone when I reach 5 mg but have told Rheumy that I would rather stay on long term 5 mg as has been suggested as an option.Could I TRY to get lower than the 5 mg in time or just accept that 5 mg would be my friend for life?So many questions SORRY!xx😱😜😂

[DorsetLady PMRGCAuk volunteer]

Why are you thinking you need to be on 5mg long term… have I missed something during my travels?

As you were diagnosed in Dec 2022, you are only 2 years and 2 months into treatment… and most on here with GCA have around 4 years on Pred.. or even longer.

I appreciate you have just had to go back up to 15mg - but that still gives you plenty of time to get back down again, so no reason as yet to be think you won't get off the Pred.

Think you need to discuss blood results with doctors… not sure either are of great concern..

[Angelsmummy in reply to DorsetLady]

Hi DL,had a Synacthen test in Dec after an hour ,my levels were 168 I believe.Endo was contacted and he said” failed to demonstrate a significant rise in cortisol,suggestive of adrenal insufficiency “ The letter I received today was just a copy of letter to dr regarding my telephone call with Rheumy telling me all this.PRO said that too early really on 4.5 to make this assumption.Good news about bloods though!Thanks.xxPS on letter today ,Rheumy wrote:Steroid induced cortisol deficiency,requiring long term steroids.( Endo said a maintenance dose of 5 mg.) xxx💐😜Bet you are loving this weather eh!😢

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Well of course you “failed to demonstrate a significant rise in cortisol,suggestive of adrenal insufficiency “

to expected at that dose.,, needs to be gone again when below that.

No comment on weather !

[Angelsmummy in reply to DorsetLady]

Exactly as PRO said when I told her they did it at 4.5.Never mind,shall just plod on with my nice slow taper and think about Mr Adrenal in a couple of years!Cheers DL.xx💐💐😜

[PMRpro Ambassador]

eGFR can't be too high - just rejoice!! It usually falls as you get older.

How much vit D are you taking at present?

And absolutely no reason to discuss HC at this stage, If all depends on whether the PMR/GCA is still alive and kicking. HC won't manage the inflammation. HC to get the adrenals back to work only applies if the underlying disease for which you are taking the pred is burned out - otherwise there is absolutely NO point in stopping pred. Did you see the leaflet polywotsit flagged up the other day? The Guidelines it is based on say that quite clearly so if anyone were to try that - ask about the Recommendations.

academic.oup.com/ejendo/art...

[Angelsmummy]

Hi PRO I am taking 1000mg/880iu calcium/ cholecalciferol.Will look up the post you mentioned.Even though it was offered if I got to 5 mg I told them that I would sooner stay on Pred than have the HC .Guess I will just hang fast ,it will be a long time before I even GET to 5 mg,then maybe ask for another test then or lower to see if Mr Adrenal is working again!xx💐😜

[PMRpro Ambassador in reply to Angelsmummy]

Well quite.

Your vit D is the recommended intake - no reason to lower it but equally no need to take any more.

[Angelsmummy in reply to PMRpro]

Many thanks!xx💐💐😜

[CocoaChanel]

Why are you considering lowering your D3 dose? Is that 78 nmol/L? At my last blood test my D3 level was 127 - I was taking 6000iu. According to my results details/research 50 - 374 is OK and 100 - 150 is desirable. I am now taking 8000iu a day as an experiment to see how much that raises my D level at my next blood test in a couple of weeks.

From what I understand D3 is extremely important, far more than is realised by most of us and far more than reported (no money in it?).

[Angelsmummy in reply to CocoaChanel]

Hi Cc,wasn’t considering lowering it,just thought that maybe my readings were a bit high which is why I asked for advice!Quite happy taking it to protect my bones.As for the figure,that was all it said on blood results from Rheumy!xx😜