low cortisol

[AnniesRyder5]

I saw the Rheumy doctor over a month ago and her flippant diagnosis mirrored so many others’.

About the same time a random telephone health check from my health centre showed my BP was 175/75 and I was quickly prescribed amlodopine .

The rheumatologist was adamant my symptoms did not reflect PMR and ordered a blood test which I subsequently took. But not having heard anything back after 2 weeks I left a telephone message and a nurse rang me to say my cortisol was low and they would refer me to an endocrinologist.

I have no idea how long or when an appointment might come up but I have to say I feel really poorly. My joints are very painful, I am ridiculously tired an hour after getting up and other whinges / twinges.

So my trusty friends- my question is should I increase my pred from 5mg to 10mg? Would that alleviate my symptoms?

I’m not sure what a raised BP has to do with anything but it’s currently 149/68

Or do you have a better idea?

🥴

[piglette]

You could always try increasing the pred by 5mg to 10mg for a week and see if your symptoms improve. You could then drop back say to 6mg and see if that is OK. I bought a BP monitor and use an app, it seems to be called Blood Pressure. I just take my BP daily so I can see how my BP is going. BP can vary quite a lot depending what you are doing.

[PMRpro Ambassador]

Another keep it zipped moment!!! Of COURSE your cortisol is low - you are on 5mg pred which is plenty to suppress the adrenal gland production of cortisol, Duh ...

The trouble is, if you raise the pred to 10mg, that will entirely suppress cortisol production, it will go even lower if that is possible (not that it matters, the pred does the job). The only way to get cortisol to increase is to keep at a lower dose of pred until the body gets the message it is time to return from its pred-related holiday and do its bit. You have to weather this rubbish patch to get the adrenal function to return. Increase the pred and all you do is postpone the evil day.

Of course, if this is due to PMR inflammation too, you will need more pred but your rheumy seems to be a tad ineffective in that respect.

I'm a bit bothered about your GP's approach to your isolated systolic hypertension - that is where the upper reading is raised but the lower one is fine. They have now shoved the diastolic even lower while doing little to the systolic. If they were to increase the amlodipine you might end up with a diastolic that makes you feel even worse

mayoclinic.org/diseases-con....

This is a brilliant analysis:

ahajournals.org/doi/10.1161...

What you should do is check your BP at various times during the day, keep a record and work out the average figures - that should account for white coat hypertension and the natural variation over the 24 hours,

[AnniesRyder5 in reply to PMRpro]

thank you so much for putting it all into perspective

You’ve warned against this bad advice so often but somehow I still ended getting sucked into it.

🥴

And another laugh for you is that the pharmacist suggested I increase the amlodipine to reduce my BP!

😡

[PMRpro Ambassador in reply to AnniesRyder5]

Well no doubt it would - but it would almost certainly reduce the diastolic even further than the 68 it is at present And this blasted gubmint is telling us pharmacists can do things like prescribe ... Take diastolic down too far and you might have dizzy spells from that - fall down the stairs or something. And the article tells you what else is linked to too low BP.

I do wish I knew why GPs are so fixated on amlodipine - there are other options,

[Rachmaninov2 in reply to PMRpro]

The cardiologist who treated me after my heart attack said he doesn’t prescribe Amlodipine any more. I was given Losartan instead, now changed to Ramipril as Losartan is hard to come by apparently.

[PMRpro Ambassador in reply to Rachmaninov2]

Good for him!! I was on Losartan for a time, just a low dose of bisoprolol now.

[Rachmaninov2 in reply to PMRpro]

2.5 mg Bisoprolol for me. I think the Ramipril could be responsible for my increasing oedema, so need to speak to GP.

[PMRpro Ambassador in reply to Rachmaninov2]

I can't be given ACE inhibitors - had the itchiest rash ever that spread slowly. Luckily a weekend duty consultant recognised it as an allergic reaction - I had been complaining to ward staff for 4 days!

[Rachmaninov2 in reply to PMRpro]

Deaf ears, so frustrating. I know from personal experience. I have on two occasions had to tell ward staff I would have to discharge myself in order to get home and take my medication. They were unable to grasp that I had certain medications that I needed to take at certain times and with food.

[AnniesRyder5 in reply to Rachmaninov2]

so frustrating I agree

[PMRpro Ambassador in reply to Rachmaninov2]

Same here and timing is critical - though not as critical as before the cardiologist changed me from a 3x daily that had to be separated from the anticoagulant to a 1x daily that doesn't! From 5x a day to 3x at a stroke and they are all convenient times. Only trouble is now I have one time with 2 horse sized capsules - no chance of even me lying down soon after them!

[Rachmaninov2 in reply to PMRpro]

I feel for you. Sometimes I feel that medication is beginning to rule my life, if you include trying not to run out, ordering them, counting them out, taking them, coping with side effects and discussions with doctors about possible substitutions. I understand the benefits but it can get a bit much. Sorry for the moan, trying to avoid running out of Pred. at the moment due to someone else’s mistake.

[AnniesRyder5 in reply to Rachmaninov2]

That doesn’t count as a moan !

thank you and that doesn’t include the pharmacist’s input for example despite my trying to reduce to 4mg at one point she decided I should only be prescribed 5mg tablets.

Sometimes it feels like you’re not allowed to control your own life!!

[Rachmaninov2 in reply to AnniesRyder5]

Thanks!

I hope you managed to get the 1mg tabs. without too much extra hassle.

Yes we have to hang on to every bit of control we have.

[PMRpro Ambassador in reply to Rachmaninov2]

I am really glad life here is quite simple in that respect! If I run out, all I have to do is turn up at the village pharmacy where I get ALL my medication and the boss will give me one pack, sometimes I have to pay the full price but not always and it is refunded when the GP emails the prescription. If I ring the GP and ask for a script it can be there in 10 minutes if she doesn't have a patient with her at the time. Sometimes it takes a couple of hours. Worst scenario is having to drive up to the practice and wait for her to order them/

[Rachmaninov2 in reply to PMRpro]

If only! Is your broom cupboard still available for rent. 😄

[PMRpro Ambassador in reply to Rachmaninov2]

[herdysheep in reply to Rachmaninov2]

🤣

[AnniesRyder5 in reply to PMRpro]

the cure as bad as the disease!

[marionofnorwich in reply to PMRpro]

As I didn't react well to Amlopodine, what can you suggest that I should ask for? I also had Indapamide to supplement Amlopodine but it was just as bad

[PMRpro Ambassador in reply to marionofnorwich]

There are 4 different classes at least and various ones within that. I have no idea what is available in the UK these days - but tell your GP you can't cope

[marionofnorwich in reply to PMRpro]

Yes will do. Just need to tackle it really. Not exactly closely monitored but they do respond if I ask

[stevebran in reply to PMRpro]

Every time I visit this site I am amazed by the breadth and depth of knowledge and the sound advice dispatched. If I want to know something I can always find someone here who has experience as well as expertise. Thank you all, you really are a lifeline.

[AnniesRyder5 in reply to stevebran]

I totally agree - this site has helped me so much and answered my questions and I even trust the answers which is more than I can say for the official route!

[PMRpro Ambassador in reply to AnniesRyder5]

I suppose the point is we ADMIT it when we don't know!!!!! And look things up ...

[PMRnewbie2017 in reply to PMRpro]

NICE used to recommend an ACE inhibitor or an ARB as first line then add a calcium channel blocker if BP didn't reduce sufficiently. When i last checked 6 months ago the advice was the same unless the patient is of Afro-Carbbean descent in which case Calcium channel blockers are first line treatment.

[marionofnorwich]

Amlopodine at 10mg actually increased my BP and caused massive and painful leg swelling. 5mg caused swollen feet but no decrease in BP

[AnniesRyder5 in reply to marionofnorwich]

that’s my experience too !

[jayemmemm in reply to marionofnorwich]

I, too, had massive lower leg swelling. so I discontinued the drug after two months during which time there was no discernible change to my systolic or diastolic readings.

[blueisgreen]

I would increase to 10 mg only to see if that helps your symptoms. If it does, as I understand, that proves you have PMR.

[PMRpro Ambassador in reply to blueisgreen]

No, unfortunately it doesn't PROVE it is PMR, many things could respond to pred, but it is a brick in the wall of evidence in combination with the symtpoms

[blueisgreen in reply to PMRpro]

Sorry you're right. That's just the measure my doctor used for me.☹️I shouldn't have stepped into giving a medical opinion.

[PMRpro Ambassador in reply to blueisgreen]

It's fine - there are a lot of doctors who think it and they aren't correct. It matters because they then close their mind to it maybe NOT being PMR amd miss other diagnoses that might fit better. Patients need to know that.

[blueisgreen]

That's interesting because my doctor ruled out anything other than PMR when the prednisone worked so well. I spent 8 years on it and am finally done. Then again, the next week I got Fibromyalgia . I'm just learning about what that entails.

[PMRpro Ambassador in reply to blueisgreen]

Is it definitely fibro? Not persistent PMR?

[blueisgreen]

That's what the doctors say. They did various tests, but who knows. I'm thinking of going for a treatment for Fibro at Mayo Clinic in FL that specializes in it. Maybe they will know find out for sure. I'm with Kaiser in Denver and no doctor there specializes in it.