Hopefully on my final leg of the PMR journey and have been on less than 5mgs for nearly a year.
First of all, my GP tells me I should not need pred once down to 5mgs or below as my adrenals provide 5mgs naturally (totally ignoring my protest that over 2 years on steroids will cause adrenal suppression ).
Then a senior member of the staff at my gym, who knows only too well the journey I have had and the changes I have had to make to accommodate PMR, tells me the pain might be psychological and a dependence on pred.
OK, so can i have your opinions please.
I am now on 1mg using DSNS method and am pain free ( 2 weeks now at 1mg)
Last CRP was 5.
I am exhausted , my BP is running at 105/60. ( low for me no anti hypertensive meds )
pulse 45 at rest.
I have abdominal pain nearly all the time and my bowel habits alter from loose to constipation (excuse the detail)
Today in desperation I took an extra mg despite being pain free .
I feel a little better and abdo pain has improved.
Going to ring my GP tomorrow and ask for adrenal function test i think ,but would welcome your comments.
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larkthebark
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It looks like your GP does not understand the effect of steroids and the adrenal functions. One wonders what else some of these doctors do not understand. A bit worrying to say the least.
I am quite prepared to stay on low dose pred and i would agree my PMR is probably still active but i think i shall ask for another opinion regarding my adrenal function. Thanks again for your support
trouble is tho, they are in charge of prescriptions. My GP reduced my repeat from 152 to 56 1mg Pred without telling me. I had a flare and decided to take 5mg for 5 days then drop to 2.5. The dose I was on. I didn’t have a big stock and had to ask the pharmacist for more.
GP didn’t bat an eye lid when I told her I had run out . Now getting 84 on repeat .
my GP originally told me they had 100s of patients with PMR. So perhaps I am the only one on Pred for a length of time. Just 4.5 months. The rest obviously made it in 2 years. Good for them
says "The percentage of misdiagnoses was very high (87.1%): among 134 patients diagnosed with PMR by their GPs (group A + group B) confirmation was made in 41, and in 169 unrecognized PMR was found. "
I can only comment on my experience obviously but this is what happened to me recently.
About four months ago I had the early morning cortisol test,( I was on 5mg at the time,) and the reading came back at 159,the Rheumatologist told me this was borderline.
Last week,now down to 3mg I had the same test and this time it came back at 369. I assume that the gradual reduction has kicked my adrenals into working harder but I await the comments from the wise one.
Like you I suffer with constant fatigue and lack of energy and have done for the last year,sadly I can't get a response from my G.P. or Rheumy as to what this might be due to.
I guess there is every possibility that you may be too low on the pred' but for sure you shouldn't take risks and end up with a flare up. If your symptoms reduce on the higher dose then stay there until you get a more definitive explanation.
A simple basal cortisol level is no more expensive than any of the other blood tests they should be doing. And a lot cheaper than a full-blown synacthen test.
Me - I'd certainly change my GP if I could. As for the gym - avoid that numpty.
You are demonstrating almost all the signs of adrenal insufficiency. A resting pulse of 45 is really bordering on needing investigation. Is it new? When did it go that low?
Just asked my daughter who works in the ED - she says that it at least merits bloods - but GPs seem incapable of requesting them!!! And if that bradycardia is new - you need at the very least an ECG.
What is also, in my opinion ,confirms my suspicions that my adrenals are asleep, is that i am allergic to wasp stings.
I was recently stung and had to call for an ambulance.
My leg was swelling up and i had severe abdominal and back pain after injecting myself with 0.3 mgs Adrenaline.
I also self administered 5mgs of pred and 4mgs Piriton.
When the ambulance crew arrived within 2 minutes of the event they recorded my BP as 120 /70 with HR i cannot actually remember because i was still in shock.
I suppose it would have been worse without Adrenaline but my BP was still lower than i expected as i was really stressed out .
Tomorrow I shall definitely fight my corner but what concerns me most of all is folk out there with limited medical Knowledge who may need help and dont seek advice from sites like this one .
Must admit i didn't realise it was that simple. I thought they had to do 24hr urine samples but that's me going back to my training days with Florence.😂
Not 100% but it gives a very good approximation with a simple blood test the GP can do without referral to the hospital for a synacthen test - which for the patient still on pred is as good as it gets anyway.
The ones who get antsy are the not so good ones - the really good ones just want to get into a sensible discussion!
I had appointment with my GP last Wednesday, and Bloods today. Had intended going for the blood test BEFORE taking the Pred, but the GP stymied that one by taking the bloods herself! Receptionist told me the other day that everything was "normal". I haven't a clue what tests were done!
Have phoned GP surgery this morning and they cannot fit me in for either a phone consult or an appointment until the 10th.
obviously if my symptoms worsen i shall push for and earlier appointment but will, in the meantime stay on a slightly increased pred dose.
Just to reassure you I did have a three lead ECG taken in the back of the ambulance and it was a normal sinus Rhythm with no evidence of any prolonged P R interval .
Thankyou everyone for your comments .
I am seeing a doctor new to the surgery ( face to face !) so perhaps a fresh eye will help me get some answers.
Hi whippet. I had a before 9am cortisol test this morning but I take my Pred the night before at 11 pm. I wasn’t told to do otherwise. Should I not have taken it?
I don't think it is a problem - the purpose of the blood tests is to see how you are getting on on your current dosing schedule. And that includes what time you take it too.
I think the usual advice is not take prednisolone for 24 hours before the test. At about 9am the body's natural cortisol is at its lowest. It is suppressed by prednisolone. If your test is normal it will show that your adrenals are working normally. But if the level is low it may be because of the pred rather than poor adrenal function.
I still didn`t get offered an emergency injection last week, when I saw the useless Endo...in case of adrenal crisis, she just said double your steroids!....
Oh dear - that is a bit concerning! If you are having a real adrenal crisis you are not always going to be well enough to swallow tablets. WAS she an endo?
I have been through this before with surgery saying the Endo should prescribe it! they saying surgery should....when I take in the form for doctor to prescribe HC I will be asking to "see" someone while I stand there....if they say no-one is a available I will say I want someone to ring me, then I will ask them directly either way..do you think if I have an adrenal crisis, I will have time to get HC into me before it becomes fatal!...putting them on the spot!...I am in that mood as you can guess....so fed that in two weeks have rung my surgery 5 times with no reply, they have stopped patients going online, and have told patients ring up (joke!)or queue up at 8am in the morning for the 3 vacancies to see a GP!...when we are ill.....
No she wasn`t an Endo, not sure of her position, but not listed as one....weighed her up straight away...only positive out of seeing her was getting cortisol reading!
Poor Max, he tried once before to get the emergency injection....he was disgusted that my GP, and Endo dept passed the buck to each other...so I didn`t get one!....but if I have to I will speak to his secretary to put him in the picture, but I can imagine them using the excuse that my cortisol readings are now higher....
I did get an emergency injection kit about 3 years ago & then asked for a demo which I did get from a practice nurse & they are available as a video on the Addison’s website. I dread the thought of being well enough, in a crisis, to use it however! The endo I saw 3 months ago suggested my husband & I have an update from the endo nurse but heard nothing. Incidentally, also extremely allergic to wasp stings !
Need to vent my rage!....A week ago I told Brett at HU I was still having the keyboard problem...he has just sent the same repeated reply as twice before....and I have told him twice before I have NO keyboard settings on...but it seems to me, if you don`t have the latest equipment (I`m ok here on desktop....at the moment) they don`t care...I feel like he is taking the....you know what....suggestions while I go and make a cuppa!
This reminds me of years ago when Patient website changed and became too awkward to use...so came here.....
unfortunately Brett’s only the go between -he’s not part of the technical team. So he probably gets fobbed off with what they tell him, without necessarily understanding it any better than we do.
..and yes the IT bods probably think everyone has the latest super duper version…
Hello lark the bark. I had a cortisol test just over a week ago. I requested it as I had been feeling extremely tired, very hungry and generally unwell. I was on 5.5mg of Pred. My cortisol level came back at around 30! My GP spoke to an endocrinologist who requested that I up my Pred to 7.5 mg. I felt upset about this at the time but I do feel a lot better. I have also been referred to see an endocrinologist to taper slowly under their watchful eye (let’s see?).
I’m responding to your post as all of the things you have mentioned - abdominal pain, bowel changes, blood pressure and pulse rate are all questions I was asked due to my low cortisol result and concerns of potential adrenal crisis. I hope you sort things out. Look after yourself. 😀
Good morning and thanks for your input. Excuse my ignorance but i thought Hydrocortisone was used in secondary adrenal insufficiency but it may be only when you are below a certain dose of steroid therapy.
What dismays me the most and i quote my GP told me 'There is no reason why your adrenals should not be working ' . I have been on steroids since May 2020.
I shall try to talk to someone else in the surgery this morning .
Oh I had a similar quote about my adrenals from my GP when i asked several times about my adrenals, as i felt so awful. Long story short, when i did eventually get a synachten test i was told my adrenals were basically useless. Hopefully that wont be the case for you but its really scary how these medics just wont listen to people. Good luck, let us know how things go.
larkthebark has explained - and like the other tapering methods you will find it in the FAQs. The link for them is at the top of every thread, immediately under the original post. And if in doubt - you are likely to find the answer to many questions in the FAQs so you don't need to wait for us to come along.
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Think I am having a spike should I hold tight?
Should I contiue with latest drop when feeling dreadful fatigue etc most days?
Am I undoing any good I may have done?
I am going round in circles trying to decide what do for the best!
Steroid dosage pre synactin test
