Adrenals

[Ruins67]

My PMR journey is probably in reality nearer 3 years long. From actual diagnosis from the rheumatologist it is just over 2 years.

I am currently taking 1MG of Pred a day. On Christmas Day I was admitted to hospital with a serious infection. This resulted from a UTI infection which the oral antibiotics did not work at the time. I had intravenous antibiotics, a chest x-ray and ultrasound whilst in hospital. The only anomaly was some inflammation on my liver (which can also be induced by the antibiotics apparently). The readings which indicate a problem with the liver were also very high, (sorry I don’t know all the medical terms). I left hospital after 3 days as the liver readings had gone down, and I was instructed to go back to my doctor for another blood test, I had stronger antibiotics and recovered. I had the blood test and was informed that if anything was wrong they would contact me. I didn’t hear anything. (All the symptoms for me at the time indicate I was in the early stage of sepsis, so I’m happy to be here). I was never given any reason for this infection when I left the hospital. There were murmurings of E. coli etc, but nothing specific.

What I have been noticing now is a new symptom. If I wake during the night or first thing in the morning, my face is very flushed almost red sometimes. I am 68 and all my life have been known as a pale face. The only time my face would get anywhere near pink was if I lay in the Sun or ran 5km. My blood pressure isn’t high and historically . I’ve always had low tblood pressure. I don’t drink and I have never smoked. I also don’t have any night sweats. This flushing I gather can be a symptom of cancer or endocrine disorders. I believe adrenals come under the heading of endocrine

My normal Doctor that I am registered with is now working part time. I have an appointment to see him early April. Primarily to discuss my PMR. Since being officially diagnosed with atypical PMR (having suffered with it and persevered I was able to do some of the exercises when I saw the rheumatologist at hospital. This contributed to a diagnosis of atypical PMR!!) I haven’t seen anybody for my PMR in 2 years. Googling and with the help of this group I have reduced my Pred intake over two years. Occasional flares and I’ve then gone back to more or less what I was on before the flareup. I still have symptoms of soreness in the back of my legs but not severe. I don’t have hip pain or shoulder pain. Whilst I don’t have excessive tiredness I find after walking the dog in the morning and doing housework I don’t have much energy left for the rest of the day. I do force myself to eat (not always the most healthiest of diet) but I don’t have a lot of interest in food and not much appetite. I’ve lost some of the weight I put on with the higher level of Pred and have more or less now stabilised.

I’ve been holding back upping my Pred dosage for a number of reasons. I don’t feel any possible PMR symptoms are serious enough to warrant it. I’m also wondering if my present symptoms are a result of the adrenals just not working? Or possibly a symptom of something entirely different.

I don’t want to waste this valuable doctors appointment, so I wonder if anybody could give me some advice on what questions I should be asking in respect of my PMR now and any tests when I see him. He’s a fairly good and listening Doctor which is why I’ve held out to see him (I don’t really know any of the others in the practice at all), and I’ve seen him on and off over 25 years.

[DorsetLady PMRGCAuk volunteer]

Some of that certainly sounds adrenals -ish…. So might be worth asking for a simple blood test performed in the morning at surgery - explained in link -

healthunlocked.com/pmrgcauk...

Not sure about other symptoms, but sure if you explain to GP as you have here, he will want to follow it up, and flushing can be associated with a number of issues, but needs to be checked,

Whereabouts are your legs sore? And does that follow any particular pattern ?

[Ruins67 in reply to DorsetLady]

Legs are sore at the backs of calves and thighs. It reminds me of after you’ve done a run and you get the ache the following day.

[PMRpro Ambassador in reply to Ruins67]

That does sound like inadequately managed PMR - it does involve the hamstrings sometimes.

[DorsetLady PMRGCAuk volunteer in reply to Ruins67]

Agree with PMRpro - is it there all the time?

[Ruins67 in reply to DorsetLady]

Most of the time. I have made an appointment to see my osteopath. Ironically, she is the one who suspected (diagnosed) me of having PMR initially when trying to sort out some soreness before over two years ago.

[DorsetLady PMRGCAuk volunteer in reply to Ruins67]

In that case it might be worth trying and extra mg or 2… at such low doses even 0.5mg can make a big difference…and at 3 years it’s highly likely your PMR is still around - despite what much of the paperwork and doctors may say/think.

[PMRpro Ambassador]

The fatigue and lack of appetite certainly could be put down to poor adrenal function but I'm not sure the flushing can be. When you were in hospital at Christmas, were you given extra pred to cover your poor adrenal function and the resulting risk of an adrenal crisis. In fact - an adrenal crisi can mimic an overwhelming sepsis so it is possible someone didn't realise what was causing the symptoms. So much for the new red emergency steroid card that was introduced because it was realised many HCPs (healthcare professionals) weren't sufficienctly aware of the problem amongst long term steroid patients!

I think you do need to ask if the GP will at least request a basal cortisol blood test - on a sample taken between 9am and 1pm will do for that. If it is under 100 nmol/L it suggests adrenal insufficiency, above 400 rules it out and in between shows to what extent they have recovered.

ouh.nhs.uk/biochemistry/tes...

will back this up if your GP is unfamiliar with its use. If the level is in that intermediate range it might be useful to do a synacthen test to assess if you have any reserves.

[PMRpro Ambassador in reply to PMRpro]

And a PS - sometimes seeing a different doctor can result in pleasant surprises as they often have fewer preconceptions about you.

[Ruins67 in reply to PMRpro]

Thank you for that comment. I’ll take that on board.

[Purpleprimate]

I'm not sure what antibiotic you were on in hospital, but I landed up in A&E when taking Nitrofurantoin as it was damaging my kidneys & liver.

[Ruins67 in reply to Purpleprimate]

hi sorry this is a very late reply to you. I’ve just discovered that the antibiotic I was on before I went into hospital was nitrofurantoin. What were your symptoms caused by this antibiotic on being taken into hospital? I’m seeing my GP tomorrow finally so I hope to get a few answers.

[Purpleprimate in reply to Ruins67]

I was asked to take the antibiotic prior to the day operation which was then cancelled, so I kept on taking it for another 5 days. I was then asked to take it after the operation & that's when I started to get a bad reaction. Symptoms, feeling as if I was going to vomit, be sick & altogether not well. Went to A&E where they checked my bloods & told me to stop the nitrofurantoin immediately - two days later I felt back to normal. It could be because the op was cancelled & I was taking the antibiotic for longer than usual that was the problem, you would need to ask a doctor about that.

[Charlotteab]

My understanding is that Prednisone can cause flushing and rosacea. I sometimes get intense facial flushing on my cheeks in the evenings, to the point where it looks like I have clown makeup on. However, since I've started tapering my pred dose, I've noticed that the flushing doesn't happen as often, or as intensely. I did get a flare of it last week after being outside in a cold wind for an hour but it was gone again next day.

[Ruins67 in reply to Charlotteab]

Thanks for your response. The funny thing is I didn’t get any flushing when on high doses at the start of my PMR journey. The facial flushing has only started early this year when I was down to very low dosages of 2MG and one MG.

[PMRpro Ambassador in reply to Ruins67]

Facial flushing can happen in poor adrenal function - which is a fair expectation when you are at low doses of pred if the adrenal production of cortisol isn't recovering and keeping up with the reduction in pred dose.