What’s my diagnosis?

[Broomser]

Hi, this is my first post, and would welcome any comments that might help me understand what is going on. Like many, I have doubts about my “diagnosis” and treatment. I was experiencing Cushing type symptoms (fatigue and muscle wasting in arms and legs and fat at back of

neck, headaches and fatigue) over the last couple of years. I asked for testing and endocrinology referral but GP did not think my symptoms warranted investigation. Most recently (5 months ago) I felt unwell while on holiday in Florida. Fat behind neck and across my back at shoulder level became more pronounced and painful, headache, constant tinnitus, mild fever/ sweats and upper chest pain at neck level mirroring what I had across my back. I went to a local walk in clinic for an examination. The doc was not able to diagnose, but I was glad of the meds he prescribed which worked a miracle

In 48hrs (steroids 20mg reducing, antibiotic, tramadol for pain relief). On returning home, and on tailing off steroids, I became unwell again with same symptoms. Went to GP who said my symptoms were “ quite vague”. She ordered neck and chest x-ray and bloods. She called me the next morning asking me to go to straight to the hospital as my blood test revealed very high CRP.

Hospital said CRP and ESR were sky high and that I had “probable GCA”. Eye scan / tests were OK. They put me on 60mg pred. and arranged CT of chest, abdomen and pelvis (clear) and TA Biopsy. Biopsy was negative, and again, symptoms and blood markers subsided quite quickly to normal levels with high dose pred. Follow up with rheumatologist - said it was not GCA or PMR, and she did not know what was causing symptoms. In my opinion, my symptoms were not classic GCA (no scalp tenderness, no jaw claudn. no pain anywhere else). I have reduced down to 10mg pred and now going down 1mg per 2 week intervals. Basically, I still don’t know what caused my illness, nor do docs. They want me off pred ASAP and want to adopt a “wait and see” approach. My worry is I may have been developing cushings before the onset of the more recent illness bouts and the effect of the steroids has exacerbated my condition. Another GP told me that the early symptoms were unlikely to have been cushings but early symptoms of GCA /PMR. Sounds plausible. There is a lot of knowledge out there on the forum, and I would welcome any opinions and advice.

[SheffieldJane]

Hello and welcome to posting on the site. The main thing that struck me apart from Cushing appearing seemingly spontaneously, is that of course your bloods appear normal on high dose Prednisalone, everybody’s would. You need a Rheumatologist who understands GCA and PMR. The GP in your last paragraph may be on to something. Any GCA symptoms like headaches, jaw claudication, swollen tongue, tender scalp, temple pain must be treated as a medical emergency. Your response in 48 hours to ( albeit) in a cocktail, to Pred. points to PMR though. You need a better doctor, and quick.

[Broomser in reply to SheffieldJane]

Thanks for your reply. I am passed around the GPS in the practice. Gone are the days when you had a designated family doctor. There is no ownership of my condition. I think you are right, I would say PMR is the most likely, but getting off pred “ASAP” worries me somewhat. I have a telephone appointment in a few days to discuss pred dosage / progress.

[Hidden in reply to Broomser]

Hi, I got the fatty ‘buffalo hump’ when first on steroids at 22mg for GCA & PMR (11 yrs ago) The lower the dose, the smaller the fatty tissue became releasing some of the added stress to my neck. No two people have exactly the same symptoms at the same stage. My Dr diagnosed me, by the blood tests & the description of my symptoms. & Mentioning My fast failing eyesight -down 5 1/2 prescriptions in 10 months. When I developed the appearance of Cushings disease I was told it was brought on by steroids. If it didn’t subside as the dose came down, I’d need the head scan. You’re the first I’ve come across to have Cushings Before starting steroids! I hope you get to the bottom of the diagnosis pit soon.

[Broomser in reply to Hidden]

Thanks for your post BabzAnn. I only suspected cushings before the steroids, but was not tested to rule it out. As I mentioned, at my last GP visit he was skeptical that I had cushings, and put symptoms down to early sign of GCA / PMR. Due to potential eyesight risk, I had an MRI of “orbits and brain”. Scan was OK but it was not a scan which would show the pituitary gland, so the scan would not rule out cushings. I agree with earlier post regarding endocrinologist.

I will see what happens as pred tapering continues over the coming weeks.

[SheffieldJane]

Having looked briefly at the internet, it seems that spontaneous Cushings disease can occur when your body produces too much Cortisol. Perhaps it is an Endocrinologist that you should be seeing if these symptoms remain your most worrying ones. It is a rare but significant disorder with a number of causes.

[Broomser in reply to SheffieldJane]

I asked my GP to test my cortisol last year. They did gen bloods but not a proper cortisol screening test. I expect there is no point in going a test for cortisol now I have been on pred. A test back then would at least have ruled out cushings and point towards PMR.

[Soraya_PMR]

But if it was Cushings, (high cortisol) you’d not have felt better by adding more steroids. Do you have a crazy thirst?

Hypothyroid? With goitre?

There’s an autoimmune type, Hashimoto’s thyroiditis, I have no idea if steroids would have any beneficial effect on that????

mayoclinic.org/diseases-con...

Otherwise I suppose it’s wait and see as the pred is reduced.

[Broomser in reply to Soraya_PMR]

You make a very good point. I thought pred would provide relief of cushings symptoms as well as GCA/ PMR. Thyroid was normal. No crazy thirst. As you say, it’s wait and see as pred goes down.

[Soraya_PMR in reply to Broomser]

No. The last thing you throw at Cushings is pred! In fact it’s often caused by steroid medications (don’t forget inhalers and skin preps as well as pills) and the treatment there is to stop exogenous steroids.

[my terrier has Cushings, at her worst she would drink 6 litres a day!!!!! She’s now on pills to prevent her adrenals overproducing cortisol, but boy oh boy is she fat. Pot bellied with sticky legs. This despite a carb free stingy diet, with an INSATIABLE appetite! That’s Cushings for you]

[Broomser in reply to Soraya_PMR]

My understanding is that Cushing’s syndrome is caused by steroids, (cushingoid features). Cushings disease is different, endocrine related (pituitary / adrenal glands). Sounds like I have the former.

[Soraya_PMR in reply to Broomser]

Correct. But I don’t think you have it! Why the good response to steroids? Just wouldn’t happen with Cushings.

[Broomser in reply to Soraya_PMR]

I was experiencing body changes consistent with some (not all) cushings symptoms before my recent referral to hospital (due to symptoms and high inflammatory markers CRP and ESR) and before being put on steroids for “probable GCA” (despite symptoms not being classic GCA 🤔). My pre-referral symptoms therefore cannot be fully explained, but as you say, due to good response to steroids, likely not cushings. So to recap, I was given a massive hit of steroids to protect my eyesight in the worst case that I had GCA. I have marked cushingoid features. Rheumy and Opthalmology, gave all clear after TA biopsy, CT and MRI scans and bloods (CRP and ESR returned to normal). Rheumy says no evidence to confirm GCA or PMR, so get off steroids ASAP and wait and see.

GP says tests do not rule out GCA/PMR, and some of my early symptoms such as fatigue / muscle atrophy / neck pain most likely to have been early signs of GCA/PMR. Hyperkyphosis is also a definite contributory factor to neck pain / hump. I am so grateful to you for your help. I will post updates as I come off steroids, and hope that I don’t have another onset.

[Soraya_PMR in reply to Broomser]

GP is right. TABs can give false negatives, as in they can’t find what they’re looking for in that particular piece of artery, but it doesn’t prove conclusively that you don’t have GCA.

CRP and ESR should normalise due to pred, so to say they’ve normalised therefore you don’t have it is similarly incorrect.

Yes do keep us updated as you reduce. I’m also intrigued as to what your final diagnosis might be.

Remember, if you have any visual problems, blind spots, net curtain or waterfall effects, double vision.....get thee to A&E in great haste! Calling an ambulance via 999 is appropriate if necessary.

[PMRpro Ambassador in reply to Broomser]

Cushing's syndrome is the descriptor for the symptoms of an excess of corticosteroid in the body. Just like PMR is a descriptor for a set of symptoms that can be caused by a variety of underlying causes. Cushings disease is due to a fault in the production process in the body for cortisol, the body's natural corticosteroid - essential in the correct amount for normal function and without it we become very ill. But too much leads to side effects of various sorts. There are a few reasons the body makes too much - including benign tumours. In our case, when we become Cushingoid it is slightly less of a concern since we do know WHY: the excess is due to the pills, not something wrong in the body. If you have a problem producing the right amount of cortisol and become Cushingoid - increasing your pred will add to those effects, not mitigate them.

[Soraya_PMR]

Hyperkyphosis?

posturepossible.com/fix-hyp...

[Hidden in reply to Soraya_PMR]

Thanks for this. My hump is larger gone but my usual sore spot as reappeared. New exercises may help.

[roshough]

Have you had your ESR +CRP checked again since reducing the steroids? ?

I didn't ever have a definite diagnosis. ..just " a presumptive diagnosis of large vessel vasculitis " But.....on this basis was treated with high dose prednisone reducing over 2 1/2 years basedon levels of the inflammatory markers.

It's very odd. ..impossible? To have cushings before starting pred. And steroids wouldn't have helped at all. Ask for a second opinion at the hospital.

[Broomser in reply to roshough]

I do accept that cushings disease was very unlikely but not impossible. I was experiencing cushings type symptoms last year before I fell ill in February.

When I was hospitalised in February for tests, they did not test cortisol levels and did not consider cushings disease. My "diagnosis" of "probable GCA" led me to high dose steroid treatment. I did not have classic GCA symptoms, and my GP also thought this was a bit of a "left field" diagnosis.

I had my first follow up assessment by the same rheumatologist 11 weeks after initial assessment and GCA / PMR was ruled out (based on negative TA Biopsy / symptoms / normalised CRP / ESR and satisfactory MRI and CT scans). I was told to come off steroids asap and wait and see what happened (seriously!).

I have therfore no diagnosis of what caused the inflammation, or where in the body it occured. My CRP was checked last week (at 15mg steroids reduced from starting 60mg in feb) and it was normal. Earlier CRP and ESR checks when I was on a high dose (30mg) also returned normal. So, as I reported earlier, I have no diagnosis of what caused the inflammation, or where in the body it occurred. PMR is the best guess at this time.

So, wait and see it is! - meantime I am beginning to resemble Soraya_PMR's terrier!