Cronic fatigue, nausea and loss of appetite.

[Whatawonderfullife]

Good evening everyone. I haven’t been on here for a while and I have to admit I’ve been feeling a little smug, reducing my pred down to 2.5mg with the help of 20mg of methotrexate, but the down side being diagnosed with fibromyalgia.

However this week I have come crashing down to reality, I am feeling quite awful. The pred (2.5mg)was reduced a week last Tuesday, six weeks since reducing from 3mg. That was ok but since the 3mg, I have been feeling a little more fragile, not being able to do as much, suffering from fatigue and the headaches were returning. My doctor suggested I go onto a headache treatment Topiramate, originally prescribed by the neurologist, slowly introducing it over the month to full strength by the end of 4 weeks and a follow up phone call. I seems to be better as far as the headaches were concerned but in the night if I needed to get up I felt very faint and extremely nauseous, needing to raise my feet above my head, with the help of my husband. The decision was to reduce the propranolol 10mg a week but I am finding I am feeling constantly nauseas and fatigued, lacking appetite, and just unwell. I am beginning to have headaches and my eyes are playing up, I see like a heat haze and some times an almost slow motion picture. I couldn’t get an emergency appointment with a doctor and the receptionist told me I needed to go to the opticians? I suppose my question to you lovely people is, could this be my adrenal gland struggling or would it have kicked in already. Or the reducing, I really don’t know if this is what to expect with all the chopping and changing of medication or should I push for an appointment? Sorry for the essay

[piglette]

Quite possible it is your adrenal glands. I have found that if you have the deathly fatigue etc it is not a good idea to reduce but to hang on at that dose until things improve.

[Whatawonderfullife in reply to piglette]

Oh thank you Piglette. Should I go back to 3mg? I hadn’t got over the fatigue on 3mg so I was in a bit of a hurry to go down another.5mg? I hadn’t even thought about that because I’d been told the GCA had gone and just to reduce off of the pred. Thank you again

[piglette in reply to Whatawonderfullife]

It does seem that a lot of doctors totally ignore the problems of the adrenal glands getting back into action. If they even know about it!!

[Whatawonderfullife in reply to piglette]

Well it would certainly save a lot of worry if they did because I’ve been so worried and not being able to get past the doctors receptionist is always a challenge especially when energy is low and brain fog is rife. I knew I should’ve come on here earlier but I tend to feel there’s others people with more need than me. A sigh of relief 😮‍💨

[PMRpro Ambassador in reply to Whatawonderfullife]

Don't be daft!!! If you have a problem - you need to be here throwing the ideas about.

[piglette in reply to Whatawonderfullife]

Join in, all for one and one for all!

[Flivoless in reply to piglette]

Uniti stamus, divisi cadimus - United we stand, divided we fall.

[piglette in reply to Flivoless]

Ne nothi tere te

[fmkkm in reply to piglette]

So true! I’m down to 2.5 mg and struggling with brain fog and fatigue so I asked my Rheumatologist for some adrenal tests. She said it wasn’t in her scope of practice even though that office has been treating me since the beginning 6 years ago. She said go to an Endocrinologist. 🤷‍♀️Now the problem is like everywhere, months to see a specialist, I can only laugh at the absurdity 😂.

[piglette in reply to fmkkm]

I have just given up. I have even paid to have my blood tests done privately, so I can get feedback.

[PMRpro Ambassador in reply to fmkkm]

No-one asked her to PRACTISE - doing the blood test is the start you need!

[Purpleprimate in reply to fmkkm]

You could go to a consultant which will cost you a little, & if he suggests tests get him to write to your GP requesting them, or they might be able to refer you somewhere else on the NHS. It CAN speeds things up.

[Purpleprimate in reply to Purpleprimate]

He should be 'they'!

[Viv54 in reply to fmkkm]

So many things not in their scope of practice, I could write a list !.trouble is I'd be here for hours !🙄

[Lovetobe in reply to piglette]

I asked my doc yesterday if my headaches could be due to Adrenals and she said ours don't kick back in till off pred !! 🤷‍♀️🙈

[PMRpro Ambassador in reply to Lovetobe]

Oh dear - and in the interim????? Why don't they put their brains in gear before opening their mouths ...

[cycli in reply to PMRpro]

not enough room to fit them both in

[Longtimer in reply to PMRpro]

Now you are asking the impossible!...patient

I find some of these comments quite worrying from the so called medical profession.....the wrong info et c could be quite dangerous for a patient.....another doctor in a practice treating a patient by following what his colleague has written!......

[DorsetLady PMRGCAuk volunteer in reply to Lovetobe]

Ohh- flipping heck, where did she learn things, from the back of a cereal pack?

[Sharitone in reply to DorsetLady]

Assuming she used 'Clinical Medicine' on her course, it says on p. 1084 'The most common cause of secondary hypoadrenalism is long-term corticosteroid medication...The hypothalamic-pituitary axis and the adrenal may both be suppressed and the patient may have vague symptoms of feeling unwell....Weaning off steroids is often a long and difficult process'.

So she has no excuse.

[PMRpro Ambassador in reply to Sharitone]

Mmmmm - except it doesn't explicitly say that it starts as a top-up process to maintain a level of corticosteroid in the body ...

[Sharitone in reply to PMRpro]

So maybe she does have a teensy excuse. The bit I find astonishing is the patient may have vague symptoms of feeling unwell. No kidding!

[PMRpro Ambassador in reply to Sharitone]

Obviously never experienced it themselves!!!!!

[Whatawonderfullife in reply to Sharitone]

It’s a shame they haven’t, I think they may try and help a bit quicker if they had suffered it!

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

Perhaps she skipped that bit!…or was a bit ‘vague’ herself…..

[piglette in reply to DorsetLady]

Probably the Daily Mail!

[Lovetobe in reply to DorsetLady]

I'm thinking so Dorset Lady the way she is treating my head pain. My crp was fine but couldn't see a result for esr !

I have a sore inside my nose, apparently its turbinate hypertrophy, I have none of the usual symptoms ie sinus issues, so maybe its causing my headaches 🤷‍♀️

My eye sight test was all good, so fingers crossed no GCA.

I'm due to start 5.5mg next week, so I will see how I go.

I guess I need to find yet another doc that understands adrenal functions and polymyalgia!!

[DorsetLady PMRGCAuk volunteer in reply to Lovetobe]

Good luck with that, then…

[Lovetobe in reply to DorsetLady]

🤣🤣🤣

[PMRpro Ambassador in reply to Lovetobe]

Don't hold your breath ...

[Lovetobe in reply to PMRpro]

🤣🤣🤣🤷‍♀️

[Whatawonderfullife in reply to piglette]

Thank you, I will 😊

[PMRpro Ambassador]

Adrenal function doesn't "kick in" - it returns slowly over time and it takes time, sometimes lots of time. What you describe could well be due to adrenal insufficiency and under the circumstances it always beats me why they look for zebras rather than starting with horses ...

[DorsetLady PMRGCAuk volunteer]

The changes in medication may not have helped certainly snd in hindsight if you were feeling a bit wobbly on 3mg probably not a good idea to reduce. At such low doses, 0.5mg really can make a big difference. I’d be inclined to go back to that dose, really get stabilised before you think of reducing again.

..and maybe have a look at this re adrenals - they need nudging gently into working again

healthunlocked.com/pmrgcauk...

[Whatawonderfullife in reply to DorsetLady]

I will take a look thank you

[Whatawonderfullife in reply to Whatawonderfullife]

I just don’t understand why the medical health professionals don’t explain what to expect and how to counteract it. I’ve been feeling so unwell and you lovely people have put my mind at rest. Thank you, I will let you know how I get on 😊

[PMRpro Ambassador in reply to Whatawonderfullife]

A lot of the time they aren't aware - or knew it once and don't join up the dots.

[calibriel in reply to DorsetLady]

Thank you for the link - it’s made me understand much better what’s happening to me

[Mack100 in reply to DorsetLady]

Absolutely on the money about how a 0.5mg reduction in pred can set you back. Reading that some rheumatologists like to maintain people on a low dose for some months I had decided to get down to 2mg and stay there for a few months.

At 3mg I felt I was doing well in my tapering regime but during the month long DSNS taper I was aware that things were not quite right but I persevered. After 2 weeks into the full 2mg the aching in my shoulders and legs became almost unbearable making climbing the stairs an absolute chore.

When I had to ask my wife to lift one of my telescopes for me I realised that I had to take action so I went back to 3mg. The effect was felt within 24 hours so I shall stay at this dose until the end of September and then try again.

[Temeraire]

Just a thought- in addition to adrenal problems there is the Topiramate to consider. Could the nausea, dizziness be a side effects of this too? Its complicated isn’t it, but 3mg pred is still a low dose and if you felt better I’d stay there a while anyway. Hope you feel better soon 🤞🏻

[HeronNS]

So glad you popped in here and asked your question and received the answer which was so obvious to many of us, if not your doctors! Love PMRpro's answer, why do the docs look for zebras first instead of looking for horses! I expect you'll be all right if you return to 3 for a little bit, and when you are ready taper to 2.5 use a very slow taper method, not overnight. You may even want to consider doing each step of a slow taper twice over to slow things down even more. It wouldn't hurt to get yourself into the queue for adrenal testing because very rarely people find their adrenal fiunction is not returning and they may need a low dose of pred (or equivalent) indefinitely. It really can take a long time and has nothing to do, really, with whether your PMR/GCA is gone or not. It's a pred-induced deficiency and the body just needs time to understand it has to pick up the pace of its own cortisol production.

[Whatawonderfullife in reply to HeronNS]

Can I ask how do I go about asking for a test?

[HeronNS in reply to Whatawonderfullife]

Usual way - ask your doctor!

I had a morning cortisol test, which showed I have pretty normal cortisol production even after years on pred. The other test is called synacthen, and I haven't had it, but it is designed to find out if your adrenals are capable of producing cortisol. You have to be at quite a low dose of pred for either test to be useful. Three mg should be fine for the test.

[Whatawonderfullife in reply to HeronNS]

Great thank you. I wasn’t sure if I needed to speak to my rheumatologist.

[SRIXON]

WAWL I hope you are feeling better and I would like to thank you for helping me with yours and others comments. For months I have suffered with severe fatigue, nausea and Jelly legs that can come on any time of the day, if I'm out walking I need to sit down. I see my doctor he says it's my type 2 diabetes and the fact I'm on a number of meds for this, BP and predesone which I increased couple if weeks ago from 2 to 5 and now to 6mg. He says although it helps these mess are almost like a helpful poison. Again thx Carl xx

[Purpleprimate]

Just a thought - I saw a consultant neurologist recently & one of the symptoms I was complaining about were migraine type headaches varying in degrees of pain. He suggested trying 400mg Vit B2 daily in the morning. It has worked for me. He said stop the B2 after say 2 months to see how things are, & restart if headaches return.

I personally try to avoid all medication if I can get away with it as they all have side effects. Unfortunately I have to take Pred (trying to reduce) but found methotrexate intolerable & my hair started falling out.

I do hope things improve for you. All the best.

[Whatawonderfullife]

Thank you everyone for all your helpful advice, why I didn’t come to you earlier I don’t know. I’ve taken 3mg this morning and I have to say, I already feel more like myself and able to take on the day. I’m very grateful and to think you came back with these answers within minutes, thank you 😊

[DorsetLady PMRGCAuk volunteer in reply to Whatawonderfullife]

“why I didn’t come to you earlier I don’t know. “..,

Neither do we, but pleased you’re here now..😉

[Whatawonderfullife in reply to DorsetLady]

I think I was just getting all muddled with what it could be with meds GCA and Fibro 😂

[DorsetLady PMRGCAuk volunteer in reply to Whatawonderfullife]

Not a rebuke I assure you…but many on here have Fibro as well…..

[Tiredofpmr555]

When you get to 3 mg. is when the trouble starts. I had the fatigue, nausea, indigestion and had a three month wait to see an endocrinologist. I was afraid to reduce more but decided to do it anyway and I wanted an end to prednisone and was down to 1.5 by the time I saw the endocrinologist. For three months the symptoms continued and I even had two separate events of stabbing pains in the stomach area for eight or nine hours followed by late night vomiting and diarrhea that lasted until the wee hours of the morning. This is what happens when the adrenals start functioning again-maybe not in everyone but when I finally was tested by the endocrinologist my adrenal output was fine. It was a very bad three months but I am on the other side and that's all that matters.

You may be going through the same thing and will have to decide if you are ready to keep reducing to get off of prednisone Good Luck!

[SheffieldJane]

Oh gosh yes Whatawonderfullife! You need to have your Cortisol levels measured. Your doctor should refer you for a morning cortisol test and or a Synacthen test. Your symptoms sound text book for adrenaline deficiency. Please insist on the referral, this could be very dangerous if it leads to an Adrenal Crisis. This is not a time for suppressing symptoms, it is time for an urgent, correct diagnosis. If you get nowhere at primary care level then I think this warrants a visit to Accident and Emergency. I am astonished at the complacency with which you are being treated. I was supplied with an emergency hydrocortisone injection kit to be given in the event of an adrenal crisis. I was on 5 mgs of Pred. My Synacthen test had shown that my adrenals were struggling. Fortunately my own adrenals kicked properly into gear by the time I got to 3 mgs of Pred. Good luck, act now!

[Whatawonderfullife in reply to SheffieldJane]

Thank you, I’m back onto 3mg and already feel much better. Still a little fragile and fatigued but nowhere as bad as before. I needed to rest at the top of the stairs after climbing them, I felt so nauseous from fatigued. I am grateful for all your advice and will let you know how I get on 👍🏻