relapse??

[Fiddlemum]

Had a rotten flu/chest 2 months ago…since then felt as if certain pmr symptoms may be returning.

stopped pred in March- had terrible mental health problems- go treating that- but recently I am feeling really rough. Wobbly weak legs- hip/thighs twinging . Nausea- no appetite. When you go down mental health route they seem not to want to talk about anything else. Leading up to my original diagnosis-I had rotten depression as well as the soreness- crp and ear were raised and I felt much better after the pred. In March- they said to ditch the 2mg pred because of mental health- didn’t want to entertain Adrenalin stuff.

I have made an appointment to have bloods done on Thursday- it’s a year since my last.

Any encouragement please????

I’m. Bit at the end of my tether.

Thank you- rather a long ramble-

[DorsetLady PMRGCAuk volunteer]

In a previous post of yours adrenals insufficiency was discussed - sounds as if many of your issues are that - so think you probably need a basal cortisol test as well as bloods. Adrenals probably put under extra stress from your flu/chest problems

healthunlocked.com/pmrgcauk...

However does also sound as if your PMR may have resurfaced also.

As for being told to ditch Pred when at 2mg…dangerous advice in my view.

Hope you get some an answers and help.

[Fiddlemum in reply to DorsetLady]

When I crashed with what seemed like depression and anxiety I asked if they would check my adrenals - but they said no- and that steroids can mess with your head and just come off them. So what I should be asking for is a basal cortisol test?

[PMRpro Ambassador in reply to Fiddlemum]

Steroids CAN mess with your head - but so can LACK of steroid. If it was steroids you would expect it to be worse at higher doses.

[Fiddlemum in reply to PMRpro]

How does lack of steroid affect your head?

I didn’t have problems when my pred started at 15mg- I had a lot before I was diagnosed. The complication is I ditched a maintenance dose of an ssri I’d been taking for 20 years- I sound like a complete idiot- thought I knew better I suppose. Also a friend (retired GP ) said 2mg of pred wasn’t even a therapeutic dose…..

What a stupid woman I am…..- will see what the bloods show up .

Thank you for your help(again)

[PMRpro Ambassador in reply to Fiddlemum]

You aren't stupid - I might lay that charge to someone saying 2mg isn't a therapeutic dose though!

Adrenal insufficiency can cause depression and other similar problems. When you are on long term pred your adrenal glands don't produce cortisol because the body knows too much corticosteroid isn't good for it. As you reduce the pred dose, the body should start to produce cortisol to make up for the shortfall but it doesn't happen overnight and so if you stop pred suddenly there isn't enough corticosteroid for your body to function properly for all sorts of things. Research in the last few years at Imperial College London has found that 2mg pred can be plenty to allow the body to function OK - stop it and you may struggle. It could even make you pretty unwell, ill enough to need hospital.

And what you say, fits with my thoughts. The mental health problems you have had were first of all PMR, the right dose of pred for that sorted it out and then they occurred because of the low pred dose that wasn't being topped up well enough by your adrenal function. It is all natural and understandable - and you needn't feel bad about it, doctors should have known better.

[MDT1 in reply to Fiddlemum]

Please never say that, you're not stupid. I know myself how the messed up services make you feel like that but its honestly not you x i cant add to PMRpro or DL advice but I am sending love and prayers x

[DorsetLady PMRGCAuk volunteer in reply to Fiddlemum]

Yes that correct -it’s a simple blood test done at surgery -can be followed up if necessary with a more detailed test.

[PMRpro Ambassador]

March to 2 months ago - a not uncommon period for an incompletely burned out PMR to have built up enough stored inflammation to get symptoms. Especially of poled by a viral infection.

Depressive mood at various levels is actually not uncommon in a PMR presentation - caused by the unmanaged inflammation as well as the fact you feel so rubbish. But this all goes with something I said a couple of hours ago on another thread - autoimmune disease is far more complex than even the experts think and they want to look at separate illnesses in little boxes rather than seeing it is all part of one big picture and all due to a deranged immune system.

And as DL says, simply ditching long term pred when you were at 2mg was a rather cavalier instruction.

I'm so sorry - none of this is very encouraging for you is it? All we can promise is that we will listen and empathise.

[Heidi_SF]

I found that my depression definitely worsened with a very low dose, 1.25mg. I had to increase, but for other reasons. I had terrible depression for two months prior to PMR diagnosis. So hopeless, crying all the time. I believe it’s due to the inflammation. I suppose for some of us a worsening of depression could be a sign that we tapering too low. Add to the other red flags