Polymyalgia

[Dorisirene]

Started with 6 prednisilone which relieved excruciating pain every morning,but gave massive depression at suicidal thoughts level,finished initial dosage thinking "thank God for that,then horrified when Dr told me I had to stay on them,but happier when reduced to 4,which I still found difficult mentally and asked for URGENT referall to local psychiatric hospital(on the 20th last month but still nothing heard,if you are English you will understand)finally down to 5 for10 days,but still mentally disturbed,now down to 2.5 with constant low level anxiety and due to go on holiday 23/11'and no way my lifetime nervous disposition will allow me to even think of stress and fear that comes for me with flying.Friend thinks I have come down on dosage too fast, but she is not a Doctor, but I would welcome any advise/input please.Suzanne Franklin

[HeronNS]

I'm sorry you have been having such difficulties. There will be more knowledgeable people along eventually, probably tomorrow when the UK and Europe wake up. What was your starting dose and how long have you been on pred? Are there any other medications which might be affecting you? I know that pred can cause some mental issues, usually at rather high dosage, and PMR itself can make us depressed. I've had those thoughts myself although not lately. You will get lots of support here, so please keep in touch with us. You are not alone. ❤

[Rose54]

Hi

You can self referral to your mental health team

just phone them up and ask for self referral form

Before I was diagnosed I was told I had CFS I did not agree so told GP if its all in my head I need a Mental Health assessment .

I told GP I thought I had PMR

Phoned local mental health team within a week had phone assessment and her mother had PMR

Score mental health zero but yes to PMR

Rose

[Rose54]

ps

I suffered from anxiety while on preds for a while but was advised to try Batch Rescue Remedy

safe to use with Steroids.

I got annoys going away to visit my son on my own had a ferry them train journey travelling across London underground .

Worked for me

[SheffieldJane]

Hi Suzanne, I am sorry that you are going through such a tough time right now. I am glad that you have the self knowledge to seek the help that you need. I am only sorry that the help you need has not been forthcoming.

Where are you in the world?

My experience of depression stemmed from untreated PMR. My initial dose was 20 mgs and the depression was the first symptom to leave and for that I will always be grateful, it has not returned.

I know Prednisalone has a lot of psychiatric symptoms listed in the side effects. I had always imagined that these would possibly be experienced at the high doses.

This must be very frightening for you and your fear of flying in your present heightened state is making everything worse.

Are you still experiencing physical pain from PMR or has the mental pain completely taken over?

Well done for coming on here, please insist with your doctors that you need help right now.

Let us know, if you can, what happens next.

I hope with all my heart that you find help and quickly.

[Dorisirene in reply to SheffieldJane]

I am in Hove actually so close to the Seafront I am almost paddling and find that going to the lawns seafront café,does the job for me.I was thinking of calling Surgery,as I have heard nothing on Mental Health front Jane but have got into trouble calling Surgeries to often and high anxiety(replaced today with joint problems)went when I put my head on the pillow,came back when I got up in the night,but not there this morning,having said that not taken steroid yet,and having to be"sorted mentally and physically in a fortnight,not good

Thanks for thoughts.

Suzanne xxx

[SheffieldJane in reply to Dorisirene]

I love Hove and the sea. Gosh it's all there waiting for your happiness to begin!

When we have mental health problems we tend to need constant reassurance. These days GPs just don't seem to have the resources or inclination to help.

I wonder if it is still possible to be referred to a mental health nurse, who will be there as someone you can turn too?

You really need to find out what is wrong with you physically. It may not be PMR but I can understand why you would think it is. On such a small dose of Pred you would be barely able to walk. Is there anyone who can go to the surgery with you? Sometimes just having an advocate makes everyone sit up and take notice.

[SheffieldJane in reply to SheffieldJane]

Sorry Suzanne, I have looked at your old posts and now see that you are on 6 tablets of 5 mgs each not 6 mgs as I assumed. That really does bring you into side effect territory. All the more reason to seek urgent medical attention as serious mental health problems can be triggered as you know. Poor you! What a rotten thing to happen. Let us know how you get on. I'd be scared to take them, then the pain would rush back aargh!

[Dorisirene in reply to SheffieldJane]

Went down to one 5mg a week ago Jane,thought I said?last one yesterday,bit mental this morning and quick to anger,especially when I notice,Clothes softener low,and she does laundry today,and I reminded her,just let. Me know and I will buy?also txtd to say she left my flat&house keys at home???why do I pay her £22???couldn't do without her.Take care.Suzanne xxx

[SheffieldJane in reply to Dorisirene]

Sorry Suzanne, I often get the wrong end of the stick. I can relate to being unbearably irritated over minor things. I am in almost permanent apology mode with my long suffering other half.

Like it or loathe it a rapid decrease in your steroid dose will knock you about.

If I was there now, we could go for a shuffle together along the edge of the sea and put the world to rights. 🌷

[PMRpro Ambassador]

I assume you mean 30mg (6x5mg) when you say 6 pred? That is actually a rather high dose for PMR - 15mg might well have been plenty and been accompanied by fewer probelms.

I have to say - the speed you seem to have reduced at could well be contributing to your anxiety,

[Dorisirene in reply to PMRpro]

I know but flying 23rd and although I took last 5,,mg of seven a bit mental this morning and constipated and bloated.No idea how long it will take to leave my system,and. obviously hoping for no return of excruciating pain that got me in prednisilone to begin with.Suzanne xxx

[PMRpro Ambassador in reply to Dorisirene]

PMR is not an acute illness where a short course of pred will reduce inflammation and you are cured. It is a chronic illness and continues for anything from 2 to 6 years for 75% of patients, requiring a lower dose of pred for the entire time before tapering to zero without symptoms returning.

If what you have IS PMR you will find the symptoms returning in a similar time frame to how they left when you went onto the pred. As I say, starting on 15mg and then reducing slowly whould have been far more sensible. Why on earth can't doctors look it up before jumping in with both feet?

[Dorisirene in reply to PMRpro]

I am flying 23rd and wanted a clear,anxiety free head

[S4ndy]

Hi, sorry to hear you are suffering. My depression worsened when I started in Pred. There's always Mind or Rethink helplines for instant listening help if you aren't able to access the NHS service yet. They can be a great help. Hope you feel better soon. Just remember it will pass and everything changes. Treat yourself kindly xxx

[Dorisirene in reply to S4ndy]

Thank you,last one yesterday,mad head this morning but ok now,are you a friend of Bill W???