2 1/2 year update and Rheumy consultation

[DogAgilityObsessed]

To save you delving into my history too much here is a recap and update.

I was diagnosed June 2020 and started on 15mg Pred. In 2021 I got down to about 8/7mg but a flare pushed me up again. I tried again a while later but the pain got bad and last summer I went back to 15mg. I was half way through a taper from 14 to 13 mg a week ago.

During the pandemic both my parents were diagnosed with dementia and this has caused a lot of stress for me. My father went into hospital in October and has now moved into a care home. Mother still at home but struggling as she has no short term memory. I'm their primary carer.

I'm also on Alendronic Acid and statins.

GP was concerned that I was unable to reduce pred so referred me to a Rheumy at the RD&E (Exeter). I had my first consult last week (incidentally the consultant was really pro PMRGCAUK) and she is worried that the pred may be masking something else. Thoughts are of Atypical PMR ? Alternative diagnosis. I've had blood tests and X-Rays done.

The consultant has told me to reduce the dose as quickly as possible (without being specific as to how quick although I now see on a letter she is suggesting 1 mg a week) to bring on symptoms. NB She has warned me not to go below 5mg because of the risk of adrenal crisis!

So I immediately completed the drop to 13mg and this morning took just 12mg. My upper legs are already aching badly but not so bad that it stops me moving.

Sorry for the long post but I feel the need to check in with you lovely people.

[DorsetLady PMRGCAuk volunteer]

Oh dear that’s going to be painful for you, but if Rheumy wants you down to check for other issues, I guess you don’t have an option…but adrenals can be affected before you get to 5mg, so just be aware of symptoms of them struggling….

So do you have another appointment with Rheumy? …and when?

Good luck, and please keep us posted….

[DogAgilityObsessed in reply to DorsetLady]

No follow up appointment but the RD&E are using an app so I can report symptoms or anything else as it happens and Dr Earl has said that I shouldn't have to wait more than a week. So hopefully the system will work - looks like it so far.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Let's hope so...

[Blossom20]

Oh, so sorry to hear of your struggles. We started on this at the same time. I imagine the stress about your parents is playing a big part in it all and causing the inflammation to increase (I mean the auto immune part). So do look after yourself - relaxing in a bath with some oils etc.

It's great that your rheumie sounds understanding.....but the treatment sounds painful to say the least.

I'll be interested in other comments .

I wish you all the best. Keep us informed.

[DogAgilityObsessed in reply to Blossom20]

Yes I remember us starting together. What dose are you on now?

[Blossom20 in reply to DogAgilityObsessed]

Well I got to zero in December but gradually shoulder pains crept up so I had to re start I'm on 3 for the time being. Think I'll stay there for a while!

[CarolF1312]

So sorry to hear you've been struggling. We started our PMR journey at the same time and we're both previously fit and active. I'm sure the stress of caring for your dear parents must have had a detrimental impact on your recovery. I'm pleased to hear you have a good Rheumatologist and hope they are able to help you.Please take care of yourself and keep us updated on progress.

[DogAgilityObsessed in reply to CarolF1312]

Thank you. You me and Blossom20 are like the mid 2020 cohort! What pred dose are you on?

[Blossom20 in reply to DogAgilityObsessed]

Yes, we were all fit and healthy, just at beginning of Covid times, then Pmr struck!

[CarolF1312 in reply to DogAgilityObsessed]

I'm currently doing s very slow taper from 3.5 to 3 mg.I'm never completely free of aches and stiffness but it's manageable. and like most of us I'm anxious to get off Pred completely if I can.

I've had several set backs over the last year. Recurrent problems with piriformas syndrome is most troublesome.

Really hope you get back on track with your recovery soon.

Take care.

[KerryIreland in reply to DogAgilityObsessed]

I started in March 2020 and with a few setbacks I’m now on 2 &3/4! Best wishes to you all.

[PMRpro Ambassador]

"she is worried that the pred may be masking something else. Thoughts are of Atypical PMR ? Alternative diagnosis"

Alternative diagnosis, fair enough - but how the hell does pred "mask" atypical PMR? Whatever sort of PMR it is, in the UK the only option is pred to manage the symptoms.

As someone who has been in a similar situation as a carer and has an "atypical" PMR (18 years and counting and nothing else identified) - I'm not in the least surprised at your presentation. The emotional stress you are experiencing is plenty to account for it all. And while it is very good of her to say 5mg she is forgetting that at present you need MORE because of the situation. I could see adrenal insufficiency raising its head LONG before 5mg. So beware.

Is that aching so badly that they stop me moving or NOT stopping me moving? I was on 19mg at the end and even 1mg at that level resulted in me being unable to do stairs within a couple of days. What did let me get down is Actemra, I got to 7mg pred without PMR problems but have had a/fib problems and went back up to 10mg to manage them. But Actemra for PMR isn't an option in the UK.

[DogAgilityObsessed in reply to PMRpro]

To be fair some of that may be my communication. It may be atypical. OR the pred may be masking something else. And 'yes' I missed a NOT in my original post - now edited.

[PMRpro Ambassador in reply to DogAgilityObsessed]

That it may be masking something else is a possibility if you are struggling to reduce and she is right to consider it. But I struggled to reduce below 10mg for 4 years - no sign at all of anything else. With Actemra I can reduce - so it isn't a dependence on pred as so many UK doctors would have it.

[DogAgilityObsessed in reply to PMRpro]

Thank you for that reminder about your own circumstances. I will remember that as we move forward. Dr Earl (the consultant) wrote to me yesterday to say the X Rays showed early signs of oesteoarthris in my hips, knees and hands. And she has asked me to continue with the pred reduction.