Is PMR back?

[Karendeena]

I have been in 'remission' for almost a year now, finally getting off the prednisolone in January.I had a catheter ablation in March this year for atrial fibrillation and although it was quite traumatic I am doing well with that.

Now I hurt pretty much all over, my neck and shoulder has always been stiff and the rheumatologist said it was spondylosis, but this is different. My arms hurt but I can lift them over my head with no problem.

It's my hips now (mainly the right one) it aches, particularly when sitting or lying on it, I am struggling to sleep. There is an ache right in the groin and sometimes I feel the ache at the back of my knee, front of my thigh and even the front of my ankle.

I visited the GP yesterday and he is arranging and X ray first and if that's ok it's more than likely muscular and I could consider going back on steroids, but have to accept the side effects that come with them. I took a real bashing getting off them last time.

I have been to Cyprus and sitting in the seats on the plane and also lying on uncomfortable sun beds, I am hoping it might be sciatica.

Thoughts please would be appreciated ❤️

[DorsetLady PMRGCAuk volunteer]

If it is a return of PMR - and quite possibly after stressful times - you might find that quite a small dose of Pred gets things under control. So the sooner you start the better- so long as nothing else is obviously causing issues.

Just a short trial of Pred might give the answer.

[Karendeena in reply to DorsetLady]

Thank you. My GP suggested this yesterday but just wants the X ray first. He did mention a short course of prednisolone but how would this work? Would I need the long drawn out taper again? I am under a huge amount of stress with my 96 year old mum abusing me so wouldn't be surprised. My CRP was normal back in May but my ESR was up a bit but GP said ok. It was 32 and classed as borderline (GP goes on half of age and I am 67). My ESR was down to 9 when on prednisolone previously.

[DorsetLady PMRGCAuk volunteer in reply to Karendeena]

No doesn’t mean a slow taper, you can take a higher dose for 2-3 weeks [and that how it is used in many other illnesses] without an issue coming off again. I did it after my GCA was in remission for another problem… no probs.

Sorry to hear your situation with your mother .. dementia issue? No need to elaborate.

[Karendeena in reply to DorsetLady]

Thank you ❤️Not sure about mum, the professionals say not dementia but mild cognitive impairment' due to a small stroke a long time ago that affected the front of her brain. It seems she just loses it, especially with me and abuses me mentally and occasionally physically. My lovely mum has gone and I'm heartbroken 💔

[DorsetLady PMRGCAuk volunteer in reply to Karendeena]

I’m sure you are, my mum had dementia [not badly thankfully] and was still ‘with it’ when she died, but she had changed over the years that’s for sure…my auntie bore the brunt of things.

Aging and medical issues can be so destructive at times, and not just for the patient.🌸

[agingfeminist in reply to Karendeena]

I am so sorry. I am experiencing a similar problem with a close relative...the advice I have received is that there is nothing that can be done to help them...but if you are being abused then you will need support...try and find a support group...we need it. I am in the process of finding help for me.

[PMRpro Ambassador in reply to Karendeena]

If your ESR was down to 9 on pred - that is what it should be, not 32. That is the top end of a "normal" range of readings that applies for 95% of the members of a large population of nominally healthy subjects - it isn't a range that applies for each individual. And the "half the age" approximation is history - jettisoned years ago.

What professionals say "not dementia"? I suppose it depends how you define dementia - it may have a different cause but the effect is the same. This definition fits doesn't it?

"Dementia is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person's daily life and activities. Some people with dementia cannot control their emotions, and their personalities may change."

nia.nih.gov/health/alzheime....

It is an evil process - you lose the person twice. But my husband went through brief periods of being very cognitively challenged - it wasn't Alzheimers, but the result was similar to the early stages.

As DL says - you may not need a high dose, if you try a low dose you may get away without tapering to get to it.

[suzy1959]

I’m so sorry to hear about your Mum. No one deserves abuse, especially when it is out of the blue! Both my parents had vascular dementia- my Dad started with mild cognitive impairment but it soon got worse. I was so lucky that they weren’t abusive- maybe they knew that I wouldn't have helped them if they had been as we didn’t have a good relationship anyway. Even so, it was hard not being able to have a conversation at all with either of them.

[S4ndy]

I so feel for you. Firstly I agree with everyone, definitely worth a pred trial for a couple of weeks.

I have worked with people with dementia and people who have had strokes. It's so hard to see your mother change.

In stroke patients the injury can cause brain damage to the part of the brain that we use to control our emotions and inhibitions. I am quite a big lady and took loads of verbal abuse when teaching exercise to people with brain injury. The names I got called etc. I managed it by trying to engage that person in something they could deal with, a sort of distraction therapy. Often I would try to switch the subject to something in long term memory like numbers, smells, foods and music.

The limbic system in the brain recalls the things we learned early in life and these are things like smells and sounds. Often these things are the last things to go in Dementia. If your mum is being abusive try playing some of her favourite music or distract her with a favourite snack. It's very hard to deal with this when it's your own parent.

In people with dementia they lose everything which is a very frightening thing. They are scared and cannot understand what is happening to them as short term memories are no longer processed and new memories not made. Same thing can happen to stroke patients.

So your mum may be very frightened and might not know exactly who you are. My advice to you is to enter her world. Do not challenge her but cajole her. For instance if she insists you are someone else, go along with it. If she wants something that is irrational or perplexing do not argue but gently try to get her onto another subject. This is where reminiscence comes in handy.

If she is physically abusing you. Ask yourself why that is. Is she scared, is she locked into a memory or behaviour pattern (eg was she in an abusive relationship with her own mother). I know it can be very draining for you but her internal world has changed and the abusive behaviour may be her way of coping.

There are several helpful organisations such as The Stroke Association or Dementia UK who may be able to support you and your mum. Don't be afraid to ask for help. These organisations may have local support groups you can reach out to.

Hope you can get the help you both need xxx

[Nextoneplease in reply to S4ndy]

Well said S4ndy !

My mother had vascular dementia and I recognise all that you say. So hard! I benefited greatly from the Alzheimer’s online forum, which at that time anyway was similar to this one in terms of support xx

[Karendeena in reply to S4ndy]

Thank you so much ❤️I have to admit I am scared of her now as I never know what's coming next. Occupational health told me if mum says the bin is pink, it's pink even if you know it's brown!!

I am terrified I have lost my lovely mum and it's all I can think about, what she was like on holidays with me etc, it breaks my heart in two 💔

[Nextoneplease in reply to Karendeena]

It was indeed a dreadful time, even though my mum was the gentlest of souls. Take care of yourself insofar as you can. I didn’t, and it was only when mum was in hospital and my dear husband told the doctors that if they didn’t look after mum, I’d be in hospital too, that we finally got some help.

Sending you all the best xx

[Karendeena in reply to Nextoneplease]

Thank you ❤️❤️

[S4ndy]

Karendeena, if you are terrified then so is your mum. Abuse and violence often comes from a place of fear. Your mum is still in there but her mind much altered. The version of your mum that you remember might have gone but she's still there in your heart. Love this new version too and try to tap into her memories with her xxx