Recovery and relapse

[Kaynot]

Hello everyone, I am new to this community and feeling rather overwhelmed and emotional at what I suspect is the return of my PMR symptoms which I thought had 'gone away' after being diagnosed mid 2020 commenced on 15mg and a very very gradual taper from 5mg reducing 1mg a month in March 2021. I was so relieved to apparently have no side effects and without a return of the pain discomfort, weakness and stiffness in my arms and shoulders.....but...

as I am learning I realise it is not that simple, and I have been reluctant to acknowledge the uncomfortable truth that it is back. I am in denial, and simply not knowing what to do and I am resistant to start up the preds again...when I was first diagnosed and commenced Prednisone I had almost an immediate response.

I keep telling myself that if I just do some stretching exercises, have a massage, rest etc etc I can overcome, live with this. But its making me so miserable and waking up every morning especially these chillier ones when getting dressed is such a challenge and even lifting a glass of water feels like a dead weight.

I am 63 years of age (an ex nurse) and also was diagnosed as hypothyroid 10 years ago, so I sometimes feel the aches and pains may just be attributable to general fatigue or stress (I have only ever experienced the severe stiffness and discomfort in my upper body) and when I read some of what others are going through I doubt myself ....is it related, fibro or hormonal..?? (I had sudden, severe onset of night sweats and itching last year after I stopped the prednisolone).

I was living and working in New Zealand when I was diagnosed by a Rheumatologist friend, but am now back in the UK and since the NHS are so overstretched have felt very alone and unsure about how best to manage this relapse/flare up. I am so thankful to have found this group and in the process of reading and absorbing everything.

[PMRpro Ambassador]

Hi and welcome

First question - what is the status of your hypothyroid problem? It is a differential diagnosis as it can cause very similar symptoms.

[Kaynot in reply to PMRpro]

Thank you, I am taking 100mg/125mg alt days Levothyroxine and seems settled better now, although it was tricky when I first came back to the UK as in NZ I would have regular rpt blood checks. Here seems to be annually!

[DorsetLady PMRGCAuk volunteer]

If it is a relapse of PMR, and it does sound very much like it…then you do need to go back on Pred. You may find that a lower dose than 15mg is enough to get things under control if you act now, but the longer you allow the inflammation to build up then you will get to the stage where that dose , or maybe more is required.

No matter how difficult it may be, you do need an appointment to be assessed to either rule in PMR and start on Pred, or rule it out and look for other diseases.

…and to be honest, you may be able to self-diagnose to a certain degree, but you can’t test your inflammation markers, nor prescribe Pred, so methinks you need to get your ex-nurse’s hat on get thyself to a GP.😊

[Kaynot in reply to DorsetLady]

Thank you so much. I just really needed that nudge! I do have a few low mg prednisone at the back of the drawer but I will try and get a GP appointment before I self-prescribe. Because the blood test markers were not significant for me originally, I suppose I have always been sceptical about whether it actually IS pmr - but I cannot deny the immediate effect prednisone had which convinced my Rheumatologist.

[DorsetLady PMRGCAuk volunteer in reply to Kaynot]

Inflammation markers - studies show that up to 20% of PMR patients don’t have raised markers, so that makes it difficult for some to get diagnosed….why we always bang on about symptoms…. and the effect of Pred on them…

[artisam]

Oh I know just what you are going through. I was told PMR was no longer active in 2022, just as I retired. Just over a year later, here I am again back to square one. I too was in denial and ver reluctant to go back on the pred. Instead I went through months of physiotherapy, which made the pain much much worse, I was back to crawling up and down the stairs, couldn’t lift my arms and nighttime pain was excruciating. It was only when I realised the amount of painkillers I was taking was potentially much more dangerous than the effects of pred, that I called the doctor. He referred me to rheumatology after a barrage of blood tests and within a month I had my appointment and confirmation that I had relapsed. I now have my life back, pain free and loving life again.

Don’t be scared, go to the GP - you know it makes sense. Listen to the advice from the wonderful people on this site; they really do know what they are taking about.

Wishing you courage and a positive outcome xx

[Kaynot]

Many thanks it is just so helpful to feel that there are people out there who understand the nature of this experience, and I agree before this recent relapse, I had forgotten how debilitating it can be trying to 'tough it out' and work through it. I think my last straw recently was taking myself to have a sports massage a couple of weeks ago, it was brutal. I was in agony and being told to breathe through it while im tensing with pain - well a bit of a wake up call tbh

Thank you for your encouragement, and great advice - you have given me hope, and long may you continue with your own new and improved good life x

[MamaBeagle]

I'm on my second time around too. I was in denial as well for a couple of months. It was just a year after getting to zero pred. But when I struggled to get myself out of bed because of the pain I had to admit to myself PMR was back!

[Viveka]

Welcome Kaynot

Reducing to zero in a year is quick; for most people it seems to be 2 to 4 years and for a small number longer. As you were ok for quite a while till you got noticeable symptoms again, perhaps as DL says, you could see if you can start with a lower dose than 15 - dunno, ten perhaps, see what doc says.

The other thing is that from 5, 1mg a month is not a slow taper. It's better to be no more than 10% of the dose, so from 5, it's better to reduce by half a mg. (From 2, I have been reducing by a quarter). You can also do two months rather than one (or any figure of your choice) and there are also the dead slow nearly stop (DSNS) tapers you can read about here. Lots of information available from the Forum. X

[Kaynot]

This is so helpful and I so wish I had found this group when I first managed my tapering. I did contact my rheumatologist in NZ and followed his advice, but felt a bit of a lose cannon with no available medical support here in the UK - and of course feeling fine and well again all while taking the low dose turned out to be a bit of a false positive. It didnt help that I arrived back in the UK during pandemic and so just went into keep calm and carry on mode! Which is to say I tried to manage it myself. Hopefully this time around I am better informed and a little wiser!