Confused beginner

[todw]

Hi there. I am a newbie here, having been diagnosed with PMR at the start of October. I think in retrospect I'd had it coming on since May, when my legs started feeling uncharacteristically stiff. My hips and knees were worst affected, and by August I couldn't get up the stairs. I am 53 and thought it was menopause to start with, so tried progesterone treatment, but it made no difference. It was my acupuncturist who suggested it might be PMR, and my doctor agreed, despite no inflammation markers in my bloods. My mum has just come off steroids for PMR, and both her sisters have had it too so there's family history.

I held off starting steroids (God knows why, stupid me!) until the start of November, by which time I was getting jaw ache and headaches too, so I caved in and started on 20mg. Felt better within 3 days, although I had some eye pain as well, and my doctor referred me to the emergency eye clinic who dismissed GCA. After just two weeks on 20mg I tried to reduce down to 15mg but within three days the jaw ache and occipital headache was back. I actually went to A&E that time on the advice of my doctor (I was away from home) as I was worried I had GCA, but got very short shrift from the consultant there who seemed to even question my PMR diagnosis. When I went back up to 20mg the symptoms disappeared again, and I'm going to stay on 20mg now till after Christmas at least, and then (thanks to all the great advice on this site) plan to taper much more slowly, 1mg at a time until I find my level.

In the meantime am trying to be very kind to myself, to embrace slow living (although it's hard - feel constantly guilty that I'm not pulling my weight at work), to eat well, and meditate to calm me down, but I still keep having worries about GCA.

Even on 20mg, I get very tired if I overdo things - although through this forum I've learned I should expect that with PMR - and still often have headaches like my head is full of pressure when I'm bushed. My legs sometimes feel very weak, like they don't want to hold me up. Sometimes I get palpitations and a racing heartbeat, and often I get hot flushes - which I suppose could be menopause, but I think could be the steroids too. It all seems to be happening at once in my life so it's hard to separate it all out!

Is that all / some of that normal for PMR? Could it simply be a side effect of the steroids?

Am I worrying unnecessarily? Every doctor in our surgery is lovely, but they all seem to have a different take on PMR and GCA. I'm wary of going back to discuss my worries as I think they think I'm fussing - in fact the last doctor I saw told me I was just worried because I'd read around the subject too much, and I haven't dared go back since. You can't win can you!

Happy Christmas to you all.

[HeronNS]

I think the symptoms you describe are fairly typical, many of us have some or all of them, or a different combination of symptoms. Regarding the GCA fears, we all have those, whenever we get a headache. I go to the mirror to look for my temporal artery - is it swollen? - even now after 2 1/2 years! The big symptom to be aware of is visual disturbance. If you have problems with your sight, back to emergency and maybe take someone with you to insist that you be taken seriously. But most likely you just have the annoying headaches that pred can trigger.

[todw in reply to HeronNS]

Thank you so much. Good to hear from someone more experienced that pred can cause headaches. I too keep checking my temples! The vein does seem more obvious than it used to ... but then tbh I nugget looked for it before now so who knows, perhaps it was always there ... happy Christmas, and thanks for replying x

[todw in reply to todw]

Oops 'never', not 'nugget'. Fat fingers, small phone!

[Hidden]

Hi todw

Sounds like you are handling it well at the moment dosage wise. Many people find 20mg okay but generally come down 1mg rather than 5mg.

All the swearing palpitations etc were certainly part of my experience but got better as I reduced. But if you get overly concerned a and e will be open.

Happy hols!🌲

[todw in reply to Hidden]

Thank you! Very helpful. Hopefully there'll be no a&e dash! Happy Christmas to you too. X

[PMRpro Ambassador]

Sometimes the medical fraternity make me really really wonder...

I think if you had seen the local new rheumy here where I live he'd have said you have GCA because he sees there as being 3 versions: PMR, GCA affecting the head arteries and LVV-GCA which involves large arteries in the chest and up to the jaw. I didn't talk to him about his preferred starting dose but from what others have said I think 20mg is probably OK providing all your symptoms are under control and you don't reduce yet. I had all the symptoms you describe and he said yesterday it was very probably GCA - but I only ever got 15mg and that was fine. He is one of the world authorities - so I'll take his word!

If I were you I would take this paper:

academic.oup.com/rheumatolo...

to the most likely GP who will listen and discuss it with them.

Where are you?

[todw in reply to PMRpro]

Thank you for such a detailed response. I am in Cornwall. I flip between being reassured by thoughts such as the previous responders' - that it's normal for pmr - and a nagging sense that there's something that is really not quite right about how I'm feeling. It's hard to know how to proceed.

[todw in reply to PMRpro]

Btw, Reading the article you sent was interesting, particularly as it highlighted the incidence of tendosynovitis, which I developed in my forearm two weeks ago. Thank you.

[PMRpro Ambassador in reply to todw]

I had that delight! It was put down to RSI for me since the right was worse than the left.

Yes - I think this article is pretty significant if we can get more doctors to read it as at least 3 of the authors are well known names in the field with Dasgupta having been a major force in GCA in the UK and the PMRGCA charities for the last 10 years.

[todw in reply to PMRpro]

[SheffieldJane]

I think your palpitations and hot flushes are common side effects of Pred. I had them both. The stress of feeling unsupported won’t help. You seem to have a sensible, informed approach to your disease. I certainly hope you would seek emergency help with eye, jaw or head symptoms. I have constant dull headaches with PMR/ Pred. I would report any change in the nature of them. The deathly fatigue is a killer, nobody has found the solution yet. I just sleep more and live life in the slow lane.

Have a good Christmas and new year, you are on a pretty protective dose of Pred at 20 mgs.

[Louisa1840]

Hi this is all perfectly normal for PMR. Yoh need to stay at the level of steroids that controls your symptoms and not try to reduce too quickly. Have a look at the Dead Slow Nearly Stop (put that into Google referenving PMR) and you will gind this very slow refduction method th add appears to work for many. I have had PMR for 7 months and am stuck on 10 mg for now but patience is the name of the game.

Good Luck.

[todw]

Sheffieldjane and Louisa1840 thank you both very much for reassuring words. As you say, it is a bit stressful trying to figure it all out at the start and work out what is normal for oneself. This forum has been a brilliant help ... like a knowledgeable big sister! I hope you all manage to have a restful Christmas. I certainly intend to .... Never mind the slow lane, I'm planning on staying in the hard shoulder as much as possible. Pass me a tangerine, someone!

[PMRpro Ambassador in reply to todw]

healthunlocked.com/pmrgcauk...

to save you having to look...

[todw]

That's so kind, thank you.