Desperate for advice

[Jamie345]

I'm 72 year old lady I developed pma 6 months ago after having an operation on my spine just about getting back to normal this hit me hard, could not walk without groin pain and pain in my shoulders and arm extremely painful time now I can walk not perfect but without a stick! For a short distance anyway, I have pain around my ear and now it's in my jaw wakes me up and again hurts like hell my GP has prescribed amitriptyline 10mg says it helps ! This year has really been all I'll health and I just hope that when I see the rheumatologist first time on Monday 13th, any advice gratefully received please

[Rosbud]

I'm new to this path also so can offer no advice but I can send you A virtual hug and wish you well , I'm sure the aunties will be along very soon with much very good advice x

[SheffieldJane]

I am wondering what dose of Pred you are on?

Has anyone mentioned Giant Cell Arteritis to you?

Your jaw pain and the pain around your ear concerns me, it may be indicative of GCA that is closely related to PMR and you can have both conditions. If you have any symptoms related to your eyes I would strongly advise that you go to A&E. you may or may not know that GCA endangers your eyesight and there can be very little warning.

Sorry I dived into that Jamie345, welcome to the site, I am sure you will find it a warm and informed place to use. I am sorry that you've suffered so much of late. I am so glad that they diagnosed you in spite of the distracting fact of your spinal operation.

Keep in touch. Good luck in finding a good Rheumatologist, you deserve some good luck. 🌸

[Jamie345 in reply to SheffieldJane]

Hi there had my first appointment with rheumatologist feel he was attentive and not rushing me at all, was amazed my GP had put me on the incorrect dosage for all this time my blood results 68! I don't understand all that as yet but he has put me on 40 mg so 8 tablets a day of 5mg, he did not say if I take altogether or divided over the day! Pharmacist was quering this anyone answer this for me? I have to go back in 4 weeks time blood test first to see if the increase has helped! I also have autoimmune hepatitis none alcoholic that's been for 2 years and he says it's strange to have a second autoimmune disease! But he says I do have giant cell+poly myalgia I just hope it works quickly as I can't do anything without pain as I'm sure you will understand, oh to sleep for one night would be a joy as well as all the rest! I really am glad i got such advice from everyone.

Thank you all be intouch bye for now

Glenys formerly desperate!

[PMRpro Ambassador in reply to Jamie345]

Standard protocol is all at once in the morning with breakfast.

" he says it's strange to have a second autoimmune disease!" - wrong! Anyone who has one a/i disorder is at a greater risk of developing another. Maybe he just hasn't taken that much interest in the past...

[SheffieldJane in reply to Jamie345]

So glad that your Rheumatologist was attentive and took time to listen to you. Sorry if we all gave you a fright but your GP's approach was a bit too laid back.

You may even need more than 40 mgs of Pred to obtain true relief.

Nobody here is surprised at your diagnosis. The insomnia improves when you reach the tapering down stage. I did find one good use for Amitriptylin and that was taking it an hour before bedtime, it seemed to help me to get to sleep.

PMR patients tend to take the whole of their Pred dose in the morning. Some find it beneficial at 2 am because the shedding of inflammatory substance happens at 3/4 am, so I learned on here. If you are awake, that might be an idea for you making sure to protect your stomach with Omeprazole ( on the high doses) or similar and certainly with milk or yoghurt.

Not sure whether GCA patients split their dose. So far my diagnosis is PMR.

Keep in touch, the people on here know much, much more.

[PMRpro Ambassador in reply to SheffieldJane]

No - splitting the dose is NOT a good idea in GCA. You need the highest possible peak dose for best effect.

[PMRpro Ambassador]

DOES the amitryptiline help? And does the jaw pain get worse with chewing?

[Jamie345]

First time taking the amitryptiline but not expecting any marvels it apparently relaxing the nerves! Does hurt to chew, just having soft food, worse is the shooting pains from ear to jaw and hurts to touch the area plus swollen.

[HeronNS in reply to Jamie345]

I'm no expert on GCA, but this symptom sounds worrying to me. Even if it turns out not to be GCA it needs to be properly investigated. if you have any changes in your vision please get to the emergency department.

[Jackoh]

Agree with Heron. Let us know how you get on xx

[Soraya_PMR]

Are you on any steroid at all? Or do you have to wait for the rheumatologist?

I think in view of your jaw pains, it would be highly appropriate to present yourself to A&E for some speedier treatment.

[Jamie345]

My GP says its temporal arteritis and has given me 10mg amitryptiline

It has slightly eased today but still feel ill with it, I'm on prednisolone 5mg

3 times a day. I'm just waiting till next week to see a rheumatologist and find out

All the facts etc., thank for your advice

[Soraya_PMR in reply to Jamie345]

Your GP concluded that you have TA (aka GCA), yet has you on 5mg of pred!!!! S/he is either a fool or is neglectful. Amitryptylline will do diddly squat. What you need is pred 40-60mg. And QUICK! No wonder you feel so poorly.

Please read the information on GCA/TA. It really is not to be messed with.

[Soraya_PMR in reply to Soraya_PMR]

Sorry, misread, you’re on 15mg per day in divided doses (which is also contraindicated in GCA). 15mg is still not enough.

[Jamie345 in reply to Soraya_PMR]

I will read them now! Thank goodness for this forum I will increase them myself and take heed from your advice. Hopefully I will get a good rheumatoligist on Monday.

[Soraya_PMR in reply to Jamie345]

Yes please read them. I cannot ‘trump’ your GP’s advice and prescription, but it is contrary to any advice I have read here. (I’m a PMR, not a GCA). If you are in any doubt ring 111 or go to A&E (you are in UK?)

If ANY visual problems then A&E is the place for you.

[Jamie345 in reply to Soraya_PMR]

Thank you I will definitely look, and any eye sight problems I will call 111 I was told I have cataracts one worse than the other , would these be down to Pmr trouble was I had no one to ask about this condition, until I found this welcoming foya

Thank you all an eye opener and a relief !

[Soraya_PMR in reply to Jamie345]

Cataracts are certainly connected to Pred. Don’t think PMR causes them.

Visual problems associated with GCA as I have read here are:

Blurred or double vision

Momentary/temporary loss of vision in one eye

A net curtain appearance, or maybe like looking through a waterfall or similar

Not experienced any of this myself, so anything out of the ordinary should be reported.

[PMRpro Ambassador in reply to Jamie345]

Please don't wait until next week. Your GP is playing a very risky game if he thinks it is GCA (otherwise known as temporal arteritis in the past).

Amitryptiline will do NOTHING and 15mg of pred, particulalry as 3x daily will do little either. You need an EMERGENCY referral - i.e. a phone call to the rheumatology department saying you are being sent to A&E for them to see.

I've only just seen this - but I would have said exactly what Soraya has said.

It beats me where they come up with their ideas - nowhere, but nowehere is there a suggestion that 3x5mg daily is the way to treat pMR - never mind GCA!!

By now I hope you have seen someone.

Oh - and suggest your GP read this:

rcpe.ac.uk/sites/default/fi...

It is aimed at GPs to improve their knowledge and yours surely needs it.

[Jamie345 in reply to PMRpro]

I'm truly shocked by all this news, I knew he was not informed much on this condition. All I can hope for is on Monday I have a rheumatoligist who knows what he's talking about and will treat me correctly I still have pain all around my ear and swelling slightly going down my neck but although it hurts still it's eased. I have also been taking the predisinone at 2 am with a small slice of bread, as I was advised on this forum. I can't wait till Monday its flared up in my back as well. But I've been told it all goes away after a certain length of time some people in a year others 2 is this true? Thank you very much for helping me as it is scary I must admit.

[PMRpro Ambassador in reply to Jamie345]

Er - in 8 years on the forums (all 3 of them) I have met no-one who has been off pred in a year. That REALLY is cloud cuckoo land. About a quarter manage to get off pred in 2 years or so. About half need 5 years, plus or minus. Some of us need longer. These figures were quoted in a paper which I can no longer find - but they fit what I see on the forums to a T.

In the meantime if you have any visual symptoms at all call the emergency services and make sure you see a doctor asap.

It isn't our place on the forums to tell people what dose to take, especially when not yet diagnosed - it does upset the doctors! However, if you do have visual symptoms I would suggest taking at least 40mg and getting to a doctor quickly. I don't know where you live - but in Yorkshire Ambulance Service, even the paramedics are taught how to recognise potential GCA and to treat it as a medical emergency as it should be.

[Jamie345]

I'm also increasing my dose myself any suggestions ?

[Saww]

Interesting to see that you got this after surgery. I got poly about 6 weeks after a left total knee replacement. How many others got it after a surgery?????

[HeronNS in reply to Saww]

Saww, It's not just surgery which sometimes seems to be the straw that breaks the camel's back. You'll find that quite a few may have had an illness, major stressful event or an injury not long before developing PMR. I had a broken leg, plus a cascade of stressful events. Why do our bodies turn on ourselves?

[PMRpro Ambassador in reply to Saww]

Any form of stress can be the final straw. Stress affects the immune system and anything can be the final thing that triggers the immune system to go into overdrive and develop some form of autoimmune disorder. Doesn't matter if it is emotional or trauma - or infection of some sort. Even a vaccination could be the bit that tips it over the edge.