PMR diagnosis June 21 - pain in head today

[Smallstepsforward]

Hi there, today I’ve been experiencing headaches (I don’t normally get headaches). Then I developed nerve type pain on the RHS of my face. Sore right ear, stabbing pains above and below right eye, jaw pain and pain in cheekbones. Stabbing Pain spread to LHS eye and temple area now. Very very fatigued. Nauseous and feel ill. I’m worried it’s GCA. I’ve been v slowly reducing prednisone from 15mg to 14mg over 2 months. I had a return of some PMR symptoms last week. I’m a bit worried. Thanks for reading!

[jinasc]

I do not want to frighten you but please do one of both of the following:

Call 111 explain you have PMR and then all your symptoms in full and that you are worried about GCA and your sight - GCA left untreated can cause total or partial loss of sight and once it is gone it is gone.

Go to A&E now and tell them the same.

I would go to A&E. as you need medical advice now.

On the right hand side of this page you will under topics, GCA Symptoms.

Follow this link rdcu.be/bOZXC and if possible print it off it is fairly new and it is quite possible that they do not have a copy yet.

[Smallstepsforward in reply to jinasc]

Thank you. I’ve been on phone to 111. A bit of waste of time as the third phone call said their service was ending now and to call my Gp at 8am. Will do that and call rheumatologist secretary at 9am. Hope to see someone today. Pain subsided a little. Stabbing pain intermittently now. Very fatigued and feeling faint on and off. Thanks for your advice

[123-go]

If you haven't already done so, I urge you to go to A and E as jinasc advised. If you have nobody to drive you I feel you would be justified in ringing for an ambulance and describing your symptoms. I, again like jinasc, don't want to worry you but you do seem really poorly and need a medical check.

When you are able to, please let's us know how things go.

[DorsetLady PMRGCAuk volunteer]

Nothing further to add, but please seriously think about A&E if symptoms continue.

[Smallstepsforward]

Hi again - I’m wondering whether I’m downplaying this? My husband is away. I usually leap into action for others but tend to downplay my own illnesses. I’m wondering whether I’m being an idiot and should go to a and e now. You’re all telling me to. Usually a decisive person but don’t want to waste health resources. also wondering whether I wait until 9 to speak to private dr and get tests done privately today. Better than public a and e?

[123-go in reply to Smallstepsforward]

Hi, there. Please stop wondering and spring into action for yourself now. Your body, your health - look after it. There's no question of you wasting resources. Better safe than sorry. 💐 I will add that you will be seen today at AandE. It is very unlikely that you will be guaranteed a private appointment today or tomorrow or.........

[DorsetLady PMRGCAuk volunteer in reply to Smallstepsforward]

You are not wasting resources…..please go. If it’s a wasted journey, so be it, if it’s GCA there’s a lot at risk…..

[Jackoh]

Yes agree - go NOW ! Xx

[Loopy65]

Have to say that when I called my GP about headaches (I’m not a headachy person at all!) he jumped into action and insisted on seeing me asap even though we were in half lockdown. It turned out to be my mouth guards but he told me I’d done the right thing and that in ‘doctor college’ (!!) headaches and PMR are a definite red light.Please get it checked as soon as you can!

[Smallstepsforward]

Thank you everyone- I am now at a and e. Hoping it’s a nasty virus!

[jinasc in reply to Smallstepsforward]

Thank goodness you are at A&E.

Thank you who all joined in and I mean that sincerely.

[123-go in reply to Smallstepsforward]

Wise decision. You will have the attention you need now. Good luck.x

[Smallstepsforward]

Yes, thank you to everyone who gave me advice. I still haven’t come across a medical professional who has heard of GCA and PMR so hoping that will change when I get into treatment area!

[DorsetLady PMRGCAuk volunteer in reply to Smallstepsforward]

With eye issues hopefully you will see duty ophthalmologist- s/he will!

[Sharitone]

So relieved you went to A&E. Your dosage and symptoms are all very like mine were when my GP sent me to A&E. IF you have got it - the bright side is that you no longer need to worry about getting it! All the best🙂

[Smallstepsforward in reply to Sharitone]

Lol! I don’t have it. Likely got Trigeminal neuralgia. The dr asked if I’d been under stress lately. I had a good chuckle as I have been under an enormous amount so am not surprised that’s it’s all flared up. I do practice stress management but it’s been a matter of stemming the tide of stress coming the other way! Thanks again for everyone’s help and advice today.

[PMRpro Ambassador in reply to Smallstepsforward]

Very possibly - but stress goes for GCA and PMR too and they are very difficult to tell apart sometimes.

[Smallstepsforward in reply to PMRpro]

I’m going to get a second opinion from my rheumatologist just to be sure

[PMRpro Ambassador in reply to Smallstepsforward]

Good! Asking once too often is better than once not enough ...

[123-go]

Another good move!

[yogabonnie]

HI. Just checking in to see how you are doing now?? did the diagnosis stick and are you better?

[Smallstepsforward in reply to yogabonnie]

Hi Yogabonnie, thanks for asking. I’ve been quiet on this forum as I’m still undergoing scans etc to find out what is wrong. I changed rheumatologists, which was a good move. My new rheumatologist is excellent. I saw him in early October and he said that due to my age (52) and that prednisone hasn’t worked as it should, he wanted to rule out everything else before diagnosing PMR. He was surprised that I’d been diagnosed with just a blood test (CRP 8.2) and symptoms that didn't all add up to PMR. He said that PMR like symptoms can often hide other conditions. He also noted that there has been a huge uptick in inflammatory diagnoses after covid and the vaccines. So I had to rapidly taper prednisone down which took a month. I then had a PETCT scan early November. Although The scan showed inflammation indicative of PMR, my symptoms still don’t convince him of PMR so I had a mri last Friday to look for anything indicating spondyloarthritis. I also had a blood test to check for a related gene. I am seeing the rheumatologist on Thursday. Regardless of the diagnosis, he won’t put me on prednisone again as it didn’t really work and the side effects far outweighed the benefits.

Regarding prednisone the rheumatologist was surprised that the original rheumatologist had not taken into account many things. Such as: I don’t methylate well meaning my body doesn’t metabolise things like prescription medication well resulting in a toxic build up of medication. I have a family history of osteoporosis. He also was surprised that the original rheumatologist hadn’t taken into account my reactions to each vaccine and the uptick in inflammatory conditions in the wider population post covid and vaccines. He said that because of this (and my young age) everything else needed to be ruled out before PMR was diagnosed. He has advised against getting the booster or any other vaccines until my body’s inflammation decreases. He also advised against getting the vaccine type I did (Pfizer) and opt for another one. I haven’t looked into that yet. I should emphasise that I’m don’t take an anti vaxx stance at all. However I do think that an individual’s physiology-in particular their inflammation level - needs to be taken into account before administering vaccines. It’s very early days in terms of the effects of covid on the body (my rheumatologist described it as the beginning of a very long story) and I’m sure scientific research will shed more light on this. So that’s it! A long journey and I’m hopeful of a diagnosis on Thursday so that I can make a path to recovery.

[PMRpro Ambassador in reply to Smallstepsforward]

This one sounds like a keeper!!! If only more thought that way ...

[Smallstepsforward in reply to PMRpro]

He is excellent. He links our gut micro biome with inflammatory conditions. His name is Dr Vijay Hajela. He is London and Brighton based. He does NHS work too so I’m transferring to his NHS list in December. The other rheumatologist’s name that I was very unhappy with is professor John Axford. Again London based. I would not recommend him to anyone.

[PMRpro Ambassador in reply to Smallstepsforward]

Oooooh - wonder if he'd be interested in us ...

[Smallstepsforward in reply to PMRpro]

I’ve told him about this forum. I’ve also told my Gp about the group

[PMRpro Ambassador in reply to Smallstepsforward]

Do they know they can be professional members of the charity - free of charge?

[Smallstepsforward in reply to PMRpro]

Do you mean the PMR charity?

[Smallstepsforward in reply to PMRpro]

If you give me the details, I’ll pass them onto him

[PMRpro Ambassador in reply to Smallstepsforward]

Yes - Fran Benson is the person to ask. She is under Contact Us as a Partner.

[Smallstepsforward in reply to PMRpro]

Thanks

[Smallstepsforward in reply to Smallstepsforward]

Update on my diagnosis. I got my mri results back and I don’t have spondyloarthritis. So we are back at the PMR diagnosis. My dr is recommending methotrexate. I am very wary of taking it as my liver has problems processing things such as prescription drugs well (Simply put, I have a mutation in the gene that processes medication). That’s likely why prednisone was not a success - physically or mentally. So I’ve got to be creative and look elsewhere. I’ve looked into interleukin therapy - tocilizumab - which targets IL-6. The nhs only prescribes that for GCA. I recall my gp telling me that guys and Thomas’s hospital may prescribe it off licence for PMR. My next step is to look into Chinese herbal medicine -( which I’ve tolerated before) plus a specific type of acupuncture (3 points) to address the resulting pain etc. I’ll keep you updated. Thanks again for all your support.

[yogabonnie]

thanks for your response and good good good luck!!!!!

[Smallstepsforward]

Thank you. It’s been a long process and I’m really hoping for firm (as firm as they can ever be!) diagnosis on Thursday