Hospital admission

[Sarahj25h]

Hi , I'm new to this so please forgive me if I don't know all the proper titles . I'm writing this on behalf of my mum who has been admitted to hospital last night .

She was diagnosed with pmr last November clinically because of severe pain in her shoulders , arms and hands .she was put on 15 and has slowly reduced from 15 to 12 over the last eight months .

During this period she had also intermittently experienced pain the head at the back and across the forehead also stinging pain in the face and jaw.

This last week she has experienced her glands being up and has been finding it really difficult to swallow resulting in her not being able to sleep through fear of not being able to swallow .

Last night she had the most severe pain in the back of her neck which she describes as like being hit with a sledge hammer . This resulted in going to A&e and having a CT scan which came back all clear and z lumber puncture which she is awaiting the results . They were looking for a bleed in the back of the neck .

The consultant is quite dismissive of any link to GCA and is reluctant to do any more tests .

My mum is understandably worried in case this happens again . Her headache has subsided a little but still not gone and she is very tired.

She just wanted know if any one had any idea what could be going on . She also mentioned that there is a possibility she forget to take her HRT patch on Thursday and wondered if this steroid / hormone imbalance could of had anything to do with it .

Thankyou very much il await your replys. She is 64 .

[PMRpro Ambassador]

Hi Sarah - don't worry about proper titles - yours said what has happened, it's up to us to read the rest.

Sorry to hear about your mum and it must be pretty scary for both of you. I see where the doctor is coming from because it isn't really typical of how GCA might present - but there are plenty of atypical ways! And she is young (not too young) for such nasty things to be going on.

First question: have you any idea what speciality the doctor who admitted her is since it is the weekend? My daughter (who is a paramedic) was admitted after a really severe asthma attack - and the overnight admitting doctor tried to tell her it was because she is overweight! He was a gastroenterologist. The chest physician snorted when she told him what the other guy had said! Tomorrow she should see the appropriate specialist but if she doesn't do try to make sure they know you want her to be seen by a rheumatologist because of her history. Is she already under a rheumatologist? Is it at the same hospital? At the very least they should have done ESR and CRP blood tests - were they raised in her PMR diagnosis? They are indicators of inflammation and are usually raised in PMR and GCA but for about 1 in 5 patients they remain normal.

I suppose it is possible she has reacted to a lack of HRT but I would be surprised. However - the result of the lumbar puncture may show something and in the meantime she is in the best place. Just make sure she has had her pred and at the right time - hospitals are awful about dishing out drugs as accurately as we take our stuff at home, especially with something like PMR where it makes a difference to our day when we don't take it as normal.

By the way, difficulty swallowing CAN very occasionally be a sign of GCA affecting chest arteries but they wouldn't find that except with a special sort of CT scan, PET/CT. I don't know that swollen glands happen in GCA though. You say stinging pain in her jaw - has she had any scalp pain or feeling that her jaw is tired when chewing, even if it isn't really pain? Cough or sore throat?

I do hope she is feeling much better very soon - and that they identify something as the cause. Do keep in touch - we want to know what happens. All the very best to you both.

[Sarahj25h in reply to PMRpro]

Thankyou , no I don't know the doctors speciality who admitted her . She isn't at the moment under any rheumatologist just her Gp but I think that is a good place to start .

Her levels have both always been low , I can't remember exactly what they were and are so therefore they are still low now I need to check if they have raised at all .

She did have mild stinging in her head and jaw pain but it comes and goes and she has bad heads and jaw pain when she over does things but has been reluctant to mention to her GP as didn't want to self diagnose GCA especially as her markers are low .

Il let you know how she gets on . Thanks .

[PMRpro Ambassador in reply to Sarahj25h]

If she has low blood levels then really she could do with being under a rheumy (not that they are always any better!) and if they were low with bad PMR I doubt they will rise with GCA. She also MUST mention these things - it isn't self-diagnosing it's laying all the cards on the table. Doctors aren't mind-readers and what a patient thinks might not be relevant might be just a piece in the jigsaw.

GCA is a pig to identify quite often - and without raised blood markers it is all the more difficult.

And you look after yourself - don't spend the night worrying because you'll no-one any good if you end up in a crumpled heap!

[Sarahj25h in reply to PMRpro]

Thankyou

[babssara in reply to PMRpro]

Hi PMPro. All the symptoms you have put in your post apply to me. Just diagnosed PA and GCA privately and said he wanted urgent NHS referral for scans, dexa, blood tests x-ray. He put me on 30mg Pred. Appointment with NHS rheumy not until September. Nothing at all come through regarding appropriate investigations,

I went private initially as I was in a flare of what my GP suspected was PA and he wanted Rhuemy to see redness, swellings and nodules on my hands/fingers. Also what I call skull pain (not a headache) and really stiff neck. I have pain in my throat which I would describe as swollen glands right next to my windpipe, very difficult to chew food and swallow. For the past two years I have had constant fatigue and keep getting chest infections which last roughly 12 weeks and three lots of a/bs. I'm so breathless mostly late afternoon onwards, even just walking up stairs puffs me out. Talking for any length of time wears me out, I feel as though I am not getting enough oxygen into my lungs. Balance and dizzyness are a major problem too.

Prior to this I have always been fit and well and been very active - not now! In December I had a bad fall down the stairs broke my rights shoulder (pins and screw - yuk). Since the accident I have been really unwell most of the time (bed bound for 6 weeks) major flares of pain swelling etc. I just thank god that the Pred has relieved the inflammation and am not in the excruciating pain I was but now that I am not in so much pain all the other symptoms have now come to the fore. Hi ho that's life.

[PMRpro Ambassador in reply to babssara]

Having chest problems like that and needing so much antibiotic therapy should have triggered a referral to a chest specialist a long time ago - but I know from my daughter's experiences that GPs are very behindhand in coming forwards to do that. It took her being blue-lighted to hospital during an asthma attack to bring that about. GPs happily hand out abx despite the the encouragement not to do so. At the very least there should have been sputum cultures to make sure it really WAS bacterial bronchitis - which it most likely wasn't.

By the way - I found a GCA symptom list yesterday that included swollen glands so my comment earlier has been answered!

But all that makes me feel that whatever else you need in your tests it should include a PET/CT to see if you have inflammation in your chest arteries - which happens in GCA. It isn't all in the head...

[babssara in reply to PMRpro]

thanks for the advice and information - really helps me to understand. These "chest infections" I have at least twice a year, very long lasting. Not really had green sputum, jut the feeling that my right lung is blocked , really wheezy. Sometimes I feel as though I am breathing through water, so congested. Occasionally after a really long coughing bout I will cough up a "massive gobule of glue" (Sorry to be so disgusting!!!), but what a relief - I can breathe normally for a few days, then it starts building again.

[PMRpro Ambassador in reply to babssara]

Yes - referral to a chest specialist is called for I think. There is definitely something "not right" there - whether it is the vasculitis or something else is immaterial.

[babssara in reply to PMRpro]

Thanks. Hoping to see GP on Wednesday. The new a/bs are giving me terrible abdo pain. I will ask for referral to chest physician.

[babssara in reply to PMRpro]

Saw gp - he has arranged spirometry to test for COPD. Hope not that as well. Finished 3rd course of a/bs still no improvement in breathing. Still praising steroids but residual stiffness and sore joints. Is this usual? Also balance, dizziness, clumsiness not improved. Is this normal as well. I've a lot to learn about this horrible condition,

[PMRpro Ambassador in reply to babssara]

Yes - the expectation is for about 70% global improvement in symptoms with the pred. Some people do better than others. The balance/dizziness/clumsiness make take some time to improve and may need some work on your part such as Pilates, Nordic walking or tai chi - each of which has helped someone to improve their balance.

Your muscles are probably all over the place after walking badly because of the PMR. I have found Bowen therapy helps with many aspects of PMR and others have also derived great benefit from a few sessions. It really is worth a try.

[PMRpro Ambassador in reply to PMRpro]

PS - I found a list of GCA symptoms yesterday that included swollen glands - I amend my comment!

[olive2709]

Well done ,you are in the right place iam 62 with GCA had it for 11month's. some how I think with you on her side she will get the right care . My hubby has been there all the way helped me feel stronger . Just remember to take time for yourself