Urgent advice please: Hi Hoping someone can advice... - PMRGCAuk


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Urgent advice please



Hoping someone can advice me on what to do here. My Mum just told me she has been experiencing some unusual sharp, piercing, painful headaches, intermitantly over 2 days. Also her eyeballs have become very painful, like pressing a bruise, and painful temples. She feels more run-down than usual. She is upset.

She has gone down to 15mg of Pred.

She has taken 3 pills this morning - I just told her to take another 5mg pill.

I am going to try and contact her Rheumatologist but usually this is impossible. I don't know what to do.

24 Replies

Hi. My mum experienced headaches when her dose reduced so she’s back up again. But her eyes just ache not painfully And so no sleep again. I think rheumy best person there must be someone who can help eg helpline for the department. Mum lucky to be in Leeds area for this. X

I have left several messages with the secretary for the Rheumatologist, who I cannot get through to and emailed the head nurse in that department who has been helpful before. My Mum's GP surgery is closed for training until 5.00pm so I can't ask her Dr to speak to the rheum

I don't know if the one extra pred pill will be enough and I'm not an authority on what is enough.

Her description sounds like the condition is trying to continue the path it was on before the steroids. When she first got it it did not cause the temple and eyeball pain

Oh dear, really a call to the GP today is in order I think or 111. However, when was her last reduction and before she reduced, was she ok? Has she tried Paracetamol? Often docs will ask this to see if a pain was susceptible to it or not and sometimes clinicians make the judgement that if the patient didn’t think to take anything that it can’t be that bad, erroneously I feel. Is her eyesight ok apart from the pain?

Hi - thanks for your reply - she lost her eyesight totally this time last year due to GCA. She is avoiding painkillers because she doesn't want to mask whatever is happening. Her entire GP surgery is closed until 5pm - I think that 111 will tell us to go to A&E and she is so vulnerable to covid i want to avoid hospital if possible.

So sorry, I didn’t look in order to get out a reply ASAP.

I do understand not wanting to mask anything, but what is being achieved? So, if she needs A&E she needs it, and a GP may make the same decision anyway. 111 don’t like sending people for no good reason and they might even say wait until 5pm as it is only half and hour away. Much has been done to separate potential Covid sufferers in A&E’s and if she is suffering from some cerebral event, worrying about Covid is counterproductive.

Her symptoms are progressing so I think you need to advocate by getting her seen asap by whatever means is the fastest.

she now feels sick and has very painful neck. she is very upset.

123-go in reply to Jeromekjerome

Ring 111 if not 999. Hospitals are very safe and take all precautions to protect patients.

Jeromekjerome in reply to 123-go

i'm on hold on 111 now :(

DorsetLadyPMRGCAuk volunteer in reply to Jeromekjerome

Please consider 999 call or trip to A&E if not resolved by 111 call.....and keep us informed when you can.

Fingers crossed 🌸

That's good. Hope you get through soon. Good that you're there for your Mum.

Can`t help with advice but wanted to say I have had a couple of emergency visits to the hospital because of sight problems unrelated to GCA. I`m 75, considered vulnerable and yet I felt totally safe.

I got through to 111 after about 12 minutes and they rang her while I was on the line (she is 30 mins drive away) they asked her lots of questions to eliminate other conditions and now she is waiting for someone more specialised to call her back.

I have had no luck trying to get in contact with either her rheumatologist or the rheumatology nurse.

123-go in reply to Jeromekjerome

The waiting is very stressful so I hope they've got back to her by now. Are you far away from her? Don't worry about replying if you're tied up but please know that we're thinking of you both.


Since her sight is already gone, there is a bit less urgency apart from the factor of dealing with the pain which obviously is also a major problem.

I do hope the 111 doctors manage to get back to her asap.

111 called back to say her Dr (the one who knows about her case) will ring her in the morning. So I got through to the GP surgery myself and told them it was urgent and they agreed to get another Dr (whoever is on duty) to ring me this evening, he won't know anything about her case (they never do) so I will explain everything and tell him that we need to know how much to up her dose by to combat the relapse.

Still no response from the rheum dept.

I think that's all we can do?!

123-go in reply to Jeromekjerome

If you're not happy with the response from the Doc ( who doesn't know your Mum) and her condition deteriorates a 999 call would be appropriate. Hopefully her symptoms will settle down but if not and she is worried it would be the best thing to do. She sounds 'switched on' and will know her own body. Do let us know tomorrow (or sooner) how things are. Take care.

Another little update - I got a call from a wonderful Dr who was sensible and understanding.

She decided to up the dose from 15mg to 30mg - (based on the last relapse in Feb which went from 20 up to 40mg) starting right after a blood test at noon tomorrow (she squeezed her in) to check the blood markers. - She advised taking her normal 15mg in the morning then a further 15mg after the test.

She also left a note from her to Rheumatology to check this plan and prescribed more Pred.

Very pleased about this, my Mum was very relieved and this plan sounds good. I get so worried about these decisions.

Thank you for all the advice and support x

Thank you for the update. I'm so pleased the GP was understanding: it makes such a difference. It was a horrible situation for you and your Mum and decision-making when stressed is difficult-I can vouch for that personally. All the best to you and Mum.

Everything took an unexpected turn. After she was completely fine last night, I got a call from her partner this morning and drove over to her. She has lost control of her bowels etc. Vomiting, extremely delirious, didn't know her own name, couldn't move.

I got an ambulance and she is now in Majors in A and E on oxygen, slight temperature and signs of infection cold extremities etc. She hasn't taken her Pred or other pills this morning but I finally managed to speak to the Dr and they know the situation. We are not allowed in the hospital.

PMRproAmbassador in reply to Jeromekjerome

So sorry - do hope she is OK - have they any suspicions?

I'm sorry. Although you won't be able to see her she's in the right place now.

Look after yourself.

Just thinking about your mother. I haven't had GCA luckily but I am registered severely sight impaired, technically blind although I do have some useful central vision. I've found that the RNIB and the Eye clinic liason officers at the local hospital were all useful for things like helping me apply for benefits, putting me in touch with support groups etc, getting aids for the bathroom etc. Have you had any help with things like that?

So she has had chest X-rays and tests - diagnosed with Sepsis and Pneumonia. Her white blood cell count was ZERO - a possible rare side effect from Leflunomide.

The drs think her chest infection spread everywhere else and possibly brought on the GCA flair at the same time.

She is on strong IV antibiotics, oxygen, fluids, IV steroids

I got to spend some time with her before she was moved to the ward, she was much more herself and understood what was happening- not the same level of delirium as this morning but still very uncomfortable and upset.

They have everything set up so that if they need to move her into the critical unit they will not be delayed. They made it clear that to us that she is very, very ill. All the staff were excellent.

It is nearly one year to the day that she was first diagnosed with GCA.

PMRproAmbassador in reply to Jeromekjerome

Not out of the woods - but in the right place. I suspected it might be sepsis. It seems to be getting far more common these days - I wonder why.

It may be rare with just lefunomide - but it is a recognised adverse effect of combination therapy of leflunomide and methotrexate.

Finger crossed and virtual hugs to you all.

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