GCA SUFFERERS -HAS ANYONE HAD TROUBLE WITH HEARING ?

Jean, I am interested to know where you are today with the hearing problem and the amount of Prednisone you are on. I am dealing with the same issues and have been on Pred for over a year. I can't seem to get any lower than 12mg before my eyes have issues.

Just because the biopsy is negative it does not mean that you don't have Giant Cell Arteritis, either in your carotid, temporal, cranial or other arteries. What is your CRP and ESR? Always ask for a copy of your blood test results. If the biopsy is negative but you have GCA symptoms, the doctor should treat you as though you have it because the consequences of poorly treated GCA are extremely serious both in the short and long term. Ask for a stroke risk assessment as you might need to be cautious of this especially. The reason why GCA is not usually treated in primary (GP) care is because the illness is very complex and does not just involve the head and neck.

Sorry, I hadn't finished. Ask for a referral or a second opinion. You have a right to receive this. List your symptoms by putting them in writing including your hearing loss. Most opticians do hearing checks now so you can plot any further loss. Take someone with you when you visit your GP and record the session. It is negligent that doctors think that hearing loss is a minimal inconvenience or that an increased risk of stroke and dementia are not incurred at huge cost to the patient, their relatives, friends and neighbours and to the NHS who have to find massive sums for prolonged and serious care for those who are disabled by through lack of proper assessment and treatment. .

If you inflammatory markers are down to normal and you feel well, then is the time to reduce the medication, not before as this brings on a relapse. If you are having eye symptoms, a visit to the optician to establish a baseline is useful as is a hearing test to ensure you are not losing hearing abilities. When arteries are damaged, even a small amount of inflammation can cause a major problem. There are very few good online sites with information. I found one on here for doctors which I thought was just passable though far from perfect which I printed out and gave to my foctors and health practitioners so they had some idea of the seriousness of GCA and that not all depends on inflammatory markers, they are just part of the parcel of complexities that this illness causes. I would be wary of telling doctors their job though as once you have told them you are the expert on your condition, they will put your illness in your hands. This is a huge danger and not one to be sought. Even doctors see doctors when they are unwell and do not treat themselves due to inherent dangers that doctors are familiar with but patients rarely know about.

I did not realise you had to wait until your inflammatory markers were down to normal before reducing. My rheumatologist started me reducing when my ESR was 96 and my CRP was 52. They had reduced quite a lot from the initial readings though.

When your inflammatory markers are normal, it means the medication is being effective at controlling the inflammation. This is what is called 'remission'. If the anti-inflammatory medication is reduced too quickly, and you receive insufficient medication to control the inflammation process, you get what is called a 'relapse'. It's not the inflammation which causes these peaks and troughs but effectual or ineffectual levels of anti-inflammatory medication. I insist on having sufficient now to reduce the inflammation to normal levels because for the first 15 months, I was up and down like a yo-yo!

Hi suesing, I'm new to this forum and so glad I found it, it's helped me so much! So many helpful people. I was diagnosed with pmr in April and started on 15mg pred. Reduced to 12.5 almost two weeks ago as esr was back to normal. Pain is o.k just the terrible brain fog when I take the pred. 

I was interested to read your experience of blue and white flashes that I sometimes get too, in my peripheral vision. I have the less serious form of glaucoma (no pressure) but optic nerve damage. I only started getting flashes after pmr diagnoses. I see a eye specialist every 4 months and last saw him beginning of April. I'm sure if there had been anything amiss although I didn't have the flashes then, he would have picked it up, I will certainly mention it next time. Hope this helps you. Marilyn

Hi Marilyn.  The flashes I get tend to be mainly low down in the eyes, especially in the right eye and also near the edges.  Sometimes they are right in the centre of my vision.  Thankfully they have become less frequent over the course of the year.

Thank you for your advise misdiagnose.  It's sometimes difficult to remember to report everything to my GP and I think I definitely need to write things down.  I have found that the consultants at Rheumatology are open to discuss any symptoms and are generally interested to know all the details of what it feels like to have PMR and Prednisolone withdrawal, for their own research, which is not the case with my GP.  I am seeing another GP from the practice tomorrow.

Hi flutterbie, next time you feel so unwell, and especially when experiencing such symptoms, present yourself at a&e. At the very least one would hope that you'll be given the once over. All the best, christina 

Thanks Christina, I was so surprised by Dr's lack of input. We have recently shifted to a new area - bad timing - we were happy  with our old Dr who we knew for 20 years. I was so out of it, I didn't even think to go to A&E.

Head and face pain when patients have GCA/PMR are cause for immediate investigation. Who said your glands were swollen? You diagnosed this? When you see a doctor it is best to describe your symptoms and let the doctor diagnose what is wrong. What you could be describing is blocked arteries. Do you have a fluttering temporal pulse? Did your doctor order a blood test for ESR and CRP? I have relied on a high dose of asprin at times like this but you might not be able to take it. Sometimes, I have taken a few higher doses of prednisolone which has relieved the pain leading one to assume that this is the answer. If you see a map of the arteries which supply blood to the face and head, you see it involves all the face and head, including teeth. The nerves in my back teeth died presumably due to lack of blood supply. It's harrowing, that's for sure! 

Dr eventually said they were glands (not me) , but I did have to push him to get that informatio, I didn't suggest it. I showed him where the swollen areas were. I still have two swollen areas above where ears join head, and pain which goes right down both sides of neck from base of ears. I did ask after he said"'glands" - have I caught a bug, why are they swollen - no answer.  He did do blood tests, but has never showed me the results in the past, even tho I have asked. I am not sure what you mean by a fluttering temporal pulse, but I have what we call palpitations - I can hear my heart constantly beating in my right ear, and I can put my hand on almost any part of mythroat (right side)and feel my pulse beating strongly. This is a major change for me because for the last few years they usually can hardly feel a pulse on me - old Chinese Dr said 'very low life force'(i think he said). now it is the opposite in my neck anyway.Also had extreme pain in leg one night - it went over ankle and almost in a straight line to knee - didn't appear to be 'a' muscle - went on for 20mins or so - extreme agony. tried to get a reason for this also , but no luck. Dr was really evasive when husband tried to push for a specialist. (semed odd) Does asprin just thin the blood ? I have always been a boarderline bleeder - never really given it much thought, but I probably wrongly assumed that meant I had thin blood - but it would be down to clotting factor probably. I will look for a map of the arteries 2moro and see if I can map my own pain.

If you havent already done so you need to find a rather more helpful GP - rolling his eyes is an unprofessional response to any patient! If he doesn't know - he needs to find someone who DOES know and that is his role: he is a door-keeper who should know when to send someone to a higher authority. And as the others have said - A&E is often a good way to get another opinion if you get worsening symptoms.

Hi there. How are you feeling now and is the blocked ear better? I have a doctor appointment tomorrow.So discouraged.

My problems 3 years ago eventually settled, but I did have another bout of similar problems back in September /October last year, which eventually settled too. I do get sinus constantly and I use a salt spray to clear them. My head pains were not connected to sinus but no diagnosis was ever made.

​Good luck with your Doctors appointment. let me know how you go.

Thank you so much for replying so quickly. I haven't been able to Sleep all night I am so scared. My ear is totally blocked now. I have made an appointment with a new rheumatologist in Boston for today. I feel this is GCA. I have read that you can have ear problems with it. My blood tests come back good now since I have been on prednisone. I am a totally wreck here .it is such an awful feeling.

Did your ear feel better with increased prednisone? If this is not GCA ...well I am just so scared. Thanks again and I am glad you are better.