Help...still got blurred vision!!

Hi Linda

Sorry to hear you haven't got answers but pleased to hear you don't have GCA.

I also have very annoying blurred vision, it doesn't sound as bad as yours in that although it is every day, it is not all the time and wearing distance glasses sometimes helps a bit. I also have the fatigue just learning to live with it. 

Maybe Eileen will be able to tell us. My assumption is that the fatigue is coming from the underlying PMR, not sure about the blurred vision though.

Sheila

I know that pred can cause blurred vision but I don't really know the mechanism - didn't the eye specialist say anything? 

The eye specialist wouldn't be able to see an effect on where the optic nerve joins the retina until the optic nerve was damaged - and that only happens when the blood supply to the nerve is stopped, there can be a reduction in flow that might not cause obvious damage. If you had any GCA otherwise in the area it would need high resolution MRI imaging or PET/CT to show the inflammation - perhaps you could ask your GP if he has access or perhaps via the rheumy? I suggest it particularly because you mention jaw pain and feeling so ill - it could be large vessel vasculitis in the neck arteries. I know that Siemens has developed imaging for it so it may be available. Would your GP consider trying a higher dose of pred to see if it helps the symptoms? It just seems strange the blurring happening NOW at relatively low dose of pred when it hadn't happened before - it could, but it makes me suspicious.

I really do appreciate the not being able to drive aspect - due to a daft specialist I had nearly 6 months without my licence whilst waiting for an EEG to be done and reported that coincided with the onset of really bad PMR - it took 6 weeks to do and over 3 months to report. There was no need for me to have surrended the licence in fact but she had told me to so I had to. I could barely walk - the PMR was not recognised, that took over 6 months, so no pred. It was a fairly hellish time being stuck in the house, you have my sympathy.

Hi I too have vision problems which started at the begining of my PMR journey over a year ago, so much so that I ended up with prescription glasses that were not suitable. I obviously went for my eye test whilst having episodic blurred vision, so the glasses were then useless when vision ok.

I still get problems but it's not something I notice unless I'm trying to read, normaly I don't wear reading glasses. At times even when wearing my specs the television viewing is not as clear.

I rd go to a specialist early onset of PMR but he found nothing untoward, went again 6 months after and again he found nothing and discharged me.

Hope you find an answer soon

Kind Regards

Dear Linda

The news is not good!

Temporal Arteritis (inflammation of the temporal artery) is confused with Giant Cell Arteritis which is a systemic condition. A ophthalmologist cannot tell if someone has GCA as GCA can affect any large or medium sized artery (and possibly smaller ones also). 

There is no 100% accurate test for GCA and they cannot say you do not have it, only that they have not found it (usually because they have not looked). However, the patient does need sufficient prednisone to reduce the inflammation so that permanent damage is avoided.

If the inflammation is not reduced, lesions, aneurism, etc., can increase a patient's risk of stroke, dementia, heart attack, etc.

By focussing on temporal arteritis, the doctor conveniently takes patients' minds off inflammation which might be occurring elsewhere. Tests to discover iinflammation in other arteries are so very expensive and there is no good remedy even when found.

We need a good 'What Your Doctor Won't Tell You' guide!

 

I've been on prednisone for 8 months now (started at 40 mg and currently reducing to 15 mg following a slow tapering regime) and have had many occurrences of blurred vision for varying periods of time.  No doubt the prednisone is the culprit, but may also be caused by dry eye from time to time.  Eye drops sometimes help. 

I have been set up to receive eye examiniatons every 3 months and my vision varies each time.  For now I won't be changing my glasses prescription! 

Tha last 3 to 4 years have had blurred vision before anyone even suggested that I could have PM R .Have been treated for PMR for about 3 months now .Saw optition at eye hosp had a lot of tests some uncomfortable but nothing was found ,have a chk up yearly with my own optician because my father had macular problems and that is ok . So because I couldnt get the Red Cross on screen to line up I was told the muscle was weakening in my eye . Next time I see my doctor will bring up with her Can still see ok to drive but feel need to clean glasses all the time .One problem I think we may all have is that we become very focused on something that is worrying us which makes it seem much worse . It is important to have the questions ready to ask at your next appointment and push for answers .Read what people say on these forums and use as a tool to ask the right questions but not let your self be scared to death by some of the replys .

Linda, my blurred vision from GCA worsened shortly after starting steroids at 40mg, and my rheumy put the blame on the steroid dose.  I feel it would be a little odd for your sudden blurred vision to be a side effect of the steroids now you have got down to 7mg after 3 years.  You haven't mentioned any other symptoms, such as returning PMR-type pain, but feeling "drained" is a common symptom of both PMR and GCA.  Perhaps your GP can arrange an emergency appointment with a good rheumatologist.  I know an excellent one - whereabouts are you?  Failing that, if you're able to get to London, then Moorfields would be your best bet for your eyes.