Quick Question

[Rowboat]

As you know I have GCA been on 65mg pred for 9 weeks now, still suffering constant bad headaches and jaw pain. Waiting on 2nd biopsy result.

Is my sight/vision still at risk??

[jinasc]

Did the 1st biopsy show negative? If it did that does not mean you do not have GCA, the piece they take is so small it can and is often missed.

So you have GCA and that is why they have you on 65mg.

If you are still having headaches and jaw pain, it is not enough to control the inflammation and yes I would say your sight is still at risk and I would be going to the A&E and asking to see the Consultant in Charge and raising hell. I am surprised you have waited so long to ask the question.

If you don't want to raise hell at A&E, raise hell with the Consultant and GP on Monday.

Some people with GCA are taken into hospital and put on an intravenous drip.

pmr-gca-northeast.org.uk/us...

Follow this link and read up on Diagnosis and Treatment of GCA.

[Rowboat in reply to jinasc]

First biopsy was positive, for some reason they need to cover their behinds in case I die of pneumonia and my husband sues them for having me on high dose pred for no reason. I am so ant I hospital, Sunday night here, tomorrow is a public holiday but Tuesday I see my eye specialist at 10-30am. I thought if you were on pred even if not enough your eyes would be ok? Now I am more scared but even if I go to Er I can't see anything positive happening.

[PMRpro Ambassador]

It is impossible to say because even if you have GCA it may or may not be affecting the blood supply to your optic nerve which is the crucial point. You have a positive biopsy, you have GCA. The second one is meaningless and they should know that. The temporal artery being affected or not does not tell you which other arteries are affected.

There are doctors who will try to tell PMR patients that the dose of pred they are on protects them from GCA - and that is utter tosh. However, at 65mg they would assume you were probably pretty safe - but you cannot rule it out entirely even though the risk must be reduced considerably. The situation remains unchanged - if you have any visual symptoms you must go to ER and see if they will give you more pred, preferably in the form of pulse therapy, high dose infusions over 3 days usually.

[Rowboat]

If the biopsy is positive the 2nd one I think that is what they are doing. If it is negative they want to test me for everything that is when I go to the big smoke. My vision is ok but the pain is worse in my head and jaw and the energy the pred gave me has halved. I don't want more tests just treatment.

Right temporal artery biopsy -- Mild Adventitial Inflammation.

Higher up it showed mild perivascular lymphocytic infiltrate. They also said this could reflect treated Temporal arteritis . remember I am on azathiopirine , have been for more than 10 years

[PMRpro Ambassador in reply to Rowboat]

Where is the pain in your head? Is it occipital (at the back, the bump above your neck)?

[Rowboat]

left and right temples almost from next to eyes running above both ears to each bump on the back of my head.

[PMRpro Ambassador in reply to Rowboat]

Sounds very GCA-ish - your doctors are out of their depth.

[Rowboat in reply to Rowboat]

when I say next to my eyes almost equidistant between my eyes and airs. The one thing that has gone is the scalp tenderness, I can now brush my hair except for along the temporal artery.

[Rowboat]

I know they are but at least you have reassured me a bit about my sight, When I first went to the ER I had double vision, I still get it a little when I am very tired. Now it is more that the strenghth of my short sighted prescription has dropped by 4 and there is no point in getting new glasses until I am on a settled dose of pred.

[PMRpro Ambassador in reply to Rowboat]

I used to move my specs up and down my nose as it would vary during the day! Mainly my computer specs - distance wasn't as bad.

[Rowboat]

I want my results now but I don't wanna go to hospital

[AussiePolyDee in reply to Rowboat]

Hi Rowboat, Waiting for results is so stressful in itself. Hope you have been able to get some encouraging news today (after yesterdays Public Holiday) I see you are in Wagga, the hospital there is good and I wouldn't hesitate to go there if you need to.

I had to give 'information' to my GP (courtesy of PMRpro and DorsetLady and other contributors to this site!) I'm fortunate have a great Rheumy at St. George, who listens to me re pred. reductions/flares etc.

I don't have GCA, just PMR ( &autoimmune stuff) and found the book by Kate Gilbert, that has been recommended to you is really great. Information that is explained so well.

Best wishes for today's appointment. xD