Rheumy has offered to set up for an temporal artery biopsy

[misaryk]

Hi everyone, so seen my rheumatologist today regarding my dosage of prednisone. Got that straightened out it seems, and she mentioned since I never got my biopsy like I was suppose back in was back in the first week of August, she could set me up for one right away, it was up to me. I am needing some input from you good folks. I have been on prednisone although not a high dose, currently back to 12ng for now., and see how it goes. My optomitrist originally suspected GCA that show I was put on 50 mg to start then down to 40, 30 and so on. So my question is should I go ahead and have the biopsy and maybe it will put my mind at ease that at least I don't have GCA once and for all?

[DorsetLady PMRGCAuk volunteer]

Hi,

It's entirely up to you, but you don't necessarily get the definitive answer you want. If it comes back positive then it is, but it can come back as negative when you do actually have GCA.

That sounds a contradiction, but let me explain - If you have been on Pred for a while, the inflamed cells may have reduced back to normal in the small piece of tissue they test, but not necessarily everywhere else. Or the small sample they take may not be affected at all although other blood vessels are.

Hope that makes sense.

[misaryk in reply to DorsetLady]

Thank you, yes it does completely make sense. There is one spot on my right side that has been tender and still is even being on the prednisone, that's what making me kind of wonder about maybe going through with it, but wanted advise on the prednisone aspect. The twitching I had at the beginning of all this in my right eye has now started in my left eye. And even with my new glasses my vision is still blurry. So I am kind of concerned.

[DorsetLady PMRGCAuk volunteer in reply to misaryk]

Hi again,

Can understand you concern re your eyes. Trouble is, sometimes the Pred itself can cause a blurriness, or maybe could it be a cataract problem. Unfortunately there are so many things that can affect the eyes, but we always have the fear it may be GCA when very often it's not! Would suggest you monitor things, and obviously if things get worse, or you develop any further symptoms then back to optometrist or doctor.

Good luck, and, although it's difficult try not to worry unduly.

[misaryk in reply to DorsetLady]

Yes I am going to see her as soon as I can. I just got my glasses about 10 days ago, progressives, and it seems they are not helping much. Thanks again for you helpful info.

[bunnymom]

I find my vision to be blurry on pred. Currently on 20 but dr says my eyesight checks out fine. I have PMR. Must be medicine side effects as when I reduce it gets better. Hope that helps.

[misaryk in reply to bunnymom]

Yes it does and thanks for replying. Much appreciated. 😊

[jinasc]

Your Gp knows little or nothing about your vision - your opthamologist knows the lot.

I already had glasses and when diagnosed with GCA, went back, got brand new specs with lense that change with the light, night vision glasses for when driving as halogen lights caused me problems. My optician has been absolutely great. The old adage, 'horses for courses' springs to mind - so see your opthamologist.

The biopsy will, in all honestly, show nothing as far as I am concerned and from what I have been told.

Once on pred for longer the five days the chances lessen a great deal. Also you can have a biopsy within that timescale and it shows nothing - you go on medical symptoms. It is a tiny tiny bit of the artery and it can show nothing - because the bit where it would have showed is missed.

There is a research study called 'Tabul' You can google it.

[misaryk in reply to jinasc]

Ok thank you I will look it up. 😊

[PMRpro Ambassador]

Unfortunately that isn't the case - a biopsy will say 100% you have GCA IF it is positive. Only about 40% are but being negative doesn't mean you don't have GCA, it just means they didn't find the giant cells they were looking for. There are several reasons for that - not least because the patient was put onto high dose steroids and more than a short time elapsed before the biopsy was done - and as you say, you were on 50/40/30 to start with. Even a few weeks is enough to make a big difference. Other factors include the quality of the sample they take - it requires a good and experienced surgeon and histopathologist, neither are a given unfortunately. The giant cells are also not spread evenly throughout the arteries - they skip areas and that may just happen to be the bit they looked at. And, not least, the GCA may not be affecting that artery - it isn't the one that supplies the optic nerve, it is just a convenient, superficial artery you can manage without.

So, even a TAB won't give you a certain answer that you DON'T have GCA - it WILL tell you if you get a positive.

[misaryk in reply to PMRpro]

Thank you once again for your information. You have helped me greatly.

[woolyelly in reply to misaryk]

Hi just went through all these posts and I am having loads of problems .But I did go for biopsy and the surgeons didn't want to do it as they said I had the condition as I fell in every bracket of symptoms X but my rheumy says No .but that's another story .

Going back to biopsy to be honest I wouldn't get one done as you have already been given treatment that biopsy isn't going to change anything ,wether negative or positive.

Mine was negative and not a good experience .so my rheumy has discharged me.I am past myself as to where I go to from here.

I asked for second opinion and yes that's fine until my gp rang me to say the rheumy for the second opinion sent a letter saying he didn't need to see me as he thought a neurologist would be better as he thought it might be migraine .omg I am so very angry ,as both rheumies had been in touch with each other and he has made a judgement without seeing me .so me been me wrote and told him that I was disgusted and also shocked that he could diagonose me without seeing me .( what a clever man )

I haven't heard anymore about it but my gp is trying to get me seen by someone else without looking at any reports ect

So watch this space ,I do hope I will be seen too soon as my health is shocking and my life is on hold totally as you get up each morning and can't plan anything as your health dictates it xx well I have had a good moan and pleased to get this off my chest xx .

[misaryk in reply to misaryk]

That's horrible! I truly believe that patients aren't heard anymore. Only the tests a valid, not the symptoms. I did have the biopsy just this past Tuesday. Apparently the surgeon had to go deep to reach my artery so feeling sore. Thank goodness for T3's. Hope everything works out for you with finding a new Rheumy!

[woolyelly in reply to misaryk]

Thank you for that X I had the most horrendous night last night temporal pain but in the right side and not left ,I had to try and sleep through it but was burning up and as usual slept with a wet cold cloth on my head ,which I do every night .I did wonder if this was turning into migraine but after 3 sumatriptan no change ,pain was actually getting worse.

Why won't anyone listen and why do I feel as if they are not interested in helping X well we are not sure where to turn now xx any advice would be welcomed xxxxx

[PMRpro Ambassador in reply to woolyelly]

Woolyelly: Where are you?

[misaryk in reply to PMRpro]

Hi PMR pro is this for Woolyelly? How are you by the way?

[PMRpro Ambassador in reply to misaryk]

Yes - the blasted format of this forum drives me nuts! Sorry!

Me? I'm fine

[misaryk in reply to PMRpro]

I had my biopsy last Tuesday, still haven't heard anything about results yet. But the last 2 days I am finding the side were the biopsy was done very sensitive.It is almost like it kicked up a flare? My scalp is extremely tender and jaw off and on. And sometimes I get an earache briefly, not extreme but a dull one that comes and goes. I am still on 7 mg of prednisone. Which I know is not enough if it is GCA . Last night my right side which is the side that is affected was so tender it hurt to put my head on the pillow, even laying on my back. So slept on the oppositeside.😕

[PMRpro Ambassador in reply to misaryk]

That is a typical sign of GCA (not being able to put your head on the pillow). Contact your rheumy. And if you have ANY visual symptoms - straight to A&E/the ER.

[misaryk in reply to PMRpro]

Ok I will thank you.

[woolyelly in reply to PMRpro]

Hi I am in the northeast X co.durham X

Sorry I didn't get back sooner X again I have been off me feet with this awful illness x

[PMRpro Ambassador in reply to woolyelly]

Then you should be in contact with the NE PMRGCA charity which is based in Gateshead/Newcastle and ask their helpline for assistance in seeing a suitable specialist to identify what IS wrong. I doubt you went to either of those hospitals did you and I wouldn't cross the road to see some of the people in Co Durham.

Go to their site to get the contact details. And get in contact soon.

pmr-gca-northeast.org.uk

[misaryk in reply to woolyelly]

The only thing I can think of is maybe try going to the ER a good person to talk on here is PMRpro and DorsetLady. They are a wealth of information. 😊

[woolyelly]

I am going to try and get to the meeting tomorrow at Middlesbrough .hopefully I might get some help.

I don't know what to do next ,I am now getting earache and tender pain in my face .

Having to try and sleep with a cold wet cloth on your face every night is awful.but I can't do anything as I am not on any meds for this condition. Just my pain killers (zomorph & oramorph ) but that isn't even touching the pains I am going through X I am so tired of it all now and I have always been a happy soul in my own world of pain but now I am suffering from depression and get so worked up over every little thing .

[PMRpro Ambassador in reply to woolyelly]

Which hospital did you go to before?

[misaryk in reply to PMRpro]

Hi sorry, is this message for me?

[PMRpro Ambassador in reply to misaryk]

No, woolyelly.

[woolyelly]

Peterlee but the doctor belongs at north tees ,

[PMRpro Ambassador in reply to woolyelly]

You should ask for a referral to Newcastle or Gateshead - perfectly reasonable from Peterlee - as there are excellent PMR/GCA specialists there. You really do need to speak to the helpline who will give you the actual names which I don't know even though I am involved with the NE charity.

[woolyelly]

Hi I am now hopefully getting referred up Qe at Gateshead .my doc agreed straight away so hope fully he will ring me this week about it xxx watch this space x

[misaryk in reply to woolyelly]

Hi, good news I hope all goes well for you and you get some much needed answers. Keep me updated on how you make out. 😊

[woolyelly]

Hi Hun x rang docs yesterday for update on referral and guess what ,I am so annoyed they were just typing it up ,and this is since Monday .it has took them four days to get round to doing it . Not a happy girl x so now another week is going to go past me without treatment x so again watch this space x

[misaryk in reply to woolyelly]

Hi Woolyelly, sorry to hear that. That's horrible, what's taking them so long to get you in to see someone? Hope you are doing ok in the meantime.