Headache & Biopsy
Posted , 10 users are following.
I had my first visit with the rheumatologist yesterday. I am 60 years old & recently diagnosed (9/17/18) with both PMR and GCA. Started by internist on 20 mg of prednisone- after 5 days increased to 60 mg. Rheumatologist has very high suspicion of GCA based on symptoms and ERC & CRP results. Concern is the biopsies will now be negative due to being on high dose of prednisone for 10 days when biopsy is scheduled. So I have two questions- 1- should this concern me? Dr intends to treat as confirmed diagnosis due to her high suspicions and 3 of 5 positive on the table of symptoms and - 2- when does the headache go away? Considering I have been on 60 mg for 6 days now...
Also Rheumatologist is sending to ophthalmologists, for an Echocardiogram, and a bonedencity scan. She would also try an MRI with contrast for further confirmation and look for 2nd opinions on reading as she feels USA is behind Europe in diagnostics.
Thoughts?
0 likes, 12 replies
lynda62707 MKSimpson95
Posted
Hi MK, I'm so sorry to hear what's happening right now...you've really got your plate full w/tests and concerns. I'm fairly new to this also, about 3+mo in, so I'm still trying to navigate my way through.
I too live in the states and I'm beginning to find (in my experience anyway) that doc's aren't real educated on pmr/gca. Where do you live? I'm in California.
The only thing I can say about headaches is that since being on pred. (16mg) I wake up with a headache Every am!
I also have double vision in my rgt eye due to an atypical cataract. I go in for a surgical consult in a week or so....but that is still up in the air due to finances. I've been told of the real possibility of losing my eyesight in that eye if I don't have it done. Can you say---Stressful?
Please keep us posted. It's always reassuring to have someone to "talk" to!
MKSimpson95 lynda62707
Posted
Oh my that is awful... and stressful! I live in Oregon, your neighbor to the north. I will say I am somewhat impressed with the rheumatologist- she has been published in the AMA and referenced that she felt the US is behind the rest of the world in the field. Time will tell though! I will send good thoughts your way and hope all goes well with your appointment.
/mk
val26097 lynda62707
Posted
Thank goodness for our NHS here in Britain. I am also waiting for cataract removal. Having preop assessment on the 8 Oct, so shouldn't be too long for op. I was also told that due to GCA my other eye cataract will develop quickly. Good luck
EileenH lynda62707
Posted
Headache is a listed side effect of pred! Can't win sometimes...
r.d.s26296 MKSimpson95
Posted
Feel better quickly
EileenH r.d.s26296
Posted
I believe MRI with contrast can - but PET-MRI won't because the pred suppresses the emission. The brain also takes up a lot of tracer and that swamps everything in the area.
This
https://ard.bmj.com/content/early/2018/01/19/annrheumdis-2017-212649
recommends ultrasound and MRI. One assumes they know a bit about it!
MKSimpson95 r.d.s26296
Posted
margaret22251 MKSimpson95
Posted
MKSimpson95 margaret22251
Posted
EileenH MKSimpson95
Posted
This lady sounds like a keeper!!!
The MRI with contrast may find something - an MRI alone probably wouldn't. Even if the inflammation is reduced there should be signs left in any affected cranial arteries.
Have you had a biopsy? If she is intending treating it as GCA anyway why put you through it? And the improvement in getting positives with both sides is only 5% over just biopsying one side.
If the 60mg is enough the the headache should be at least fading after 6 days - but everyone is different and sometimes it just takes a bit longer. But I would check back with her if there isn't any difference soon.
MKSimpson95 EileenH
Posted
Mrs_Hobbles MKSimpson95
Posted
I'm my opinion, I would be asking your rhumathologist if a biopsy is really necessary after 10 days on 60mgs, and more importantly when a negative doesn't mean a negative. The biopsy is not pleasant to say the least, and you have the healing to deal with along with everything else. I had a biopsy, like you, after 2 weeks of 60mgs pred and surprise, surprise it was negative and was then told, well that doesn't really mean a negative!!! I honestly don't know why I was put through it, sooo I'd either say flat out, you don't want it, or get rhumy to give you a good explanation as to why you should have one! Best of luck!