Temporal artery biopsy tomorrow!

The biopsy incision is fine and I have lovely, clean, fluffy hair! :-)

Still waiting for results and PET scan date. I jump every time the phone rings!

Am so, so tired. Went for bloods yesterday, which means a train trip of 40 minutes with an occasional change if no direct train, change to underground train for two stops and then a 10 minute walk to the hospital. I was exhausted at the end of it all.

I was exhausted just THINKING about it!

:-)

Wow, what a day. I just went for bloods. got it my car, drove 500m... got out, walked 10m, went straight in. Out in 10 minutes, got in my car, drove 3km to work. Now sitting on my butt reading this forum.

It's tough being me. lol

Working hard on social media   

given I work in an agency on health and welfare data, and in particular on the website stuff I can almost justify being on here.... almost. lol

So an early night on Tuesday then, Susanne!  Great to have the opportunity of a PET scan.  At the Vasculitis Symposium in London last year, it was mention how expensive these scans are and how more trained staff are needed.  Apparently, most centres will only use PET where cancer is concerned.   Good journey and good luck!

Thank you, Mrs O. Yes, I do know that it's highly unusual to be able to get a PET scan for GCA. My rheumy is determined to get to the bottom of why I feel so ill and lacking in energy. I can barely walk these days and get very out of breath. Pins and needles on left side etc.

Yes - Sarah Mackie from Leeds was saying last week how much inflammation she has found doing PET scans on PMR patients. I really do think that difficult PMR and moderate GCA are much the same thing - just the symptoms are made to fit one or the other. Does that make sense? I mean that a lot of PMR should really be classified as GCA - and it would be wonderful if we could have PET-scans instead of them messing about with tocilizumab. It will never be approved for PMR as long as they all think that pred is enough and PMR is non-threatening and goes away in 2 years...

Perfect sense, Eileen - PMR and GCA sort of meeting in the middle. There's always been a question in my head as to whether those being diagnosed with both PMR and GCA (the latter not affecting the temporal arteries as in Temporal Arteritis but 'just' the larger arteries in the body) could be experiencing pain which is due purely to GCA rather than being due to PMR.  So frustrating that there is such a wonderful invention as the PET scanner but that it is rarely available to us.

good luck! let us know how you get on!

Thank you Flip. I will. ☺

Oh Susanne, I'm not surprised that you are confused.  I'm not surprised either that the biopsy was normal but did have high hopes of the PET scan coming up with a somewhat different result and therefore a definitive answer for you.

You could be right that some of the symptoms you are now experiencing could be MTX side effects, especially if they only occurred after starting that drug.

Perhaps when your original rheumy is back from holiday you can try and get your appointment brought forward?

I'm so sorry - I know how disappointing it is when you think you'll finally get some clue as to what is going on.

I shocked that there's not more in the PET scan - shouldn't it show inflammation for example?

I assume there is no sign of inflammation due to the pred keeping it at bay.

Thinking back, I was feeling very unwell before I started the mtx in January, although not to this degree.

Yes, to an extent, the MTX must be causing some of the symptoms, although I have been feeling really unwell for much longer, since at least September time last year, but then again, I've been on such high doses of pred for a long time. That can't be doing me much good either.

I hope to have a good chat with rheumy about the overall situation when she's back.

Sarah Mackie did say (at the meeting in Whistler we were at) that having patients on pred does make a big difference to the results of most things looking for inflammation ( which is quite logical) though it didn't occur to me to ask if that also applied when the ESR/CRP were raised.

Just shows the importance of trying to do such imaging originally before starting pred - which could be done if there were a proper fast-track set-up.

It`s logical to me but, when my dotor rang last week with blood test results, she said good news your reading was 1...(not sure if it was ESR or CRP) to which I replied, but surely the Pred would keep the readings down (11mg) she said no, it dosen`t work like that!  Then she said the test for RA shows I don`t have it....and you have often said there is no definite test...I didn`t say any thing at this point, because doctors/rheumies hate being challenged, but I have to say, in the four years of having PMR, this has puzzled and frustrated me the most.....they aren`t consistent with each other!!...and it only serves to stress us patients more.....not knowing if results are true or not...that`s my rant for the day

I don't know - how does she think it all works? Raised ESR and CRP are due to the formation of particular proteins as a result of the inflammation - no inflammation due to pred, no proteins to raise the ESR and CRP. And rheumatoid factor is just rheumatoid factor - it's part of a picture overall but being seronegative doesn't mean you can't have RA. 

I suppose you have to accept that very few tests are definitive - they just contribute to the file of evidence. I worked in biochemical medicine - where we knew that what we told the doctors wasn't a 100% answer but they had their own beliefs.

I see my doctor in a couple of weeks (couldn`t get in before!) and I will delve further about the results and ask more probing questions.....but yes, they have their beliefs..

My sister had seronegative results for RA, so mostly get told by docs/rheumies that she has "inflammatory Arthritis, (more confusion) so when I went with her once I asked outright is this Rheumatoid Arthritis?....yes!....my sister wanted me to ask.....now she knows exactly what she`s dealing with.....Thanks again....