Newly diagnosed with PMR : This is my first time on... - PMRGCAuk

PMRGCAuk
11,442 members20,866 posts

Newly diagnosed with PMR

Dejon73
Dejon73

This is my first time on here. I’m 63 years old and was recently diagnosed with pmr. Rheumatologist immediately started me on 40mg prednisone. I seem to be tolerating it fine, and my aches are much better. He also seems to think I may have gca. I get terrible headaches everyday, lightheaded, balance seems off sometimes, hot flashes and the fatigue is so bad sometimes it’s almost debilitating. He thinks I should have a temporal artery biopsy. I see the vascular doctor in 2 weeks. I’m very concerned about all of this. Not sure what the right thing is to do. And if I do get the biopsy done and am definitely diagnosed with gca, then what’s next and how long before I’m back to my old self again?

17 Replies
oldestnewest

Hello, it’s all scary stuff when you are first diagnosed and you start on the higher doses of anxiety fuelling Pred. It will get better as you get used to it and get into what is new way of life I guess. The biggest shocker for me was realising there is no definitive end point in spite of nice neat tapering programmes. Once you accept you have to take it easy and look after yourself indefinitely the easier it gets.

Regarding the biopsy, you have started on a highish dose of Pred which will me rapidly making the inflammation die down hopefully. Unfortunately this makes it less likely that your biopsy, if negative, is reliable and the longer the delay the less reliable the result gets. But, if it is positive through all that Pred then it really is positive and you know that the fuss is worth it. The other snag with the biopsy is that if it is negative, it just means that it may be elsewhere in the artery system, just not in the bit they took from you. Therefore, they have to treat you as if you have it anyway. If your symptoms respond to Pred then that is a smoking gun really. I had a negative biopsy last year and they treated me the same as a person with a positive result.

Read the posts on this forum by searching for topics and you will learn heaps of useful information. My Rheumatologist didn’t give me the smallest hint of any of the info I have got from here.

Dejon73
Dejon73 in reply to SnazzyD

The other strange symptom is my scalp itches a lot. Is that common?

SnazzyD
SnazzyD in reply to Dejon73

I don’t know. The scalp symptoms I had with my GCA was more like pins and needles or extra sensitive when I used a brush.

PMRpro
PMRproAmbassador in reply to Dejon73

Yes, scalp tenderness can feel itchy.

Hi Dejon73 and welcome to the club you didn’t want to join, but it’s a good club full of good helpful people. Snazzy has given you the important initial advice, so I won’t muddle you with more. Please use the forum as a resource to ask your questions as they arise. Good luck, take it easy.

Just an aside. I am not sure if I would agree to a biopsy. As far as I know, it can only tell you that you have GCA in that portion of the artery. It cannot tell you that you definitely don’t have it. It doesn’t alter your treatment either. The doctor would need to convince me of its value. Also, 40 mgs is a moderate dose for GCA, people often take 60 mgs initially. I wonder if a higher dose would give you more relief?

Thank you so much. Especially the biopsy info.

HI! Welcome and best of luck. It is so scary at first. But eventually things get in control a bit and when they are not you can reach out here and will instantly get some good advice! (however take mine with a grain of salt!) My biggest advice is if the docs also want to put you on bone medicine other than calcium and vit D etc. be sure and ask for a DEXA scan. You do not want to take bone meds lightly!! .. and depending on result.. look further.! Good luck!

Hidden
Hidden

Hi Dejon73, I was diagnosed with GCA & PMR in November of 2017... The specialist consultant at the Royal Sussex County Hospital here in Brighton, UK, declined to do the TAB on me, even though he was sure my symptoms related to GCA. He told A&E Consultant that he had only 1/500 chance of actually capturing the "inflammation, the risks outweighed the benefits, and the treatment plan would be the same regardless of what the biopsy showed.

I was happy NOT to have the biopsy as it scared me anyway! I had fairly normal ESR and CRP, but my symptoms were "textbook," apparently, so they started me on 40mg of Pred, increased me to 60mg and then 80 mg...

And the last 5 months has been the sorted, complicated, upside-down, heartbreaking, unfreakinbelieveable, comical, depressing, interesting, typical, story of my life!

Best of luck to you!

xdbx
xdbx in reply to Hidden

Hey mamici1

I'm in Brighton too!

I've been mostly very pleased with the attention and advice from my local medical team here and at the Royal Sussex. The only thing they don't want to bend on is biphosphonates. Both my GP and my rheumy's 'stand-in' (junior?) at last appointment said they'd take AA it if it were them, even though my DEXA results are in normal range, but lower since starting Pred. I've stopped taking it anyway and started Vit K2 Mk7 with the Vit D and Calcium. I just need to walk more...!!!

Hope you're able to enjoy this glorious weather... 🌞

Hidden
Hidden in reply to xdbx

Happy to hear they (RSCH) are doing right by you! I worked there, as an Admin, before PMR/GCA. : ( I miss it.

Both my GP and Rheumy seemed pretty were okay with me not taking AA... but I eat a can of sardines EVERYDAY for lunch and have for the last 5 months, also eat prunes and take Evacal, so hopefully I'm good.

xdbx
xdbx in reply to Hidden

Sorry about your work 🙁

Great re AA though! Are you due a DEXA scan any time soon? Sardines and prunes sounds really good to me and I think Evacal has Magnesium too :)

Dejon73
Dejon73 in reply to Hidden

This stuff sucks! I go to see my rheumatologist tomorrow. I’ve decided not to have the TBA. I’ve been on the 40mg prednisone for 2 weeks. The muscle aches seem better, but I have NO energy. Still getting headaches daily, along with dizziness. I went grocery shopping yesterday. Was at it for about 30 minutes and I had to go sit down. It’s like the fatigue just hits me all of a sudden. And at times it can almost be debilitating. I

Purplecrow
Purplecrow in reply to Dejon73

You're right...this stuff sucks! I have PMR, and the fatigue in early times was stunning. I found it got better with time.

In the meantime, if you can take breaks in the middle of shopping trips, you may find that will help you get through those necessaries..

My experience with fatigue is that it hit suddenly, and eased after a bit of a rest.

I suspect this is not how you functioned in the past, but it absolutely is how the immediate future will be.

Kind regards, Jerri

Dejon73
Dejon73 in reply to Purplecrow

Thanks for the tip.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Dejon73,

Welcome, others have given you good advice, so I won’t repeat, other than you say, the symptoms really are the key, and the biopsy is not the gold plated solution many doctors still think it is.

If it’s positive result, then it’s definitely GCA, but it can come back as negative - but that doesn’t necessarily mean you don’t have GCA - just not in the tiny sample taken - not quite the same thing! But it does then send the Doctor is the wrong direction!

If you have GCA, and most of the symptoms sound like it, and the dose you are on is not controlling them, then you may need a bigger dose- 40mg is usually the lowest starting dose for GCA, whereas it’s very high for PMR - your Rheumy was obviously hedging his bets.

Whatever you have, you are in this for the long haul - anything ranging from 2 to 6 years. That sounds awful, but once your symptoms (inflammation) is controlled, you will be able to function again. Not back to normal, because you still have the illness, but certainly better than you can now!

Have a read of the attached.

healthunlocked.com/pmrgcauk...

Ps. Not sure about the itchy scalp...never had that!

As you are already on Pred, it is unlikely that a biopsy will show GCA.

I had my biopsy the day after I was first diagnosed with GCA and PMR. Because it was done so soon, it provided a positive result in great detail. However it was very painful and uncomfortable and I would have been very resentful if it had been done a couple of weeks later when the result might well have been negative. I was told that they can anesthetize the surrounding area but not the artery itself as it will collapse and make it too difficult to take a sample.

You may also like...