GCA or not update 2

[Marlenec]

I had an appointment with Rhuem Consultant just over a week ago and he believes that I do not have GCA. The 2 main reasons are a negative biopsy and that I had not significantly improved after 2 weeks on 60mg Prednisolone. I reduced to 40mg for 2 days, and by then felt much better - less fatigue, less headache, less jaw and tongue claudation. Reduced to 30 for 2 days, 25 for 2 days, 20 for 1 day, then all symptoms worsened. I spoke to the Registrar and she agreed I could go back on 40mg each day until my review in 2 weeks. Some good days when I felt 70%, but still fatigued and some night sweats.

Consultant believes the headaches are migraine, tongue claudation - missing teeth, jaw claudation - TMJ ( referral), fainting, dizziness and feeling very unwell - viral infection, poor sleep and fatigue - steroid toxicity.

USS report - possible GCA in right frontal artery STA halo sign. Left facial artery maybe atherosclerosis. Still awaiting MRA brain scan report. Follow up should be 3/4 weeks, now on 20mg Pred and to stay on 20mg till next app. I have coated Pred and for PMR take before bedtime, but Consultant said to take mornings. I think this is why I don't start to function until around 11am. But then I get better as the day goes on , until around 10pm..

Meanwhile a visit to GP to discuss new meds, but she was concerned about Rheumatologist's letter re - right arm higher BP than left, so now awaiting referral to Cardiology.

Sorry this is so long, had to kill 2 swans to get enough quills!

[Hidden]

😂🤣😂 The main thing I just had flashing was the fact that the symptoms did get better for a while on the 40mg, possibly due to 60mg and they werent very patient. Did consultant say all those things would have improved on 40mg?? I am not wishing gca on you of course but what treatment strategy have they as an alternative. Of course other thing was

USS report - possible GCA in right frontal artery STA halo sign.

I think it sounds like vascular things are going on. Hope fly they will get to the bottom of it and hopefully someone better placed than me will be along.

I do have TMJ myself and missing teeth that do cause face pain and some jaw claudication. I have a night guard to try and stop the grinding and therefore more damage to my teeth. Most of the missing teeth were were bridges smashed that I had in 1982 due to only having baby teeth in parts. I am have yet another plate made to try and settle my jaw. I had impressions taken yesterday. That and Sternocleidomastoid syndrome have caused dizziness and nausea. I suppose I am saying that some of those symptoms you have can be what the dr said but the eyes and 60/40mg improvement...

That another couple of swans gone but not much help! I shall read responses with interest. 🌻

[Marlenec in reply to Hidden]

Thank you Poopadoop for your reply. I was surprised that he still thought no GCA at my improvement and I also think it's vascular. The main reason I thought GCA was that all these symptoms came on within 3 weeks. When I asked him about the halo he said it could be a mistake and the negative biopsy was the main one to believe. Biopsy was taken on left and US on right.

Sorry to hear about all your problems! Even minor teeth problems are a great worry as we get older, I hope your new plate sorts it out.

At least we do feed the swans with pellets, but they'd better watch out!

😉🌸

[Hidden in reply to Marlenec]

Has this consultant studied at all?? Errr. False negative biopsies!! Optician referral and improvement on high dose pred. You can have gca and still have other conditions. 😤

Thanks for using my artist formerly known as Poopadoop name. I will buy a bag of proper waterbird seeds. The ducks seem to get first dibs. Keep fighting💃🏻

[Marlenec in reply to Hidden]

I did ask about negative biopsies so he took great pains drawing a diagram explaining it was huge - 2cm long and thoroughly examined and gold standard test. He does seam very eminent but don't know if he's had any GCA patients.

[Hidden in reply to Marlenec]

🤭... Meant the oh no emoji.... But even if I edit it out you get it.

[PMRpro Ambassador in reply to Marlenec]

Still doesn't mean they would definitely catch the giant cells ...

[Grammy80 in reply to Marlenec]

Do you think he is too puffed about himself to admit he doesn't know something? Anxious to see what/if anything, the scan shows and what he says then. Sure thinking of you~!!

[SheffieldJane]

What a worry Marlenec!

I am awaiting my Rheumatologist’s opinion on possible large cell Arteritis in my under arm area. I feel pretty viral.Previously, I experienced different BP results in each arm. The following scan of my Aorta was fine about 2 years ago.

Your consultant seems to be constructing a symptom scenario to explain away GCA symptoms. I wonder why? I also wonder why an improvement at 40 mgs wasn’t seen as more significant?

I hope this puzzle is unravelled in a comprehensive way. X

[Hidden in reply to SheffieldJane]

I was hoping you were awake as I rembered you having your BP different in each arm.

[Marlenec in reply to SheffieldJane]

Thank you for your reply Jane. I told him that some people on here had taken more than 2 weeks to get rid of symptoms but he said then they could not have GCA and I should tell them. Yes well that would go down well!

I get a very bad ache left side of spine, and both upper arms ache and now losing strength, especially right arm, but also now have osteoarthritis in shoulder joints so pain caused by anything!

Hope you don't have large cell - yet another one to add to your list.

Take care 🌺

[Poppy1647 in reply to Marlenec]

Its funny though, most of my symptoms went at 3 weeks at 60mg. I still had fatigue & muscle pain , so my rheumatologist thinks I dont have GCA so now waiting for my Petscan results! I do not know why they expect people to respond the same to treatment. Goodluck, hope they get to the bottom of whats causing your symptoms.

[Marlenec in reply to Poppy1647]

Thank you for your reply. Yes he said I should be feeling absolutely euphoric after even 2 days! Hope your petscan gives you clear results and have the right treatment. Keep us updated. Take care.

[Devoid in reply to Marlenec]

Hi I had a negative biopsy, some symptoms improved on 40 steroids but still felt awful and added lots of pred side effects.ct pet scan showed inflammation in all main arteries, which took months to get under control. I know lots of people feel great after a couple of days of pred but I also know I’m not the only one who hasn’t, yet the diagnosis is vasculitis. Hope this helps and don’t buckle under experts pressure. From my own experience I think they would know more if they actually listened, that’s why they say no it can’t be! Because they have ignored what patients are telling them!!!

[Marlenec in reply to Devoid]

Hi Devoid thank you so much for your reply. I'm sorry to hear you have vasculitis and it's taken a long time to get under control. Yes I'm sure some just pick up on things they want to hear. When he said migraine I told him this was totally different, I had a couple of attacks in my twenties but nothing since. In his letter to my GP he said I have history of migraine and lie in dark room - that was a couple of times 50 years ago.

Good luck with everything. Take care.

[SheffieldJane in reply to Marlenec]

Thank you Marlenec - beams of positive energy and hugs. ♥️🌈

[Marlenec in reply to SheffieldJane]

Thank you Jane and lots more back 🙅

[PMRpro Ambassador]

There really are some non-sequitors there!!! He has a possible halo-sign and negative TAB but chooses to believe the tab. It isn't GCA because it didn't respond well enough to 60mg - which is why some patients require as much as 80 or even 100mg to get a good result inititally. And really - what is the point of allowing inflammation to develop in the early morning? Taking enteric coated pred before bed means it is available at 4am - I can see the point of taking plain pred early morning so it is high at the same time as the inflammation but enteric coated can take from 4 to 8 hours to get to a peak.

How much difference is there in the BP readings in the two arms? That can be a sign of subclavian steal syndrome - a differential diagnosis for GCA in some cases. But it doesn't cause systemic symptoms.

[Marlenec in reply to PMRpro]

Thank you very much for your reply. In fact I took 10mg Pred at bedtime last night and the other 10mg this morning. I felt much better as soon as I got up and so far today it's been my best day!

Sorry for not replying earlier, I'm waiting for Consultant's sec to let me know blood pressures, if scan report back and if I have an appointment yet. I only know one bp that was right - 140/80, left - 133/66. I have never had any problems with blood pressures - always middle of normal.

[Marlenec in reply to PMRpro]

I've not heard from the secretary. It's always answerphone saying out of office, I've left messages- but nothing. Will try again Monday. Don't want you to think I'm not bothering. Thank you.

[Rugger]

Oh Marlene, it seems unbelievable that you should have a variety of conditions develop all at once instead of just one! The others have said it all. We don't want you to have GCA, but have you thought about asking for a second opinion?

I hope you soon get a satisfactory explanation for everything.

[Marlenec in reply to Rugger]

I hope MRA brain scan report shows up something or other. Don't really care what just want to get on with it, and sort myself out!! Dr Barr has put in his letter to my GP "patient reading versusarthritis" . I read lots more as well including lots of super info on here but not told him - he'd be able to write a long list!

Thanks.

Take care.

[tangocharlie]

Sorry to hear about your struggles to get to the bottom of what's going on. Was your appointment with the Consultant a 'second opinion' or your original consultant? You have a right to ask for a second opinion so what about asking for Dr Mackie or even Dr Dasgupta? It's tough taking such high doses of Pred - I was like a zombie on 40mg when I had my GCA scare at Christmas (luckily it wasn't). Keep going x

[Marlenec in reply to tangocharlie]

Dr. Barr is my first Consultant. Waiting for my MRA report and take it from there. Thanks.

[Grammy80]

I'm so sorry that you are going through this....I am not a long-timer with the knowledge of many of the members. But...I DO know for a fact you can have a negative biopsy and have GCA. A dear friend had such an experience 11 years ago...but had GCA..and still takes 1 mg of prednisone to this day. Good thoughts your way~~~

[Marlenec in reply to Grammy80]

Thank you for your reply Grammy80. Although false negatives are documented my rhuematologist won't accept it. I'm awaiting report from my MRA brain scan, so hopefully that will help.

Thank you for your kind thoughts and l hope your friend keeps safe and well on 1mg.

[Hidden in reply to Marlenec]

Rather than hoping the universe makes him walk a mile in your shoes... Which is a ndgative. I will ask that the universe gives him a learning experience that will help him. I am not a woo woo but life lessons are important for docs!

[Grammy80 in reply to Marlenec]

We pull for eachother....we are all pulling for you~!💗

[Marlenec in reply to Grammy80]

Thank you Grammy80 you are so kind 😇🌹

[Marlenec]

I totally agree! Many thanks.