New Here and in USA

[MrshowardII]

I was diagnosed with Giant Cell Arteritis in November 2017 while hospitalized for a stroke (which in my opinion was caused by GCA although doctors do not concur). Had bi-lateral temporal biopsy confirming GCA on right side. Was on 80mg Prednisone for approximately 3 weeks. On my 12/6 visit to rheumatologist assigned to me in hospital, he began to taper Prednisone. I am now at 20mg and will go to 15mg in 2 days for two weeks. I have some stiffness in lower jaw which I reported to Rheumatologist and he told me to see my dentist to see if there is an infection in jaw. My question is whether the stiffness is a post stroke symptom or flare of GCA. I find it so interesting that there is so much info and interest in GCA in the UK and virtually none in the United States. My heritage is 1/2 British and 1/2 Welsh.

[HeronNS]

When UK and Europe wake up you'll get lots of good replies. My first reaction is shock that you were only diagnosed two or three months ago and are already expected to be tapering down to 15 mg. For GCA this seems incredibly fast. Have a look at this paper. Just past halfway there is a table for recommended tapering for GCA and you can see that you should probably still be at about 40 or certainly no less than 30. Your body needs time to clear out the severe inflammation of GCA. As you have already suffered a stroke it seems it would be even more important for your doctors to be very careful and conservative with your treatment.

rcpe.ac.uk/sites/default/fi...

Best wishes

[Hidden in reply to HeronNS]

Me too! I could not successfully go from 60 to 45 without a "meltdown." Wow... November to January

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Totally with HeronNS on the speed of tapering. And you could well be correct in your supposition that GCA caused your stroke, really depends how long your GCA had been brewing. Would also hazard a guess that the jaw problem may well be GCA related rather than an infection - and your Rheumy should know that! But get the dentist to check anyway.

I also started at 80mg with my GCA, but it took me about 6 months to get to 20mg not 2 months!

Have you been having regular blood tests before each reduction? What other medication are you on?

The major problem with such fast reductions is that you don’t stay at any one dose long enough to ensure that level is controlling the inflammation before you reduce again. Which very often leads to you having a flare.

With GCA in particular it can take 6 months to get all inflammation controlled, so it’s really not very clever to reduce too quickly.

For your info this was my taper from 80mg to 20mg - might be interesting for you to compare -

Start dose April 2012

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

Then 17.5mg for 4 weeks, 15mg for 6 weeks.

You can definitely blame the British/Welsh heritage🤨

Take care

[Hidden in reply to DorsetLady]

This was very helpful, thank you!

[CT-5012]

Hi and welcome to the club no one volunteered to join. Agree with HeronNS and Dorset Lady tapering much too quickly. I have both GCA and PMR and had a flare last summer at 15mg stiffness in my jaw was the first thing that happened pred increased to 30mg am now back to 10mg after six months. Your ancestors have probably given you this problem illness, my brother also has PMR and GCA we have eight kids between us - six of whom have an auto immune disease of some kind. We blame the Vikings!

I hope you have been given information about what to do if you experience any problems with your vision.

All good wishes. 🙂

[SnazzyD]

Hello,

Just for comparison, mine was a bit different to DL’s but still snail’s pace compared to your express train. I quickly went from 60 to 40mg but stayed there for 6 weeks. I am sure I needed that time because I could feel GCA lurking in my temples at the slightest excuse throughout that time.

I didn’t get to 20 for another two months. I’ve been doing about 2mg per month since then and 10 months in am on 10.5mg, now feeling very cautious indeed. None of this was prescribed tapering and I have to fight my case when I see the docs who eventually just leave me to it. Got to do it again tomorrow.

[micheleinnaples]

I agree with DorsetLady. I believe the jaw symptoms are GCA related. This is how mine started and I am in the "maze" of trying to get a FINAL GCA diagnosis. I completely agree with your thoughts regarding the plentiful resources from UK! I live in the states and find the lack of knowledge in the autoimmune world absolutely appalling.

[PMRpro Ambassador]

Well - your doctors may not concur but I think you are very likely to be quite correct. There is an increased risk of having a cardiovascular event in the first year after diagnosis of GCA and there are cases of fatal stroke where GCA was found at post mortem.

Your rheumatologist seems to have not a lot of common sense - nor to know much about GCA: he's reducing like a rocket and the patient has jaw pain but he tells them to go to the dentist? I've heard it all now!

[Insight329 in reply to PMRpro]

He's getting initials mixed up. Instead of thinking GCA, he's thinking TMJ. Idiot. (Oops, I shouldn't have said that.)

[MrshowardII]

Thank you all for your responses. You are very kind and so knowledgeable regarding GCA. I have decided not to drag my dentist into this mess at the request of a Rheumatologist who I have little or no confidence in. Instead, I have made an appointment with my family doctor for tomorrow afternoon (at least he is somewhat familiar with my case...and I do mean "somewhat". Have not seen him since 2 days before my stroke when he diagnosed me with "trigeminal neuralgia" (never mentioned GCA) during office visit. I saw his Physician's Assistant once since home from hospial and had two appointments canceled by Doctor since then. I will be seeing PA tomorrow so I don't know how successful my visit will be. Please judge for yourself the quality of health care available in the city in which I live.

My post stroke problems all involve issues with my face and head...swollen eyes and cheeks, blocked sinuses, tight and cracking jaw, slight intermittent headaches,etc. If it were not for these mysterious nuisances, I would feel pretty good. I'm seeking answers from doctors in the US and not getting any. Very distressing...I wish I lived in the UK.

[HeronNS in reply to MrshowardII]

You have a definite diagnosis of GCA because at least you got a timely biopsy. This fact should really be on your side when you speak with your doctor or his assistant. There is no denying this fact. Have you had a chance to read up a bit about the appropriate tapering schedules for GCA?

If you go to the Patient site, (perhaps you are already a member?) you will find a page with a list of resources. If you have a clear idea about what you think should be the right way to proceed, approaching your PA or GP with the question "what do you think of this" tends to enlist him/her on your side in investigating the best way to manage your serious condition, hopefully not putting him on the defensive.

patient.info/forums/discuss...

When I got my diagnosis of PMR one thing I did was go to my ophthalmologist for a thorough eye exam (I had no serious symptoms of GCA but in retrospect I think I had some minor signs). He gave me the all clear after a careful examination but in the course of the appointment gave me far more information about prednisone and GCA than my doctor ever had. He emphasized that GCA was a medical emergency akin to a stroke or heart attack. Even if your doctor is embarrassed or ashamed that he fumbled your initial diagnosis (as well he should be) it's time to move on and give you, his patient, the best care possible.

Good luck! 🍀

[PMRpro Ambassador in reply to MrshowardII]

Trigeminal neuraligia is a reasonable confusion - but nevertheless...

In view of your other symptoms, it does make me wonder about the possibility of you having another sort of vasculitis and I have just googled "Wegeners temporal artery biopsy". The search results which come up show that it is possible for patients with Wegeners (which affects the sinuses) to have positive temporal artery biopsies.

I don't know where you are in the USA - is there a Mayo clinic within reach?

[Amkoffee]

I also have PMR and I also live in the US. As you said it is remarkable how little American doctors know about PMR compared to doctors in the UK. That is one of the reasons why I like this site. There's also a place called patience. patients.com that is equally informative.

[MrshowardII]

Update on Doctor visit 1/11/18. My family doctor's PA sent me for Sed Rate blood tests and a Sinus x-ray yesterday afternoon. She called and said Sed Rate elevated and she faxed the results to the Rheumatologist telling me he may want to bump up the Prednisone dosage. I have been tapered down to 15mg as of yesterday. Rheumatologist's nurse called me back and told me to go up to 40mg Prednisone and see how I feel by Monday. Of course my question is why couldn't the Rheumatologist have handled the whole matter himself and eliminated the middle man....but what do I know!!!!

I have a question - has anyone else experienced this symptom when withdrawing from Prednisone? With the most minimal exertion, I have been gasping for breath...just getting dressed brings it on. It's quite frightening. I appreciate any insight.

[PMRpro Ambassador in reply to MrshowardII]

Pred itself can cause breathlessness. But if you have GCA you have a serious systemic illness - like real flu. Any effort can make you breathless.

Sounds as if your rheumy has finally caught up a bit...

[MrshowardII]

Yes that does seem to be the case. I am feeling a bit better on Day 2 of 40 mg Prednisone. I'm not going to agree to any tapering until i see him in person on Feb. 7th. Thanks.

[PMRpro Ambassador in reply to MrshowardII]

Three weeks of 40mg is about right - and REST!!!!!