GCA update from California: I had a consult with... - PMRGCAuk

PMRGCAuk

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GCA update from California

Anniegal
Anniegal

I had a consult with new rheumatologist. He agrees to skip arterial biopsies and based on recent placement of stent for 96% Left Descending Artery blockage; headaches and eye pain and long history of undiagnosed PMR that I should be at 60 mg of prednisone and then after 2 weeks will taper back to 40 based on symptoms. He had a full x-ray series of my neck and back done and multiple blood tests as well.

I asked about monitoring temporal arteries by ultrasound. I would have to travel 250-400 miles roundtrip or more to find a technician with adequate experience. He ordered cat scan of my cardiac arteries. I cannot do mri as it might dislodge the new metal drug coated stent. His concern is my heart and stroke as well as my vision.

This amazing doctor spent 90 minutes with me.

Reviewed the prednisone issues and wants to rule out any other auto immune issues.

33 Replies
oldestnewest

Very interesting. Thank you for the update. Do let us know how you get on as your treatment proceeds. Best wishes.

Anniegal
Anniegal in reply to HeronNS

😊 Thank you!

Congratulations on finding a good rheumy who carefully diagnosed your complicated case including doing a CT angiogram.

re: 96% left descending artery blockage. Was this stenosis caused by the GCA? or was it caused by artherosclerosis? Here's an up to date GCA link:

uptodate.com/contents/treat...

Treatment of giant cell arteritis

Author:William P Docken, MDSection Editors:Jonathan Trobe, MDEric L Matteson, MD, MPHDeputy Editor:Monica Ramirez Curtis, MD, MPH

Contributor Disclosures

All topics are updated as new evidence becomes available and our peer review process is complete.

Literature review current through: May 2019. | This topic last updated: Aug 13, 2018.

Best Wishes

Anniegal
Anniegal in reply to gifford7

Thank you for this most valuable GCA link. I started at rheumy’s suggested 30 mg x 2 today to achieve dose of 60 mg prednisone daily. Looks like the recommendation is 60 mg single dosing so I will implement that.

I am also on brilinta, an anti-coagulant because of stent. The bruising is astonishing. Next they will want to address the coming attractions of prednisone induced diabetes, osteoporosis and BP control as mine is now 154/90.

Trying to wrap my head around all this.

PMRpro
PMRproAmbassador in reply to Anniegal

Steroid induced diabetes can be managed to a great extent by cutting carbs drastically - several on the forum have taken their Hba1c levels out of almost diabetic back to normal just by doing that.

Anniegal
Anniegal in reply to PMRpro

Doing all that but the mandates protocol for GCA may make my Hba1c problematic.

PMRpro
PMRproAmbassador in reply to Anniegal

Pardon? Sorry - not au fait with your system.

Anniegal
Anniegal in reply to PMRpro

The GCA protocol is 60 mg prednisone for two weeks, then reduce every two weeks by 10 down to 20 and then titrate as tolerated. At 40 mg my Hba1c was at 6.3... despite strict keto diet. I am anticipating my blood sugar is going to increase 🥴 My fasting bs went from 97 to 106 as soon as I was on daily prednisone. Lots yet to sort out.

PMRpro
PMRproAmbassador in reply to Anniegal

You are still only pre-diabetic at 6.3% - because of that strict keto diet probably. And it should improve as the dose reduces. My husband's fasting BS is about that - no-one here worries about it, no other problems to go with it, and they just say some people have a consistently raised level. That obviously isn't the case for you but it isn't a major rise. However, the fasting BS isn't accurate in pred-induced diabetes: the liver is triggered by the pred to release random spikes of glucose into the blood which there is no way of managing or preventing. All you can really do is try to remove the other contributors to the level - which you are doing pretty well so far I'd have said.

Anniegal
Anniegal in reply to PMRpro

Thanks for the reassurance. It means everything.

Anniegal
Anniegal in reply to Anniegal

Still awaiting next appt with cardiologist re cardiac causation.

PMRpro
PMRproAmbassador

I think the vast majority of patients find the symptom relief is as good a monitor as any - after all, the GCA may not be affecting that bit of artery so monitoring with u/s could possibly just show unaffected artery!

Anniegal
Anniegal in reply to PMRpro

Thanks for this! My thought is to monitor how I respond to prednisone, journal pain, nutrition, activity levels and stress. The biggest challenge is the impact of prednisone combined with the anti-coagulant. The bleed risks are quite concerning. I will be curious to see status of CT of aorta and arteries. Family history of aortic valve issues.. fun times!

PMRpro
PMRproAmbassador in reply to Anniegal

It is a high dose you are on - I have only been on 15mg but I seem to be one of the very few who doesn't bruise with pred! Pred plus Pradaxa has been fine for me.

Most of the NOACs can be measured in blood - if I were worried I'd ask if it can be checked. My husband was on another and when he started bleeding as a late consequence of radiotherapy it was discovered the blood level was 10 times what it should be! So he chose to go back to Warfarin! It has also been established that the bleeding risk with the one he was on could be reduced by about 20% if they checked the blood level and adjusted the dose - but that means having checks, which messes up their USP to justify the price.

Anniegal
Anniegal in reply to PMRpro

Thanks for this. I believe they will draw labs at my next appointment. I had some drawn earlier this week.

It sounds like you are in good thorough hands. Keep us posted!

Thinking about whether wisest to split dose (60 mg prednisone) vs one a day dosing? Anyone with experience at that level. Day 2: headache and eye pain noticeably decreasing.

PMRpro
PMRproAmbassador in reply to Anniegal

The received wisdom is that GCA doses should be 1x daily. However, if there is a return of symptoms significantly before the next dose is due, some experts say split the dose since a study showed it made little difference whether it was 1x or 2x daily providing the total dose was enough to keep the inflamamtion under control.

Anniegal
Anniegal in reply to PMRpro

Thanks - l will try this and see if it makes sleep any easier.

If splitting the pred dose better to bigger split in the am; like 40mg in am and 20mg in pm, for 60mg total.

I have the bleeding problem even at 5mg pred and 40mg aspirin. Originally was also on Plavix now dropped. [antiplatlets because of my stroke]. Am also on atorvastatin 40mg to drop LDL below 70.

Anniegal
Anniegal in reply to gifford7

Your experience is really helpful and I can’t thank you enough for the guidance. I had a thalamic stroke 10 years ago. May I private message you?

gifford7
gifford7 in reply to Anniegal

yes, PM OK

Anniegal
Anniegal in reply to gifford7

l seem to be having trouble sending pm. Will try and see if I do better from my computer than phone.

I wanted to update folks. My A1C is now 5.7. Eating keto and have managed to lose weight ever so slowly. I am currently at 23

mg prednisone having tapered down from 60 and now reducing slower.

I have just had a pet scan with contrast dye as the stent procedure led to a cat scan discovery of a concerning node in my right upper lung two months ago. Was scheduled for needle biopsy and radiation but the pet scan indicates this is most likely benign and auto immune in nature. Due to small size and the fact that l am on anticoagulant for heart stent, they will follow and defer decision about biopsy until December. Needless (no pun intended) it has been stressful!

Pet scan does not seem to show arterial involvement so my GCA dx is based on my reported experience and no clinical results. I continue to have normal labs.

Subclavian ultrasound will be next.

My question for you kind gifford7 is how to get referral to ucsf and do they do ultrasound for gca? My rheum seems to feel there is no reliable ultrasound work being done in USA? Can this be?

PMRpro
PMRproAmbassador in reply to Anniegal

At 22mg pred a PET scan probably wouldn't show any arterial involvement - even 10mg is enough to interfere with results.

I'm fairly sure there have been US patients who have had u/s although as far as I can see the TABUL study was a European one.

Anniegal
Anniegal in reply to PMRpro

Oh my. I didn't realize my prednisone interferred with accuracy of pet scan. My blood sugar control is good. AIC of 5.7 and last fasting blood sugar on lab was 99.

I thought perhaps I was out of the woods. Looks like I am still in the forest. So all I know now is that the nodule has not grown in last sixty days and my cardiologist is suggesting I wait for needle biopsy until I can safely be taking off Plavix in December as the size is small. Meanwhile he wants to look at the subclavian and caratoid arteries for plaque with ultra sound as he is quite sure I have GCA and should be followed and treated as such despite normal c reative protein (2.9) and ESR (11).

I am currently at 23 mg as of a couple of days a go - 60 for a month and then was reduced to 40 and then 30 and then 20 by rheumatologist in two week intervals. I failed the reduction to 20 big time and had my first experience with a flare - and went back to 30 and then down to 25 and now at 23 as I am reluctant to go faster and fail again.

I continue to have soreness if I touch my forehead but otherwise no headache currently, orbital swelling and quite frequent eye hemorrhages - am pain free of PMR symptoms, fatigue is an issue and some tachycardia which may be anxiety from prednisone. or simply dealing with so many unknowns at once. Mentally clear, focused on nutrition and coordinating so many different doctors as each trip is 200 miles roundtrip and they all work for different private practices or hospitals: rheumatologist, ophthalmologist, cardiologist, thoracic surgeon, radiologist and primary.

The possibility of GCA saved my life as this led to biopsy being canceled and a stent being placed in my previously undiagnosed 96% blocked LED in my heart. This led to cat scan with dye that discovered nodule in right lung that is small and difficult to needle biopsy as I am on plavix for new stent. So lots of uncertainty ahead. When I get discouraged, I focus on this and my gratitude for the generosity and empathy of others navigating a path through all this. Six months ago I never could have envisioned all this as I started my PMR journey.

PMRpro
PMRproAmbassador in reply to Anniegal

I doubt there is anything that would show GCA after being on pred for more than a couple of weeks. In the absence of imaging evidence they use symptoms as their basis.

I received your PM and replied. Here is a link to the UCSF Vasculitis Clinic:

ucsfhealth.org/clinics/vasc...

"The UCSF Vasculitis Clinic cares for patients with all forms of systemic vasculitis, including Churg-Strauss syndrome, giant cell and Takayasu's arteritis, granulomatosis with polyangiitis (formerly called Wegener's granulomatosis), microscopic polyangiitis and polyarteritis nodosa." and link to LV-GCA:

academic.oup.com/rheumatolo...

Large-vessel giant cell arteritis: diagnosis, monitoring and management excerpt:

"Advancements in imaging techniques, including magnetic resonance angiography, CT angiography, PET and colour duplex ultrasonography, have led to improvements in the diagnosis of LV-GCA". I don't know if UCSF or Stanford does ultrasound for GCA diagnosis. Link to Stanford GCA expert:

profiles.stanford.edu/corne...

To make an appt at UCSF or Stanford have your GP or rheumy submit a referral request.

re: 'orbital swelling and quite frequent eye hemorrhages'

What does your opthalmologist think this is, a type of eye stroke? see:

healthunlocked.com/pmrgcauk...

GCA Eye Stroke

re: small nodule in right lung, upper lobe?

Why doesn't your pulmonologist do a bronchoscopy to get a tissue sample for biopsy?

A needle biopsy is a last resort when bronchoscopy doesn't work, only gets a few cells,

risks collapsed lung and bleeding. I have lots of experience several years ago; 4x6 cm mass in superior segment right lower lobe 3 bronchoscopys at 4 medical centers and needle biopsy causing collapsed lung. I refused surgical removal of right lower lobe to get a large tissue sample. With watchful waiting it has now shrunk to under 1 cm and no more symptoms [occasional hemoptysis].

re: cardiologist and artery imaging

Can't this be done using CTA [CT angiogram]? [I know your stent precludes using MRA]

ajronline.org/doi/full/10.2...

CT Angiography of the Upper Extremity Arterial System

Anniegal
Anniegal in reply to gifford7

Thank you for your thoughtful and helpful response.

I have no thyroid. Last test showed FT3 was low. Prednisone suppresses TSH thus making thyroid replacement difficult at times.

The swelling around my eyes may be a response to high dose prednisone and low T3. No eye damage shows upon exams. I am also on anticoagulant and this may be contributing to eye bleeds. Many on USA patient group boards anecdotally report similar swelling of the tissue around their eyes as a symptom of high dose prednisone. I am followed closely by my ophthalmologist and local hospital ER dept which is aware of my status. Thyroid med was just adjusted. I should clarify, the bleeding is on the surface of my eyes causing my eye to look bloodshot.

I conferred with a top thoracic surgeon and radiology group. l am not a candidate for a bronchoscopy due to location of nodule. Size is small (13 mm) and on outside edge of upper lobe. Waiting and reassessment in 3 mo seems wisest. Either way, the only viable treatment would be cyber knife radiation. It is in an inoperable location. Due to the risks you mentioned, I am deferring guided needle biopsy.

Your lung situation sounded harrowing. I am glad you had such a good outcome.

Ultrasound will show if carotid and subclavian arteries are blocked with no radiation exposure. Based on findings l imagine a CT might be next. I have uneven bp pulses in my arms so we want to figure out why. I think cardio wants to reserve radiation exposure if possible.

re: PET scan and 13mm lung nodule. I think the PET scan finding that it is probably not cancer is still valid despite 22mg pred. If in doubt check with your cardiologist. I also had a PET scan for my lung mass which showed 85% probability it was not cancer, which helped me decide not to have lobectomy of right lower lobe, losing 25% of lung capacity, despite advice of numerous pulmonologists and thoracic surgeons.

re: cyberknife radiation--I was patient #5 to have that procedure for prostate cancer.

5 days of radiation instead of the usual 40 days. It worked.

re: your various artery problems; stenosis LAD artery, uneven bp in arms

Have your docs considered this may be due to large vessel GCA [LV-GCA]?

uptodate.com/contents/treat...

"LARGE VESSEL GCA

Overall approach — Large vessel giant cell arteritis (GCA) refers to involvement of the aorta and the great vessels, most commonly the subclavian arteries and distally to the axillary and brachial arteries. We initially manage patients with large vessel GCA with glucocorticoid therapy in a manner similar to those with cranial GCA, and likewise utilize glucocorticoid-sparing agents (ie, for patients with an initial high risk of glucocorticoid toxicity, the emergence of glucocorticoid-induced side effects, or relapsing disease)......

Imaging studies have shown that large vessel involvement in GCA is common in patients with cranial arteritis and can be demonstrated in 30 to 80 percent of patients, depending on methodology [56-60]............................

Prospective imaging studies have shown evidence for aortitis in 45 to 65 percent of GCA patients [56,61].........................

Ischemic limb symptoms — Most ischemic limb symptoms improve or stabilize with medical management in GCA. Vasculitic narrowing of large arteries, such as the subclavian artery, is usually gradual and accompanied by the development of an extensive web of collateral vessels (image 1)."

Anniegal
Anniegal in reply to gifford7

I had a cat scan with dye two months ago and that image has been compared to pet scan. In that two month interval there is no size change. The location is problematic. My thoracic surgeon suggested cyber knife radiation because of this but the radiologist didn’t want to radiate unnecessarily thus the pet scan and the decision to follow and possibly needle biopsy if size changes. At 13mm they feel there is time. I was already scheduled for needle biopsy and cyber knife when the pet scan came back and we decided to defer.

My cardio is concerned about GCA-LVA and so am I. Working on referral to UCSF vasculitis clinic.

I have failed every cholesterol drug including pravulent and repatha. Ironically eating keto has lowered my cholesterol. I always got terrible myalgia from cholesterol meds.

My maternal family history is aortic valve failure, aneurysms and early cardiac illness and mortality.

Trying not to give all of this too much free rent in my head...at the same time I find connecting the dots fascinating.Thanks so much for your counsel, insights and articles. Happy to hear of your successful outcomes.

One of my sisters also has GCA [vision loss 1 eye] and PMR, diagnosed in 2010. A heart murmer in 2017 lead to a diagnosis of aortitis; 5.5cm aortic aneurysm and aortic valve with regurgitation. She had open heart surgery in jan 2018 which was successful [replaced valve, replaced bad aortic section]. Her cardiothoracic surgeon said she was within 12 months of a ruptured aorta. That's good you plan to go to the UCSF Vasculitis Clinic for a workup. You have a rare version of a rare disease so need wisdom from university experts in vasculitis.

re: cholesterol drug--I am on 40mg atorvastatin to bring LDL below 70 because of my GCA induced stroke. Also on 40 mg aspirin, any higher causes a bleeding problem. Now down to 4.5 mg pred. No PMR, knock on wood. Also have arrhythmia and take BP drugs.

8 months later.... still eating ketogenic

BP is now 120/70 (was 145/90); fasting blood sugar has gone from 109 to 88. HDL is at 91. Prednisone is now at 12(high was 60).l have lost another 15 pounds for a total of 30. I underwent stereotactic radiation ( 5 sessions) for a stage 1A lung adenocarcinoma. I am having back spasms and facial tingling at 10 mg so plan to go up to 12 for a week and if things calm down, slowly start to titrate again.

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