What Question(s) do You Wish You Had Asked Your R... - PMRGCAuk

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What Question(s) do You Wish You Had Asked Your Rheumatologist at the First Appointment?

SomersetWife
SomersetWife

I have my first Rheumatologist appointment on Wednesday re my preliminary diagnosis of GCA - (That will be day 15 of starting Pred). An artery biopsy has been requested and I hope to find out today, when that might be. I have kept a note of symptoms from the outset but want to be sure I ask all the right questions. I really don’t want to be on Omeprazole and really, really don’t want to be on Alendronic Acid but accept that on high dose Pred with pre-existing Osteoporosis, this may be necessary in the short-term. Have you found your Rheumatologist open to working with you, or have they been more rigid in outlook and adherence to the treatment protocol?

54 Replies
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I am lucky in having an empowering, engaged, interested, curious and caring Rheumatologist. I fear that she’s rare.

My first question for your Rheumatologist would be to question the value of a temporal biopsy when it is likely that 15 days of Prednisalone will have obscured the evidence. Symptoms rule in diagnosis.

I would ask for a Dexa Scan before considering Alendronic Acid or similar. Your bone density may well be fine, mine was.

Throughout 4 years of steroid treatment I found yoghurt to be sufficient to protect my stomach and Entric Coated Prednisalone, even better.

I would also want to explore her/his view on tapering steroids and whether they are familiar with dead slow nearly stop and similar forms of gradual tapering. So many Rheumatologist try to rush this essential part of the process.

That should be plenty initially, your notes will demonstrate that you want to be involved in your treatment. Good luck!

Thank you - that's so helpful - regarding the Alendronic acid, my Dexa scan March 2018 showed Lumber spine T score -3.3 and Z score -1.8 (Osteoporosis) Femoral Neck T score -1.6 and Z score -0.3 (Osteopenia) Total Hip T score 0 and Z score 1.0 (Normal) - so my GP put me straight on Alendronic Acid because of having to go on 60mg Pred - I have had Osteoporosis at least since 2007 (first DEXA scan) but levels have remained pretty constant. Any input you have would be gratefully received, thanks again

Ssratha
Ssratha in reply to SomersetWife

I had mild osteoporosis when i was diagnosed with gca. I havent taken the bone med or the stomach one. I took homeopathics for osteoporosis for 2 years and will have bone scan soon. Fingers crosswd. I'll let you know the outcome. No. Problems with stomach

SomersetWife
SomersetWife in reply to Ssratha

Thank you, I look forward to hearing how you get on with the bone scan - all good, I hope

I wish I knew to press them harder about the validity of the biopsy result, after taking Pred especially. However, I would have needed the knowledge first to have known the facts from the flannel. It was negative for me but it didn’t change the treatment because my symptoms and response to Pred were too compelling to ignore. The biopsy is quite invasive, and more like a minor op and should be done by a maxillofacial surgeon.

Ask for a copy of the protocol and guidelines they are using.

I didn’t have any working relationship because a) I had huge gaps in between appointments, for example 7 months between 60mg start and next appointment, b) I never saw an actual consultant until I was on 4mg, only registrars on rotation and c) I didn’t see the same doctor twice until I was well below 10mg. In many ways this worked out well because I was able to do my own thing backed up with this forum and reading resources recommended here. Each appointment necessitated having enough information to fend off whatever was the opinion (rarely factual) du jour. I got told off most of the time but in the end I had had no relapses, no weight gain, no diabetes and by the time I’d got to below 4mg the doc wrote down my schedule for reference. The bone situation remains to be seen on the next DEXA scan if I get one. This is all at a regional “centre of excellence”.

I couldn’t get on with Omeprazole so said to my GP that enteric coated was the same price as uncoated Pred plus Omeprazole.

Do ask for a DEXA as a baseline if you’ve not have one in a while, so you know if the Pred actually worsens the osteoporosis later or if it has actually deteriorated since your last one.

This may all seem a bit negative but I’m trying to say that informing yourself is essential for most people and if you have medical continuity with a competent and compassionate doc that’s brilliant.

SomersetWife
SomersetWife in reply to SnazzyD

Thank you - please see my reply to SheffieldJane above - I did ask my GP if I could have another DEXA scan and she said not until I have been taking the Alendronic Acid for some time - I will put this on my list for the Rheumatologist - thank you for your help - and well done for 'sticking to your guns' we know our bodies far better than anyone else!

SnazzyD
SnazzyD in reply to SomersetWife

My issue with that is that you have no idea if the Pred is making it worse even with AA and it assumes that AA is 100% effective and doesn’t cause microfractures ever.

On the subject of scans I was given a PET CT to check for large vessel involvement. This occurred after having taken Pred and since then the negative result has been deemed useless by every doc once I’ve reminded them of this fact. Research has found that asymptomatic large vessel vasculitis is more common in patients in remission and feeling well than was thought. Now at the other end of the Pred scale I asked for one for this reason but they don’t want to do it because of the level of radioactivity I’d had already so would rather I had symptoms in order to do it. At the time the radiographers questioned why I was still on Pred but did it anyway because that was what the doctor had ordered. 🙄

PMRpro
PMRproAmbassador in reply to SnazzyD

Dejaco said to me this morning it isn't clear how much effect the pred has on the PET result and that no single entity is really adequate. Shame he had other patients - could have discussed it for a lot longer!

My GP thinks I take the AA I get on prescription, but I don't. I want to see if my bones have deteriorated without by the time I gave my next Dexa scan, which I shall pay for if necessary. I had to beg for the first.

YuliK
YuliK in reply to SnazzyD

Dear Somerset wife

My Rheumatologist sent me for an ultrasound first and then a CTA to check the arteries...

This below👇may help you

hopkinsmedicine.org/health/...

computed-tomography-angiography-cta.

Good luck with your Rheumatologist.

Keep us informed please.

YuliK 😷

SomersetWife
SomersetWife in reply to YuliK

Thank you - I don't think those procedures are available at my local hospital though :-(

Ssratha
Ssratha in reply to SnazzyD

Yes re biopsy. I have been left with two swellings next to each biopsy which have never gone away. Fluid it would seem to me. No doctor has been able to explain why what etc happened from biopsy to cause them

SnazzyD
SnazzyD in reply to Ssratha

How close to the wounds are the swellings? Are they are the end of the line or along the length.

Ssratha
Ssratha in reply to SnazzyD

Hi, they are Between the Biopsy site and the eye snazzyd. Closer to thehairline.

SnazzyD
SnazzyD in reply to Ssratha

Difficult without being able to see. Are they the same on each side. Sometimes with dissolving stitches the knot doesn’t dissolve and a lump can be felt, but this does sound like the right location.

Ssratha
Ssratha in reply to SnazzyD

I dont think thats what it is snazzyd, its more a disc as big as a 20 cent {australian coin} piece, like a patch of oedema, its palpable and slightly risen, beteen eye and the biopsy site, which was in hairline at its bottom point near ear. Hmmm does that all make sense?

SnazzyD
SnazzyD in reply to Ssratha

Could be a lymph node raised in response to the surgery. See this pic to see if it is about the same place

medicalnewstoday.com/articl...

Ssratha
Ssratha in reply to SnazzyD

Yes the preauricular node would seem to be the spot. Interesting.

There are other drugs than AA. Go to the Royal National Osteoporosis site and read up on them all. There is one which you take yearly. Most people opt for that one. Just stand your ground. It is your body and your decision taking into account facts.

Also as for a full spectrum blood test, which includes minerals etc and not just the standard one. Then you have a baseline to work from.

The biopsy is useless once you have taken high dose pred for 5 days.

ncbi.nlm.nih.gov/pmc/articl... Use of Ultrasound in Diagnosis of GCA. Not all hospitals have the facility and I am unsure if it works after taking high doses of pred. Read up and ask the question.

SnazzyD
SnazzyD in reply to jinasc

Unfortunately there seems to be a wide variation on the biopsy window. I’ve been told a range from 4 days of Pred is too much to up to 6 weeks ok.

SomersetWife
SomersetWife in reply to SnazzyD

Please see my update on my post - I'll have to see what the consultant says

Ssratha
Ssratha in reply to SnazzyD

I was told on 80mg the biopsy had to be taken in 24hrs of taking the med.

SomersetWife
SomersetWife in reply to jinasc

Thank you, I will read but as mentioned, I don't think ultrasound is an option available to me. Always good to go armed with all the facts!

YuliK
YuliK in reply to jinasc

I think it does work...

a month before I had the ultrasound I lost the hearing in my left ear. My audio neurologist injected directly through my eardrum cortisone. ( now I have a perforated ear drum).

Bit of a nuisance having a shower, as water shouldn’t enter the ear...

Losing my hearing was thought to be PMR or GCA associated.

Now we are in the middle of this darn Covid19 so everything has been put on hold for me.

Bottom line, try and ask for ultrasound of the cranial area.

YuliK 😷

🌹🌹🌹🌹🌹

PMRpro
PMRproAmbassador in reply to YuliK

u/s must be of the temporal artery specifically, not the cranial area in general as u/s doesn't pass through the skull. But once the patient is on high dose steroids for any length of time the reliability reduces relatively quickly.

YuliK
YuliK in reply to PMRpro

Yes PMR pro, you are correct. My mistake, I also had a MRI.

Bit of brain fog kicking in. I had so many tests around that time, that it’s so confusing.

Keep safe. 🙏

YuliK 😷

🌹🌹🌹🌹🌹

I wish I had asked and this been forewarned about the difficulties of coming off Pred and how they plan to help you manage that!

Thank you - yes from what has been said here, it sounds as though coming off the steroids can be fraught with problems - I'll have to ask about what their protocol for this is - but then I'm sure everyone is different and it would not be possible to have a 'one size fits all' approach.

Rugger
Rugger in reply to SomersetWife

Quite right. We can only "come off the steroids" when the disease is in remission for each of us and that will be when the time is right.....

UPDATE: Have spoken to GP secretary this morning. She assured me Rheumatology appointment was for Biopsy. I asked her to check because that's not what the letter said - she did, and it wasn't, it is just a consultation! No Biopsy has been booked (allegedly due to staff shortage). I may get an appointment for Monday or Tuesday but, it doesn't sound likely. I feel reluctant to undergo a procedure which is pretty likely to produce a negative result - so will just have to see what Wednesday's appointment brings - I'm feeling a bit stressed now tbh!

Hidden
Hidden in reply to SomersetWife

Hi I sympathise with you as 8 weeks ago I started a similar journey. I am no advocate of the NHS system per se, having worked in it for a while. Only this morning I have had to coordinate and chase up an MRI: I won’t go into the details, but for the second time this week I have been doing what my consultant or one of his staff should do and my GP is more evasive than a sniper on a covert operation.

The challenge for us patients is that we have no choice but to go with the flow - they do the referrals, they sign the prescriptions. By all means leap off the boat if you are unhappy, but my advice to anyone, be it about investigations, drug therapy etc is to state your case, listen to the response and if you are unhappy complain long and hard. At the end of the day, our clinicians whilst responsible for our care are answerable to a different body and if you are unhappy, pursue that body through to the health service ombudsman. Generally opting out of the treatment recommended might not be the best decision and you may regret it.

I wish you well, it is very frustrating and at the end of a very frustrating week myself, trying to organise a blood test and a Long overdue MRI; which being urgent should have been done by now, believe me I am so frustrated, particularly as they are no longer 99% certain that I have GCA.

Don’t fight the system, go with it and challenge when you get the chance.

SomersetWife
SomersetWife in reply to Hidden

Thank you for your advice and I'm so sorry to hear about your current problems. May I ask if they have given you any idea what they think it might be if not GCA? Hope you manage to get MRI, etc. sorted.

Hidden
Hidden in reply to SomersetWife

Hi and thanks. They have absolutely no idea now what my disease is and after taking 120mg of prednisilone initially, which did stop the symptoms, I now find that other investigations might mask any other conditions or disease. I am not overly concerned, I was in considerable pain, my symptoms resembled sinusitis initially and subsequently GCA was diagnosed and the steroids did prevent irreversible damage to my eye sight. So no complaints there, the treatment was appropriate and necessary - GCA can be easy to diagnose then difficult to prove in some of us: I had symptoms of PR too.

My problem now is that with reducing steroids the symptoms are returning, mainly pain as opposed to eye issues. Which is leading the consultant away from 99% certainty of GCA. I have faith in my consultant, but the frustration for me is how they interact with other health professionals and access to diagnostics. My GP practice have always been aloof in our market town, even with other GP’s in the area. It isn’t just me who feels that they have to genuflect every time we visit: which for me is rarely. There is an old adage “what is the difference between God and a GP” the answer “God doesn’t think he/she is a GP”.

I have got the MRI sorted, spoke to X-ray and I suspect my urgent referral from 14th August got lost. I have been referred to a private hospital for an urgent appointment on Tuesday. I suppose my point is, both my GP and consultant have left me to do the running, both with Ophthalmology, rheumatology, radiography, bloods - I won’t go into detail, but my initial call to ophthalmology resulted in me being asked “why are you calling us”? they were amazed when I said “my GP told me to”. My stock answer afterwards when faced with he same in rheumatology et al “don’t shoot the messenger”

I have persevered out of obvious self interest, no way questioning clinical competence, it is everything in between. So this week bloods and MRI - GP does not respond when asked for advice, consultant responds with make appointments yourself. I worked in the NHS, understand the system, my worry is how would someone 20 years older, living on their own cope? It is on that basis, my advice to anyone is do what they say, reasonably challenge as necessary, but stay on board and if you are not happy complain.

That would be my advice to you regarding the biopsy. Mine came back negative, it was painless, clinically necessary and removed another

Element of trying to obtain an accurate diagnosis.

SomersetWife
SomersetWife in reply to Hidden

I feel exactly as you do about those who will 'fall through the cracks' of the system because they do not have the capability, either through age, infirmity, lack of knowledge of technology and many more possible hindrances to getting to the right person for the right treatment, at the right time. As a former PA, I am pretty good on the phone and good at getting people 'on-side' I wish you well with your MRI and hope that you will soon have a definitive diagnosis. All the best.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

Why the query on GCA diagnosis - and have they offered an alternative?

Hidden
Hidden in reply to DorsetLady

I believe that my current dose of steroids, although reduced are still high and that he symptoms I have should not be there after 8+ weeks. The rheumatologist wishes to determine inflammatory markers and after initially requesting an urgent MRI has not pursued it with he vigour I expected. Hence an email exchange earlier today. He told me to contact x-ray and find out; his secretary is working but she must be very busy. I have done and perhaps the MRI will reveal more.

Obviously I have some concerns, GCA is bad enough! I do have to be pragmatic though. My frustration as in my previous comment, I know the system, am competent and assertive, without being aggressive and worry about others who are not as confident or capable. Hence my advice is always to follow their advice and challenge appropriately and if still unhappy complain.

Tuesday. MRI, Thursday bloods and should know

more in the coming few days. As it is, your guess is as good as mine.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

okay, well please let us know when you know...and obviously good luck.

Hidden
Hidden in reply to DorsetLady

Thank you. I may get black balled and chucked out of the group for being an imposter!

So frustrating and as my GP hasn’t answered my question of what might be the alternatives I have decided that I must be her bet noir.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

Some of us were given broad shoulders for a reason - I'll still pop in one day even if you are an imposter!

Hidden
Hidden in reply to DorsetLady

Delighted to meet up. I know that you will give me notice. Three med appts next week. Visit on a nice day and we can sit in the garden and have a cup of whatever and a slice of cake :-)

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

Will do!

SomersetWife
SomersetWife in reply to Hidden

keep us posted - hope it gets sorted very soon

RoadTrip
RoadTrip in reply to Hidden

Best of luck with the tests.

Telian
Telian in reply to SomersetWife

Hi, I had a positive US - started pred the same day which worked like a miracle- 4 days later had a negative TAB. That was 6.5 years ago.

I know US isn’t readily available everywhere but would raise the question of its viability at your next appointment.

SomersetWife
SomersetWife in reply to Telian

I'm pretty sure US is not available to me in my area but I will be sure to ask. Thank you - hope you are well.

Telian
Telian in reply to SomersetWife

Think you know what I meant to say -,the viability of having a TAB at this stage.

I’d like to feel better, thank you, in the meantime doing what I need to do. It’s a long haul.

Hope you have a positive consultation next week.

Telian
Telian in reply to Telian

Forgot to say, let us know how you get on.

SomersetWife
SomersetWife in reply to Telian

Thank you, will do

Ask for a bone scan. Your doctor will authorise it if it is mentioned by the Consultant. I’m going to try this as my doctor seems to ration all tests. Also ask about the duration. If the answer is ‘up to two years’ then the consultant is not up to date.

Thank you, added to my list!

PMRpro
PMRproAmbassador in reply to SomersetWife

Dexascan for bone density - not really bone scan, they suggest and measure different things.

RoadTrip
RoadTrip in reply to PMRpro

Thought they were the same thing! I will need to investigate further, as have asked for bone density scan before considering AA.

PMRpro
PMRproAmbassador in reply to RoadTrip

Yes - a bone density scan is a dexascan. But in general terms in radiology, just requesting a bone scan is a radioisotope scan where you have a radioactive tracer injected/infused and then a CT scan to detect cancers or other serious bone conditions. There are some non-specialist doctors who appear to not understand the difference.

RoadTrip
RoadTrip in reply to PMRpro

Thanks for the info. definitely only want the DEXAscan.👍

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