OMG Moment with GCA!

[Stkeyna]

An OMG moment with GCA!

I have suffered from PMA and then GCA for seven years now. I recently

moved and had an urgent referral from my new doctor, as I had had a relapse

due to coming off my meds before having a PET scan. The referral took

9 weeks as it was lost twice! However when I did see my new, and very

experienced consultant, I found it was well worth the wait! He was

streets, highways and byways better than any other consultant I have

met to date - and I have met a few during my seven years of illness.

He just exuded knowledge, confidence in his subject matter and very

importantly offered common sense! He spoke my language and it led to a

OMG (oh my god) moment. At one point I leapt up and grabbed his hand

to shake it firmly in appreciation. He must have wondered quite why I

was being so emotional but it's been a difficult journey!

Anyway I thought I would share some of the important points he made me

aware of. Please, at this point, may I stress that his advice was

purely for my individual case as a patient but I am sure that some of

what he offered might be of interest to others.

1. He mentioned that, at times, there was too much reliance on blood

tests and scans rather than concentration on the person's symptoms. I

have had loads of blood tests over the years and in the last five

years they have basically all been the same - which has been fine -

but I have still been very poorly!

2. If having a PET scan there is no need to come off medication - as I

was told to do - as there is a danger that you will flare - as I did -

and again that obviously leads to eyesight problems and munching

masses of prednisolone!

3. The consultant then explained that any scan would only show

inflammation below the neck as it could only measure vessels down to

the size of 4mm and above the neck vessels are at a size of 2mm.

4. Then I was surprised when we got onto the subject of drug sparing

medicine and he informed me, in his opinion, that most of these drugs

such as methotrexate didn't really make much of a difference. However

he did say that he would recommend one drug and that was leflunomide -

which I have never heard of as it had never been mentioned by any

other consultant. I have been on three drug sparing drugs and have not

been able to tolerate any of them.

5. He then further discussed the side effects of high dose

prednisolone and GCA and that the symptons could be very similar -

headaches, dizziness, tiredness - so it made it very difficult to be

aware of which is causing the problems at any given point. This I had

been saying for years particularly when I was diagnosed with GCA and the muscle pain of PMR left me and the headaches, dizziness and fatigue set in - similar side effects that pred. offer!!!

6. He did throw in the concept that there had been a study some years ago that suggested that in many cases GCA could be treated with doses no more than 20mgs. This does stimulate thought. His opinion based on his 30 years experience plus his predecessor's experience led them to belief in this fact. He felt that many consultants/doctors jump to 40/60mgs and above because of the fear of severe eye sight problems and perhaps there is an exaggeration in the amount required. Not sure what other studies there are out there on this topic?

7.Advice to me as regards my flares was, initially, just to go back

to the last level of prednisolone I had been on that made me well. Basically to avoid taking too much pred. with its side effects. If that didn't work to go 5mgs up. He informed me of the dangers of pred. particularly as regards my bones. His advice with a new patient is start at 15mg but make sure that you taper down very slowly from there. Studies apparently have shown that those who started higher but taper quicker will have more flare ups!

8. Advice as regards alendronic acid - taken to help bone strength - was that after 5 years I should have had a break from it for a year. It does have its side-effects!

9. He was unconvinced as regards the usage of aspirin due to possibilities stomach ulcers.

The visit was finished off with an injection of prednisolone which he

said would facilitate a quicker oral reduction - I was having

difficulty getting below 17 mgs. I had been at 3.5mgs before having

the scan and been told to come off my medication!

So while it was an OMG moment for myself then perhaps there might be an OIC(oh I see) one for some of you out there. I repeat again that everything above was based on my personal situation and obviously doesn't apply to everyone but there is certainly much to consider!!

[SheffieldJane]

Wow! Stkeyna, I love him already, thanks for sharing. A proper healer.

Go well.

[PMRpro Ambassador]

Hallelujah! Where is this guy? Could he be cloned?

It's all things I have been saying for the last 6 or 7 years! And i too have discussed doses for GCA with a local rheumy who also thinks that for most GCA 20mg is enough.

The one thing I don't agree with is his take on PET scans. It doesn't take much pred to interfere with the emissions - that is something that comes from really specialised vasculitis specialists. Nor am I sure about his explanation of the resolution of PET scans - they are based on uptake of marked glucose and the brain takes up a LOT so any local arteries in the head, whatever size, are swamped by the signal from the brain. If you are having a PET-CT/MRI scan - they won't show cranial GCA so they are no use for that, just everything else. If they worked, they would use them, despite the cost.

Interesting he thinks leflunomide works (I agree with him on the rest). There was a very impressive pilot study where 22 out of 23 patients went into remission but the author was obviously not convinced since it isn't mentioned in the latest recommendation and he was involved in drawing them up. I know of a few people who have been on it - it didn't work for them or caused bad side effects.

But he sounds like a real find - enjoy having someone who sounds like he knows what he's at!

[Stkeyna in reply to PMRpro]

Hi, The consultant is Rob Hughes (Surrey) - bmihealthcare.co.uk/consult...

You make some good points about scanning which I am sure the consultant would be able to respond to but, unfortunately I am not. However he wasn' t against scanning just the risk - it certainly backfired with me. I have spent the last 9 months trying to get back to where I was prior to the scan and a long way to go. Prior to the scan I was on 3.5 mgs a day and doing well. The scan showed I had inflammation but I already felt I knew that so we didn't learn anything new from the previous scan some years ago.

I have not started leflunomide and really don't have a lot of confidence in drug sparing medicine. I have tried three so far and they all made me worse so I will just keep on tapering down on the pred.

Anyway delighted to have found Mr Hughes which does give me a little bit of hope for the future! He is certainly pro pred. but trying to be sensible about its usage.

Good luck to you and keep up with your excellent advice and help. Much appreciated.

Merry best, Ian

[PMRpro Ambassador in reply to Stkeyna]

Ah yes - one of the 2 in the UK I'd go to and I did wonder if it was him, didn't think there's be many as good as that! He's wonderful - and there are several on here who go to him and think the same!

Do you go to the Chertsey support group? He was speaking there this month.

[Stkeyna in reply to PMRpro]

Yes I went to the Chertsey group two weeks ago for the first time - he was speaking! He dealt with everything thrown at him with such ease and aimable confidence. He's full of common sense and down to earth - just what the doctor ordered!!!

I have, or had, never thought of going privately - perhaps because I didn't think I would get any better treatment than I had previously been offered. I had met a so called expert in the field, some years ago, who at one point asked me whether I had thought of using paracetamol to deal with my GCA headaches which really really left me thinking - this is an expert?! However knowing what I now know I would have definitely paid for his knowledge and advice. Luckily I now don't have to!! Pity others can't get the same level of care.

Best, Ian

[PMRpro Ambassador in reply to Stkeyna]

I have only "met" him online in a video conference about the OMERACT meeting a couple of years ago - and when I went to the meeting this year, he didn't. I was so disappointed! We're both involved in setting up research stuff...

[tgca in reply to PMRpro]

My GP started me off on 30 mg thankfully as It helped me reduce to 10 where I am at the moment (2hiccups on the way) ...next step is probably 9 1/2 but with caution as any kind of flu type symptoms could effect the dose it seems.

My rumy seems seriously disinterested in GCA and my GP is happy for me to "feel the way" regarding lowering the dose. So I follow PMRpro as my mentor !

[olive2709]

Sounds like the kind of things my guy here in Shropshire says ,

[Runrig01]

Agree with everything PMRPRO says. I also find his opinion on PET scans strange, out of interest did your PET scan show inflammation?. I had a PET scan 18 month ago, and was asked to reduce to 5mg for the scan. When I attended in the day the radiologist informed me that even at 5mg the Pred would reduce the outcome, because Pred affects the uptake of Glucose and the PET scan is all to do with the uptake of glucose by the cells in the body, areas of inflammation having a higher uptake.

Otherwise he does sound like a rheumy you don't want to lose. I know of a few people who tried Leflunomide, but found it made no difference in the reduction of Pred or their symptoms. Good luck if you decide to try it. As PMRPRO says the Prof who trialled it, decided despite his initial findings not to include it in his revised guidelines 😏

[Caro12line]

Thank you for sharing... Some very interesting points there

[Sallyaches]

I am very surprised about the PET scan. I was investigated having PMR and reduced quickly over 1 week from 10mg to 0 for 2 days before. It was not pleasant and a struggle to get to the scan. However the scan was very clear and showed lots of inflammation. I did not suffer any flare .

Still opinions do vary in medicine and this was 2 years ago.

I would be interested to hear if leflunomide helps you as I think it may be that or Azanthiprine that I am started on next.

Good luck on your new regime.

[Stkeyna in reply to Sallyaches]

Hi, Thanks for the email and I have responded to PMRpro, who came in first, so please read my response there.

Good luck!

Ian

[Jackoh]

Really good that you have found someone that you have confidence in - I think that's a main step for most of us. Unfortunately for a lot on this forum they are still to find that professional !

[Stkeyna in reply to Jackoh]

Yes quite right and that's why I posted what I did. I felt so frustrated at been given wrong advice over the years which had set me back. Finding the right consultant, I feel, is a huge issue. Also wish I had found this forum earlier! It only took 7 years!! There's a lot of sensible advice given from people who understand what it is like to have these awful illnesses.

Good luck to you!

Ian

[nuigini]

Thanks for all the information shared throughout these posts! In particular the facts around PET scans and prednisone.

[Stkeyna in reply to nuigini]

Delighted it has been of use. Best, Ian

[whitefishbay]

Wow. How great to find a doctor that is knowledgeable and sympathetic. RARE. Give him a hug (kidding).

[PMRpro Ambassador in reply to whitefishbay]

He's very huggable - though I doubt Ian thinks so

[Gosingen]

Thank you for sharing... this sure makes for interesting reading. I can't really add much other than say I too have PMR/GCA seven years plus now and struggle and have never been below 8mg pred. Tried a few DM drugs, not worked, or bad side effects. Not had a pet scan and my very good rheumy is retiring in January next year, so not sure who I will be seeing, but good to know there are excellent consultants - in case one wishes to approach him on a private basis, which I assume he offers. Thanks again.

[PMRpro Ambassador in reply to Gosingen]

Rod Hughes does private work yes.

[Stkeyna in reply to PMRpro]

Yes as far as I know!

[Gosingen in reply to PMRpro]

Thanks PMRpro.

[suzy1959]

I also see Dr. Hughes on the NHS even though he is not local to me (so anyone ought to be able to see him on the NHS). He is my 4th Rheumy and by far the best!! I always feel better after seeing him.

Regarding PET scans- as some of you know, I had a PET scan nearly 3 years ago as I had not got a proper diagnosis in 2 years and Prof Dasgupta was worried that I might have a large vessel vasculitis. I did not reduce the Pred. but it still showed up inflammation in shoulders and pelvis and so he concluded I definitely did have PMR! That was very helpful.

[PMRpro Ambassador in reply to suzy1959]

I imagine it depends on how much there is!

[suzy1959]

I suspect I have loads!!!

[PMRpro Ambassador in reply to suzy1959]

Yes - and I have a nasty suspicion that if they could afford to do PET scans on all of us who are "difficult" they might be a bit horrified!

Also should have said - bless him, the queues will reach to Brighton at this rate!!!!

[nuigini]

I've been thinking of pressing for a PET scan, which in all likelihood would fall on def ears, or paying for it privately. From what I've learned since being diagnosed with PMR I've had the suspicion for some time that I may have GCA without temporal involvement. However, after 2 1/2 years of prednisone and a present dose of 11 mg would it be worth having a PET scan at this point, given the impact of prednisone?

[PMRpro Ambassador in reply to nuigini]

I suppose it could be said that if we have symptoms then there is likely to be some inflammation to be found. I also think I have GCA without cranial involvement - and I think a couple of doctors here agree that is likely.

But what good does spending all that money on a PET-scan do when the only real option is taking enough pred to manage the symptoms? I'd love to have one and know - but the thought of stopping pred to be able to do it really doesn't appeal.

At the OMERACT meeting in Whistler mention was made of the concept that PMR comes in different shapes (which I've been saying for the last 5 or 6 years) whereby some of us have it for much much longer than average, sometimes for life. If you add in other factors like the bioavailabilty of pred - some patients absorb 90%, others only 50% of the dose they take for example it obviously makes a major difference to dose and length of management required.

As long as doctors will accept that that is so I don't think it really matters what results we get from anything until they can find a bio-marker that is specific to this sort of vasculitis. I am a bit surprised they don't use some of the drugs they know from other forms of vasculitis though. Maybe it is a reflection we aren't considered important enough because "it burns out in 2 years or so anyway" - an idea that is becoming increasingly apparent that it DOESN'T.

[Gosingen in reply to PMRpro]

Intersting reading PMRpro. Thanks, never heard of bioavailability. Perhaps this explains why I'm seven years into PMR/GCA and never being able to get below 8mg. In fact it seems I'm flaring - AGAIN - so another blood test tomorrow to see what it shows up with and have increased to 10mg this morning to see how I feel. Sure is a struggle, but nothing's fallen off so all in all still got my positive head on.

[Gosingen in reply to PMRpro]

Also meant to say that I agree with your sentiments about a PET-scan, not sure that I could stop pred just to have it confirmed. You do have some very useful info, thanks again.

[nuigini in reply to PMRpro]

Thanks PMRpro. I hear you. 😘