Please read this- it might save your life!

[Suzita76]

Following on from my post a month ago, I wanted to update people because my case could have profound ( even life-saving) effect on fellow GCA sufferers.

I had a suspected relapse (after more than 15 months of absolutely no symptoms, steroids very gradually reduced to 3 mg daily, and inflammatory blood markers really low for at least 6 months), then completely out of the blue, a routine blood test showed the markers had shot up ( but no pain, no symptoms at all).

My GP increased pred to 10 mg ( for the 2 weeks when I was away on holiday), but the next blood test still showed high inflammatory markers, so the consultant was consulted and upped my pred. to 20mg. Because of the horrendous side effects I get when on anything higher than 25 mg prednisolone ( plus it’s now given me steroid-induced diabetes), my ( new, wonderful NHS ) consultant thought I ought to have a PET-CT scan ( to try to see what was causing the inflammation given I had no infection- could have been cancer).

If the results showed active disease (i.e. inflammation of arteries despite no symptoms), she would recommend me to go on Tocilizumab, now approved by NICE in the UK but previously not prescribed for GCA sufferers.

The scan results came through 2 weeks ago and shocked everyone. Temporal arteries no longer being attacked BUT all of my major arteries ( aorta, carotids, sub-clavian, you name it) have significant inflammation and evidence of being actively attacked, and I could easily have had a stroke, aneurysm or heart attack and be dead!

I am now on 40 mg pred. ( hopefully not for long or I’ll be dead anyway- horrendous side effects for the past 2 weeks, hallucinations, no sleep for 5 days, uncontrollable sobbing for no reason and had to call out the mental health crisis team). Now waiting for the results of a test for latent TB before I can start on the Tocilizumab, but that should be in the next couple of weeks.

I’ve gone on long enough, especially as we are all trying to be positive and think about the festive season but......

The bottom line is

at time of GCA diagnosis, arteries should all be looked at (not necessarily by PET-CT scan- there are other cheaper, less nasty methods) to look for involvement of other arteries.

An ultra-sound of temporal arteries needs to be done fast ( many places now prefer this to temporal artery biopsy).

A bone scan should be done BEFORE going on to Alendroic acid

Merry Christmas!

Sent from my iPhone

[SheffieldJane]

Thank God they caught this Suzita! I am so sorry that you have suffered so much. It really must have shocked you to the core. Nobody would see that coming. Have a peaceful event free Christmas! Keep us informed!

[granny-b]

I have a very similar story. Original diagnosis in June 2015 based on thunderous headache, jaw problems and CRP of 26. There were no visual symptoms. This was followed by a positive biopsy.

Fast forward to a couple of months ago my CRP went to 33 but no particular symptoms to think GCA. My consultant did an ultrasound the next day but didn't find anything so booked a PET scan.

He said very clearly that this was to look at my vascular system but I also was thinking they wouldn't ignore anything untoward that they saw. Found that idea very scary more so than GCA relapse which I didn't believe as I didn't have symptoms.

Results came in... In all my major arteries. Still in a bit of shock but thank my (also wonderful NHS) consultant for his persistence and care.

Actually feel pretty good. Didn't realise how very below par I was. The man has given me Christmas to enjoy and some steroid energy to get there.

Hope you also get some peace with your diagnosis and treatment. xxx

[Suzita76 in reply to granny-b]

It really goes to show we need to have our inflammatory markers checked regularly- mine had been very low for months until my consultant decided to only check every 2 months (because I had been so very well and symptomless!). At least we don’t have cancer (yet!), though these disorders are so very difficult to treat.

Very best wishes to you, and we must all keep up the good fight eh?!

If the Tocilizumab works, I shall be lobbying for all GCA sufferers to be offered it- the other so-called steroid-sparers can also have horrible side effects, though I can’t imagine anything can be as bad as prednisolone for me personally. Losing all my lovely hair was a further dreadful blow.

Take care,

Xxxxxx

[granny-b in reply to Suzita76]

I am on high dose steroids reducing over 75 weeks and 20mg methotrexate. This works for me. So I don't want to try toxilizumub as if it does work for you what happens at the end of the allowed year..? Also it comes with its own side effects too. May reconsider as I get further along.

You take care too. xxx

[PMRpro Ambassador]

So I keep saying.

A very unpleasantly large proportion of us have LVV (large vessel vasculitis) that is never identified and leaves us at considerable risk. But I fear that, whatever you were told, the temporal ultrasound achieves relatively little in many cases. Apart from the fact it is not widely available, for many of us the temporal artery is not involved even if everywhere else is.

I could have tcz here if I had GCA - but I have atrial fibrillation anyway and that is also an adverse effect of tcz, It isn't entirely straightforward.

[Suffererc]

Why do we not get a bone scan after 65 years of age. I take AA but dont want too.

[PMRpro Ambassador in reply to Suffererc]

Depends where you are - you can probably request one as a person on pred. It has been assumed that anyone over 65 has bad enough osteopenia to require AA automatically. I would certainly argue the case for a baseline reading at any age these days. i.e. within 3 months of starting pred. Even at 65 and after 7+ years on pred my bone density was solidly in the normal range even without having taken anything more than calcium and vit D. And now the skeletons are crawling out of the cupboard (sorry) with regard to bisphosphonates there is all the more reason for them to be reserved until there are real and proven grounds to take them.

[Sallyaches]

I was taking risedronate for 4 years, I also take vitamin D. Medical advice was to keep on but as I am down to 4mg felt it was less necessary. There was a bit of a standoff but I volunteered to pay for the bone scan. I think it was money well spent to learn the result was excellent and that I could stop the risedronate. The NHS will gain as it will no longer have to pay for the prescription.

I know some would argue about spending money to get the scan but it was a way to solve the problem and arguing with the NHS can be exhausting.

[Hidden]

Thank you for alerting us to this. As we journey through PMR/GCA it is so good to learn more and more so that we have awareness and the right questions to ask our medical team.

[Jackoh]

Thank you for letting us know. What an awful shock for you but thank goodness this has averted other possible nasties.

[daworm]

So if the arteries are inflamed this will show a raised cpr level? And if they aren’t involved the cpr should show normal? I’m starting to think I have some kind of arterial involvement myself..

[PMRpro Ambassador in reply to daworm]

No - doesn't follow. A similar number with LVV (large vessel vaculitis) are likely to to have normal levels, exactly the same as for GCA and PMR.

[daworm in reply to PMRpro]

Thanks..I’m thinking of giving myself a present this coming year of a real good physical at perhaps Mayo Clinic, if for nothing else, my piece of mind...seems like one symptom fades away and another takes its place...plus I don’t feel my family Dr., who I like, just doesn’t know enough about this PMR stuff...I feel I should have more than a couple of blood work/labs a year...I see him every three months but blood only a couple times a year...and don’t forget 🎄🎄🎅🏼 Merry Christmas! Hey, we’re on the top side of the grass...

[PMRpro Ambassador in reply to daworm]

You probably have more checks than I do - but the ESR/CRP are pretty meaningless for me and always have been. For most things a couple of times a year is fine - unless they move from normal, in which case more often is called for.

[Valnvaughan]

That is a salutary tale. We have to be so aware of our bodies.My GP doesn’t order blood tests any more....maybe I should ask.

I believe I have vasculitis problems as my legs can be blue colour and stone cold and “hurt” whilst rest of me is warm. Hmm! Valerie

[PMRpro Ambassador in reply to Valnvaughan]

Sounds like Reynaud's might be a possibility - various causes, I have had it for years, long before PMR, but it has been better since being on pred.

[Dream21]

Thank God you caught it. I have PMR and then got diagnosed with GCA. I am so glad you took care of yourself and had everything checked. It is definitely not a disease you want out of control. Thank goodness you caught it early. It is a reminder for everyone with PMR to know the symptoms of GCA.