New Diagnosis of Temporal Arteritis

[ange1960]

After feeling unwell for a week a locum doctor at my practise sent me to hospital on Friday as she was worried I had Temporal Arteritis. The Acute Medical Initial Assessment unit were fantastic. I arrived at 12pm, had blood tests, obs, a chat with Doctor and was then told I had a CT Scan of my head/brain booked that day at 2.15pm and I would know in a few hours if they were right.

I'd done some reading about Giant Cell/Temporal arteritis and was convinced I did not have it. I was so shocked when the blood tests came back with results that make them believe I do. I have been prescribed Prednisolone 40mg which I started yesterday. The plan is an appointment with a Consultant Rheumatologist this week and possibly a biopsy of the Temporal Artery.

I have so many worries. I have some complex heart issues, including Atrial Fibrillation - am in poor health generally. I already take a huge amount of drugs daily due to heart issues. I'm concerned about the level of steroids and if that will affect if I can have my 2nd vaccination due in 3 weeks. I was in the shielded category for the past year so have not been out or had visitors. Over the last few days I have been around more people than the whole of the past year.

I did express concerns to the Doctor if this would mean I couldn't have the vaccine (it's really important to me that I get back to some level of normality, if only with family). He told me the risk of losing my sight, and other potential problems was something they could not put on hold. I needed to start the treatment now. He said we'd worry about vaccine in 3 weeks. He just kept saying, 'this is very serious'.

I'm a person who by nature looks on the bright side, the glass is half full kind of thing. I'm trying to stay positive and accepting of what is happening, while really not feeling too well. I'm not even sure I understand the problems with auto immune issues and steroids? My concentration is not what it was when trying to read.

Is there anything I should be asking the consultant when I see them this week? Any hints or tips or things I should look out for? Thank you

Sorry for the long post.

[SheffieldJane]

Thank goodness they caught it Ange! It sounds like you are in good hands!One thing though. Once we are on high dose Pred, it will effect a biopsy and increase the likelihood of a false negative. I was diagnosed by a specialist ultrasound scan, this can also have the results obscured by Pred.. In your shoes I might question the added value of a biopsy. I am not qualified or experienced to talk about your arterial fibrillation, others are though. Try not to worry too much. You will feel a bit odd initially but you’ll adjust. Rest lots and come back with specific questions when the shock has settled. 🌸

[ange1960 in reply to SheffieldJane]

Thank you Jane, some useful info there I can take with me when I see the consultant.

[piglette]

I should ask him about the problems you have mentioned in your post which are worrying you.

[ange1960 in reply to piglette]

Thank you Piglette.

[SnazzyD]

At the beginning of GCA it can be really upsetting and overwhelming. Your doctor is right in that it serious and your sight needs to be protected, but you’re on the right treatment. Pred is the best thing, even if it doesn’t feel like it’s helping because of the way it makes one’s mind and body go a berserk. You will find your concentration goes out of the window for a bit but it will come back as the dose reduces. Your cardiac issues are probably better off having this vasculitis quelled. For some reason your body’s immune system has decided to attack its own tissues in parts of the arterial system. The Pred is there to mop up the inflammation that would cause the damage. Once it is under control, the dose is gradually lowered, hopefully at the same speed as the condition dies down, but this is a long haul, be under no illusions that it is a quick fix, but you won’t feel this way all the time.The vaccine is less likely to be effective on high dose Pred. Also, the Pred will affect the biopsy result and make the result less reliable and the longer you are on the Pred the less reliable it is. This is why often they treat as GCA anyway if the history fits after a negative result. If it is positive it is reliably positive.

So right now, roll with it and accept this is going to be a rollercoaster for a while and keep an open mind about how you feel as it’ll likely be all over the place. It will get better! Rest rest rest and don’t try do grasp at normality by trying to be normal. Start now on a low carbohydrate diet to avoid the high blood sugars and weight gain , you’ll thank yourself for it later.

[ange1960 in reply to SnazzyD]

Thank you Snazzy, much appreciated. I does feel like a roller coaster at the moment. I used to love them...! Not quite so sure now. I'm hoping that by the end of the week I will know more, and feel more confident that the risk to sight has lowered or gone. That is one of my main worries right now. I know there is a lot more going on that I can't see or feel, but I'm keeping a level head and just taking things slowly and somehow not allowing myself to get too anxious or upset. It won't help, and will just increase the heart problems. I will start to make some changes to the diet too. I have been on a 'diet' for last 8 weeks and lost 14lbs, that's suddenly jumped the last week and I lost 5lb in one week. I know now that can be the GCA. I suspect the Pred will now reverse all of that, so I need to make sure the blood sugar doesn't go crazy. Last thing I need is diabetes on top of everything else. Thank you.

[DorsetLady PMRGCAuk volunteer]

As others have said, it’s good that it’s been picked up and you are being treated....that’s the most important thing to remember.

Just jot down what you’ve asked us - mainly medications, advice on on vaccine (although if you’ve had first, cannot see an issue with second).

As already said, you just have to take each day as it comes, much like your other illnesses. It does take time to adjust to a new illness and new medications, but don’t get stressed about things.

There’s always someone on here to answer any question....I’ll send you some info via link below, just keep it for now if you don’t feel up to reading it, and look at it when you’ve got your head around things....but as others have as advised, just rest as much as you can, when you can, the Pred will affect sleep patterns.

healthunlocked.com/pmrgcauk...

[ange1960 in reply to DorsetLady]

Thank you so much for taking the time to reply and reassure me. It means a lot, and all the information is helping me get a clearer picture of what I should be doing, and that it's 'ok' to feel how I do. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to ange1960]

Yes it is okay to feel how you feel.

In fact for anyone with an autoimmune illness (or any illness really ) it is okay, not to feel okay - the only people who think it's not, don't have any idea and probably aren't very caring.

🌸

its ok not to be ok

[PMRpro Ambassador]

The real GCA experts have already replied - they really DO know what they are talking about - they have the t-shirt.

First of all from me - yes you CAN have the vaccine. The question will be how much it will boost the response you had to the first shot. At least you had that before starting pred. But you must also remember that the vaccine is NOT 100% protection against Covid - we still need to continue to avoid crowds and being too close to strangers and to wear good masks. All of us here have been in the same position for the last year, we are all at increased risk with Covid. I have had both shots of the Moderna vaccine, I am changing NOTHING about my behaviour yet - although to be fair, here in Italy we have not had shielding as such and I have had to be out shopping or we would have starved! (My husband wouldn't survive Covid as his health is very poor in that respect), But I have met no-one inside the house in that time except tradesmen who were working on the balcony - all doors and windows wide open. You should be able to meet family who have had the vaccine too but you may find it helps for the present to not have to go out and meet groups of people - just because of the fact you are very unwell.

But far more important is the pred to protect your sight - not treating GCA results in permanent loss of vision in at least one eye for probably up to 20% of cases, with corticosteroid treatment that falls to more like 1%. But once the vision has gone in one eye, it is 50/50 whether the sight will be affected in the other. You have had the right advice from the doctor - this is a serious systemic illness.

How long have you had the a/fib? Have it been worse recently while you have felt unwell? I have it, caused by the autoimmune part of our illness and it is definitely worse if the vasculitis flares up and part of the reason I need 15mg pred is to keep the a/fib under control. I am also on medication to control the a/fib and BP.

Autoimmune disorders happen when your immune system goes wrong and is unable to recognise your body as "self" and starts attacking it as if it were an invading enemy like viruses or bacteria. This causes damage to body tissues, in our case blood vessels, epecially arteries. and that results in swelling that slows down the blood flow and can even stop it. In GCA certain arteries are more at risk than others - and the blood supply to the optic nerve may be interupted. If that happens it is like a stroke but affecting just vision as the signals from the eyes to the brain may be disrupted. The high dose of steroids is to reduce the swelling as quickly as possible to try to stop further damage to the nerve.

If that is still too much for you to get your head round at present - say so and I'll try to make it even simpler.

And REST - you are ill, and rest helps your body deal with it better. I know it is hard - but at present you and your vision is the most

[ange1960 in reply to PMRpro]

Thank you for your reply. From all the response I feel I may have more understanding of what is happening with my body. I developed Afib 5 years ago, have had 2 failed ablations, endless cardioversions and finally a CRT pacemaker so they could give me beta blockers to lower the heart rate. I'm due to have AV node removed very soon. I suspect that may now be delayed. My AF has been quite stable the past few weeks, so I am hoping the Pred does not kick it into place.

I'm lucky and have been able to do online shopping the last year, I have always done so since I became ill with the heart problems. I have no wish to go out among too many people, I didn't really do that before Covid either. Just family stuff, and a few close friends. I'd like to get to the stage where my daughter and grandchildren can visit. They used to drop in everyday on their way home from school. They and I, miss that very much. We have met outside, socially distanced in the past 2 weeks, and luckily I use laptop and facetime/skype all the time too. The young one's won't be offered any vaccine at this point, so we will have to judge if safe for them to visit. They are back at school and mixing with lots of people again. It all raises the risks.

I am already experiencing the sleep disturbances. I'm trying to just be accepting, stay calm, and hopeful that we've caught everything in time to protect my sight. I still have a headache, and pain behind the one eye. I had an Optician eye test on Saturday morning just as a further check (it was overdue by a year due to Covid anyway). I need a new prescription so I'm hoping that may help the 'eye pain'.

I've emailed my Cardiologist/EP this morning to make them aware. I also have an Thoracic Aortic Aneurysm, and I'm aware the Aorta can be one of the affected arteries too.

Once again, thank you so much for your help, advise and information. It helps to know there are people who understand how this feels as a patient. Wishing you and your husband all the best during this difficult time and hoping that things improve for you in Italy.

[PMRpro Ambassador in reply to ange1960]

Here they don't bother with the ablation approach - they say it so rarely works it isn't worth putting the patient through it! It was medication from the start - though unknowingly I'd had it for several years since the start of PMR, it was a drug reaction in hospital that kicked it off big time and I had a 5 hour long overnight episode with heart rate up to 230 at times until they found something to suppress it. There were no beds available in ICU to do anything more heroic. They thought it was high dose steroids - and gave me no more but they did give me the i.v. diazepam - cue a second night though it was slightly better. The first medication also was ditched - an ACE inhibitor caused an allergic reaction! But first warfarin and now Pradaxa was also added to bisoprolol and losartan though very low doses and losartan is now stopped.

Then a few years ago I started having fleeting dizzy spells/ringing ears and finally I passed out and hit my head - ending up in hospital where having not known about the previous reaction to diazepam they gave it me again! Luckily the resultant a/f attack identifued I was having bradycardias with pauses of up to 7 seconds, less than 10 beats a minute! So I was sent to the cath lab at the big hospital for a pacemaker so they could use more mediation but not slow the heart rate too much. And since then I've been fine, I just take the tablets and don't worry about the occasional a/fib, Unfortunately - G&T is now a no-no, triggers them too much even more my liking

[madhouse1]

Very sensible consultant! Eyesight is more important than your Covid jab. He’s not ruled it out but reassuringly said worry about that in three weeks so he’s not said no but rightly prioritised you GCA. Sounds as though you’ve had first class care so relax and let them treat you. It’s easy to don’t worry but that will help you more than anything. Hope all goes well for you xx

[ange1960 in reply to madhouse1]

Thank you Madhouse. I feel like the care I have had has been excellent. From a locum GP who insisted I go to see her rather than just the telephone appt, who organised blood tests and from the first visit said she was worried it was GCA. I was convinced I had shingles..!

She pushed it all and the assessment unit at the hospital were just superb. To get there and find they'd organised a CT head scan before I'd even arrived was just so surprising. I think I got really lucky - and am very grateful for our NHS and the service I have had. Thank you.

[madhouse1 in reply to ange1960]

It’s so nice to hear about this level of care - it is very rare. You’re very lucky and it should help you not worry so much too xxx

[Jeanfkelly]

Hi Angel1960 - you sound like 1p years ago!I was on several heart meds & meds for BP, daily antibiotics & painkillers when I was diagnosed with GCA.

The steroids- Prednisolone 60mg daily made no difference to my pill regime, even when some other heart meds were

Introduced for a short time.

Your consultant /GP will have checked for contra-indications hopefully & already reassured you.

All the best

I forgot to say that one of my heart problems was Atrial Fibrillation & I've just had my 2nd Astra Zeneca vacancies with no problems other than a slightly achy arm. xx