Giant Cell Arteritis/Never ending

Glad I didn't let you down Eileen!

My dad was diagnosed with temporal arteritis over 5yrs ago and after somewhat being mistreated by a variety of inexperienced gps. What some fail to recognise is temporal arteritis is classed as a medical emergency that requires treating as such.

Eventually my dad saw a fantastic neurologist cos we paid to get him seen due to lack of action from the said gps.

The neurologist reassured dad that it is not always accurate to diagnose from biopsies but he was 100% certain from esr results and symptoms, plus the fact that one dose starting at 80mg prednisolone "switched off" the symptoms.

Over the years dad has tried to reduce his steroid dosage and has bravely weathered all the side effects accordingly.

Now he is being converted to methotrexate with the initial plan of weaning off steroid therapy but sadly it seems as tho he will need the combination of both.

His main probs now are nausea from the methotrexate which last for two days after the day he takes that plus repeated episodes of oral-oesophageal thrush so any advice is welcome.

By the way he was 80 last week and if not for this brilliant neurologist he would either have been blind or worse!

And ps. His weight came down with his dosage...as we said rather have a plump dad than no dad! :-)

Hi Angela! As far as the thrush is concerned could your dad eat a live yoghourt a day? This has been a recurring problem of mine, but I do know that the yoghourt keeps mine under control.

His GP should be able to give him something to take for the nausea - I was lucky and only got mild nausea in the early days. It 'wore off' as the dose was increased but I know many find it a huge problem.

The neurologist he saw was on the ball - biopsies are fine if there is a positive result but unfortunately a negative doesn't always mean you haven't got it. The specimen may be too small or simply to have missed catching some of the giant cells. They are finding now that ultrasound is more useful as a diagnostic tool.

Methotrexate is usually used as a steroid-sparing agent in PMR and GCA in that it may help to minimise the symptoms, so allowing steroid reductions. There have been very favourable reports on a drug called tocilizumab recently, so we are hoping that eventually we will find an alternative to prednisolone.

Please wish him a belated happy birthday from me - he must be a lovely dad to have such a caring daughter,

Thankyou nefret,

He has some antiemetics that he has on his methotrexate days but it still 'knocks' him off for a day or two so hes used to that by now alas.

As to the thrush hes not one for yoghurt but can eat haha, usually ice cream and he never had a sweet tooth before!

I think hes pretty good considering how ill he was, particularly at the beginning.

I would press anyone to check that their neurologist is specialised in gca and pmr to get the best treatment.

Certainly my dad is better for having confidence in the physician and trusts his judgements.

Hi Angela and welcome! I didn't answer earlier as (mercifully) I have only theoretical knowledge of GCA.

"What some fail to recognise is temporal arteritis is classed as a medical emergency that requires treating as such."

We know Angela - we know! I realised about 3 years ago that this was a problem in 2 ways. One is that they struggle with concept that this is something they are out of their depth with and don't recognise it in the first place. The other is that they think making an urgent referral means the patient will be seen fast. At the time urgent meant you would be seen in 12 weeks rather than the 18 week window that was the alarm at the time. We have tried various ways of alerting people (patients and GPs) to the fact that if you have someone who possibly has GCA they need to be sent to hospital with a letter in their sweaty little paw addressed to the ophthalmologist, neurologist or rheumatologist - whose team has been alerted by phone that said patient is on their way. Why it is a problem defeats me - my optician knew this and acted on it appropriately at least 7 or 8 years ago. I have waited for my appointment because he was doing just that when a patient had arrived complaining of "not seeing right". An optician in Scotland was subject to disciplinary action because he "slept on it" - and the patient went blind.

Patients who see either an ophthalmologist or a neurologist tend to be treated far more aggressively than those who see a rheumy - and in much of the rest of Europe they are just as likely to see them. Why the UK is different I'm not sure.

However - what dose of pred is he on? Is it particularly high? Is it causing real problems? Is the use of mtx justified in terms of benefit compared to the downsides? Here where I live in Italy they are adamant that mtx has no role to play in PMR - and absolutely not in GCA. It cannot supplant the pred, it can only reduce the dose of pred in some patients because of the way it alters the way the body metabolises pred. There is to my knowledge no real evidence it works effectively - and the rheumys in the UK are beginning to realise that one swallow does not make a summer (or, in this case, one study may not tell the real truth).

Looking forward to hearing more from you about your dad

Eileen

Hya eileen, sorry i realise anyone who has first hand experience of gca would know that they shouldve been treated as a medical emergency, however a large no of gps seem not to even have considered it when my dad was ill. And he was so ill we were convinced he even had a brain tumour!

His neurologist has stated on more than one occasion that because he was "mismanaged" at diagnosis its why he struggles to drop below 10-12mg of pred.

He is currently on 15mg pred daily, daily folic acid and once weekly 20mg mtx.

The consultant had hoped to wean off steroids and be soley on mtx due to the no of years dad has been on pred considering long term risks.

Personally tho hes had more difficult symptoms to contend with from the mtx!

He is persevering tho!

At least hes not a man possessed as was on 80mg pred....he knocked down and almost rebuilt his shed in a day!, lolX (not funny at the time).

As i say tho we are thankful hes here and dad thinks we are crackers worrying as he had no concept how seriously ill he was.

I would say to anyone persevere or complain to get a prompt referral, even as we did, pay privately if necessary (not that you should have to). You will benefit from the prompt treatment that is so vital.

Angela - no need to apologise! I just wanted to emphasise this appalling state of affairs where GPs appear not to know how the system works. They have had notifications from "head office" - and what do they do with them? They bin them instead of looking at them!

Umm - don't know what makes the consultant think that he can use mtx to REPLACE pred. It doesn't work like that - GCA isn't RA and mtx doesn't even always help for PMR. There are also plenty of consultants who would be happy to have an 80 year old with GCA at 10mg after 5 years. I'm just getting to 6mg for the first time after nearly 5 years of PMR and a lot of that time being IRO 15mg and sometimes well above. My docs here weren't in the least bit bothered about a dose of 10mg - and I have only got further down by going at less than 1/2mg at a time. That isn't particularly unusual.

If the mtx is being more trouble than benefit the consultant really does need to think again. The only reason for using anything is for the benefits to outweigh the disadvantages. He needs to check the bone density with a dexa scan - mine hasn't shifted at all in those 5 years for example, pred doesn't always have such a bad effect. If so, then there is medication to rebuild the bones which might allow a better QOL than the mtx is doing.

My argument has always been that I will take things if needed - I want the proof first though. There is an assumption that anyone over 65 will have bone density loss. One lady on the other forum is over 80 and, after 2 lots of PMR and latterly 5 years on pred with nothing except calcium and vit D supplements, has just had a hip replacement. Her orthopod told her she has a bone density of 97% - a very excellent figure for anyone, for an 80 year old - outstanding. Your father has obviously been very active (like this lady) and does have an advantage in being male. Maybe the long term risks are NOT as the consultant is assuming.

Just a thought - the reduction problems might be helped more by a VERY slow progression.

Eileen

Thanks eileen, he is very slow with the changes, sometimes feels like one step forward and three back!

He will be due for a review in next few weeks so i shall post with an update then

Thanks for the reply :-)

Hello All,

I am new to this forum, although I am on the one for Graves disease.

Back in October I got severe headaches and pain over my right temple. In A&E bloods were taken to check for GCA and they were negative. The headaches then seemed to ease to the point of disappearing altogether, except for the occassional throbbing over the right temple. I've had more bloodtests and both ESR and CPR were normal. However, since about 2 weeks, my right temple feels 'different'. It's not painful, there's just some discomfort, but no pain as such. I was back to my GP who suspects it could be GCA and I have to go back on Monday. At my insistence she gave me Prednisone 1 mg a day, as well as some valium type tablets as I was getting very anxious.

From reading your posts, it seems that you all experienced severe pain and I am wondering if I have this or not? I'm not too keen on having a biopsy, so would an ultrasound be a good diagnostic tool?

I also saw the opthphamic surgeon in October and he couldn't see anything amiss.

Looking forward to haring your comments,

Stefania

Hello stefania,

Sorry to hear youre having probs.

I know from my dads gca that he had significantly raised esr and this is monitored very closely even after 10yrs with this condition.

In his case he had a biopsy but it was still neg.

Its very hard for a biopsy to accurately pinpoint the exact area.

It doesnt mean you dont have it.

It dads case the neurologist took all his symptoms into account plus his pos response to the steroids, he was started on 80mg daily prednisolone, this in effect switched off his pain.

Now 10yrs on he is still on 15mg pred daily and once per week 15mg methotrexate.

He is 80yrs old and i think hes amazing.

With luck you will have a great physician to help xx

Hi Stefania and welcome!

Are you sure 1mg/day pred? That won't do anything for anything. Was your GP able to find a pulse in the temporal artery? If not that may be why she suspects it. have you any other problems to suggest it?

As Angela has said "normal" ESR does not rule out GCA (about a sixth of patients don't have abnormal blood tests) nor does a negative biopsy though if it is positive it is 100% certain. Ultrasound has been tried and shown to be probably better than biopsy, it shows a halo effect in the artery, but unfortunately it is still in its early days and only a few centres in the UK can offer it so it depends where you live to some extent. It will take some time to roll out country-wide as you have to have staff available and train them, the equipment is there in most vascular labs (it would be them who did it in most places).

Eileen

Angela - I assume your father's adrenal function has been checked? If they aren't doing anything much he will struggle to get below about 10mg - and both long term pred and age lead to the adrenals not being up to snuff.

And when I said slow, I meant SLOW! I will take about 7 weeks to get from 6mg every day to 5mg every day. I never even consider more than 1mg at a time and I can't cut my tablets. I take the new dose on one day, old dose for 6 days, new dose one day, old dose for 5 days - and continue like that to old dose for 3 days, repeat that and then do 2 days gap twice. That gets me to alternate days old and new. Then I increase the days of new between old doses in the reverse process. It takes me ages but it has worked so far and nothing else did in the previous 4 years!

Eileen

Hello eileen, over the years dad has had numerous attempts to reduce his pred have only ever got to 10mg and hes had to go back up because he becomes symptomatic.

I think thats harder for him psychologically but we try to say at least hes still here and not like some poor souls with gca.

The reason for him startin the mtx was so he could convert and avoid the steroid long term risks but to be honest he was better left alone and to persevere.

Hes so nauseated and achy on day two or three after his mtx.

Anyone else have these issues? Did you?

Thanks again

Hello Angela and Eileen,

Thank you for your comments. I don't know why only 1mg - presumably because they're not certain yet and I was fretting! I think because my ESR and CRP didn't show any signs of abnormality is causing them the doubt. Could this even be a case of mere arthritis in the bones? When this all started in September/October, my whole scalp was hurting, but that stopped immediately when I changed my shampoo! The only thing that remained is what I can only call an 'ache' on or near my right emple and the very occasional throbbing there. I also don't feel very well on days, but that could also be from the neomercazole I'm taking for the thyroid treatment? I even wondered, if my flu vaccination in September had anything to do with this!

Regards,

Stefanie

Angela - we have a few older ladies on the forums who have found that their osteoarthritis has appeared again after getting to low steroid doses and initially the symptoms were so similar they also thought the PMR was flaring. Let's face it, after 10 years and now being 80 there are likely to be other aches and pains that are merely age related and - to be honest - half of 80 year olds have PMR. It isn't something that can be cured by anything so if it hasn't gone into remission it may never do so. I'm much younger but have had PMR for 10 years - I'm just being able to reduce at last but I don't know how far it will go. I don't care to tell the truth - I'm almost at 5mg, if that does I will stick there happily enough.

As I said before - mtx DOES NOT REPLACE PRED in PMR. It may make it easier to reduce the dose a bit further as it changes the way the pred is metabolised but I am convinced that the patients for whom it works have undiagnosed RA and it helps there. If it makes him feel ill - I would be questioning why he's being made to take it. The latest review of the medical literature mentions the fact that the evidence for mtx being useful in PMR is shaky and very mixed: I think only one of about 3 studies found any benefit at all and when the entire figures are looked at it didn't make any difference to the overall amount of steroid taken. What DOES increase the total amount of steroid taken is forcing repeated reductions which cause a flare and then having to increase the dose to deal with them. This yo-yoing of the dose has been known for some years to cause future problems with reductions.

I have never and would never take mtx - and the local consultant here in northern Italy is adamant it has no role to play in PMR. Here we get pred and calcium supplements. Nothing else at all - and I also suspect that may help because the cocktail of drugs handed to patients on pred in the UK is bound to lead to interactions. No drugs are looked at as part of a mix of up to 10 (or more) which is common for older patients in the UK. They get a drug, a side effect appears and another drug is offered to combat that side effect which, in its turn, causes something else and another drug is given - and so it continues. Statins can cause horrendous muscle problems, and that I do know from personal experience (I couldn't walk more than 50m after 10 days of taking one). So can omeprazole and many other drugs - and all mixed together it is likely to be potentiated.

I do hope they can sort something out for him soon - the nausea and flu-ey feeling with mtx is common, many younger RA patients for whom it works tend to take it at the weekend, preferring to lose the weekend to the "mtx hangover" and be able to go to work on Monday. There is an injected form and that seems to avoid the nausea so maybe you could ask to try it - but there isn't a lot of point if it hasn't enabled a decent drop in the pred. Does he have any pred-induced problems already? One form of pred (Medrol) I found horrendous in terms of side-effects but the other forms I've been on I have no problems with at all.

Eileen