GCA help & advice for my mum .

[Bubble-ml]

Hi All

Lovely to read all your posts .

I've just joined this forum in need of some help for my 72 yr old mum : (

I'm getting worried so much for her now even though she's having regular checks , she doesn't seem to ever pick up !

Diagnosed with GCA 4 years ago .. (She also has AS which is an advanced form of arthritis which she also has med's for )

She was on 60mg of steroids for 18months and numerous occasions trying to reduce them - which she struggled with for 2 years because it didn't help. Finally, 4 years later she's on 7.5mg and hoping to keep reducing .

But NOW ... she has this awful smell up her nose which makes her feel sick.( she's had tests and they can't see anything ) . She hasn't has sense of smell or tastebuds for a year now and is losing weight by the day . She doesn't desire any food because she simply doesn't feel like it as the smell is so bad.

She now is struggling to obviously got to the toilet !

I'm wondering if anyone has experienced this side affect and how they managed it? She's so low now & she won't go on these forums because she just gets so upset but I'm desperate now for some help from anyone that has gone through this particular issue

Thank you so much xx

[Hidden]

Hi bubble-ml, sorry to hear your mum is not doing so good. I have got your mums issues with taste loss but 2 things have made my sense of smell weird... Like, excuse me, wen they spray human excrement as fertiliser.... First was antihistamines and the second when I was riddled with thrush and it was up my nose and down my throat but I didnt know for a while. Your mum was at 60mg for a long while so thrush could have been building. With candida everywhere I found my appetite changed. I hope you can find a solution.

enthealth.org/conditions/fu...

[Bubble-ml in reply to Hidden]

Hiya

Thanks for your reply . Oh gosh that's not good . Hope you sorted it . Thank you so much I will put that to her .

[SnazzyD]

Gosh, no let up is there? What tests did they do?

[Bubble-ml in reply to SnazzyD]

ENT clinic did tests for polyps , infection etc . It showed nothing .. But obviously there is something . We are going to try explore hypnotherapy. Anything is worth a shot

[Hidden in reply to Bubble-ml]

The problem is anorexia caused by issue is a hard cycle to break. Little and often often works. Hope the hypnotism helps.

[SnazzyD]

Have you tried chilled foods?

Have any neurological investigations been done?

[Bubble-ml]

Chilled ? What would that do ... She will honestly try anything ! She has no appetite at all now .

Well 3 weeks ago they attempted to do an MRI, but because she also has this AS ( Ankylosing spondylitis) as well , her back has become rounded and she couldn't lay flat enough to have the MRI done so the hospital didn't pursue it ... So she's had to wait for a scan now . Honestly my poor mummy is really going through it and so helpless to get her well again .

[Hidden in reply to Bubble-ml]

Whe people can't taste food temperature and texture become much more important to stimulating the appetite

[Bubble-ml in reply to Hidden]

That's interesting .. Thanks for that . Ok I'll let her know . Thank you ... I really appreciate everyone advice 😊

[SnazzyD in reply to Bubble-ml]

Cold food can confused the taste/smell thing and something that slips down rather than being chewed might be a good way of getting in those calories. Are there some foods that are worse for her than others.

[PMRpro Ambassador]

Was the GCA confirmed by a biopsy or imaging?

Have you tried Meritene meal supplements for her - they are like milkshakes really (other varieties are available)? My husband can get them down even when he isn't interested in anything else. His are prescribed here but it might be worth trying a couple to see if it is worth it.

And have they considered the problem could be damage to the trigeminal or other cranial nerves?

sciencedirect.com/topics/me...

[Bubble-ml in reply to PMRpro]

I'm not actually sure which way it was diagnosed . I have told her to maybe try some food supplement drinks to boost her up a bit so , yes thanks for that I will give her the information you suggested . Thing is the smell in her nose is so bad she contstantly feels sick .

Today she has been given anti sickness tablets to try hold off that feeling .

[SnazzyD in reply to Bubble-ml]

What anti sickness meds? There are a few and they work differently.

[Bubble-ml in reply to SnazzyD]

I'll ask ... Think the gp said she would try and see if they stopped my mum feeling sick before she ate so she could enjoy a bit of food for a change

[Bubble-ml in reply to PMRpro]

Tomorrow is her day to visit the GCA professor and I hope he can shed some light on this loss of smell situation 🙏🏼

[PMRpro Ambassador in reply to Bubble-ml]

I think you need to ask about the diagnosis - if it was through imaging or biopsy the GCA dx will be pretty cast-iron. But if it was on the basis of symptoms - it is perfectly possible they were due to the AS: I know someone who got an admission from a GCA expert that her earlier symptoms had probably been GCA but later the entire diagnosis was revised to AS. Possibly a different AS medication might help - who knows.

Some of my reading seems to suggest that pred may help - did it occur as she reduced her pred dose?

[Bubble-ml in reply to PMRpro]

Ahh ok .. I understand . No it is most definitely GCA... She has AS too. : (

[PMRpro Ambassador in reply to Bubble-ml]

They can cause identical restriction of blood flow - leading to the same symptoms. That's all I'm saying.

[SnazzyD in reply to PMRpro]

Yes, very much worth getting to the bottom of it in case all this Pred is unnecessary, especially at such high doses. Find out exactly why they thought it GCA and why, if it was based on symptoms they decided it wasn’t down to the AS.

[Bubble-ml in reply to SnazzyD]

She's had AS for as long as I can remember ... Then she was getting a really sore head ( sore to the touch ) , no energy , weight loss , she was ill all the time , her jaw was hurting she said... Her go was treating it as PMG and by fluke one day she had a blood test result at hospital and the doctor I mediatly said it was a wrong diagnosis ... And GCA was discovered . Are you saying these symptoms are also AS . ?

[SnazzyD in reply to Bubble-ml]

PMRPro knows more about AS than me. It still could be GCA but I think I’d like a revisit and an explanation of the thought processes that have lead to where she is today. There is no specific blood test for GCA, just non specific (can be from other inflammatory processes) raised inflammatory markers that are used in conjunction with symptom history. Did any dose of Pred ever help? It is unusual for someone to be kept on such a high dose for so long; usually they start talking about other types of immunosuppressants long before because they are afraid of the effects of Pred.

[Bubble-ml in reply to SnazzyD]

She tried to come down from the steroids quite a few times but she could never get any further down than 20mg.. She would go straight back to being unwell again

I think the steroids alone have done a lot of damage but these were the only things ( so the professor says ) that keeps her from slipping back .

She's on the newest drug they have for GCA so hopefully this will have good results .

[PMRpro Ambassador in reply to Bubble-ml]

Getting stuck at 20mg for some time is not unusual with GCA.

Did she already have the bad taste before the tocilizumab? It is a listed adverse effect.

[Bubble-ml in reply to PMRpro]

No ...think she had already started the med's

[PMRpro Ambassador in reply to Bubble-ml]

They can be - the AS can also affect the blood flow in a similar way which is what causes the symptoms. However, if she had a very raised acute response (ESR and CRP blood markers) it would probably make GCA more likely but even PMR patients can have very high levels when untreated. It is very confusing and complex.

[Bubble-ml in reply to PMRpro]

Yes I remember her saying her markers were very high ... She has delivered every month some medication that she has to inject herself with ... But when the GCA was diagnosed they took her off the med's because she couldn't handle both . May I ask what Medication you have / or had ?

[PMRpro Ambassador in reply to Bubble-ml]

I'm on pred. That's all that is on offer for PMR.

I imagine she was on a biologic for the AS, an anti-TNF agent, which wouldn't do anything for the GCA. And from what you say to Snazzy, is now on tocilizumab for the GCA? Only one biologic can be used at a time.

[Bubble-ml in reply to PMRpro]

Yes she's on Etanercept for the AS

Tocilizumba for GCA

Are you familiar with the effects of those at all ?

[PMRpro Ambassador in reply to Bubble-ml]

Is she on BOTH at the same time?

[Bubble-ml in reply to PMRpro]

No

They’ve had to take her off GCA med for now ... she can’t come off AS one as she’s in to much pain

[piglette]

A friend had the smell problem a couple of years ago. She does not have GCA or PMR. It went on for ages and she saw doctors privately in the end. She was losing weight too. I think it is OK now as she has not mentioned it. I will check with her what happened.

[Bubble-ml in reply to piglette]

Amazing ... That would be great if she could give you a little bit of info . Thanks so much

[piglette in reply to Bubble-ml]

This is what my friend said, she said if you have any more questions she is very happy to answer them.

“I trained my nose to snarl again by going round the house, sniffing strong smells eg Marmite, soap, jams etc and reassuring my nose that these were the feel smells and not the ones which it was creating in my head out of fear and panic. I kept doing this particularly when the nose smells were bad and it really worked. The problem is still in the background but because I am controlling it I no longer panic and it only comes back occasionally, very mildly and treat it in the same way as I described above.”

[Bubble-ml in reply to piglette]

Thank you soooo much . That’s so kind of you . I’m going to get her to practice that every day . We were thinking of hypnosis to see if they could trick the mind . But she would definitely try this around the house . Thank you again x

[piglette in reply to Bubble-ml]

Hypnosis is a good idea too. I will ask my friend if she tried that. I know she went to loads of places about it.

[piglette in reply to piglette]

My friend said she saw a ear nose and throat consultant he said it was called Phantosmia. She said he was useless and just said that it would go away given time! She did not have hypnotherapy for it. She just devised her own treatment for it which she described in her earlier message, and it worked!

She says it was horrible living with it. “It felt as though I had a sewer in my nose which kept changing its smells all of which were unidentifiable and all equally disgusting. I had to hold my breath every time I ate anything because if I took a breath at the same time as eating the smell of the food appeared to be disgusting. It really put me off food. I am so glad I managed to control it”

[Bubble-ml in reply to piglette]

That’s exactly how she describes the whole experience piglette : (

So glad she’s found a way to manage it .

It told my mum yesterday about how your friend has tried to combat it and she’s going to give it a try . She did try with cinnamon and she could slightly smell it

She said it is especially bad when it’s hot food or when she’s cooking . Think she’s the same - holding her breath when she eats

Unfortunately she had to go to her professor yesterday as her markers have shot up again re : GCA so she’s quite poorly and he said the smell thing isn’t something they believe is to do with GCA ... 🤷‍♀️

But I will definitely get her to try your friends solution

Thanks again hun

[PMRpro Ambassador in reply to Bubble-ml]

jnnp.bmj.com/content/jnnp/5...

I do realise that involvement of the olfactory nerve (cranial nerve 1 I think) is rare - but being rare doesn't mean it doesn't happen. Other cranial nerves may also be involved, we know the 8th cranial nerve (hearing) is commonly affected.

ncbi.nlm.nih.gov/pubmed/251...

[Bubble-ml in reply to PMRpro]

Yes that’s true

Thank you very much I will forward this to her : )

[piglette in reply to Bubble-ml]

My friend said she is happy to talk to your Mum if she wants.

[Bubble-ml in reply to piglette]

Thank you so much .

Is she in the uk ?

I wonder if she’s happy to swap email addresses , I’m sure my mum would love to speak someone who’s gone through this

[piglette in reply to Bubble-ml]

Yes she is in UK. I will ask her if she is happy to swap emails.

[HeronNS]

Very simple thing, but is she getting enough fluids?

[Bubble-ml]

She’s not great with fluids but she does recognise she has to drink plenty which I this she just about does with a bit of nagging .

[Hidden in reply to Bubble-ml]

Ice lollies or ice cream may go down if she likes them usually....??