I’m a 68 year old Mum of 2 grown up boys have had symptoms for 18 month pmr diagnosed approx a year ago and then Gca in March 2020.

[Tamtan2]

Hi everyone joined this group recently not quite should how it works but sure you will keep me right. I am in the dark with my Gca I have to admit I’m a bit scared with things I read and hear from other sites that’s why I wanted to join a credited group. Been on methotrexate for a couple of months had to stop taking it due to side affects abdominal pain and breathing difficulties haven’t had a blood test for 5 weeks so don’t know how I am doing without mtx except I feel much better I didn’t have a bone density test before starting mtx but wonder if my bone density requires such extreme medication. Can anyone help or give me some advise thank you 🙏🏽

[jinasc]

Welcome and pleased you have found us............ that sounds odd, but this is the one place that no-one ever wanted to need to find. Others will be along shortly and I see you have filled in your profile. One thing where in UK?

Please stop being scared of GCA - it is worrying when you don't know, but the best thing is that the pred has stopped you from losing partial or total sight and it is protecting your sight and will continue to do so until the GCA decides to take a hike.

Both PMR and GCA come when they want and go when they want. The aim is for you to keep the inflammation in control. Pred is your best friend.

When you were diagnosed with PMR, where you advised to look out for the symptoms of GCA? Was the PMR diagnosed by your GP or did he pass you on to a Consultant.

Did your journey with PMR include yo-yoing with pred - ie up and down?

Methotextrate, which can help in PMR does nothing for GCA.

Methotextrate is not prescribed to protect bones. It is a steroid sparing agent.

You need a Dexa Scan for bone density and if you need bone protection, then look at the Royal National Osteoporosis website and decide which one. If you have been prescribed AA in the meantime, be aware that Dentists are extremely reluctant to do work on your teeth.

Have you been given any other 'just in case' medication?

If you are having stomach problems............ask for enteric coated pred and also if you take your pred with a pot of yoghurt (pro-biotic if possible) you might find, like a lot of us that helps.

I had GCA (no PMR) for 5 years (now into 8th year of remission). Once you gain knowledge that is power.

Enough for now, come back and ask any question you want, no matter how small or stupid - everyone on here is a patient - some of us are in remission.

[Tamtan2 in reply to jinasc]

Thank you so much so pleased I joined this group seems like the6 are just trying me on everything. Why do I need alendronic acid and folic acid. I now feel able to go to my nurse and ask for a dexa scan and find out how my bones are doing and what would happen if I did not take methotrexate and alendronic acid. And stick to prednisone at 20 mg and see how I get on. How do we go about finding out how serious our gca is or what level We are at, is this obtained by our inflammation results.

[PMRpro Ambassador in reply to Tamtan2]

The folic acid is to reduce the adverse effects of methotrexate - mtx works by blocking a pathway that makes folic acid. So it must be replaced on the other days.

There is no real way to say how bad GCA is - being on enough pred will stop the symptoms and reduce the blood markers because there is no inflammation. But the level of the markers doesn't always relate to that.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Me in similar situation to jinasc in that had GCA only and have been in remission - for over three years.

You might like to have a read of this - you probably know some of it but hopefully will help a bug more - and as jinasc says come back at any time with questions, queries etc.

healthunlocked.com/pmrgcauk...

It can be scary, but that’s usually before diagnosis- once on the correct dose of Pred you’ll be okay.

[PMRpro Ambassador]

Hi and welcome!

I'm assuming you are on an appropriate pred dose for GCA? How are you doing with that?

[Tamtan2]

Only been reduces dose for a week now so cant really see difference yet I have been on prednisone for nearly 2 years firstly with pmr then January put onto 60 mg when gca suspected although I was told on 3 occasions I didn’t have it. Neurologist looked at my mri scan and confirmed it in March. Taken off methotrexate as I could not tolerate it side effects breathlessness and abdominal pain, pain gone but still very distended. Head still lumpy and tender. Alendronic acid weekly sticking feeling as medication goes down.

[PMRpro Ambassador in reply to Tamtan2]

Careful with the AA if it really is sticking as it goes down - that is the underlying reason for the problems they had with it originally.

[Tamtan2 in reply to PMRpro]

Thanks for letting me know about AA it scares me. Not getting any answers to my questions very vague I’m short of breath and have a distended abdomen due to ? Taken off mtx due to side effects after 8 weeks and going from 10mg injection to 20 mg in 8 weeks also alendronic acid should I stay on this or ask to come off. Then there’s the aneurism stories I have asked about this just want to know chances of this happening just need as much information as possible on this illness as it took over a year to be diagnosed with gca after having pmr for over a year previously. A,so was told I didn’t have gca 23 January then positive diagnoses in March. My ESR is 16 more blood due on friday am I looking out for inflammation score also I have never heard about adrenaline has a part in this also.

[PMRpro Ambassador in reply to Tamtan2]

Aneurysms are rare - and should be monitored if you have GCA. Adrenaline? Not particularly relevant at present, for get about it. You could try leaving the AA for now and see if your gastric problems improve. You won't crumble in a few weeks.

Are you on any other medication? A PPI for example for stomach protection?

[Tamtan2 in reply to PMRpro]

yes have been for years due to an ulcer lansoprazole 30 mg

[PMRpro Ambassador in reply to Tamtan2]

When did the bloating start? If you have been on that for years it shouldn't be that but introducing other medications does change things. I assume you were on injections to avoid the lansoprazole/methotrexate interaction that raises the blood level of mtx.

[Islandgirl50]

Hi . I was diagnosed with GCA/ PMR exactly 4 years ago this week . I was almost 66 years old , other than arthritis and a painful neck , I have always been healthy and am main carer for my husband . it was a great shock to me , I had never heard of this disease. I was immediately put onto 65 my steroids for a few days , then down to 62.5 ( matched my weight in kg) for a couple of months, also taking 20 mg methotrexate weekly . I gradually have reduced prednisalone to 1.5 mg , trying for 1 mg as from 1 st June . I also have omeprazole to protect my gut from the steroids . I gradually dropped them also once I got down th 2 mg . It is a tough journey , luckily I have a wonderful medical team and I believe the best rheumatologist in Australia . I did grow the moon face , some of my friends found that hard to comprehend , but all have been very supportive. I'm just telling you all this so you know even tho it is despairing at times, there is light at the end of the tunnel , it just takes a long time to get there . I am not in a rush to get off my pred now , although I did hope to be finished with them by now . My aim now is by Christmas , but hopefully for my 70 th in August . Stay positive and rest when you have to. 😘🌹🌹🙏🏼🙏🏼 Ps I was lucky , I have never got back up to my weight pre GCA , but sit around 57 , not always good to be skinny ,,

[Hidden]

Hello Tamtan2, I am relatively new to the Forum too. I was diagnosed last Dec 2019. Stated off with PMR, and put on 15 mg of Pred. Managed to get down to 8 mg when GCA kicked in. What were your symptoms of GCA ? I didn't have them all. I had tender head, occipital bone pain, and jaw cludication...also both sides top teeth ached. Then put on 40 mg, and currently down to 20 mg. Due to taper to 19 mg next Monday. I've decided to reduce by 1 mg monthly, as I still have some discomfort from jaw when eating, and two areas either side of my head hurts to touch....feels like I banged it on corner of kitchen door, but haven't.

Anne

[Tamtan2 in reply to Hidden]

Hi there my journey started 18 months ago it has taken me more than a year to Be diagnosed going from one dr to another then being told I didn’t have pmr but I knew I did then whilst in Thailand where I live 6 months of year looking after my grandchildren I had a problem with my eyes got new glasses came home day after coming home emergency appt with my GP after my eyes sighted deteriorated lumps on my scalp sore to touch couldn’t brush my hair or wash my hair after my go phoned to out of hours at local hospital put on 70 mg prednisone immediately was told I would receive emergency appt 2 months passed no appt and still on 65 mg prednisone I then rang my own GP got mri scan then ophthalmologist appt then rheumatologist apotheosis who said I didn’t have Gca but had Cateracts. Got a phone call weeks later to attend rheumatologist appt who said neurologist checked my scan and I did have pmr/gca Put on methotrexate and lowered prednisone every 2 weeks on this regime for which didnt agree with me so taken off mtx now on 20 Pred since last week. Also put on alendronic acid which caused breathing difficulties had a ct scan last week waiting on results on this scan. This is my journey til now I have had no bloods taken since April but have appt Friday if it doesn’t get cancelled as we in uncertain times at the moment. I know I have had a worrying 4 months trying to understand my illness and meds but looking forward positively to the future now I have joined this wonderful forum. Take care 🙏🏽

[Hidden in reply to Tamtan2]

Oh dear, you have been through it. So we are both on 20 mg at the moment. I think I'll taper by 1 mg on Monday next week. The ladies on this forum are wonderful, so kind and helpful. They all say taper dead slow and stop. I've emailed my GP to let me him know what my rheumy has said about getting a blood test asap as still experiencing some symptoms of GCA...have yours gone now ?

If he still refuses me a blood test I will have to go down the route I did last year and pay for it. My doctor was treating me for osteoarthritis, heaven forbid what would have happened and I listened to him and just kept taking the painkillers he's put me on....comes to something when we have to pay to be diagnosed. I'm sure GP's don't take PMR seriously, which potentially can turn to GCA. I only have the sight in one eye anyway, so very aware...nothing to do with GCA though.

[Tamtan2 in reply to Hidden]

I still have active gca, pain temples, lumps on my scalp, but bearable But I don’t know what level the inflammation is at will hopefully find out after bloods to morrow and hopefully tapering prednisone, hoping for good results. Take care let me know how you get on with GP good luck 🙏🏽