TIA

[Touting]

I suffer with GCA I've never got lower than 20mg of pred I've just come out of hospital after having a TIA I'm 71yrs old such a shock , I'm nervous all the time, I'm on more medication now it's a wonder I don't rattle ,I lost my daughter a year ago she was 46 old to a bleed on the brain and my younger daughter is looking after them for now bless her sorry it's doom and gloom but on the positive my husband is taking good care of me and I I lovely family.

[PMRpro Ambassador]

So sorry to hear that - as if GCA weren't enough!

How long have you had GCA?

[Touting in reply to PMRpro]

It's been18 months and I'm still on 30mg of prednisalone and the side effects are cruel as are you well know .

[PMRpro Ambassador in reply to Touting]

I would suggest you might need to be looking for a second opinion - GCA is usually managed by rheumatologists and the impression I get is that your doctor has been trying to reduce the dose of pred erratically. That is an approach that very rarely works. Slow reduction in small steps really does reduce the risk of flares - and getting into a yoyo pattern with the dose is always a bad sign. Methotrexate isn't an outstanding approach in GCA though it may smooth reduction discomfort.

[Touting in reply to PMRpro]

I have got a rheumatologist but never had Faith in him so I had a private consultations over the phone he made some recommendation,a but nothing but I feel the GCA coming back so I'll be on the phone tomorrow

[alvertta]

All the best.

[Devoid]

You really do have so much to cope with. I was wondering if the medics have talked about tocilizumab as a treatment, I really struggled with the steroids side effects and methotrexate just seemed to make them worse, tocilizumab doesn’t work for everyone but my experience has been very positive and the fact that you can reduce the steroids quicker meant the side effects greatly reduce too . Take care

[baxternoni in reply to Devoid]

Although I am having a flare right now I am on this drug. After a year on it, a Transcranial Doppler showed no problems with blood flow. I did have to reduce the medication due to low white blood cell count. I don’t know if this is why I am having a flare. I have been off prednisone for about two months. I see my ophthalmologist doctor next week. Just my two cents worth. Take care and blessings.

[YuliK]

Touting you have my deepest sympathy for the loss of your daughter ....you certainly are going through such a difficult time.

Thank goodness you have your younger daughter and husband to take care of you.

Listen to the advice that PMRpro has given. She is much more updated than many rheumatologists. Her advice is usually 100% spot on.

Keep us informed how you are doing.

Hugs

YuliK 😷

[HeronNS]

I am so very sorry to hear about your daughter. It is a shock to a family. I was three and my mother 31 when she died of a brain haemorrhage (70 years ago as of the Ides of March this year). I, too, was well looked after by my aunt and her family for several years, and eventually my father remarried. Hugs.

[Jan_Noack]

HI, I agree with PMRPro in that you need to see another doctor and as soon as possible. I would suggest as well as a rheumatologist (which I would change if your current one is happy with leaving you on a high dose of pred with trying nothing else for 18 mths)..but also see a neurologist who specialising in blood flow in the brain. With your daughter having problems and you having GCA I think you need to just check all your blood vessels with an MRA (like a MRI but does perfusion) with additional software like time of flight or others that are even better to show the blood flow better or a CT with iodine. I have moyamoya.. it's rare as well... but there are other conditions and the GCA may be a part of it all. Best to rule out everything in yourself. I'm not trying to increase your worries, quite the opposite.. ruling out other things so you know you are being treated as best as possible.

[2013mayo]

Oh poor you,

What a thing to go through, a few months before I was diagnosed I collapsed, at the time the hosp emergency dept though it was a TIA but after testing it wasn’t, they put it down to a faint, it’s never happened before, a few months later I was diagnosed with GCA.

I do wonder if there is a connection.

I hope you feel better soon.

Take care

Xx 💐

[musicality]

I blame long term use of steroids on all my ailments including heart disease. They upset all the natural workings of ur body and cause untold havoc. It's so annoying to know there are other treatments out there with less harmful side effects, but only the favoured few are offered them. If ur under 65 u might stand a better chance! From a disillusioned long term sufferer! 😥

[PMRpro Ambassador in reply to musicality]

I've been on pred for heading for 12 years now - everything still works well. Better than without pred!

In the case of PMR there isn't much in the way of "other treatments out there with less harmful side effects" besides tocilizumab which hasn't been trialed in PMR and is not 100% successful in GCA. It also has some pretty hefty adverse effects if you are unlucky - which could also be said of pred.

[HeronNS]

I often read about total lifetime intake of prednisone and have no idea what that really means. As though there's an accumulative effect no matter how pred is taken, what the intervals may be between treatment, etc. But if one is young when first taking pred for whatever reason there seems to be more cause for concern because you'll have more years to accumulate that dose, whatever it is. ❓🤔

[Greensleeves]

I’m so sorry to read about your Daughter, bless her , her children you and all who loved her .

I understand how frightening it must feel to have a TIA .

I think if you’ve had CT scans to check your arteries and brain , neurologists should know how to keep you safe .

Get the right balance of medication.

You’ve got your lovely family looking after you.

There are some very special PET scans that check everything.

Take care and let us know how you are. Biggest hugs xx