GCA for 14 years but still struggling.

[5lupins]

I am severely deaf but and saw consultant yesterday. MRI shows no reason for heavy head.

It feels as though I have a weight in it sometimes and now wondering if it is vasculitis. Bloods are always fine and I take 2.5 of steroid and 10mg of methotrexate. I am also loosing my hair very fast.

Going to doctors next week and just feel uncertain whether to to ask if I can stop the statins and Letrozole the breast cancer drug or maybe extra folic acid. I hope she doesn’t just say you are nearly eighty as I know this.

I have good GP s and still see rheumatologist each year. Hard to explain how physically beaten up I feel all the time.

[SnazzyD]

Hello, it’s horrible when something seems never ending. When you say heavy head, do you mean foggy or like it weighs like a canon ball? If it is the weight, whereabouts in the head, neck or back do you feel that? Do you sleep well?

MRI’s won’t show a biochemical upset, only physical changes. How have you been on Letrozole? I couldn’t cope with it as it impaired my short term memory and made me feel like I was in a fluey fog. I had to give it up nearly 20 years ago, much to the dismay of my doctors. Some people are fine with it. I know some find Methotrexate hard going too. Has the methotrexate helped in any discernible way?

It is your choice and nobody else’s, whether you take any particular medicine. Unfortunately nobody, not even a learned doctor can tell you what your personal risks are. When you go to the doctor, do you use all your energy to be an engaging good and brave patient? Have you ever shown your despair? Quality of life comes into the equation especially if you are 80, but if you make changes do one at a time.

[5lupins in reply to SnazzyD]

Thankyou snazzy. Don’t know where my reply went…..

I have contacted Breast cancer nurse ringing back after hols. I am just so tired of trying to be strong and positive some days.

Young rheumi. told me last year I have true iron deficiency so even though Hb always just above 12 I am going to start taking some iron again. Last Rheumi said he could not understand why. So I stopped.

I sometimes feel even though crp ok I was never on high enough steroids long enough and my body could do with more as often feel like I have flue and beaten up never been able to convince anyone and I do manage. Thanks J

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are struggling so… perhaps you do need a review of medication, and as SnazzyD says you do need to advise the GP how you really feel. We don’t always do ourselves any favours by appearing upbeat when we actually feel absolute rubbish! They need to know the true picture, and quality of life is paramount no matter what age you are.

Please let us know how you get on next week.. 🌸

[5lupins in reply to DorsetLady]

Thanks D lady I am a bit over the top when asking for help I think so I don’t break down. I have ranted a bit in reply to Snazzy so I’ll not repeat myself.

I will let you know what I decide. 👩‍🌾

[PMRpro Ambassador in reply to 5lupins]

Think you may need a bit of that rant to the GP so they know how you are feeling. We may be older but we also deserve a decent QOL.

[Rugger in reply to 5lupins]

I'm so sorry to hear this, 5L, and hope you can have a heart-to-heart with your GP after Christmas. New Year's resolution to let her know how you really feel. It doesn't matter if you "break down", as it shows your true feelings. I once spent a double appointment in tears with a lovely GP and after that, I had a wonderful patient:doctor relationship with him - until he went to Australia! 😭

By the way, I can't see the reply to SnazzyD that you refer to.

Best wishes to you for a better year next year.

[5lupins in reply to Rugger]

Thankyou for your advice. I have replied to Snazzy. Hoping you are keeping well. Glad you are under the good rheumi in Leeds. I met her once at at an open forum about ten years or more ago and she still sounds so very enthusiastic. Good wishes J.

[PMRpro Ambassador in reply to 5lupins]

Yes - oh dear, your rant doesn't appear to have posted!

[5lupins in reply to PMRpro]

Rant went where brain goes some days I guess. Into the ether…….

I do keep telling docs I am struggling but they point at bloods and age so…. I will try again next week. Wish the young Rheumi who found my inflamed aorta last year was still around. Not grumbling as I have always got appointments with gp or nurses. Good wishes. J

[PMRpro Ambassador in reply to 5lupins]

Bloods don't tell the whole truth and if you CAN be in a lot less pain with a bit more pred, then age has nothing to do with it. A lot of doctors trot out the rubbish that pred is a great painkiller - and so it is, if the pain is due to inflammation. Nothing else. I checked that with Prof Mackie and she was horrified that anyone thought it was a generic painkiller like paracetamol or ibuprofen.

[piglette]

There was this article in the press recently:

Bottle of wine a week could be better than statins for your heart

telegraph.co.uk/news/2024/1...

[PMRpro Ambassador in reply to piglette]

I suppose at Christmas they are unlikely to pick up on the increasing numbers of studies showing there is no really safe level for partaking of alcohol ...

[piglette in reply to PMRpro]

You mean they are all too drunk to care!!

[PMRpro Ambassador in reply to piglette]

That as well ...

[piglette in reply to PMRpro]

🤩🤩🤩🥳🥳🥳

[LemonZest11 in reply to PMRpro]

Oh boo!!!

[Nextoneplease]

Good luck 5Lupins ☘️

I reckon it’s about time you let the docs know how you really feel - and that they got their thinking caps on in response!

As others have said, you deserve the best QOL possible x

[5lupins in reply to Nextoneplease]

I will try. Thanks 🤗

[Hunter134]

I think we should feel the best we can at any age.I hope the drs help you do this.Dont worry bout crying it's very good for us I have done it many times at appointments.Let us know how you make out❤️

[5lupins in reply to Hunter134]

Yes you are right. Thanks for the encouragement.

[Angelsmummy]

Morning Lupins,I really feel for you,nobody deserves to feel like this and I hope that you can make it your New Year’s resolution to open up to Drs and tell them EXACTLY how you feel.I can’t offer much help ,but I too am a GCAer with sight loss in one eye,and it has been a rough time for me too.I have the heavy head feeling that you describe ,in fact I even paid for a private scan because of the wait and what it showed up is something called Straight Neck,there is somebody on here who has it more severe than me.Does it feel worst when sitting and laying down?It is awful,wheat bag behind neck helps and cradling head in a soft pillow works for some but I have a butterfly pilliw( memory foam with a deep indentation in middle that cradle neck and the sides support it Not saying it is that but maybe it could be.I too feel awful a lot of the time ,the bad days outnumber the good at present but I am clinging onto the hope that I too can go into remission like DL and say goodbye to this awful damn disease.Wishing you well and hope that the Drs can help you,chin up,xx💐💐💐😜

[5lupins]

Thank you for your reply. I am just trying to get on an even keel again. Sometimes I get weary of trying to stay ok but I usually bounce back. Well.,,,, maybe not bounce. My John would have been eighty last week and I just hit a wall. That’s the problem when you have loved a beautiful man. I was very lucky. Sixty years together.

Getting my act together for Xmas with sons.

Warm wishes to everyone.🤗

[Sophiestree in reply to 5lupins]

Can one of your sons go with you to the doctor so that they can rant on your behalf. You need to be heard. If you were near me I'd go with you !

[PMRpro Ambassador in reply to 5lupins]

I agree with Sophiestree - my husband and I got good results when we advocated for his mother. Her GP was just plain useless, not just lackadaisical with elderly patients, I and my infant daughter suffered due to his ignorance too!

[Angelsmummy in reply to 5lupins]

Morning Lupins,yep,the trying to get back to feeling ok or at least trying to appear that we are ok gets you down doesn’t it,As somebody said on here a while back,we might LOOK ok but inside we are not,physically and mentally.Days where one feels that enough is enough,cannot put up with it anymore especially if other factors are pencilled in to the mix.Trying to talk sense into our Pred heads that we WILL get better one day,but can it come quick enough when we feel like this?Just got to dust ourselves down and soldier on.Some days getting out of bed seems like a waste of time,just going through the motions of everyday living.But then thoughts turn to family,pets,what joy they bring,how they love us and need us.Please tell that bloxxx doctor how you are feeling,he is paid to listen,diagnose and give you support.Cry,it will prove just how bad you feel,and turning the taps on is a release for you and make him realise that something needs doing.Please let us know how you get on ,we are your virtual family to help you along the way .Enjoy the company of your sons and thoughts of your husband John who you obviously miss so much..A warm hug sent to you.xxxx💐😜