remission gca?

[karools16]

Until I was diagnosed, by letter, and still no Endocrine appt, I was on 2mg Pred, and doing well. Along came the Synacthen test, and diagnosis of Addison's disease, and my world fell apart. Felt like I did, 12 years ago, when diagnosed GCA. It has been a rollercoaster ride. The stomach aches have settled. Maybe down to the probiotics I take? I usually get up 2x a night, but now 3-4 times, so sleep disrupted. I must stress; I had no fatigue prior to diagnosis, nor since.

I advise all of you on low doses Pred. Do not let your consultants wait until you are on 2/3 mg Pred, before sending you for this test. I think PMRpro has said, on 5 mg, I had no idea that my adrenal glands had stopped producing cortisol. If you think Pred is the pits, Hydrocortisone is worse.

I was in denial for a long time, and VERY VERY ANGRY! I refused to accept the diagnosis.I was going to ref

use the treatment as I had been so well, and then to be told this! Refusing would mean, possibly convulsions, coma, and even death.My gp wants me to learn how to self-inject as I could, when needed, have a long wait for a paramedic. I am not keen. Unafraid of injections, I would not have the presence of mind to mix and inject myself, when diarrhoea/vomiting....symptoms of adrenal crisis.

I asked the hospital when my appt would be and told...............25 weeks!!! I said it was unacceptable, seeing that 18 weeks was bad enough, and, usually, the maximum wait. Told to get dr to request earlier appt, and have done that. When I saw my dr, recently, and felt really awful, he said I looked well and noticed weight loss. At the back of my mind, I heard spoons, but couldn't utter it. Will tell him, on 6 Set appt, that it;s not my FACE that's ill!!

So, do I have GCA in remission? There is nobody monitoring either that, nor Addison's.Just left to get on with it. All I have learnt is from the internet.Yesterday, I was due to have an eye test, but cancelled, as have blood in left eye.

Finally, with all the above, I have and have had, for quite awhile, severe flank pain, due to kyphosis/what? I take prescribed co-codamol, usually 5 tablets, and morphine when at screaming point.I asked my dr for a referral to a spinologist, and he barked'they can't operate', and I barked back'I'm not wanting an op, just to get an opinion'. Just left again.At age 11/12, I was diagnosed with kyphosis, and my parents told the op was too risky. Heard it again 2 years ago and told same, but had a dexa, which showed advanced osteoporosis.I asked for another dexa, recently, as losing bone/shoe size. He told me I have to wait until April, as it has to be 2 years????????

The sun is shining. It's a lovely day in North Norfolk, so I'll end my saga and bring my washing in. Love to you all.

.

[SheffieldJane]

I feel really gob smacked by your post Karools and desperately sorry that this has happened to you. I also feel angry on your behalf about the neglectful treatment you have received , leaving you frightened and shocked. Your doctor sounds a right charmer. What does he do in his spare time, strangle kittens?

You know though, don't you, that you will learn to inject yourself like a complete pro and anything else you need to do to keep hale and hearty, because you always have. This is just a lot to swallow right now. I hope you have friends or family to support you.

[Hidden in reply to SheffieldJane]

It is a sorry tale of woe that was potentially avoidable by evem adequate holistic medical help. Not surprised you have been angry especially when told you look well by someone who has your medical record in front of them.

I do agree that getting injection sorted might be a bit of a faff but hopefully you won't have to. If you do experience crisis you may struggle once but once you recognise the signals of crisis you can hopefully prepare injection more confidently. I have started using insulin this year and have a lifelong phobia of needles but second nature now. I also have experience of hypoglycemia and trying to stuff glucose in a mouth that doesn't want it was scary. But now I recognise signs and treat early.

I really hope you get some support from your gp etc. May you need to try and find someone in healthunlocked/patient info etc who has experience of treating themselves with this condition. good luck 🌻

[karools16 in reply to Hidden]

Poopadoop, I do so hope I recognise the signs before going into actual crisis. I live alone, so am careful that I don't become ill for whatever reason.It's not the same needle as insulin. I have a pen when INR blood test done.

[PMRpro Ambassador in reply to karools16]

Have you thought of one of the telecare alarms?

nhs.uk/Conditions/social-ca...

They are easy to use if you need someone urgently and don't require knowing a phone number. It would be worth contacting your local authority and asking - especially as you do have this potential problem and live alone.

[karools16 in reply to PMRpro]

I live in a bungalow in sheltered accommodation. We have, until next Feb, support and care, from Centra..i.e. pulling cord system. It's being withdrawn, due to lack of funds. Many residents, esp. the older ones, are quite worried.Our concerns are being addressed.

[karools16 in reply to SheffieldJane]

Thank you SheffieldJane. I am not as confident as you re; injection. Sadly, no family in this country. Friends....hmmmmmmmmmm I seem to be invisible in summer and some daren't ask how I am. The good ones are far away.

My dr is a nice person, but I have felt, for awhile, he doesn't DO anything for me, esp, in November, when I went to hospital for COPD, and had asked for Pred to be increased. He sent me for a blood test, no results received, and a week later, I was in hospital.

[PMRpro Ambassador]

I'd just tick Like - only I don't!

I realise you are potentially in the back of beyond but if someone dials 999 and says adrenal crisis they do treat it as an emergency. But your neck of the woods does have problems...

It's only a pen I assume - they aren't difficult. Honestly.

Like SJ - not impressed by your GP! Is there any chance of a Bowen session or two? It's muscular and while it can't be cured it can be helped. You'd be a permanent fixture in the physio department here.

[karools16 in reply to PMRpro]

Yes, the letter did tell me to dial 999 etc. It's not, unfortunately, a pen. I asked if it was same needle as INR, and told 'no'. I will enquire re; Bowen. Think it's available in a town where I once went for Alexander Technique.Cost holds me back. pardon the pun!

[PMRpro Ambassador in reply to karools16]

That's a shame - mind you, the trouble is you have to be compos mentis to give yourself an injection and often an adrenal crisis patient is confused. If you live alone - no-one to see and give the shot.

I do appreciate the cost aspect - but at least with Bowen you know in 3 sessions if it will help, not a long term commitment like chiropractic seems to be. If after 3 session nothing's changed it very probably won't.But for many people there is a very speedy improvement.

jinasc, who's also recommended it, crawled in on somebody's arm and a walking stick in the other hand. After an hour she walked out and forgot the stick so had to go back for it!

[karools16 in reply to PMRpro]

PMRpro, that's very encouraging, thank you.It's a case of pain or pay, and pay is the way, for me, at present.

When I saw on the internet, what the injection entails, I just shrank. It's also knowing WHERE to inject it...I had an ESR once, when the nurse injected the NERVE, and I screamed blue murder. Fortunately, nobody was in the waiting-room, and I couldn't have cared less, if there had been. She refused to give it again. She's actually a very good nurse, but I think she was helping out that day.

[PMRpro Ambassador in reply to karools16]

I have had to inject myself (and OH) with anticoagulant on several occasions - into the fat of your stomach it is really very easy - remember the needle is very short, not the longer sort. Really only like having your flu shot. Thigh muscles are also fairly easy - they tell you where NOT to do it.

[karools16 in reply to PMRpro]

PMRpro, I know you are trying to be helpful and appreciate input, but do you have your warfarin in your stomach? I have a pen injection in a finger. I can be told, until the cows come home, where/not to inject, and I can put up with a lot, but this is an entirely different ball game to me. Mooooooooo.

[PMRpro Ambassador in reply to karools16]

No, not on warfarin, that was when I had to have "procedures" and you have to stop your usual anticoagulant and have injections of heparin for days on end.

In a finger?

[karools16 in reply to PMRpro]

Yep, in a finger, the tip. Last week on target 2.5. Go again tomorrow.

[PMRpro Ambassador in reply to karools16]

Aaah - your INR test you mean? Was being dense! Sorry!!!

I no longer have that - I was switched to a new generation anticoagulant just over a year ago when I had spent about 3 months having checks 2 or 3 times a week and the INR was swinging about all over the place for no reason and we couldn't get the dose right. These new ones work in a totally different way - and you don't have to check the INR. Bliss!!!!!

[karools16 in reply to PMRpro]

Oooooh! I had the wrong end of the stick!

[jinasc]

I am appalled, even if you are in North Norfolk that does not excuse anything that has happened to you at all. I could give your GP a large piece of my mind.

Do try Bowen,as PMRpro has said. It is not invasive and helps so many things. Just put Bowen Practioners in your search engine and give it a whirl...........it only takes 3 one hour seesions, spread over 3 weeks to see if it works for you.............they are not in the business of making money out of you...........one of the most honest set of people I have come across.

Many times postings have been made about the Synacthen Test.

So here is a link...................best done below 7.5mg and before you drop below 5mg.

pmr-gca-northeast.org.uk/as... Page 6 and written by PMRpro.

[karools16 in reply to jinasc]

jinasc,yes will look at Bowen, thanks.

[SnazzyD]

That's appalling. So sorry you are having to deal with all this.

Just a thought, does Norfolk have First Responders? I know Lincs does. If it does, it might be worth making yourself known to them.

[karools16 in reply to SnazzyD]

SnazzyD, I hadn't thought of the First Responders. My town has a private ambulance service, but private means paying. Thanks for suggestion.

[Doralouise77]

I'm confused (as usual 😜)....but did you not have any symptoms of adrenal fatigue?...only the test showed you were low?....please forgive me if I missed this or don't understand....

[karools16 in reply to Doralouise77]

No symptoms at all. That's why it's all been such a shock.