Adrenal crisis?

[Zofitmogelijk]

I do hope not boring you with again a post, but I feel a bit lost and scared Contacted the rheumy this morning, for the risk of adrenal crisis and she said “ O I am not competent for that please go to your gp and ask for a referral to an endocrinologe. The gp wanted me in April off Pred in a few weeks so I am not looking forward to that visit. Perhaps he has learned; this morning was in the newspaper an article “the time that the dr decides is over, patiënts must be Well informed and look at treatment options together” the article was from the governemental departement of health and care. So that is Progressive insight. It won’t be very different in GB will it?

[SnazzyD]

Hello, I didn’t know whether to laugh or cry reading this. A crisis is a crisis and telling you to go on the slow road to getting help is poor. How are you feeling now and did you increase your Pred?

[Zofitmogelijk in reply to SnazzyD]

Thank you for replying so soon, Yes I take 4 Mg instead of the 2 Mg and feel a bit better.

[SnazzyD in reply to Zofitmogelijk]

It is good you are feeling better. Have you managed to get an appointment for the GP? More experienced people here will be along I’m sure, to advise.

[SheffieldJane]

Well I am afraid that she shouldn't be prescribing Steroids then. What a stupid thing to say. If she preferred that you saw an Endocrinologist then she could have referred you to a colleague. Adrenal Insufficiency can be a life threatening thing if it leads to an Adrenal crisis. If you think you might be headed that way then I would call an ambulance.

I do see your dilemma. However it would be normal for a GP to refer you. As you say let's hope someone in your GP's practice has learned about PMR. Perhaps you could go armed with literature or print offs from this site. I know that PMRPro posted the guidelines for the diagnosis and treatment of PMR and GCA. I think Arnie did too, our doctor member of the site.

You do seem to be surrounded by incompetents Aletta. I am sorry. Please try not to be frightened. Did you bring your Pred dose up to 5 mgs in the end? Did you begin to feel any better? It occurred to me later that you might be incubating a virus which is another explanation for that bone cold feeling.

Get a GP appointment, be calm and assertive and ask that they arrange a Synacthen Test because you have a collection of symptoms that is compatible with Adrenal Insufficiency, that can be a consequence of taking Prednisalone, as he will be aware.

Let us know what happens. I feel cross on your behalf. Even if it isn't Adrenal Insufficiency you are making a perfectly logical request. Do you have anyone to go with you. I might even say that my Rheumatologist has said that I should see an Endocrinologist , because in a sense she has, and ask for a referral that way.

[Zofitmogelijk in reply to SheffieldJane]

Thank you so much for all this empathy. I took 4 Mg Pred ( the last dosis I felt Well with ) and wednesday is an appointment with the gp. No No one to go with me since my friend with whom I had a weekend relationship with left me 6 month ago, he could not cope with the New me not beeing so strong energeticand so on and he with symptoms of Asperger but not diagnosed. My children live far away. So you might understand the importante of

this forum, Thank God for that

[jinasc in reply to SheffieldJane]

Since Commissioning Groups came into being, one Consultant can no longer send you to another, it used to be they picked up the phone and you got an appt

Now all referrals to a Consultant have to come from your GP and if he says No............

Those groups changed a whole heap of stuff.

[SheffieldJane]

Yes I do see that the breakdown of an important relationship when you are vulnerable would make everything so much harder. On the other hand, isn't empathy the very thing that people on the Autism spectrum have great difficulty with? Not much help there was there?

I find this forum perfect at the moment. I haven't really got the energy to pursue more demanding relationships. I live with two quiet, nerdy men and I am happy to have them around, to one I'm a wife, the other a mother. My husband travels the country for his work and when my son is not working he occupies the top floor of my house, like a separate dwelling really, although he does appear at meal times. Everybody else is in Australia. So it is me myself and I, a lot of the time and for now that suits me fine. I love them all but I am my own full time job for now.

Never worry about bringing your worries here and often. It's the way we all learn about this condition we live with. Let me know what happens with your GP's appointment. I look forward to hearing from you, always. 🌹

[Zofitmogelijk in reply to SheffieldJane]

Thank you Jane for sharing a part of your life with the men. You are right empathy is not one of the skills of an asperger. Keep you informed and hope your investigations ( is that the word?)in hospital are positive

[SheffieldJane in reply to Zofitmogelijk]

Thank you for your good wishes Aletta ( if I've got your name wrong I'm sorry). I have the ultrasound on Thursday.

[Zofitmogelijk in reply to SheffieldJane]

Oké thumbs crossed Dear Jane 🙏🏻

[Zofitmogelijk in reply to Zofitmogelijk]

Making a mess of the message, it is Fingers crossed and thumbs up is nt it.

[SheffieldJane in reply to Zofitmogelijk]

Yes but we also say " everything crossed" and "chin up". So all of these for both of us! 😊

[PMRpro Ambassador]

Love it! My husband just said "That won't go down well in Britain will it!"

But I really am not impressed by either your GP or your rheumy - bit too much hiding in their little boxes for my liking! They DO need to know a bit about the drugs they are using - so that's a fail for your rheumy!

However - if you are feeling better on a higher dose I think that you have at least the first part of your answer even without a doctor's help. The next step is to reduce much more slowly and see how you get on - and if the same thing happens it is adding to the evidence. My feeling is that you have reduced fairly quickly - it just FEELS that way.

People who can't cope with us as we are aren't worth wasting your energy on. I know, it is hard. A friend has been told by the guy she loves to bits that he doesn't love her enough to move from Newcasle to Edinburgh - but he wants to "go back" to where he came from, Oxford, where he thinks there is a sense of community. He's looking for something that is not really there. And she is the one who suffers. Men!!!!

[Zofitmogelijk in reply to PMRpro]

PMRpro it is a pity the article is in Dutch and Dutch is still very different from German is it. 70 % of patients embrace the possibilities to decide over the treatment. I agree about being better off without a man that can’t take you as you are but I was fond of him though. Have a Good journey home tomorrow morning

[PMRpro Ambassador in reply to Zofitmogelijk]

We do quite well with spoken Dutch - but reading it is a bit different! I find it easier in Belgium - same language isn't it? Pronounced differently...

[Oldman-1]

Hi Zofit, I too have noticed a change in the approach of the medical services with documentation. However, this new onus by 50% on the patient has it`s down side. How on earth can a patient have upfront experience allowing a worthwhile prognosis of themselves. A discussion on the reaction of medication already used is useful, but if a patient is looking for forward advice, it`s entirely up to the medical services to provide the like. A second opinion is always beneficial.

[SnazzyD in reply to Oldman-1]

It only works if a) the doc listens to the patient and b) actually uses current and well established medical knowledge. Some of the stories I’ve read on here have made me wonder if some actually went to medical school. I hope there are more of those brilliant ones than there seems to be because people are more likely to talk about those here, through frustration.

[Zofitmogelijk in reply to SnazzyD]

Yes there is a lot of truth in your remark!

[Zofitmogelijk]

Hi “oldman” the Dutch governement aims for within 5 years have dr work like that. There has been a test with 30 medici and it turned out to be succesfull. Patiënts must do their homework, but in the end, if they want Some thing else than the dr - within reason of course - that would happen. Patients are far more loyal to the therapy as a result, so the way of working costs a bit more time but preferabel. Aletta

[SheffieldJane]

I think that the members of this forum are a good example of being informed proactive patients. Some doctors find this a threat to the kind of " God complex" that can creep up on them. I think the way we determine to come off Pred in a measured gradual way is a case in point. A number of doctors imagine that they will be stuck with a patient addicted to steroids for life. We see the tapering as another phase of the disease management.

[Longtimer in reply to SheffieldJane]

Yes, I am about to go and see my holier than thou rheumy for the last time (I will be telling him that!) he has sent a letter to me and my doctor to say, I don`t think this patient will ever get off steroids, because she is miserable with pain!......but he won`t agree that it is still PMR after 6 years.....he has added it`s not GCA or RA......I think he see`s me as a failure, and I don`t want to feel that way......why on earth would anyone want this disease.....

I`m telling him, I will be lowering my way!......and will only contact the hospital if I get GCA symptoms!..........

[Zofitmogelijk in reply to SheffieldJane]

Sometimes feel like acting as Rose; the bouguet residence , the lady of the house speaking, if gp wants to keep up appearances, we can too ( only Joking)

[Zofitmogelijk]

O M G that is a very bad way to treat a patiënt. He gave up on you, and you are still ill. Hope the gp is setting up a New plan including what YOU need. 👍🏼 Go for it, Aletta

[Longtimer in reply to Zofitmogelijk]

He gave up on me when my body didn`t respond to his fast lowering regime .....I was in lots of pain, and I knew as soon as he said, my patients do this (his regime) 1mg every month, even under 5 mg, and don`t get pain....if they do, it`s not PMR, so it seems none of us on here that have experienced what I have....pain when lowering too fast, have PMR according to the holier than thou one!!....I often wonder where he did his training....I know, cloud cuckoo land!......

[SheffieldJane]

No wonder you're miserable with a Rheumatologist like that Longtimer. They lose sight of what being a doctor is supposed to be about. Look at PMRPro, the most informed, knowledgeable PMR patient you are ever likely to meet. She has been sensibly using Prednisalone for about 14 years because sometimes that just happens to be the way forward.

What dose are you on now Longtimer?

I believe PMRPro tapers when she can and raises her dose when PMR flares.

I am currently stuck at 7 mgs. The disease needs to take its course and you need to be able to live the semblance of a normal life. There is no success or failure involved. I imagine your Rheumie's patients pretend they are ok in the end, that's all his attitude will induce.

I don't blame you for finishing with him. You might have more joy with another one?

Sometimes our difficulties can be traced back to a strange pattern of prescribing and steep reductions.ie his fault.

[Longtimer in reply to SheffieldJane]

I am on 10.5mg with some stiffness and pain.....but it`s tolerable. If I get to 9mg then when I`m in too much pain..... When he got me to reduce and try and come off pred, 1mg a month....I couldn`t turn over or get out of bed for pain.....I am not prepared to do this for him or anyone...it`s my body.....he offered me Paracetamol......how kind!......

I will lower with my doctor....I can`t be any worse off.....if I struggle too much, will go and see Rod Hughes, or Dr Dasgupta as mentioned on here.....but I fear they may all stick together after reading my rheumy`s notes.....I may be wrong.....Thank You

[Zofitmogelijk]

No Longtimer all rheumy s are different and the one you were seeing might See humans as machines. And now you choose to take control yourself will give you Some more balance you could benefit from, pmr is fond of stress!

[Longtimer in reply to Zofitmogelijk]

Quite right, thank you.....