Hello everyone - Iv'e been here a couple of weeks, but just now filled out my profile. I'm beyond grateful for this community, - it's been a real comfort and source of knowledge. I feel less isolated and alone with this disease, and everything that comes with it. Thank you all.
I have a list of current symptoms and questions for the Rheumatologist tomorrow - is there any advice for me? It's all so new, overwhelming and much to come to terms with. I'm struggling at the moment while doing my best to try and look after myself. I feel like I have lost my life, and there is a lot of grief......
What might a Rheumatologist appointment look like?
Thank you
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JoysFollyNZ
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Write down the main points from your profile and ask them to repeat anything you are not sure of because it is difficult to remember everything when you are anxious.
Fingers crossed for you that you have a knowledgeable and sympathetic Rheumatologist which hasn’t been the case for several of us.
You should get a physical examination and a history taken, You may be sent for x-rays and blood tests - or you may not. It's a bit of a how long is a piece of string question - they are all a bit different!
Just make sure the rheumatologist doesn't try to taper you of the steroids too quickly.
There is a lot of wonderful support here and some very positive support for the down times when we find it difficult to come terms with this disease. We all go through those but we do find inner strength to keep going with a modified lifestyle. And for most there is remission in the future...just sometimes it feels a long way off. wishing you brighter days.
Hi and welcome. Could you take a friend along with you to your appointment? My husband accompanies me. It’s useful to have a second pair of ears. Alternatively take a notepad and pencil to write down anything important. I normally get a follow up letter outlining the main points but currently in the UK this can take up to two months! Hang in there things will improve🌸
Thanks Tiggy70, I took your advice and made notes. Then my water bottle leaked allag over them on the way home and I had nothing but a soggy mess in my bag
Sorry you have had such a tough time; you have had so much to deal with but it seems to have been a catalyst for making positive changes in your life.
This is extra hard while you have an illness and you have done so well; you should be very proud of yourself.
Starting with GCA and high levels of pred is challenging as you are describing now - the good news is you will feel better as you reduce the pred and when you get to the medium levels you will feel pretty much back to yourself and able to do much more. Try not to stress about the illness and taking steroids (as we all do at the start) because there is no point - it is what it is, but in a few weeks/months you will look back and see how you have improved.
Try keeping a symptom diary so you start to understand what is illness and what is pred.
Most people go on a low (not low) carb diet to keep the blood sugar down. Take the pred in yogurt to protect the stomach. Qi Gong would be great, but if you can't manage it at the moment look for somatic exercise; it is so gentle and keeps everything moving.
You will always get support and excellent advice on this forum. X
Viveka, thank you for this, it gave me hope. I was starting to get lost in the 'Is this my life?' and feeling pretty flat about life.
Re diet, I am doing Low Carb, and eating in a fashion that minimizes glucose spikes, Taking good care as best I can. Started meditating again as well, and I'll perserver with the QiGong, but the somatic exercise looks great too.
Sounds great - you're doing all the right things. I was going to mention that nearly all of us on the forum had severe stress before onset of illness, with the general theory that this leaves us more open to immune system going wacky. From personal experience it takes a long time to ease this stress away but that is part of the journey.
Interesting what you say regarding stress. I had figured that one out - my life became very stressful, for a variety of reasons when Covid hit. The abusive partner, although we had not been together long, was the last straw. I'm very grateful to have had the strength and wisdom to get out when I did, no matter how hard. I don't think we can every underestimate the relationship between mind and body.
Nothing to add to the good advice given but a warm welcome. I’ve read your profile and I think you are a brave and strong lady (even if you don’t feel that right now). Just sending best wishes and a hug. 💐
There are some 'Related Posts' that may be helpful (if not too late by now?) It is natural to feel grief at the loss of our previous health, but as you have seen, there is so much support here. Good that you have found us! I hope you will find peace to recover and gain strength in your own time and space. 🌻
Hi JoysFollyNZ! Welcome to the finest most understanding crowd! I could never have managed over the last 2.5 years without a daily contact. Good days and bad days, rant when you want to, we are all here listening to you and helping you progress. Keep strong!
Hi, I'm in NZ Also. Probably too late now as you've probably been or going to rheumatologist today. (Monday our time). I had a first visit with a rheumatologist last Monday and he just basically talked with me about my family history, my medical history, when troubles began etc. He had all my notes on the computer and had read them. He got me on the bed and felt all over me for pressure points, he examined my fingers and wrist joints. He took my blood pressure and gave me 2 cortisone shots in my shoulders for bursitis. He didn’t order any further bloods etc as I'd had them all done recently and had already had CT scan, x rays, ultrasounds done with DR. He did refer me to a physio. Hope that helps and all the best.
Sounds like your appointment went ok, feeling like you were "listened to" was great. I can't speak to your diagnosis as still on the journey myself with still no firm answers for me. I'm currently tapering off prednisone from a 30 mg per day dose by refucing 1 mg every 3 days, just started on 10 mg today. I'm up in the Manawatu region. (Slight Snow on the Tararua's at the moment, fire on)
thank you everyone for your advice, time and caring. I was really comforted by some of your posts, and regained some hope.
The appointment..... pretty routine as I can see now what others have said, Questitons, a bit of poking, prodding etc. What surprised me is based on my history and symptoms he does not think I have GCA. He thinks it is the Pred. He has me tapering fast -
down to 40mg 1 week
30 mg 1 week
20mg 1 week
10mg 1 week, and take it from there. He says that I would not be getting GCA headaches on the 60mg dose I am on. The MRI results showed extensive Arthritis in my neck, which ch I did not know about - no pain or stiffness, and he suspects this is the cause of my headaches.
I have had bloods taken, but my inflammation score (or whatever the correct term is? was not especially elevated at the start, when I last had them done.
Upon enquiry how to manage physical effects of fast taper, the answer was Panadol, Ibobrufen etc.
He did answer all my questions, provide good information, and I felt seen, heard and taken seriously, so that's good,
I'm relieved if his diagnosis is correct, and I will proceed as if it is. But I have a sense of disquiet as well. What if he's wrong? It could be that I have identified as someone who has this difficult condition, and it's just another transition.
I will drop to 40mg tomorrow and hope all is well, although he did indicate it might be 'bumpy.'
He's also precribed Amitryptilene. I just hope he's right about this.....
What surprised me is based on my history and symptoms he does not think I have GCA. He thinks it is the Pred.
Bit more information on why he thinks it’s Pred and not GCA? He may be correct about neck arthritis casing headaches, but did you try the other painkillers prior to Pred? And did they help?
As for bloods, according to studies - they vary - between 7-20% of patients don’t have raised markers…. so that’s not a guarantee.
Reducing o 20mg may be okay -ish... but brutal. But from there to 10mg is too much even if it's not GCA, with it, it's a recipe for disaster.
Like you, I’m not convinced, but time will tell… but do monitor things, and if you are concerned then you need more advice… what contingencies are in place? Back to him, or your own GP?
On another subject - my daughter lives in Barrhill, and have a niece in Ashburton… love the South Island… looking forward to next trip…
I'm sure I would have tried painkillers for the headaches, but my memory of them is 24/7 which would suggest they didn't work. They only stopped with the 1st dose of Pred.
I don't have the classic symptoms; tender scalp, temples, jaw claudation, vision issues. I did tell him about the pain in neck and down to my arm muscles, as well as more recent hip/thigh pain and sometimes morning ankles so sore I'm unable to walk.
I'm not convinced, but will start the tapering today. I'm nervous about it! I'm skeptical.
I do feel better after Amatriptelene last night - I had a great sleep.
Coincidental you know Canterbury I'm an Otago girl, but happy to now call this area home. Thanks for your valuable input
Painkillers did absolutely nothing for my GCA headaches either… and like you the Pred did - but it took a couple of weeks. But some of that could be due to sight loss and brain adjusting to that…
Have a cousin living in Otago area as well.
Canterbury is beautiful -but Akaroa is a great favourite as well…
"He says that I would not be getting GCA headaches on the 60mg dose I am on."
He can't say that - some people need 80mg or more to manage the headaches.
"was not especially elevated at the start, when I last had them done"
Up to 20% of patients do not have raised markers at all, not having "very" raised may simply have been it was too early for the them to have risen far. It happens.
My symptoms were different to yours, eg no bad headaches, but raised CRP and ESR, also prominent temporal arteries, so there are no direct comparisons. However I was also told I didn't have GCA and reduced from 40 to 20 in a month, then a much gentler taper of 2.5 per month or quicker if no symptoms. I hit the buffer at 17.5 and rheumy changed mind and said I had it. (To be fair to him this was during covid and he didn't have full info at the time).
I'm saying this cause the quick reduction over a month was not too bad - a bit disorientating but high doses or pred are that anyway. I was just so pleased to be getting off the pred.
The bit that would concern me more, going on tapering guidance, is 20 to 10 in a week. That sounds bumpy indeed!
The only thing you can do is monitor and record symptoms, as suggested below, and see how it goes. In particular watch out for any eye or jaw issues which are red flags.
Fingers crossed it is not GCA and your flirtation with steroids will have been brief.
Also, from personal experience amitrytilene can result in feeling dazed and disoriented so is not something I would want to start during a fast taper which also involves these sensations unless there was a very specific reason. (Some of the people on the forum take amitryptilene successfuly - my query is about adding it in a fast taper.)
Thanks for this Viveka - I will be in a state close to Paranoia, (and rightly so) as this unfolds. It's an unwelcome feeling of helpnessless when faced with the 'experts' and being obliged to follow their advice - until I don't!
I do keep a symptom diary, and I wil be hypervigilant, but hopefully not neurotic.
The Amatryptilene is to manage headaches, due to the arthritic neck issues, there may be nerve damage. I had one last night, and actually feel better than I have in ages, so it's a wait and see game there.
I have just read your profile and just wanted to say well done in taking the first steps to your recovery by finding your own place.... I hope you find the peace you deserve in it. It might take time, but look, after you. I am leaning on what Pro is saying re GCA. Make sure you keep a diary with the reduction and your symptoms/head issues.You might need a second opinion.
There's no rush for anything now. It's all about you. Virtual Hugs
That's a lovely post, thank you Sophiestree. I will keep a diary, and I will jump up and down to get a second opinion if needed. I'm feeling more and more skeptical, but don't want to talk myself into symptoms either!
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I'm an Otago girl, but happy to now call this area home. Thanks for your valuable input
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