Just thought I'd update you on my Rheumy appointment today and I could really do with your thoughts about it.
Expect the unexpected from the NHS as Whisperit wrote so well!. Had such a surprise to be seeing a different Consuktant as my usual one has decided to have Tuesday's off!. Nice work if you can get it!. He said he's joined the department as third Rheumy.
Anyway , I was pleased I had my symptom list and showed it him ( new strategy) and I asked about adrenal insufficiency. He said I'd only have a problem if I suddenly missed one day of no steroid. This I musnt do and he said if unwell and couldn't take my medication I must come to hospital for IV steroids etc. I also must have a medic alert bracelet so will get onto that!. It looks like I won't be able to come off them ever and they would like me down to 5 mg if possible as its regarded as a safer daily dose!. As I'm not well due to the flu jab and steroid reduction he said to stay on 7.5 mg daily for 6 months to see if next time I go I might be able to do another reduction!. At least on these lower doses there's more flexibility which pleases me.
No Dexa scan result available yet. He will chase it. All in all I'm pleased with how it went and look forward to feeling much better. Thanks for all your support , do appreciate it. Xx
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misty14
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Hi misty , it’s good to know your diagnosis so you know what you are dealing with , don’t forget to tell friends and even your dentist, incase you’re ever unwell . You are very matter a fact about it all , I really admire that ! Its great your rheumy is on top of it all and you feel you can rely on him . Best wishes for the start of treatment and i hope you feel an improvement soon , thanks for keeping us updated as it is an unusual condition xxxx
Thanks weathervane for your lovely reply. I just hope staying on 7.5 mg steroids for six months will improve my symptoms as just been poirly on a worsening basis for 10 months and am fed up with it!. I've been thinking about your anxiety post as I too have a racing heart and am on Bisoprolol but a slightly lower dose and get palpitations. It's slowed my heart rate down which it should and sorted them out. Are you on Amitriptyline as that can help with sleep and anxiety as its a relaxant?. I hope your feeling better and your skin problem has improved too!. It can be stressful being ill and juggling all the bits and you've had a lot of extras with your son's health and having to see your Aunt and do a long drive. Can't be helping!. Xx
Hi Misty14, I'm normally in bed by 9pm but, hah, the last few weeks sleep hasn't come...though camomile tea does reduce my BP (and should aid sleep), I've monitored it, just at the mo I'm drinking it so much, my bladder will wake me LOL...it tastes revolting, but with some honey it's fine...maybe a thought ? xxx
I'm a 9 pm in bed kind of girl too but do have a good read before sleep. I'll keep the camomile tea in mind but I think this should be for weathervane eek not me as I don't have problems going to sleep. Amitriptyline sees to that!. Keep well and thanks for your suggestions. Xx
Thanks misty, I really hope the treatment works soon as you have been through alot . I take lyrica but it doesn’t make me drowsy ☹️ My skin is well settled just achy and tired as not get a restful sleep . You never know what’s going to strike next LOL !!!
Thanks weathervane for your kind reply. I take lyrica too for nerve pain. Do you take it for that or anxiety?. I read recently it can help with that ironically for you being on it!. What dose are you on?. Maybe it could be increased. It's awful not sleeping properly because it affects next day so much. Hope it improves soon. Xx
Hi misty , i take lyrica 100mg x2 for pain, i had awful pain in my arms which it helps . I don’t want to increase it at the moment, it was increased when I slipped a disc but it never made drowsy. I hope i will get into a better pattern again eventually and this is a blip ! What dose of lyrica do you take ? There is so much in the news about the abuse of lyrica I think my gp would be sending me to rehab if I increased it LOL . If my sleep doesn’t improve i think I will try something homeopathic to see if that helps.
I take the maximum dose of lyrica so much higher than you without any problems so if all else fails you could ask to increase it but I understand why you don't want to!.Glad it helps you. It's going to be classed as a Class C drug from next April along with Pregabalin. I've been shocked how they've been misused!. You've got to be a bit careful with alternative remedies and our different drugs. You'd best ask if ok with rituximab as some also can boost our immune systems and make us poorly. I found this out for myself!. Lavender sprays for pillows can aid sleep. Don't know if you have Avon but they do one. Do hope your sleep improves and you have a good weekend.Take careXx
I promise to check things out if i do use alternative remedies 😀. I have a sleep spray but my husband hates the smell of it !! I don’t have Avon but I will check the spray on line. Have a good weekend as well , we are probably spending the weekend in my in-laws again, the house is like a sauna all the time it’s really drains you , i have to keep going outside to cool down!!
Sounds like he's a keeper, misty14! Solid practical advice, a reasoned approach to tapering and chasing up results ! Yes, expect the unexpected! And it sounds like a good dose of empathy and understanding has helped a little too ? Very pleased for you, hope you recover from the flu jab soon. xxx
Hi eek, thanks for your lovely reply. it's certainly all change for me on the doctor front Consultant and GP!. He certainly did listen which is great and didn't make me feel I'm making a fuss like my usual Rheumy can!. He's a great addition to the dept!. How's it going for you with ENT?. Xx
Oh Misty, thanks for remembering about my ENT saga! XOX
Off to the gatekeeper tomorrow, my named GP did a bunk so it's a young locum I'm speed-dating...I've written a letter with things My GP(s) should have done - collapsing nose ?...maybe ENT referral ? - so I can spend the ten minutes asking about progress on the rhinoplasty front, and also Why is active disease treatment on the Scottish Aesthetic Pathway and not routine treatment, if there's time drone on about vasculitis investigations again, and then requesting the proposed repeat prescription for sleep aids be on my repeat prescription LOL! zzzz xxxx
Do hope your appointment goes well eek. I had a new strategy for mine yesterday, giving them a symptom list and I really feel it made it easier and I got the treatment decision because of it!. He did look and noted some down so I'm definitely doing it again, so I think your notes will help too. It does concentrate their minds. Fingers tightly crossed for you. Xx
Thanks misty14 XOX..I'm nervous (the camomile tea's helping slow my heart a little 🌼) but I have it all in writing so I can't fluff my lines! Great tip, here goes! 😖 🤨🤪xxx
So pleased you feel it went well, misty. It sounds as if you were listened to, which is half the battle.
These days, I gather that you young people keep a condom in your purse/wallet, "just in case". My own version of this is a small blister pack of low dose hydrocortisone - although I don't think I would use it in the same circumstances (...but who knows?!!! )
My GP also prescribed an emergency injection kit of IM hydrocortisone, which sits in the living room. So if I ever feel a visitor has outstayed their welcome, I poin t to it and say, "Now, if you see me nodding off later, it's just possible that you might have to initiate the emergency resuscitation protocol..."
I'm very pleased Whisperit you replied as you've been so helpful with your knowledge of this!. Just think what I can aspire to with hydrocortisone kits!. 😊
It is so important we are listened to and not made to feel like a nuisance, there's nothing wrong!. I suppose what he said means I'm steroid dependent and do then have a problem with adrenal insufficiency?. Feel confused now!. I'm glad I can stay on 7.5 for six months, takes the bother of when or should I reduce away for a bit!. I've never been on 5 mg , 6 mg is my lowest!. Doubt I'll do it!. What's your lowest?. Keep wellXx
Thanks. You've been at least as helpful to me, misty. That's what we are here for, isn't it? The useage of the terminology doesn't seem to be very precise. I guess that's because it is a spectrum of "insufficiency". My understanding is that adrenal insufficiency is a spectrum. At one end is full-blown Addison's, where you will never be able to produce cortisol. At the other is normal functioning, where any suppression by artificial steroids is very quickly reversed as the steroids are removed. In between come those of us whose HPA axis retains *some* ability to produce cortisol, but where the basic feedback mechanism has been reset at the wrong level, or the production capacity has been damaged. We then can only expect to produce a maximum of - say - three-quarters, or a half, or a quarter of normal output. It seems all us "in-betweeners" might be given a label of "adrenal insufficiency", but clinicians seem to differ over how far they are willing to us the terms. My GP is very gung-ho and uses the terms "your Addison's" and "your adrenal insufficiency" indiscriminately. My endo avoids using any label and just talks in terms of symptom management. He is correspondingly vague (or "flexible", I think he would say!) about long term maintenance doses.
My take on the phrase "steroid dependent" is a purely practical one, rather than being a definitive ruling on whether you are truly dependent on steroids for everyday things. I wear a "steroid dependent" wristlet because if I'm in any accident or have sepsis, then it is highly likely that my sluggish cortisol production won't be adequate to cope and there is a real risk of significant symptoms/harms kicking in because of cortisol depletion. So a dose of supplemental hydrocortisone is much more likely to help than harm.
Both endo and rheumy aim to get me on 5mg maintenance. I'm not optimistic that this is feasible, as I spent nearly a year at 4mg, hoping that my adrenals would, sooner or later, kick in to make up the difference, but they never did, and that was a miserable year. Right now, I'm on 10mg, and would settle for anything in single figures!
Be very glad to hear if you or anyone else thinks I've got this wrong....x
Thanks so much for your reply Whisperit. It's really helped my understanding of this. It's another area sadly where we've got different opinions and approaches with doctors!. As if we needed anymore!. I don't think I'm going to get to 5 mg either. I've struggled a long time to get to 7.5mg. I'm sorry your stuck on 10 mg. it's tough knowing it needs to be lower but you genuinely can't do it. Thanks so much for your help and I'm glad I've helped you. It certainly is what this wonderful forum is all about. Xx
Do you by any chance have Dr Kyle? Had an appointment booked for Nov only to receive a letter to say that due to unforeseen circumstance it had to change date and also another consultant. My appointment was a Tues.
always bit weary about seeing someone else so have changed the altered appointment. Glad it worked out ok for you though xx
I do have dr k and was so disappointed not to see him today. I learnt that he's no longer working on a Tuesday and I wish I'd been told this when I booked the appt!. I saw the new consultant Rheumy they've appointed so there's three now . He was better than I thought and gave me good info. You can learn more seeing someone elseGlad you were able to change yours, so you've moved to dr k from dr m?. Good luck for your appt , hope it's soon. Will you be able to come to local lupus meeting next month?. Xx
Oh hollydebs, that's a shame as I'd said to the organisers it wasn't a terribly convenient venue!. I'll put another word in about it. Maybe we could meet when I'm better?. Xx
Thanks ge, for your lovely reply which I completely agree with. He's a good addition to our Rheumy dept and I would see him again as in some ways he was nicer than my usual Rhdumy!. He can make me feel I'm making a fuss and not really ill but this one didn't!. He even confirmed pericarditis!. Hope your feeling better and your ears are settling!. Xx
Good tip Louise a, I'll remember it. Your so right about wanting to avoid admission to hospital. I think that's an aim of us all. Thanks for replying and keep well. Xx
Hi Misty. I'm so pleased that your appt was such a success. I'm confused though. Everyone is talking about your new treatment but I'm not sure what that is? Is the Adrenal Insufficiency a definite diagnosis? I'm glad your symptom list was as well received as mine was - logically it makes life easier for them because at the very least, they can reel it off when dictating the letter.
My DEXA scan result came 48 hours after the scan so I'm surprised that yours is proving so elusive. I have a fracture risk of 6 - I don't know if that's good, average or bad!
So, when will you see the consultant again? Mine has gone very very part time too i.e. 2 clinics/week but I think he's doing more admin stuff.
Lovely that you popped up as I was going to pm you. Have you had any news about your treatment yet?. Rheumy's do take their time and its hard isn't it wondering what they'll say. I'm impressed at the speed of your dexa results. I've looked at an old one of mine and the figures were -1, -2etc and they said I was osteopenic then so I'd imagine 6 is really good and you've got strong bones!Your not on them permanently are you?. Weirdly sfter my Rheumy Appt I rang my gp surgery asking about the dexa results and got the surprise that they were there and I could make an apt to discuss them with my new gp!. Why they weren't available to my Rheumy's I don't know. Cant be good though as I've already got osteoporosis from the steroids and I cant walk the amount needed!. This different Rheumy said they are my main treatment and i'll be on them for life hence having to do medic alert!. I was really pleased my symptoms list was helpful so Ill do it again and im sure it was instrumental in him saying I can stay on 7.5mg for 6 months. Does take the bother of should I reduce or not away!. No new treatment so I was confused too!
Have you had the flu jab? Take care when you do as it can make you feel very poorly.
Let us know when you have news and thanks for your support. Take careXx
There are 2 results from a DEXA scan - an osteoporosis indicator and a fracture likelihood. Mine were both normal but I've always known my bone density to be pretty good added to which my weight bearing exercise is obviously helping.
I don't have the clinic letter yet but it's only been 2 weeks. This one may even take longer to arrive if he has been true to his word and discussed me in a team meeting. I'm hoping to get the green light for MTX but I remember the haematologist muttering about bone marrow depression a few years back and my resp consultant will also need to give his blessing so I'm guessing that nothing much will happen until my next appt with the rheumy nurse in a few months.
I never have flu jab anymore. I have such horrible reactions to all immunisations that I decided I was less likely to be ill from flu than I was from the jab. It's a risk but I think it's the right decision for me. Hope you're beginning to pick up from yours? I'll let you know when I hear any thing, have a great weekend xxx
Hi Clare thanks for the info about the Dexa scan. Didn't know there's two criteria. Your treatment outcome will take time as he's got to clear it with your other Consuktants. If it's MTX it's a good drug for the arthritis. It's hard waiting for answers but it will be good to learn he's done what he ssid he would!. I'm sorely tempted this year to say this is it for the flu jab as I feel so poorly!. It's a big decision you made but so right for you and I'm fed up with being so curtailed!. Do hope it's not too long for your treatment plan. Take care Xx
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