First - so many thanks for all the supportive comments when I posted yesterday, you lovely people. You really helped me clarify my thoughts and go into today's appointment in a positive frame of mind.
The outcome was a mixed bag, which I am going to have to reflect on in the coming days and weeks.
My rheumy said he felt my auto-immune symptoms were as well controlled as he could possibly hope for. So no change in treatment there - just continue on hydroxy and low dose prednisolone.
He felt my most troublesome symptoms - extreme fatigue and the hot flush/shaking/nausea episodes were indicative of fibromyalgia rather than directly related to the autoimmune stuff (the first time fibromyalgia has been suggested as a diagnosis). So he's put me back on amitriptyline to improve my sleep, given me the usual bumpf about CBT and graded exercise, and said, "let's see what comes out of your neurology referral".
He hoped that "in a year or so" there might be an improvement in my functioning.
Writing that out now, I feel a bit deflated. It seems a bit like, "welcome to your new normal" rather than the active fightback I was dreaming about.
But maybe it's good - after all, he could have said, "Aggh! Your auto-immune problems are going nuts! I'm booking you a bed in ITU right now!"
*Cue "Life of Brian" chorus - 'Always look on the bright side of life etc etc...'
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Thanks for this news...well, done 👍👍👍👍....I like the way you're thinking.
And most of all I'm glad your rheumatologist is open minded enough to say "let's see" re your neurology investigation outcomes
My experience of initial years in the diagnosis & treatment process sort of fits with yours in that at first all I was prescribed were daily hydroxy + amitrip with rationed low dose pred tapers. It wasn't until nearly 3 years passing, (including 6 monthly lupus clinic reviews), had familiarised us thoroughly enough with my multisystem signs & symptoms, & demonstrated how these responded to that initial treatment plan + conscientious lifestyle management, that my consultant became certain I needed more. At that point daily pred + mycophenolate cellcept were added to my treatment plan ongoing...and I finally gained more quality of life ongoing. My impression is that this evolution of treatment plan fits with the British society of rheumatology lupus care guidelines (I've posted links to this doc on forum several times recently)
The fibromyalgia diagnosis....well, my blood is boiling too much to tap in what I think of that 😤. Our 🦉 PMRpro is more coolheaded, so I'll leave her to react on this subject ...am sure she'll see your post (I think her take on it is 🌟🌟🌟🌟🌟)
Well...😆...more like 40+ years journey through rediagnosis when you take into account my "lost" infant onset lupus diagnosis...which "journey" probably helped me feel sort of "easy" about the several years my lupus clinic & I needed to figure out the right daily therapeutic treatment plan...and if it hadn't been for the advice of expert patients here, I'd probably never have known how to push for revisions to my treatment plan...my experience does make me wonder how many patients get given v basic meds and are then just left to languish without "more"....
yes, i know you had a long history behind that. As you say, it does make one wonder about how many patients, especially those who aren't confident in dealing with medics and the system, spent their whole lives in unnecessary suffering
Exactly...e.g.I met a beautiful 30-something woman by chance at our cambridge lupus info event last autumn...she is working on her PhD, having begun her diagnosis & treatment process several years ago. She too had only been prescribed daily hydroxy & pred. She definitely needed more...was clearly suffering & struggling especially with fatigue preventing her from working effectively. She had been conscientiously following all lifestyle guidelines. I pretty much told her what I've told you about there being a point in this process when you can build an effective case for treatment plan enhancement. She was vvvv receptive. I think about her often, hoping she has got more help from her lupus clinic...
Hi I too was getting similar feedback from my Rheumy, because I didn't look a mess, skin clearish as I hide from UV and enough that I am on hydroxy. Couldn't get a clear answer on fatigue and memory issues when I am tired, etc. Wondered what only meds could help? She is doing more bloods, wish I asked what for, thought I would have more time. Know she checking my vitamin D levels on 800iu and if I have a wheat intolerance (seem bread is an enemy). I feel I am in a waiting situation again and just had a really physical day at work & can't sleep though I am shattered. Hope for my gp appt this week if she gets any news.
I Do try to live on the bright side of life, just thought I would get more from my quick visits to doctors...that tune will be with me all day today 😁. Thanks for sharing 😊. ML
The longer I am on this site, the more I realise how many of us are in similar positions. I hope your GP comes up with something - but please post the outcome in any case. Good luck! X
ML, just out of interest, were you prescribed the vit D by a doctor due to your sun sensitivity? Only I have never been prescribed Vit D despite SCLE diagnosis. Thanks. Wendy
Interesting post about your Rheumy appointment!. They can have a tendency to pin any unexplained symptoms on Fibro!. Seeing this a lot on this forum. It's tricky as you've had lots of tests to try to explain those nausea/ fatigue episodes and have drawn a blank!. Ruling out lupus or infection. Only time will tell what happens when you try Amitriptyline and try to do what they ask. I've had to do this also for many years to gain recognition. It isn't easy but if your symptoms worsen you have to ask to see them ealier, bringing their barriers down. I take Amitriptyline and it's helpful for pain, sleep and mood as its a muscle relaxer and anti depressant. I expect you'll start on the lowest dose 10 mg and one side effect to watch out for is a dry mouth. Can be troublesome!. If your ok on 10 mg the dose can be increased if needed. Good luck for your neurology referral, your certainly working very hard for a diagnosis and help. It is a paradox that we can end up desperate for something wrong to show just for relief and treatment. It's a long hard road!. Keep sharing. Misty.
Before Xmas, I paid privately for a physio to give me graded exercises at home, and as a mental health professional, I am very familiar with the "coping skills" and CBT side of managing chronic illness.
Ironically, I was on amitriptyline for about 2 years
prior to the auto-immune diagnosis (to ease post-hip fracture pain) when my GP thought it best to stop it!
So all in all, the review seems to have offered nothing new at all, other than, "get used to it". I am not ready for that.
I do understand how you feel as over the years I have had to fight and battle for help and treatment. It can't be easy for you having your life utterly changed by your health when you've had a career ironically one which you've treated other people!. Not so easy treating yourself is it or knowing what to do!. How long have you been ill?. Have you considered getting a Rheumy second opinion?. Just for your own peace of mind. Will you try Amitriptyline again?. As your feeling down its anti- depressive properties could lift your spirits, help you cope!. I'm on cloud 9 at the moment as yesterday had call from hospital with a cancellation for my pain injections for Monday. Welcome relief on its way but sad and true that our quality of life is so dependent on a hospital consultation or procedure I guess!. Thanks for asking.
Keep fighting and maybe the neuro will be a surprise breakthru, you never know. x
I've been ill for the past 18 months, when I noticed that I was getting very short of breath and struggling on walks in the hills that used to be easy. Then I started getting pains in my hands... and the rest is history...
I am now in the middle of making an ill health retirement claim, which breaks my heart - but I can't live on zero income.
As far as seeking a second rheumy opinion goes, my priority right now is to see whether my current rheumy is supporting my ill health claim. He was rather evasive when I asked him about this on Tuesday, so I have been on the phone this morning to see if I can get a copy of his report.
I've started the amitriptyline, as we all need straws to clutch, don't we? And I am a very compliant patient.
Great to hear your good news! Hang on till Monday! And let me/us know how it works.
It's really hard when you've had a life and career to suddenly have to cope/adjust to ill health!. Did you get that all important report from your Rheumy and did you like what it said!. I hope he is supporting you. Hope you've had benefit from the Amitriptyline and your neuro appointment is helpful. I'm painfree in my leg, just got strong backache that will wear off in next few days!. Great to get it done, thanks for wanting to know. x
Good to hear you've had some relief. Hope that back eases off too - its such a debilitating thing, and can be so disabling. Meanwhile, I am still trying to sort the retirement stuff, and expect this will be my main employment for the next few weeks! Thanks for keeping me in mind! x
Hi in response to Wendy about vitamin D, I was prescribed D as I had kidney stones & was advised to watch my calcium intake & I was concerned about my bone density if I stopped taking calcium & they scanned me & saw I was developing thinning bones, so osteoporosis (its in the family) and with no sun, my D can only come through prescription or food or both in my case. So SCLE diagnosis soon followed. Shouldn't all folks who cannot take UV light be on some vitamin D? Not sure what mg current level is and I am due for a other scan. ML
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Update and medication:
Diagnosis of lupus but feel completely fobbed off by my rheumy!!
Disappointing rheumy appt
Went to Manchester to see the Prof on Wednesday... 
Letter to my MP re Hydroxychloroquine
