LUPUS UK
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New Rheumatologist, but where to now??

I have been reading with great interest whisperits last post on his visit to the sleep consultant and also Twitchy's last CTD appointment. Both just show basically what a mess we are all in with regards to treatment and help as we fall helplessly between all specialities. It is the rare medic who sticks out his neck to be counted.

It is not difficult why many of us actually begin to wonder if we are clinically depressed as living with this is basically a nightmare. The myriad of symptoms are overwhelming and totally out of the conception of most of our friends amd family so we feel isolated and desperately clinging on to any kind of hope.

I joined this forum a few years ago and I honestly dont know how I would have survived without it.

I post very rarely as I have no brain anymore and even typing out something simple brings me out in a sweat with the effort.

But I thought I would write this update and especially to thank those folk out there who do post regularily about their journey.Their stories are a life line.

My variety of "thing" has always been seronegative something, Sjogrens and Lupus like.

It affects my pancreas , biliary and gastric system, Kidneys, Heart, Muscles and tendons, Eyes and mouth etc etc but also brain, big time!!! The brain is the scarey one for me as it is worsening and very like MS. Numerous brain scans have been clear so far though.My feet are permanently numb and I am now getting severe spasms in my foot tendons that are very painful.

I also have Addisons, adrenal insufficiency which was always there mildly for many years before steroids. This makes me prone to alarming drops in cortisol levels when under stress such as infections or falls and cuts.

Despite the negative bloods, I had a few years of remarkably enlightened consultants who kept each other in the loop and worked together on it. They are all retired now and my GP said, you don't get doctors like those anymore, everyone is too specialised.

I have been fortunate now to be given over to a good Rheumy at Glasgow Royal and am awaiting two more appointments with a cardiologist and gastroenterologist also at the Royal, at least I will be under one roof with some of the problems. My local area though is south Ayrshire and I only managed to squeeze into Glasgow area as I was previously a patient there with the pancreas problem. In Scotland now I was told by my GP that they are unable to refer to a different health board other than where you live.

Only a consultant is allowed to do that.

I had my first visit a couple of weeks ago and the Rheumy was friendly and positive and very much wanting to work with the other pair once I have seen them. All hopeful ,but will there be anything more they can actually do?

For almost four years I have been on a regime of three monthly steroi injection and oral daily Prednisalone.

Like many folk I am very drug sensitive and the oral steroids seem to make me have all the side effects of sweating amd flushing, yet not much benefit. The injection on top ,every three months is very helpful but the last four weeks until I get it are scary. And that is where the brain comes in, or not!!

I suppose it is what they call brain fog, but I feel almost out of my body , like an observer looking at this dumpling of a body stumbling about, bumping into things, dropping everything and forgetting absolutely everything immdeiately. It is like having no brain at all.

Organising a drawer , or packing a present brings me out in a total sweat. In fact a drawer or room cant be organised at all, full stop. I also loose the ability to read as my eyes keep jumping about, nystagmus , they call it ,so I cant focus.

This brain aspect, improves about 80percent within a day of the steroid injection and I become me again for a few weeks. The other symptoms improve only slightly.

The only time I had almost total improvement of everything was after an injection of dexamethasone injection, a strong steroid after a neck operation seven years ago. I was told this was too dangerous to try again.

I was unable to tolerate hydroxichloroquine as it went for the biliary system .

But, they all, even the present new consultant, warn me of steroids long term, of the dire consequencies I am cooking up for myself .

What on earth are we to do??? Without them I may as well not be here and most certainly would be seriously clinically depressed.

They have repeated all the bloods two weeks ago but all the immunology is not yet back, though the ANA is now more mildly positive than it was before. I didnt even know it had been slightly raised before as they kept shtum about it in case I got carried away and coming to wrong conclusions that I had something.

I suppose we are all heart sink patients all of us unless we come under clearly defined categories and positive blood work of the correct kind. Even Twitchy with her many areas of high blood results does not fulfill the precise criteria for decent and effective treatment for her Sjogrens.

It is all like a nasty Christmas board game and a total lottery for all of us here struggling with the hand we have been dealt.

But, on the other side of the coin we have this forum, with positivity and sympathy in bucket loads . Here is the real Christmas spirit where we can laugh and cry with each other and reach out into the abyss with hands joined!!!!!

All the very best to everyone here this Christmas .

Cutty xx

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Hi Cuttysark

Lovely to see you back on forum despite having such hard health problems to deal with!. It's a miracle you are not clinically depressed with all you have going on and it is specially scary when the brain is involved. Not nice for you as its something new!.

I'm hoping you will see a big difference in your care having all specialists under one roof and they will come up with a more long term treatment for you rather than the steroid injections. You badly need the Gastro referral to complete the picture so I hope you hear soon. It can feel as if we're caught between a rock and a hard place too much with our symptoms and treatments making it hard to deal with!.

My care has improved greatly now that I have my specialists in same hospital talking to each other. They're doing it now because of colitis problems!. Takes a lot of worry away and if you can hang on I think given time you will see this benefit for you. Also it takes a while to establish a new relationship with a Consuktant and you've had the added worry of having to meet new specialists several times. Thank goodness it's gone well and they want to help you. I couldn't agree more about the benefits of this forum!. It's been a life saver for me as it helps to know we're not alone in our suffering!.

Hope this helps and you have as good a Christmas as possible. X

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Thanks for being so positive as always Misty.

Yes maybe the gastro referral will help things along. I did like the initial visit to heart man too but his speciality is microvascular angina and coronary artery spasm and he did admit he had very little experience of treating patients in cardiology with steroids.

Just shows there can't be that many folk out there with autoimmune related heart disease. When you have something yourself you can't believe it is rare!!

He was a good listener though so fingers crossed for next appointment. xx

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Hi Cutty

It is a rare problem thankfully in cardiology but that doesn't help us when we need there help. My Rheumy has been the one dealing with mine , cardiology I saw once in outpatients after hospitalisation and then that was it!. Back to GP but they'd see me if necessary again!. Glad you are going to him again despite him being limited in help. Glad he was easy to talk to. My GP has said I'm his only patient on colchicine for heart not gout which it's usually prescribed for!.

I should have also added that what makes it specially hard for us is where we've developed other auto - immune illnesses on top of lupus!. I thought lupus was enough until colitis and other things came along. Really changed my life like your developing addisons has really changed yours!. Thank goodness we can relate and commiserate on here!. X

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Hi Cutty, I can relate to your post, I used to be south Lanarkshire, took Ill at a friends house (now my hubby) went to his doc (north Ayrshire) was sent to Irvine central to get bloods done, it was infectious disease unit and I went there for a year constantly to get bloods done as they were all abnormal but they didn't know what was wrong. I eventually moved down to Ayrshire and am attending RAh, have been sent to inverclyde, vale of leven so my notes have been everywhere. My main rheumy has tried to get the bloods from Irvine central but they have gone missing which I think would have given them a clue maybe what my first illness was, I came away after a year to be told I've had a virus. Five years later all I've been told I have an overlap of illnesses and I've been labelled with MCTD . I defo think I'm getting clinically depressed now, I've had enough, I've been put on hydroxy as I've been on too many steriods over the five years, I have been told by my rheumy that the sickness and upset tum is not caused by hydroxy and to keep taking it. I'm still not sure bout it but waiting to see a gastro doc now. I hope you have a lovely Christmas x

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Thanks for telling us your story. You have had an awful run around with the different hospitals and then them losing your original bloods!!

Easy to blame a virus on everything but now when I relate back to childhood, am 64 now, I can easily see the signs of it all beginning way back then.

I had 4 kids and for some reason ,maybe hormonal, I improved over those years .

Everything rushed back with avengence at 45 to 50 and menopause time.

Hope you feel a wee bit better over Christmas. x

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Hello your post sums up a lot about how my experience has been.Thank you Jane

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Thank you for posting, yes a lot of us in the wilderness either in the past or still are, wishing you a good christmas, Lou xx

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Thanks Lou and Jane. It really does help to know there are others just like us and we are all from the same planet.!!

So often I just get so angry when so many folk like us are dismissed as health obsessed or over thinkers, just because the science has not yet caught up with us.

I had a Gp for twenty years who was fantastic as was my old Rheumy, trouble is how long do we have to wait for the research that will bring us help?

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A lot of talk about UFO and alien life in the papers at present. Maybe its us and we just dont know it. lol X

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Many thanks for posting dear CS 👏👏👏👏 ...am so glad you found The Right moment when you could put this 🌟🌟🌟🌟🌟 post together. Many months ago, i had to pause active participation here on forum because one aspect of my health had my chronic neuro cerebral symptoms flaring so much i couldn’t string words together...this is extremely depressing and i am hugely feeling for you. Even when i can’t participate, i do come here though to read everyone’s posts...for the reasons you’ve given...there is something vvvv special about this forum...it’s the best of all the different forums i attend for my comorbidities. I’m so glad you’re here

Your courage in the face of so much extremely debilitating and painful illness over so many decades inspires me to keep going. Every detail you’ve included helps me & others to see our way to better understanding our own multisystem issues and how they interrelate + respond to our combined meds. For me, the early years of treatment were bewildering, especially re the risks-benefits of these powerful meds...now i have a better grip on all this, i feel i can really appreciate fully the way you’ve explained your situation: you’re giving us a masterclass in how to grasp one’s own complexity. Your post is one of THE greatest Christmas gifts ever 😍: thanks again!

Wishing you and yours a beautiful Christmas and New Year

😘🍀😘🍀😘🍀 coco

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Hello Coco, I just want to wish you a very happy Christmas and hope next is a better year for you and for everyone here, we can hope can’t we?! Also to thank you for your support on here, it’s meant so much to me, what would we do without this forum!

Anyway I hope you’re able to have a really nice time.

Sending you lots of love and warm hugs🤗

Diane 🎄🌺☃️Xxx

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😍 am so happy you popped up diane...am wishing you & yours a very happy, merry christmas and a better 2018 too 🕊🦄🌈🌻🌙✨hope things are going “ok” at your end...we’ve upped my daily pred which is helping lots with things, alongside the other stuff my consultants have put me on...so am feeling more “ok” than i have in 2 years...so doing a lot of this: 🤞

😘🍀😘🍀😘🍀😘

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Thanks Coco 👍🏻🎄🐿🧚🏻‍♂️😘😘xxx

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A wonderful post cutty. Thank you, and I can only hope that somehow your journey becomes easier. Yes indeed, this forum is such a good and caring shelter from all that's going on x

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Yes indeed Lupi, this place is a shelter for us all.

I hope you are managing a little knitting still. My newly recovered brain after the injection is enabling me to be clicking again. I have managed a wee poncho for my grand daughter but she is only almost two, so the perfect size!! X

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I can do mindless knitting (garter stitch blankets) as long as I vary the yarn and needle sizes for the sake of my hands, but nothing complex at the mo.

Dog cowls are a fairly good size for me though.

I spent a little time a couple of weeks ago carefully packing the best of my baby and toddler items in my "Grandma's Hope Chest". Just in case I ever become one and can't do the fancy stuff!

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Yes I have done dog cowls too and a few years ago a little coat for my sons whippet!

They always have lurchers and also have a saluki now, nice long necks for cowls!!

But I do love mindless garter blankets, my son swears by them to keep his feet toastie at night!!

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Everybody loves a garter blankie. One of life's simple pleasures 🌈

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Thanks so much Coco for responding. You have been the central support for us all for so many years and we all totally understand your need to pull back a little now. But we all also know you are present every day reading about how everyone is doing ,and willing us all ahead in spirit.

Your responses have always been so positive and affirmative no matter what problem is laid out , and with a wisdom that only your years of suffering have given you.

It is an inspiration though, that despite such a complexity of comorbidities you manage to cope so well ,and likewise can help the rest of us.

Hope you have a very special Christmas and New Year.

XX

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You’re vvvvvv welcome....your every encouraging word means a great deal to me...we keep “trying”...and then the Festive Season comes with all those extra pressures and strains, highlighting our fragility....+ there, hanging over us constantly, are these haunting questions about our multisystem diagnoses and treatments...l can feel migraine & vertigo flaring just thinking about this....hence my post yesterday ranting about Festive Season coping strategies 😆...this life gets to us all....it’s wonderful to know we’re weathering this together XOXOXO

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Just enjoyed reading the comments on your Festive Coping strategies!!!!

I think I am now allergic to all communal social interaction involving eating!!!

I am gluten free witha wheat sensitivity, but that is the easy part. Most bought gluten free food is stuffed with fat and other evil extras that finish off my pancreas and biliary system. I can't tolerate virtually any protein and it will be most interesting to find out what my new gastro makes of it all when I eventually see her.

My last outside meal was a chicken mayo sandwich on the Calmac ferry to Arran ten years ago and a month of flaring pancreas after it. Now I travel with bananas and gluten free oatcakes. Food is Oh so boring for us!!!

My protein daily intake would hardly feed a mouse and I worry about long term damage to bones etc. Am just back from a physio I see once a month for ultrasound and she is worried about my sacroillac area which has flared again. I am back to the round rubber cushions for the bahookie!! ( Scots for bum!)

And yes I am terrified of everyone ! It seems we have to air kiss, no touchy at all!!!

Christmas certainly is a major challenge , but then winter would be pretty bleak without it ,so we have to be prepared .

Just like holidays too, major polar or jungle expeditions come to mind with regards to preparations when we venture more than 50miles from home! X

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"they all, even the present new consultant, warn me of steroids long term"

What sort of dose of pred do you need? Is it not possible to dispense with the less useful oral pred and work just with depot steroid shots? And in the context of the level of dose this may be interesting:

medpagetoday.com/rheumatolo...

If it is low enough - the long term risks are nowhere near as bad as many doctors think. And if, in the meantime, it gives you some life back - where is the real problem? It is all very well saying the longterm consequences if you keep taking them are x,y,z but if the short term consequences are that you have no life where is the point?

Have you tried dictation software? Speaking it all is easier than trying to get it down in words via your fingers...

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This is excellent! Just the info I need and a very illuminating article!

To be honest it is the rheumatologists who go on about the steroids as being dangerous, the two gastros over the last ten years both felt I was vastly undermedicated and wanted a trial of a larger depot injection.

I began about six year ago with the hydrocortisone 25mg for the Addisons but the levels fluctuated during the day so much and I woke every night so they tried the Pred tablets then the injection was added.

So 4 years ago I began 10 -12 weekly 80 mg depot medrol injection plus 5mg Pred. After gastro retired Rheumy put me down to 2.5 Pred plus the hydrocortisone as I needed, usually about 15mg per day.

My old gastro felt I was not properly absorbing the oral slow release Pred tablets but the uncoated were impossible due to chronic gastritis despite PPIs.

I hope that when I meet this new gastro she will have a better answer for the steroids as I know the injections can he better at 125mg. I had no side effects with the Dexamethasone injection aafter neck op by neuro surgeons but Rheumies would not consider it at all.

I still have scary episodes of similar to adrenal crisis if I hurt myself, eg stabbed by a kitchen knife attacking cucumber wrapped in the plastic!!!! Husband had to feed me hydrocortisone tablets and lucozade all the way to A and E with bleeding hand. I just wanted hand patched up so didn't mention the cortisol . I had been warned by Addisons support group that hospitals haven't a clue how to treat adrenal crisis. Fortunately I averted it by increasing the cortisol, my GP agreed with all this later.

I feel my steroid levels are frequently all haywire. I saw an endo five years ago who diagnosed the Addisons but they are few and far between. I possibly need to see them again. Maybe I will get the chance when I see the new consultants shortly.

Thanks so much for your help. X

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I completely get where you’re coming from Cutty and the brain thing ugh I hate it, you described it as though you’re out of body, I always describe it as if I’m not really here and everything feels far away and distant, it’s so unnerving! So yes you’re spot on it is like being ‘out of body ‘ ! Have you had a brain scan?

Like you I’m really sensitive to so many drugs and didn’t feel right on steroid tablets, the good thing about them was the muscle and joint pain was so much better but my brain was even more weird and I was even more spaced out! Now they won’t let me have them at all, long term side effects and all my pain is back, like you say what are we to do?!!

Despite everything I hope you’re able to have a pleasant Christmas...

Holding hands across the abyss🤝....you’re not alone.

Diane🎄xxx

Btw, I’ve been flipped backwards and forwards from UCTD to Fibromyalgia to Cutaneous Lupus to SLE and now back to UCTD with a new diagnosis of CREST! 😫 x

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Gosh Diane what a time you have had with the conflicting diagnoses! I do hope they manage to find a treatment to help you and how unfortunate the steroids had the severe side effects.

I have had three brain scans over eight years as I have always had extreme muscle weakness in heat, such as a bath or swimming pool. My legs start to tremble and give way. It seems this is suggestive of MS so they had been looking for that for years but thankfully no sign of it. Instead it seems to be part of this other"thing" instead.

The steroids help dramatically with the brain fog effects and vague out of body feeling but I still cant get hot or the weak muscles return.

Has helped a lot to know there are more of us out there!! X

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Me too: my version had the NHS testing me for MS in the mid 1980s... due to persistent vertigo, cognitive impairment aka brain fog, neuropathy all over my bod including foot drop etc. I tested neg. so the NHS just dumped me back on my GP ...where i was too naive, isolated & submissive to know i deserved more...for another 2+ decades...i wish i could forget all of that...but i really can’t.

Now daily mycophenolate & prednisolone are what help most to damp down those aspects of my chronic symptomatology. Isn’t it shocking that so many of us share these sort of manifestations? Shocking, but, even so, i admit there is something about your good company that helps me bear with my version of this! XOXO

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And likewise dear Coco, all your long journey has been given back to us in helpful loads.

It is so so good when we know we are not alone out there.

XOXO

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I like that..’the other thing’ that’s what it’s like isn’t it, nothing specific but ‘the other thing’ ha!

I had a brain MRI earlier this year that showed multiple white matter lesions and Ive had a lot of left sided numbness, which has actually been a better lately but I’m having another MRI and MRA in a couple of weeks. I too wondered about MS and my Gp refered me to a neurologist last July and I’ve been told I won’t get an appointment until April because there’s such a long waiting list! This was after a trip to A&E in June when my brain weirdness and numbness was so bad I wondered if I was having a stoke, they did a ct scan and said I wasn’t and that it may be down to migraine and that I must see a neurologist, well if I get an appointment in April that’ll only be 10 months I’ve waited, which is why my lovely Rheumy has arranged another MRI now rather than waiting for neuro!

Anyway like with you they will probably tell me it’s the ‘other’ thing😫.

Sorry you’re having such a horrid time, I do feel for you.

Hope you get more answers soon.

Wishing you all the best Xx😘🌺

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I too had a stroke like episode a few years ago, weakness down one side, blurred vision on one eye, jelly legs, faint feeling and unable to speak.

I had just gone out from the heat of the house into the garden when it was below freezing and talked for five mins to our neighbour with just a sweater on ,with no coat or hat!!!

It all lasted about ten minutes but the docs decided it was an arterial spasm brought on by the cold!!!!

I get angina all the time in cold weather and just had three bad weaks of it but is fine now it is mild again and I have had the steroid injection. The steroid always improves it, I think it must stop the spasming somehow!!!

All my MRis have been OK just brain shrinkage with age!!!!!!

Thanks for sharing, so useful X

.

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Sounds very unpleasant and scary...maybe we have Raynauds in our brains...😫🤔!

Glad the steroid injection gives you some relief, long may it last.

Thank you for sharing too👍🏼

Take care

Diane🎄🌺🎄xxx

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Oh yes I completely agree and sympathise with the brain issues too - the feeling of disorientation and unable to coordinate words or body.

I agree with PMRpro that if the steroids give us some life then the rare chance of future side effects is maybe worth it. I was very worried about them initially so kept dropping the amount against my rheumys instructions ending up with another neurolupus flare (and a big telling off from my rheumy 😬).

I’ve been told that because the lupus is affecting my brain and nervous system (which it sounds like yours is too?) I need to get my head around being on steroids forever (7.5-10mg). They make me feel so much better and like you say give me some (not all) of my brain back. My rheumy told me recent research shows there is little risk at these doses even very long term and the risk of a big nervous system flare is worse.

Hope your new consultants work out well and work well together!

X

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Thanks for your comments Melba . I so agree that the dangers of a really bad neuro flare are far worse a danger than the steroids.

Two weeks ago before the injection I was so disorientated I actually walked into the edge of my bedroom door and ended up with a big bruise between my eyes which my GP spotted the minute she saw me.

Now after the injection last week I feel quite normal on my feet, at least for a few weeks!

It is so reassuring to hear the results of the new research on steroid levels. X

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Not sure why I posted this twice - on holiday with dodgy WiFi!

Do you have trouble coordinating your body in crowds when you’re in a neuro flare? I find I have no idea how to navigate around people even if it’s just me walking towards one other person I’ll end up going from one side to the other to avoid them and then walk into them anyway!

And simple things like picking something up - I can’t seem to work out how to get my hand to just do it automatically and everything becomes so tiring and so much more effort. Do you get that too? I’ve accepted that I have limited memory and concentration but find the brain/ body mis- firing very weird!

I think the problem with steroids is that many doctors have a fear of them (and put that fear in us) because of the damage done in the past by huge doses. Some people were on 100mg for a long time but if we can get down to the lowest possible dose to give us the best quality of life without too many side effects we should hopefully be fine.

I say that but I still sometimes want to reduce mine! If you’ve got Addison’s do you need to take a minimum dose anyway for that?

X

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Yes I always need to take them with the Addisons. I use hydrocortisone if I feel a dip starting. It is very quickly absorbed but lasts just a few hours.

If you get sick and vomit you have to go to hospital for intravenous hydrocortisone . Fingers crossed I have always managed to avoid that so far ,but I have a medialert card in my wallet but am going to get the bracelet one as well to be safer.

I do get the bumping into everything too and avoid crowds . It is the misjudging spaces in the house and braining myself that is the most frustrating, you feel so stupid for hurting yourself!!!

X

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Oh yes I completely agree and sympathise with the brain issues too - the feeling of disorientation and unable to coordinate words or body.

I agree with PMRpro that if the steroids give us some life then the rare chance of future side effects is maybe worth it. I was very worried about them initially so kept dropping the amount against my rheumys instructions ending up with another neurolupus flare (and a big telling off from my rheumy 😬).

I’ve been told that because the lupus is affecting my brain and nervous system (which it sounds like yours is too?) I need to get my head around being on steroids forever (7.5-10mg). They make me feel so much better and like you say give me some (not all) of my brain back. My rheumy told me recent research shows there is little risk at these doses even very long term and the risk of a big nervous system flare is worse.

Hope your new consultants work out well and work well together!

X

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So pleased that you felt well enough to updating us on how you are doing and feeling & for all the interesting and insightful contributions made by everyone. I am in such early stages and I am learning so much here on the forum, especially the support given to one another, really nice read & really helps me.

I wake up with something new (pain/ache/plenty of tiredness, not finishing sentences) & wonder will it improve or get worse. You articulated well. It is hard some days to find the bright side of all this & not want to burden others with going on about it. I don't get it why should my friends & family understand what I am feeling.... Really appreciate this stream of contributions... Off to rest & slip into my weird dreams either medicine induced or autoimmune induced....

Merry Christmas... ML 🌜

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.... Not a bad post from someone with 'no brain' ;)

Merry Christmas to you & your family cutty.

Sarah x

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Brilliant post. Best wishes Kevin

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