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🙋🏼 Hello my Lovelies: here’s a special video for Lupus Awareness Month

🙋🏼 Hello my Lovelies: here’s a special video for Lupus Awareness Month

For Lupus Awareness Month, our LUK forum friend the poet Shaista Tayabali (you probably know her wonderful blog: Lupus in Flight) invited me to join in making a video about the challenges of living with lupus. Shaista has posted this on YouTube. It’s also posted on the website of our Lupus UK Cambridgeshire Group...so some of you may have seen this already 😉

Anyway, here is the link to the first 1/2 of this video...our conversation is about: Lupus at Birth.

And here is the link to the second 1/2 of this video conversation:

With many thanks to Shaista and her Mum (who joined in and filmed the conversation)

Sending you all LOTS of love

😘🍀😘🍀😘🍀😘🍀 coco

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Hi coco just watched and listened to my childhood through you in the first half of your recording only difference is it was in mid wales in the 60’s and I was raised by a divorced father and sent to Drs on my own , and when test were mentioned he never got told , but rashes and joints and illness were always more severe and yes the sea water even now make me better . Will listen to second half in a bit but really interesting I am waiting for an appointment to come through to Gobowen hospital now as my gp has given up on Hereford I haven’t seen a consultant in nearly 2 years now , scary really that my gp and I are managing my illness through the guidance of here by what others are treated for .so tired of being unwell been flaring for months again now when will it stop !

Gentle hugs

Christina xx

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👋👋👋👋 young you, me & the 🌊 👭!

Am so glad you’ve got a really Good GP...please let us know how things go at Gobowen ğŸ¤žğŸ¤žğŸ¤žğŸ¤žğŸ€ğŸ˜˜

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Thank you coco. I've sent the second vidoe as a link to my sons and a cousin. Everyone is very supportive to me, but it's so helpful for them to see a discussion about the difficulties, especially in the way professionals treat us in silos. It puts things into words better than I can, and, in a way, might help son number two who gets very frustrated when he feels "they" aren't doing enough to help mum. I try to explain that there are lots of "theys" who don't join the dots x

Edited to add agreement with whisperit. One very positive thing about this rotten condition is the warmth and understanding we have with each other.

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😍 am loving the thought of your son number 2: so good to know he is really truly interested, and assessing the calibre of care you’re getting from the health system. Am so glad these videos can be useful! 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️😘🍀

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I’m so so glad that the second video may prove helpful with family - I’m definitely partial to the second video because I feel Colette and I really touched upon the heart of the complexity of this disease which is the sheer isolation within language and communication itself - with literally everyone we encounter except for our fellow community sufferers/survivors.

Thank you so much for watching and commenting - isn’t Coco the best? The easiest person to talk to and so incredibly supportive with every thought and idea xxxx

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I will am not brilliant at the moment the flair is getting me down at the moment ,but I have to say I have got my new bathroom in and patio is nearly completed and I now have a PA for 6 hours a week and a cleaner 😊 but builders in for 3 months on and off is no fun 😪

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Just the thought of builders for 3 months has me shivering....am so glad you’ve got some help too. Take care 😘🍀

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Gentle hugs to you too Christina, am so sorry to read about how difficult things were for you in your childhood - these things mark and scar us in invisible ways. Wishing you so much luck with this GP and the treatment you are having to experiment with xxx

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Easily the most intelligent and sensitive conversation I have listened to on the subject, ever. Thank you. The difference in tone and intent between that and the clinical "conversations" that I have had with the whole range of medics I've seen in the last 2 years is what struck me most. Part of it is about the sense of warmth, respect and curiosity that is contained in a peer-peer relationship. I dream of how things would be different, if that were possible to reproduce with our medical professionals...x

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Thanks so much...means A LOT to know this is how you feel/think about these, mike! Your choice of words is Spot On. I think many, many of us are sharing one & the same dream. For a start, as Shaista says, what about separate depts of autoimmunity (me: what about devoted to immune dysfunction & connective tissue disorders? Love hEDS etc to be included ), at leading teaching hospitals? 😘🍀

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Oh goodness that’s my dream too!! Although there are a couple of medics in my time that I’ve been fortunate enough to become friends with - but never before the first decade of illness!! Thank you for your lovely words about our conversation whisperit xx

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Oh Coco - what a brilliant "show". I so wanted to be sitting with mum and listening to you both. Hugs to you - and to Shaista and mum too. xxxxx

It should be required watching for all trainee GPs and rheumatologists in general - and in particular any doctors who are involved with lupus patients.

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OMG...you know, don’t you: it’s 6 years here on our wonderful forum with you & everyone else + in Cambridge with well informed, generous, supportive friends like Shaista & Shelagh that has made all the diff to me...so, really, as far as i’m concerned, you & everyone here were there in spirit sitting with Shaista’s mum that day 👍😘🍀

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Thank you so much PMRpro - we were very much inspired by the spirit of the forum that Colette brings after years of being on here interacting and sharing - so no doubt you were there, just as Barnclown says!

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Hello!

I'm up in London after attending the London Bridge Lupus Centre yesterday and my emails alerted me to your post. I was obviously very curious, as we haven't heard much from you recently and I've missed you.

Just watched both videos and am overwhelmed. Amazing videos for Lupus awareness. 💜

I'm wondering how I can get my lupus Support Group to watch these at a meeting. I hope everyone shares these as much as possible.

Thank you for sharing. And I hope this doesn't sound strange but I'm so proud to say, that's my friend.

We've all learnt so much from you here and you've helped so many of us on our lupus journeys.

A very big thank you and we'll done to everyone involved! 😍

Wendy xxx

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Oh wendy: i hope your time at LBLC has been constructive ğŸ¤žğŸ¤žğŸ¤žğŸ¤ž

Although i’m still on “pause” from active participation here due to feeling worn out by these past 2 years of the investigation saga into my abdo flare, i do pop in most days and have been avidly following your updates...i think you are totally Valiant: i’m always learning from you! I’m Proud to know you’re my friend too! 💐

I ❤️ the idea of your Group watching these videos...thanks so much 😘🍀

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Great to hear from you. I totally understand your need for a break from here. It can be quite time consuming keeping up to date here. I'm away from home at the moment and so only have my small screened phone. I will post about my appt when I'm home and can type more easily on my laptop. It was a very positive appt and both doctor and myself are very happy with where I am right now. It's half term hols for us, so we brought the children up with us this time and are doing a few sights. Thinking of you. Wendy x

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YAAAAAY 👍👍👍👍🥂🍾😘

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Hi Wendy39 thank you so much for watching - isn’t Barnclown the loveliest and best?! I lucked out meeting her that auspicious serendipitous day at the coffee chat group.

As for sharing with your lupus support group, as long as you have some mobile data or WiFi you can just watch on someone’s iPad or laptop?

And if you have any other ideas about conversations let me know!

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Brilliant Coco,Shaista (and mum)! And brave. Not an easy task but delivered with elegance and ease. Thank you for doing this xxoo

ğŸ‘ğŸ¼ğŸŽ“ğŸŽ“ğŸ’›

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Thank you dear PM...🤦🏼‍♀️ Can’t help feeling shy about this....I tried my best, but struggled to find the right words and missed some of Shasta’s cues cause was in a flare after returning from time away on a little hols (that’s not meant as an excuse, just an explanation...after all: with lupus, when can we truly be “on form”?)...but, regardless of how “well” she was feeling, Shaista was really well prepared, articulate and totally professional...she and her mum made it all feel so natural: they are both 🌟🌟🌟🌟🌟. Am so glad of your kind words 😘🍀

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Well dear Coco, you are your own harshest critic.....you were decidedly en point through out. No one likes seeing or hearing oneself on camera so put away those doubts and admonishes. Your brain worked overtime to push through the post vacay flare.

Bien joué ma chérie ğŸ’›ğŸ‘ğŸ¼ğŸ‘ŒğŸ¼ğŸŽ“

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🤷🏼‍♀️ Indeed i can be super self critical...from the outset, and the message fed us by nuns & priests at school encouraged my this 😉..it’s always been super easy to beat myself up cause illness means i’m super unreliable, letting everyone down all the time etc etc

the best thing is when really truly good, wise ğŸŒŸğŸ¦‰ğŸ‘©ğŸ¼â€ğŸŽ“ğŸ‘©ğŸ¼â€ğŸ”¬ğŸ‘©ğŸ¼â€âš•ï¸ğŸ‘©ğŸ¼â€ğŸŽ¨ğŸ‘©ğŸ»â€ğŸš’ğŸ‘¨ğŸ»â€ğŸŽ¨ğŸ‘©ğŸ»â€ğŸŽ¤ğŸ‘©ğŸ»â€âœˆï¸ğŸ‘©â€ğŸŒ¾ğŸ‘¨ğŸ¾â€ğŸ³ğŸ‘¨ğŸ¼â€ğŸŒ¾ğŸ‘©ğŸ¼â€ğŸ’»ğŸ‘¨ğŸ¼â€ğŸ’» friends (like all of you here) correct my self-view: THANK YOU 💐💐💐💐

One thing is for sure: i LOVED making these recordings with shaits & her mum, and i LOVE everyone’s appreciation of them 👏👏👏👏 😍

I hope Shaista makes many more of these conversations about life with lupus!

😘🍀😘🍀😘🍀😘🍀

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Well there are soooo many of us also hoping this will be a regular thing! Go girl! ğŸ’›ğŸ‘ğŸ¼ğŸŽ“

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🤗 Shaista: hope you’re ready for more! ğŸ‘ğŸ‘ŒğŸ¤žğŸ€

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Really interesting discussion, thank you. I liked the points about 'mild Lupus' and how unhelpful that categorisation is (when we are thinking, well this week, but next, or the week after?). And how SLE is systemic, so maybe we do have to assume everything is Lupus.

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Thanks! And, yes, for what it’s worth, i do think pretty much everything can involve lupus, e.g. when i was 7 i fell onto my head from height: the injuries included concussion & cervical spine damage. I suffered the repercussions all my life alongside my version of infant onset systemic lupus. I was aware of this injury, but no one told me about my lupus. So the SLE diagnosis was lost when i moved permanently to the UK at 21 years old.

For 4 decades the nhs preceded to give me good care in emergencies while blaming most all my multisystem signs & symptoms on the concussion & spondylosis. So, I spent many years lifestyle managing a go go while on daily prescription NSAIDs & opiate analgesics & PPIs & even clonazepam etc which made me feel like a zombie but barely reduced my so-called chronic pain syndrome...of course complementary therapists loved me! My husband, on the other hand, never stopped being skeptical...he has early onset crohns and understands diagnostic uncertainties/ambiguities

After my brilliant hero nhs rheumatologist figured out i have SLE in 2011, i had the great good fortune of discovering just how super effectively & magically my daily combined therapy lupus meds damped down my so-called chronic pain syndrome...and here i am hardly ever feeling zombie-like too 🤷🏼‍♀️

In my rheumatology clinic we’re advised that lupus inflammatory process is attracted to virtually any site of inflammation in our bodies. So, hmmm, i want to know: how can any open-minded responsible & humane medic claim that SLE cannot play some part in virtually any physical problem we have? Even my DES-exposure related internal reproductive organ birth defects are affected by my version of lupus: due to early onset secondary sjogrens interplaying with and aggravating my gyn conditions.

Gosh...you really got me going, treetop! This subject is v close to my ❤️😉😘🍀

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"how can any open-minded responsible & humane medic claim that SLE cannot play some part in virtually any physical problem we have? "

and that applies in ANY systemic a/i disorder (albeit to a lesser degree mostly) but it seems to pass waaaaayyyyyyy over their heads.

Mine is totally minor in comparison but this week I saw a different, quite young rheumy to get physio through the hospital system - and he indulged in some pretty complementary therapy which always leaves me feeling "better". It's a very Germanic thing i think - but every little helps and the side effects of such therapies are minimal.

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Well Said 👏👏👏👏

👍👍👍👍HURRAH for that approach to physiotherapy treatment! 😘🍀

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I agree, and it's very scary that they can't see it. They say blase things like "it's only affecting your joints etc." What we experience is very different. Pains everywhere, digestive problems, headaches, spasms, painful periods (as you say, some of which has miraculously gone with the SLE meds).

I have upper back pain that goes when I'm on 7.5mg and comes back again on lower doses. Doh!

It means we have to be alert and do the job of monitoring alongside everything else.

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We really truly do have to be on the job...the trick is finding out how to feel “well enough” to be able to consistently act as our own health care advocates. Back in the good old days, gps did their best 😉 at this job. But, now: how can gps manage this? My GP surgery admits it’s unable to keep track of everything involved in my complex case

I guess support organisations, and forums like this one, have kind of taken on some aspects of this job...alongside everything we do to coordinate and assess our “care”

This is a HUGE 🏔 subject...

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Maybe you'll start your own you tube channel? Could be quite a thing. Some people here, including you, are an amazing repository of knowledge.

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Yes: had been thinking Shaista could do something like this...am sure she’ll read your suggestion! I think many of us would do our best to participate...but i’m 64 and vvvvv much in the slow lane...

I agree: this forum is THE BEST i’ve ever attended: it’s FULL of GREAT people. AND the atmosphere isn’t competitive

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Getting Barnclown on YouTube was a vvv clever idea on my part don’t you think?! Am patting myself on my back 😂 Plenty more of Coco’s brain to pick especially on the subject of being our own health advocates and putting together the pieces of this giant endless puzzle of auto immunity (and everything else that accompanies our individual bodies)...

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I think it's much needed. People are fed a lot of misinformation and plain guff, and you need people with experience to listen to.

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You two make a formidable pair Shaista ğŸ’•ğŸŽ“ğŸ’•ğŸŽ“

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Yes..agree Treetop 👏🏼🌟🌟🌟🌟🌟

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"Only affecting your joints" - haven't they heard the song?

The connections are all the way from the toes to your head. Doesn't leave a lot of body unaffected. And pain has lateral connections...

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Thanks Treetop33 I’m glad the bit about ‘mild’ resounded wih you - it really is a bit disconcerting the way we are slotted in to mild/moderate/severe like cooking steak or something! It’s because of the treatment plans - which are offered in a hierarchical way - but doesn’t help our mental health at all!

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I know. I was incensed. Before medication I couldn't walk some days, and I have a young child and a job. That ain't mild. But you are right, it's just how they prioritise. Slightly less pejorative language might help e.g. stage 1, stage 2 etc.

Then again, I think they need to rename Lupus to sound less like a biblical disease and more like a medical one :).

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You are so right Treetop33 ! The only word that is non medical is Lupus and that’s the one we are stuck with! Systemic and Erythematosus are both illuminating and informative and medically relevant. The wolf is really not!

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SO TRUE

👍👍👍👍🌟🌟🌟🌟👏👏👏👏💐💐💐💐

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Love you Colette 😘😘😘❤️❤️❤️ Good night from across the way, and hugs for Badger too xxxx

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Love you too dear Shaista😘🍀😘🍀😘🍀😘🍀

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Yes! In response to me naming the disease... to a girl unknown to me was...’oh that’s the fake disease ‘ it doesn’t have gravitas. We probably should always say SLE then if asked give this unappreciated disease it’s full name.

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Hi Coco, I’ve just watched these and I can totally relate to eveything you say in the second one, I felt like I was sitting there with you both.

Thank you so much for sharing, it’s lovely to see you...😊

Sending you big hugs

Diane🌺💕xx

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😍 Many Thanks Diane: means a Great Deal to know you think/feel this way...you’ve been on my mind: am hoping you’re as “ok” as poss...sending you Lots of Love...hoping the health system is Stepping Up on your behalf

😘💐🍀😘💐🍀😘

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Thank you Coco that’s so kind of you to think of me, yes I’m one of the lucky ones to have a good rheumatologist and GP. It’s been a difficult year what with coping with this and all the other delights that life throws at you! One good thing my daughter got married in September and it was a beautiful wedding in our 12th century church and I managed to get through the whole day and the sun was shining.☀️YaY👏👰

I saw my rheumatologist last week and I still have the diagnosis of UCTD but now with my new symptoms this year which have All come back since stopping prednisolone 5mg that I took for 5months, he is saying that I have CREST syndrome with overlapping symptoms of Lupus and Sjorgrens. I have also been diagnosed with chronic kidney disease so I’m taking an anti hypertensive, he said I could try methotrexate or Azathioprine but he can’t give them to me until I have normal kidney function and he doesn’t want me staying on steroids long term. I believe CREST is the old term for Limited Sclerosis. So now I have something else to research, oh boy does this disease like to chop and change and morph into something slightly different each time I go to Clinic or maybe it’s the Dr’s take on it 🤔. So to date my diagnosis has been, UCTD, Cutaneous Lupus, SLE , UCTD and now UCTD with CREST! 😱

I hope you’re having a sunny SundayğŸ˜Ž

Big Hugs

Diane 🌺☀️🍁xxx

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🤗 Am Delighted by this VVVVV Happy News of the wedding - especially that you were able to really enjoy it all 👏👏👏👏🥂🍾

🤦🏼‍♀️ OMG: your diagnostic “journey” is about as complicated as they come...am so glad you like & respect your gp & rheumy...makes all the diff when things are this complex...am so glad you’re here sharing Diane 💐😘🍀

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Thanks Coco, I will admit I was quite anxious leading up to it because I didn’t know how I would get through it but I did with everyone’s help and understanding.

Oh btw I forgot to throw in the Fibromyalgia diagnosis that I was given after the first UCTD diagnosis! 😫

🌺🍁😘

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Has he REALLY good reasons for not letting you stay on such a low dose of pred when it allows you so much better QOL?

I know this was done in PMR patients - the author is a big cheese in the field - but he is concerned about rheumatologists who won't use long term low dose pred because they are worried about the side effects which he thinks are really not as bad as they are held to be.

practicalpainmanagement.com...

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Thanks that’s interesting, the Rheumy said he didn’t want me on them because my bp is high and my kidney function is low and because of long term side effects and that there would be less risk taking methotrexate or Azathioprine but he won’t consider those until bp and kidney function are stable.

At the moment I’m taking Perindopril for Bp, Plaquenil and Nortriptyline and have actually felt a bit better and less fatigued but trying to cope with the musculoskeletal joint pain and swollen painful hands, very painful hips, mouth ulcers etc , I still felt very unwell, my migraines and dizziness were worse on the steroids but they really helped my body pain, my body felt more ‘normal’ , it was nice to be able to get off the sofa or climb the stairs or go for a walk without pain!

I’ll be discussing this with my rheumy when I see him in 3 months.

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Am relieved you’ve got this appt in 3 months. You’re being v brave, as always...i just wish i could magic it all away. Am vvvv much feeling for you Diane...and vvvv glad you’re here + have got at least 2 Good medics on your side 😘🍀😘🍀

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Thanks Coco, I’m glad I’m here too even though I have been MIA over the summer but I have still been lurking in the background 😁 .

🌺😘🍁😘☀️xxx

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👍😍😘🍀

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My personal feeling is that if 5mg pred lets me live relatively pain free I'll accept that - I don't want to live longer in constant pain and disability. Surprised your migraines got worse - pred is sometimes used to manage migraine. My BP is high - so I have medication. And I have friends who have renal problems - and have been on far higher pred doses than 5mg.

Did you ever try less? Or is 5mg the lowest effective dose?

I'm sorry - I really don't get the concept that methotrexate is safer long term than a very low dose of pred. Especially if it doesn't work or causes mtx-flu for a day or two per week.

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That’s exactly what my husband said surely it’s better to be pain free and have some quality of life now, although the Rheumy did say occasionally it’s ok but then went on to say about the other drugs, tbh I need more info on methotrexate and Azathioprine as I don’t know an awful lot about them but from what I’ve read so far I think I’d rather have injections than tablets. I don’t tolerate many drugs so not sure how well I would take to either of these!

I did try 2.5mg prednisolone but it didn’t do anything for me the 5 seemed to be ok, I didn’t sleep well on them at all, now I’m sleeping better as long as my hips don’t wake me up!

Wouldn’t it be great to have just one drug that sorted everything out....job done ✅

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Changing times of taking it sometimes helps the sleeping problem and one lady found the pred no longer kept her awake when she took her calcium tablet together with a yoghurt before bed!

Eric Matteson's pred study really confirms what I've believed for the last several years: used properly and carefully it doesn't cause major problems at low doses and mostly they can be managed. And you are a long time dead - so I'll have jam today thank you...

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🤣 ha so true, I shall give this careful thought, more research, get my facts right and then I’ll have plenty of questions for my next appointment, thanks for your input, it helps alot 👍🏼🌺x

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I agree with PMRpro: at first rheumatology limited me to 3 x 4 week 10mg pred tapers to deal with any type of flaring mamifestations...but after a couple of years like that, i was able to convincingly argue that i was consistently much more stable on daily low dose pred (5mg is my therapeutic level). In my case, i just had to feel confident about arguing my case...and i needed 2 years experience of pred to feel confident about my evidence. A more experienced patient might have felt confident sooner than i did. All the official research and reviews i read say that 7.5mg pred or less is low enough to be relatively ok for daily long term care

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Hi Diane

So sorry to read your news of new diagnoses to make life even harder!. You must be worried about your kidneys but glad your getting good treatment!. It is unusual for them to be affected in UCTD but not unheard of!. I'm sorry too they've added CREST into the mix!. Mind you it shows how awful you must have felt, no wonder your life had ground to a halt!.

Lovely that your daughter got married and you all had a wonderful day. Must have been very tiring but so worth it!.

Do hope you feel better soon. Hugs X💐

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Thanks Helen, lovely to hear from you, I haven’t been on here much through the summer, life and all that, you know how it goes but like I said to Coco I’ve still been lurking in the background😬

The Rheumy told me my chronic kidney disease isn’t connective tissue related, hopefully it’ll improve as my blood pressure stabilises, I’ll have another blood test in two weeks so fingers crossed.

How are things with you?

Hugs

Diane🌺🍁xx

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Hi Diane

I'm pleased its not lupus nephritis and your doctors are keeping a good eye on your symptoms. My Mum's sister has something similar and once her high blood pressure was lowered by 2 drugs her kidney readings improved. She's been taken off one blood pressure pill now. Check up this Nov, bloods and blood pressure. I hope you will do well.

I'm having a flare thanks to the flu jab and its upset my colitis condition to the point that I've got low potassium which is not low enough for a supplement but enough to give me symptoms. Admittedly, there not as strong as I'm eating more potassium rich foods. Just wondered what you thought? Have had problems before and would love to feel less fatigued!.

TAKE CARE and glad your keeping an eye on us. x

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Well your auntie’s story gives me hope Helen, that’s good that things are improving for her but I’m sorry to hear that the flu jab has caused you a flare, I haven’t had one for about 14 years because it did that to me and put me off having it but I do know having the flu would be worse, my rheumy I saw the other week said I should have one, I was booked in for last Saturday but had to cancel, I have so many appointments and scans etc between now and Xmas I don’t really want to have it have a flare and end up cancelling any of my appointments, it’s really difficult to know what to do! I’m not sure what to suggest about the potassium other than keep eating the potassium rich foods, will you be getting your levels checked again soon?

It’s so miserable feeling so fatigued, I do hope you’ll be feeling brighter soon and all those miserable symptoms settle down.

Sending you lots of hugs 🤗 🌺xxx

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Hi Diane

Thanks for your lovely reply. I have to have the flu jab because of my symptoms, flu could be really bad for me but I wish I didn't have to have it!. I didn't have these problems when on immunosuppressives!. Your right not to risk a flare as you have so many appt's before Xmas. It's so much to cope with!. Talking of immuno-suppressives I've been on both Aza and MTX so please ask me anything you want to. It's a big step to take going on one of them!. I'm going to ask my GP on Thursday if I could try a potassium supplement as getting symptoms like chest pain. !. If really tough I will bring my bloods forward and see what level it is. He wanted a re- test in 8 weeks!. Is that a. good plan?. Hope you feel better soon and sorry your swamped with so many appt's. It can be too much!. Hugs HelenX 💐

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Yes that sounds like a good plan to bring the blood tests forward, having chest pain is not so good,I’m glad you’re seeing your Gp soon to talk it through, fingers crossed for you.

It’s so hard to keep on top of everything isn’t it just as one thing settles something else rears it’s ugly head to contend with😫 it’s relentless!

Thanks Helen I’ll probably quiz you about the Aza and MTX at some stage as I think of things. I do worry about tolerating such drugs, I guess there’s fors and againsts with them, Hydroxychloroquine isn’t helping me which is a shame, I had pinned my hopes on it making a difference.

Good luck with your potassium levels, I really hope they pick up soon and you are able to get a supplement to help you.

Speak soon.

Lots of hugs 🤗 xxx🌺🌷

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Relentless is a good word for this drudgery! had another “good” 3 monthly immunology appt on monday...typed up my debrief notes today...+ notes for gp appt tomorrow re where i am with rheumatology, imm7nology, gastroenterology & ophthalmology...year after year...am bored silly by this sort of thing over & over ad infinitum...

But if i don’t prep agendas & file debriefs i flippin loose track of whassup at each multisystem clinic in my exciting (not) collection 😂...thank goodness for this wonderful forum: you lot somehow manage to make me feel this long hard slog is worth all the hassle 😘🍀

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Oh my goodness Coco it sounds like a full time job, it's overwhelming at times isn't it!

That's exactly how I feel 'bored silly with it 😫..like you say about keeping track and on top of it is important, I took my eye off the ball last week when I saw an ENT consultant about this pressure/pain in my nose/face ? Sinus, I wrote my notes and I was so tired I didn't get them out, thought I'd remembered everything then after thought of several things I meant to have asked😩, but I was pleased to find I've got a follow up appt after my MRI, phew😅.

My new mantra 'I must stay focused' 🙄

I'm pleased you had a good immunology appt👍🏻

Sending you happy hugs 🤗

🌺💕🦋

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Hi Diane

Thanks for your lovely reply. Glad you think my potassium plan is a good one. I'll let you know also how my Aunt gets on at her check up.it can seem very dauntingand bewildering having to go onto the immuno-suppressives. It's a big step so ask away. It depends what your symptoms are as to which one would be best. Your consultant should help you on this by saying which one hell put you on!. Also be reassured that the doses used for our illnesses are much lower than they are for other things!.

Take carex💐

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Thanks Helen, you take care too 😘🌹xx

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Hello Duvetdaze,

Just having a read of Coco's stream.

A quick response. With chronic kidney disease - you definitely need a Renal specialist on your team - and ASAP !

If nothing else it wouldn't hurt.

I have no doubt that you have a good GP and Rheumatologist, but they are not at all qualified to deal with the kidney issues - especially if you suffer from SLE and other complicated autoimmune issues.

I think things might simplify for you a great deal if you see a Renal specialist who has a good grounding in Lupus. You do have to ask around for one with a special interest - or strong background in this area.

Get your GP to do this.

X

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Hi Freckle, my rheumy said this is CKD not lupus nephritis when I saw him 2 weeks ago, my GFR and creatinine have been fluctuating for 2 1/2 years , we thought it was Arcoxia causing it and to my horror I had to stop taking it a year ago and my kidneys did recover ( but everything else has fallen apart 😫! ) however my blood test in September showed it had gone down again, I had another one a week later and it was even lower, I've had a creatinine clearance and I have no blood or protein in my urine, my gp did write to the Nephrologist and he would do a biopsy if things were to get worse or if they thought it was CTD related. They want to see if it recovers with an Ace inhibitor, I'm having a blood test in two weeks.

That's my kidney story so far!

If things get any worse I know my drs will get the nephrologist on board pronto.

Thanks so much for your reply, it's really appreciated. 🌺xx

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Hi again.

Its good that you have a good set of Dr's who you can rely on. It sounds like you have three quarters of the battle already won with a good team of Doctors. That's so important.

I'm kinda' coming from a subjective perspective of someone with long term SLE kidney problems so I see your situation is different.

But nonetheless I'll get a bit pedantic on you - and go along with a lot that has been said here about the power of words within the medical system and the need to see 'lots' of specialists to achieve preventative medicine and stay healthy in the long term.

The only difference between CKD and Lupus nephritis is the classification systems. I have Lupus nephritis, but I also have chronic kidney disease. I just score different numbers or levels of classification on both medical measurements. The Lupus Nephritis measure is just more explanatory for me.

I just think the explanation you've been given - while most probably utterly correct - should nonetheless be double checked at some stage by a kidney specialist - just to be on the safe side.

I understand you're kidney problems are not on the freaky end of things, but from the 40 years of experience with specialists - including two high status Rheumatologists - I've found Renal specialists to generally have a better grasp of - at least my particular SLE pattern of Lupus at least.

My way of dealing with my SLE has always been - the more input the better.

I was going to say the more the merrier, but it is - the more opinions - the more the ' wigged out' you can become. But eventually the spread of different opinions can - as it has been for me - life saving.

Within all the different spread of confounding and differing opinion there often exists a shed of a clue from one or two of them at least - which can eventually come together to form a conclusion.

Re: Nephrologist - No need for a biopsy. Just an add on to knowledge - a casual visit. It does feel like your'e being fragmented and discombobulated - but in the long term it might help shed more light as to whats going on with your immune system and a better range of possible treatments.

By what your saying it sounds like the blood tests in two weeks should come in all good.

xoxoxox

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Thanks Freckle what a great response to me, sounds as though you’re one of the ‘professionals’ when it comes to this and with very good advice too.

I can’t help but feel that it is all connected in some way, would I have CKD at this moment in time if I didn’t have UCTD/CREST, maybe not! Would I have multiple white matter lesions in my brain at 57 if I didn’t have UCTD/CREST, maybe not! I think it’s all relative.

Anyway thank you for taking the time to write with your kind words of support and guidance...👍🏼, I hope you’re having a good day.

Diane🌺xx

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Hello again. Apologies, I'm only an occasional user of this site and didn't realize you'd responded.

Nah. I'm not really a proffessional at this. I've just kinds accidentally tripped into many a splendid black hole - and after I crawl out of them - I've learnt something. I've had SLE since the age of 9.

I don't know enough about CREST but with anything autoimmune, I think if you were having kidney problems and white matter involvement - the first basic assumption to look at would be the immune system ?.....you'd think ?

I'll be honest and put my cards on the table. I have the type of SLE that pretty much 'just' effects the internal organs - not much in the way of arthritis or rash. Rheumatologists have been pretty consistency dangerously hopeless for me at least when it came to internal organ involvement side of things.

My list of specialists 'recently' are a nephrologist, gastroenterologist, endocenologist, and two different neurologists on the go at the moment. I'm was trying to train my Nephrologist to be my primary SLE co-ordinater and she was doing well until suddenly she's decided to start studying to be a Professor and now doesn't seem to have the time or patience to consolidate all the information she needs to - to do the job. So right now at least its really sort of up to me and my GP (both of whom are not qualified) to try and draw conclusions at the moment - until I can get this sorted. I have a great Gastro who's taking up the slack at the moment at least.

As Shaista and Co Co said, we really don't have proper specialists of our own which sometimes leaves us in a pretty vulnerable position.

ps. I have small white matter lesions in the brain too - at 49. This is sort of stock standard stuff for my kind of SLE though. Appropriate immuno -suppression should stop it from getting worse.

I hope your doing well and the pathology results were good.

xox

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Simply amazing , I have watched the video in awe , you have both echoed what we lupus patients go through, this forum helps us all too cope

Coco as you know We have many similarities . . . Shiatsu and Coco I can't thank you enough for this you tube video💜💜

Sending lots of love ,light and best wishes thank you once again

simply brilliant 💐💐💐

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🙋🏼 ğŸŒž sunshine: hoped you’d join in 😊

You’re totally welcome! And i can’t thank you enough: your comments always Hit The Spot....😘🍀😘🍀

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🌻😘🌻

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😍 Thanks again dear sunshine...had a long day @ hospital: immunology clinic...seeing your landscape & sunflowers is the perfect antidote @ bedtime 💐😘

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Hello lovel lady I know how exhausting hospital visits are 😔🙏🏽I hope immunology went well for you

I have been to have repeat bloods done this morning white cells 2.5 and neutrophils have crawled up to 1.1👍

Make sure that you rest up today don't worry about replying I totally get how we need to have time for ourselves sometimes with this condition things can be an effort

big big hugs love and light🌻🤗😘

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Oh thank you so much for your lovely, encouraging words sunshine16 So much love and sunshine sent your way too xxxx

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🌻😘🌻

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Dear Barnclown and Shaista

I'd just like to say thank you to you both for doing these videos and I glad you've been inspired to do more!. Your conversations are wonderful as you both bring such insight into having this difficult illness and you gel so well together as special friends too. !. Thank you for doing it for LAM , as you can see from the response on here you have done so much good despite your own awful health problems!.

I hope you both keep as we'll as possible. X

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😍 Many thanks dear misty...for 6 years you’ve been helping me & many others here greatly to understand + reconcile ourselves to life with lupus AND also to Collaborate with our medics + navigate the health system more proactively....so really i feel we’re hand-in-hand doing this awareness-raising together...am happy & eager to do anything i can to increase awareness of our sets of immune dysfunction & connective tissue disorders (SLE, DLE, MCTD, UCTD, SS, RP, EM, etc)... but, as an “older woman” with very early onset multisystem illness, am increasingly short on Umph...so the energy, intelligence and humanity “younger women” like you & Shaista bring to continually raising awareness fills me with delight & hope. Am so glad you’re here...Take Care 😘🍀😘🍀

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Dear coco and Shaista

Have just listened to video no 2 and I could relate to so much that you both were saying!. One of my many consultants said to me once that lupus for them was a very difficult illness to deal with because of all its potential problems with the illness and drugs. So he said no wonder it's hard for you living with it if it's hard for us!. He was one of the more open minded ones I've seen that Shaista was saying how much we need!. It's just brilliant you've both raised awareness of some of our problems and put it out into the public domain!.Thank you so much for doing it and I do hope Shaista you will keep in touch with the forum as you could make some very valuable contributions. Do hope Barnclown today went well. I'm so pleased I've met you too and you feel I've made a lot of differences. Means such a lot. X

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Thank you both very very informative, great tips and showing huge understanding. Love to you both Lou xx

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And thank you too dear Lou...as always am wishing you every best wish 😘🍀😘🍀

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This is fantastic. I dont try to explain to people anymore. I get ignored by my entire family. Not my husband and children, but no one gets it. I am trying to help my sister who has terrible diverticuli, and she wont admit she possibly has lupus. I dont know how to help her. She says its stress. Yes. Part of it. Unfortunately, I come up seronegative, or an ANA that is low, and I was told was normal for my age by a kidney dr. Meanwhile, I went from stage 1 kidney disease to stage 3 kidney disease, and back to 1 .

My GP does snicker at me.

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Thanks natura 😍 ...😤 GRRRRR to snickering GPs! Have you seen GE’s post about the book that helps others understand us?

healthunlocked.com/lupusuk/...

just ordered my copy 😆....am relieved the stage 3 is back to 1, but, hey: 😧 bit of a rollercoaster ride...v disconcerting & worrying 😘🍀😘🍀

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Hello DaddyzGrl am just copying you into the comments section of this post my friend Barnclown put up on the forum of a pair of videos we filmed in October. I hope they provide some food for thought and hopefully friendly comfort...

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