Pace of degeneration

[Nixta]

Hi I'm new to this group. I am based in NZ but thought many of your posts were helpful. I am new to Lupus too (I had the rashes from 32) and didn't get diagnosed until Feb this year (59) in moderate stage but feel like I am degenerating faster now. Not sure if this is normal? Late diagnosis means fast tracked? I hope not! I've given up work and TRYING to slow down. I only go back to the Rheumatologist at the end of May for the second meeting so not sure where I'm at yet.

[EOLHPC]

Hello nixta & welcome. Am glad rheumatology is stepping up for you. Many of us go without much help until relatively late in the game...it's a case of better late than never 🤗. It's 5 years since a brilliant consultant recognised my version of lupus when I was in my mid 50s and degenerating relatively rapidly. almost immediately after that diagnosis, we discovered I'd been diagnosed with lupus as an infant & teen in another country, but I wasn't told about this...then I moved to the uk where my Drs & i had been coping with loads of secondaries & emergencies without spotting the underlying SLE.

Long story short: 5 years since my rediagnosis, am now 62 with the degeneration slowed to a reasonable rate....and feeling generally better than I have since my 20s thanks to collaborations between the consultants at all the multisystem clinics I regularly attend....and especially thanks to my rheumatologist head of lupus & Vasculitis clinic who has gradually figured out the most effective bespoke combined therapy treatment plan for my version of immune dysfunction & connective tissue disorder. We started with hydroxychloroquine...eventually added amitriptyline when hydroxy wasn't enough, shortly after that added low dose prednisolne and almost 2 years ago we finally added low dose mycophenolate cellcept. My impression is that this sort of treatment plan evolution is fairly typical in relatively mild-moderate cases...and effective at slowing degeneration

You're right: the rate of progressive degeneration is important and we do best to get a feel for the most effective way to report on this to our multisystem consultants....I hope you're taking pics of visual symptoms now: these act as baselines re future developments. Also, are your consultants running baseline tests: eg cardiac function, nerve conduction, lung function? Or perhaps you've been attending multisystem clinics over the years before your lupus diagnosis...so baseline evidence of your multisystem condition, including bloods results, is recorded. Whatever, it's important you clearly & concisely report your impressions re the rate of degeneration. I'll add a PS with a link to a website that provides great formats for collecting the sort of multisystem info that can help you present your case to your consultant....you may be doing this sort of prep already, though? 😉

Are you currently prescribed any immunosuppression? Am guessing your lupus clinic is running immunologic blood tests...have results come in yet? Am imagining you'll be learning a lot at your may appt. I hope you'll let us know how you get on...not long to wait now?

🍀🍀🍀🍀 coco

PS here is that link - it's in a good discussion on here recently....towards the end of the thread, several more direct links are included, so do check right through the whole thread:

healthunlocked.com/lupusuk/...

[Nixta in reply to EOLHPC]

Thanks for your prompt and comprehensive reply. I have tried to download the Lupus check list but as I am outside America (in New Zealand) I have no matching zip code so cant progress. Have sent them an email request.

I have high ANA (all my life) and had a connective tissue blood test done in 2010 (normal 40) mine had dropped to 19 but no one told me and I was not treated. I just got worse over the following five years. This same test was done in Feb and is now 13. My lungs are functioning at 80% - but not due to tissue damage - my GP has reassured me. But have not had other baseline tests and only on Plaquenil currently.

You symptoms sound very similar to mine so your information is very welcome and will take your response to the Rhuematologist.

It is 10pm here so am off to bed. Will re-read your reply when I am more alive!!

Many thanks again.

Nicky

[EOLHPC in reply to Nixta]

You're v welcome Nicky! You're a relatively experienced patient...so, am not sure you'll need these sort of tools, but I still find this checklist a helpful prompt when am prepping for consultations, so here is another link: we can download this 2 page checklist here in the uk, so I'd hope you can in NZ:

usinlupus.com/lupuschecklist

hope you're beginning to sense some benefits from Plaquenil...most of us start with this (although the Plaquenil recipe of hydroxychloroquine sulfate is no longer sold under that brand name in the uk...now we get the same recipe from ZENTIVA)

Take care 😊

[Nixta in reply to EOLHPC]

Sorry have been away for 24 hours with friends. Many thanks for this checklist which I will use - it will be useful with my next appointment...and to track things ongoing. The Plaquenil is working well ..so far. But has only been three months. I was in a lot of pain with arms in splints (GP thought I had Carpill Tunnel from overwork) but within about three weeks I am able to use my hands with no pain. My one had was like a claw when I woke up the morning and my knees and ankles have all cleared. Only slight aches now. So far so good. Two flares have been at 50% of the usual. So definitely helping.

I guess the level of symptoms vary across the board - so keeping a handle on things and learning to say NO to doing too much is the secret (although hard to action!!)

Someone told me to eat more meaty bone broth etc to help my own connective tissue? Sounds a long shot to me - but do you have any advice around diet?

Thanks again for your good advice and support - much appreciated.

[EOLHPC in reply to Nixta]

👍👍👍👍 good news! Am starting my day with a 😊! Food is such a tricky subject...after a lifetime of trying to listen to my bod while testing out recommended diets, I've settled on a basic anti inflammation approach involving the food stuffs I can tolerate best. I did have to be strict about this during a long bad flare @ 50, bit since then I've been able to deviate slightly with caution....depending on how I am generally. At my age, there are more & more types of food I need to avoid. I tend to graze rather than eat full size meals, and a 5:2,routine suits me really well.

Am glad you're here. Take care 🍀🍀🍀🍀

[Nixta in reply to EOLHPC]

THANKS - I too have got a pattern of eating mostly healthy. But I now wonder why I bothered!!!

I drink olive oil every morning (natural NSAID - so strong anti-inflam qualities).What is 5:2 ratio about? Excuse my ignorance.

I was almost vegetarian - meat once a week but have now upped that with the connective tissue issue! I also graze and eat lots of raw almond nuts, home made museli and fruit. I think sugar is a trigger...but am an addict!!! All my teeth are sweet tooths! But am getting there.

I used to get a major hangover and often a flare up if I drank just half a glass of wine. But have discovered on the Plaquinel I can actually have a drink without any impacts - so everything has a silver lining!! But yes as I get older I notice I have to be more careful....

thanks again for your help - much appreciated.

[EOLHPC in reply to Nixta]

Sounds good! It'll be interesting to see how your bod feels about a bit of meat.

Watch out for soya: many lupus patients react badly to it...I learned I'm one when I spent 18 months off all form of dairy & soya milk was the only type I liked the taste of...then I realised my GI is highly reactive to it in a VVVVV bad way...10 years later my lupus was recognised & my research revealed that soya tends to disagree with us: I thought 💡💡💡💡OMG this explains my flaring gastro stuff...when I stopped the soya milk I was fine...recently I was prescribed a chewable form of calcium + vit D which set off my soya-type GI stuff, so I read the fine print re ingredients: this stuff is soya based! PRONTO had my prescrip switched to caps for swallowing: my GI settled down nicely 🤗

Here is a link re the 5:2 thing:

en.m.wikipedia.org/wiki/5:2...

Have been tending to eat this way all my life...just because my bod likes it..then the 5:2 theory turned up...am not strict about 5:2...it's just a pattern that has stood the test of time for me

🍀🍀🍀🍀

[Nixta in reply to EOLHPC]

OMG some years ago I had flare up after flare up and had also given up dairy and was using soya milk. Also eating tofu about twice a week with stir fry veg. Had no idea there was a link!! I was trying to get in protein and avoid dairy. THANKS for joining the dots I havent had soy of any kind for about 5 years now.... I was so ill at the time and had been diagnosed with allergies so had all kinds of meds for two years (if only I knew!!)

the 5:2 looks interesting and I can see it would have some benefits. I am 1.72 tall (5' 8") and weigh 56kg (I was 62kg about two months ago - so have become super wary about muscle weakness (can barely hold and empty frypan!) and eat like a horse. I have upped the fats and meat in my diet in a, probably, vane effort to assist connective tissue and improve muscle strength. Has helped with ability to swim longer. Certainly B6 and B12 are helpful too but much is lost during digestion. Anyway I will hold off until things stabalise before trying the 5:2. I dont eat many carbs either (dont like bread)...sugar is my evil vice! Some Vitamins can effect the meds too..so am a bit in the dark about that....so am not taking any at this stage either.

Thanks again for your valuable input and will certainly give the 5:2 a go once I feel things are calmer.

[Penelope-Mary in reply to EOLHPC]

You are a 💎 BC

👍🏼👏🏼🎓

PM

🐳🐚

[EOLHPC in reply to Penelope-Mary]

😉😍🍀

[Nixta]

Have looked into the 5:2 diet and also the issue around stomach microbes being weakened which impacts your immunity. Getting both these things right can push Lupus into remission (apparently). Have started the 5:2 since you last wrote and already feel better. More energy and motivated.

Blueberries and yogurt (to get the microbes active) for breakfast. Fasting isnt actually starving in the conventional fasting way I realise - so THANKS for your input. It's looking promising and can still have blue cheese and the odd half glass of a cheeky red in the evening. It certainly is helping and REALLY APPRECIATE your support. Am hoping to push into remission. Seeing the Rhuemmy on Monday and will discuss your meds too. So while in remission can you give up the meds? Or are we both too old to take that on at this stage?

Feeling much happier and stronger THANKS

[Paul_Howard Partner LUPUS UK in reply to Nixta]

Hi Nixta. I'm glad to hear that your diet change has helped you feel better. Did you discuss the diet with your GP before starting it? It is important to discuss this with your GP to see if it is suitable for you because not everyone can safely fast.

[Nixta]

Thanks Paul - no I havent. But am seeing the Rheummy on Monday so will discuss with him. Am not feeling too flash so will hold off with the diet until I get his view on this. In the end the genes dictate - so probably a long shot that diet makes much difference.

Thanks again for your support.

Nicky

[Paul_Howard Partner LUPUS UK in reply to Nixta]

No problem. Let us know how you get on.