Taking an alternative route

[Motherindespair]

Alternative Route

Has anyone taken an alternative route in the management of their condition. Change of diet, meditation?.

Every time my Daughter has taken medication it suppressed the problem and brought another about.

[EOLHPC]

Hello MID

Am very much feeling for both you and your daughter. The diagnostic & treatment process is extremely distressing & confusing for lots of us. The wonderful thing is that you are there standing by your daughter, helping in as many ways as poss...and you’ve found this wonderful Lupus UK forum...it’s been my lifeline for 7+ years and i feel sure you’ll find it a great help too. In case you haven’t found it yet, the Lupus UK website includes brilliant info & resources, here is the link to the websites publications page which includes downloadable info on self-help techniques:

lupusuk.org.uk/publications/

I think Melba’s reply to the details you gave us on our Twitchytoes post is Spot On:

healthunlocked.com/lupusuk/...

And i second the questions Melba’s is asking, plus i wonder:

how old is your daughter?

How recently was she diagnosed with lupus?

Do her lupus manifestations affect other parts of her body?

Are there any treatments or self help techniques she hasn’t reacted badly to & which have proven helpful?

We all find it very hard to resist despair, and this forum helps us a lot with this tough task...lupus affects family members, friends and colleagues as well as lupus patients themselves...all are welcome here on forum. Am so glad you’ve found us

Personally, lifestyle techniques like meditation, careful pacing of all activities, gently stretching exercise, balanced diet that avoids food i can’t tolerate etc all are as key as my meds are in controlling my lupus

Courage, take care 🍀🍀🍀 Coco

[Motherindespair in reply to EOLHPC]

Hi she is 31 was diagnosed in 2010 started with joints raynards then has progressed to kidneys lymph nodes rashes & now memory etc. She had stop taking her medication & was on top of alternative things but as soon as she went out of routine it caused a flare up lymphs in neck then her needing steroids they didn’t count her down it just stopped which resulted in another flare up rashes again higher dose soon as that ended massive red panda eyes confusion fever ended in hospital admission & now on steroids from 5 a day to 1 a day for the next month.

I’m such a believer in fixing your body rather than being shoved with medication or at the very least be able to work with a specialist who is open to alternative route I’ve been researching leaky gut & the effects on your body. I started making her bone broth( found a vegan version as well) She noticed a massive change in appetite & helped with IBS drhyman.com (how to stop your body attacking itself) MargaretHillsclinic.com

Her book is helpful as well. We also once a month for 10 days take Diatomaceous earth food grade.

She is really under weight but we are trying to go more vegan, she needs omega 3 so we’re keeping fish, cut out gluten having more B12 grape juice etc for brain no process foods. We are starting to do Meridian tapping technique. Also apparently sticking your tongue out moving it side to side 12 times is meant to help with memory we started that as well

[Latincarib in reply to Motherindespair]

Hi sorry hear about your daughter. I have been in remission for a long time now, howvever early this year I noticed some flare ups with the skin and also my digestive system has been rejecting lot of the healthy foods..m ie avocados, eggs , quinoa etc. I have managed by changing diet and doing more exercise... running when I can, yoga to ease stiffness in joints.. I have recently stopped eating dairy ( it's struggle love cheeses). I hone back to some basic eating, incorporating more meat and carbs. Iam In my fifties and still trying to find and manage a healthy lifestyle.. 🦋🦋 hope this helps.. oh ism awaiting results from recent blood test.. Will update.

[EOLHPC in reply to Motherindespair]

It’s clear you have done a lot of conscientious research into complementary therapies & lifestyle approaches to managing her version of lupus, and that putting these into practice has helped you learn a lot about what can help & what can’t. Meanwhile, when her lupus has flared severely threatening her vital organs, her medics have likewise collaborated with her in trying to find the right prescription combined therapy treatments. Inevitably there is a lot of trial & error + wait ‘n see involved in these collaborations. And right now her instability and less than positive response to meds is a great concern to you all

I’m lucky because i attend a University Hospital which is a Lupus Uk Center of Excellence, and my clinicians all emphasise the importance of self help via lifestyle techniques. I am 65 and my lupus was infant onset. My clinicians say that had i not put so much effort into self help throughout my life, i’d probably be less well now. But, as i’ve aged, i’ve increasingly needed more complex combinations of powerful prescription meds alongside my self help techniques. i always make sure to get my clinicians’ ok before trying an alternative/complementary approach or product, which builds trust & understanding between us. My medics have my lifelong neuro cerebral symptoms reasonably under control via the right meds + self help and i wish the same for your daughter

Here is the link to Lupus UK Centres of Excellence info:

lupusuk.org.uk/centres-of-e...

[Motherindespair in reply to EOLHPC]

Thank you so much reading different views from you guys gives me hope & not alone xx

[EOLHPC in reply to Motherindespair]

You’re v welcome...this is why we love this forum too. Take care & good luck XOXO

[overnighthearingloss in reply to Motherindespair]

I have read lots of stuff on vegan diets and think they may have lots to offer in certain ways. But a vegan diet does not mean she will go junk free. It depends how you go vegan.

For myself, I guess I am mostly paleo.

I eat vastly more vegetables and salad than I ever did in the past. I don't use any margarines or standard vegetable oils. I do use olive oil and coconut oil and butter. I don't eat many carbs. Well not starchy ones anyway. No bread products except rarely. Also little in the way of baked goods. I do not eat cereals in the morning.

I do eat eggs, meat and fish, some cheese but not much and probably drink as much nut milk as regular milk. I eat dark chocolate occasionally, 70%+ cocoa. I eat fruit occasionally but much more veg and salad than fruit.

I do sometimes eat foods I usually exclude, mainly when out or visiting others, but try to keep food intake as real as possible.

I used to be treated with blood thinners for lupus anticoagulant but now have been taken off them as they are no longer deemed necessary. Originally I was told I would be on them for life.

I think I am having some success with gut issues but need longer to be sure due to relapsing remitting effects.

I think I have less inflammatory effects these days. Still hoping for energy increases but one thing at a time is ok. Long standing blocked sinus issues seem to have improved. Still got raynauds, kidney issues and liver problems and still get breathless but hoping to get more control in those areas.

Personally I don't believe that a cure will come from a drug direction. It's my belief that at best they will only take the edge off of symptoms. So I, like you, am looking at other avenues.

I have found Andrew Saul useful and have found ingesting adequate nutrition does seem to have positive effects. He suggests vitamins if the diet may be lacking. I think he is onto something. Btw he has been saying the same for 30 years or so.

I hope some of this has been useful.

[Hidden in reply to Motherindespair]

Hi Motherindespair,

Does your daughter see a Consultant who has good experience in treating Lupus?

Your comment about them stopping steroids suddenly rings alarm bells for me. Also there is much less reliance on prednisolone to treat Lupus now there are other medications ( including Biologics and MMF ) especially if your daughter has Renal Involvement.

I would make sure that her care and treatment is expert, optimum and evidence based before trying for alternatives.

[Motherindespair in reply to Hidden]

Yes she has tried Hydroxychloroquine but can’t even take a proper dose because of the stomach problems it gives her. They want to keep her on steroids for a month. Pumping Medicine that’s not natural I’ve looked into leaky gut & she’s had eczema allergies from very young & I feel if I knew then what I know now she wouldn’t be like this. She can physically feel inside if something is working or not. I will never rule out Dr’s input & expertises but they are not always open to alternative care

[Hidden in reply to Motherindespair]

I don’t think it’s helpful to think in terms of alternative care, the only consideration should be is her care evidence based and view lifestyle and diet as part of that.

Lupus is a complex, rare disease where the immune system goes rogue and starts to attack the body. If your daughter has kidney involvement then she needs to see a Consultant who has Lupus expertise and is prepared to work with her, not use short courses of steroids as a sticking plaster.

[Paul_Howard Partner LUPUS UK in reply to Motherindespair]

Hi Motherindespair . May I ask what brand of hydroxychloroquine tablets your daughter was taking? One of the brands 'Quinoric' commonly causes stomach upset in people with lupus because of one of the ingredients used as a filler, but many people find that the 'Zentiva' brand is much better for them.

[Cookiecutter76]

Hello!

I’ve had lupus since I was 12 and am 41 now. I wasn’t diagnosed until I was 37 so have had the benefit of being able to compare life for me being ‘helped’ by doctors and not. I have found healing, acupuncture, Tai Chi, herbal remedies, reflexology and a gluten and dairy free diet to be helpful (not all at the same time for financial reasons!) Reflexology in particular, along with cutting out gluten and dairy, have worked wonders for me.

For the three years I was on medication for lupus my life was a living hell and I became completely unable to work, drive and almost completely unable to look after myself. That’s not to say I haven’t been very incapacitated by lupus in the past when not on medication, as I have, and have spent many years unable to work in my earlier years of the disease. The thing is, the medication caused a range of new, awful symptoms that I couldn’t find a way around as I was actively taking something that my body struggled with. These symptoms went away when I stopped the meds. With the lupus, however, I have learnt to work around the symptoms by giving my body more care and gentle remedies and this is certainly the preferred option for me right now. I don’t appear to have major organ involvement though and may well take a different approach if I did. We are all different too and I know many people have great success with lupus medications.

Best of luck for you both! I hope you find a way that works for her soon. x

[Cas70]

I was interviewed by a nurse practitioner as I use natural medicines for as much as I can. She was doing a survey of efficacy. She then asked why I didn’t try herbal medicine as she had. She had Lupus for 20 years and only improved after adding herbal medicine to her diet. (Turmeric is a natural anti inflammatory) I went to one from the official register of licenced of Medicinal Herbalists. I can highly recommend a visit - apart from the odd flare now and then I have improved no end. They check everything against the drugs we are on and do a full medical history. I have cut out bread, cakes etc ie sugar - amazing difference is they treat the whole person. Look it up and see how you feel. Don’t listen to scaremongers. Good luck.

[Shorthouse in reply to Cas70]

Oh my god !!!!!i have been posting this ever since I came on this site.i had already given up sugar .i added dairy and gluten.like you i am so much better.i have just had my first winter cold normally end up on antibiotics & steroids

[Shorthouse in reply to Cas70]

So pleased you are saying the same .so much more energy.it was just someone I hardly know telling me of a good herbalist.i was in with her for 2hrs the first time.i cried when I got home.someone not giving me the look love to you all x

[Cas70 in reply to Shorthouse]

Yes, the care is wonderful! My Herbalist monitors me so closely emotionally too. Adds stuff as I need it and reduces as I don’t! I had awful bowel problems with Hydroxychloroquine but it was gone really fast after herbal mixture. I am so glad I followed advice from a near stranger too!

[Motherindespair]

I am so happy to hear my daughter is scared to stop the steroids as the last flare up was scary I am 100% a believer in alternative/natural approach. You’ve given hope.

Xx

[Hidden in reply to Motherindespair]

Has your daughter been prescribed any other meds other than steroids? That’s not the way Lupus should be treated.

[Shorthouse in reply to Motherindespair]

Hi mum glad to tell you about herbalists.she must not just stop the steroids.she can slowly stop them as she gets better.it all takes time.good luck to her.

[Hidden]

I’m trying alternative routes. Idk if I’ve been going through this long enough to give advise, but I take a lot of supplements, and changed my eating completely. I try to use compression devices, exercise, warm soaks in epsom salt, BenGay, gluten free, dairy free, lots of fresh veggies and wild caught salmon, etc., etc. I’m going to talk to my Rheumatologist at my next visit about acupuncture (having bad Vasculitis over my right shoulder blade that drives me crazy when inflamed), and have plans to travel to Utah to see a Foot Zoner (I know it sounds weird) at the end of October. She’s suppose to be able to get to the root (or foot 😆) of things and tell you what your particular body needs.

But yes, i’m trying as many alternatives as possible. I don’t even use Tylenol.

I just read your comments about ‘fixing your body instead of shoved full of meds.’ I agree 100%!! Best of luck to your daughter. Btw, I live in California. I hope everyone is ok with me being on your site? 🙏 (Yoga’s great too!)

[Hidden]

Oh, and a very good recipe book that also was educational for me is ‘The Lupus Cookbook’ by Ana Reisdorf, MS, RD. I bought it at a local bookstore (in Southern California) But I believe you can but it on eBay and Amazon? It breaks recipes down too. Ones for when you’re feeling fatigued, ones for flares, bone health, heart health, kidney support, etc. Some of the recipes are so-so, but some are so delicious!!!! I love this cookbook!