LUPUS UK
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Undifferentiated Connective Tissue Disease

hello,

kindly asking for advice on natural remedies and supplements to help with this condition please. I was.first diagnosed with ITP in August of this year and that was revised to undifferentiated connective tissue disease in October. I am currently on prednisolone and azathioprine and platelets are still falling. I'm at 61 down from 96 last week. My hematologist and rheumatologist both expect it to get to SLE (lupus) soon. They said how soon would depend on my lifestyle decisions. Would be immensely grateful if anyone has any recommendations on possible changes and natural remedies I can try alongside my medicine please.

many thanks in advance!

-Rafeea, age 32, east Indian Caribbean

12 Replies
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There’s some spices that people seem to live by like turmeric, there’s cod liver oil, my consultant says to always take vitamin D3 for bones. Smoothies for breakfast there’s lots of immune recipes on google, Or you could look into cannabis oil CBD it’s getting very popular.

My mum had a thyroid problem and she swears by Apple cider vinegar has a spoon full a day it’s not the nicest but she thinks it does help

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hi, thank you so very much! Cannabis oil is difficult to get where I'm from but I'll happily try your other suggestions. Much appreciated :)

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Hi

I have UCTD. I was diagnosed in 2012. It has remained UCTD. Some of literature says if you can stay as UCTD for 5 years then there is a good chance it will remain that way and not differentiate into other conditions.

I am on MTX, Aza did not work for me.

I am a food scientist so could not help but do loads of research.

I take Omega 3 NOT cod liver oil every day. I use to take cod liver oil everyday of my life till I was diagnosed. Loads of positives about Omega 3.

Do you need to take vit D? Calcium? I say this because they are depleted by Pred.

I also lead a VERY healthy lifestyle. I do more exercise now than I have ever done. You need to keep aerobic to keep your heart in good health. So I do aqua aerobics 3 times a week and swim 3 times a week after aqua - making sure I 'huff and puff' a lot. I use a snorkel for swimming so as not to aggravate my neck. I don't have neck problems but unless you do your strokes properly you do put pressure on your neck if you swim a lot.

There's loads of positive research on Turmeric. I use to take it but after about a year I did not see any positives and now only take it at the start of a cold as it is a natural Indian and Chinese cure for respiratory bugs (a natural cure used for thousands of years). When I did take it I took it the age old way. 1/4 teaspoon in hot full fat milk - the milk releases curcumin which is the anti inflammtory bit. Have it just before you go to bed.

I also eat a very healthy diet. Well I have done that for years since I am a food scientist. There's no magic - don't listen to the fads - it's common sense - we all know it's about eating a balanced diet. But don't go crazy, allow yourself treats now and then otherwise life is just dull!

I would say that if you do take things like vit D, calcium, other vits/minerals then don't have any tea/coffee/caffeine around the same time as caffeine reduces the uptake of the vitamin/mineral by the body.

Keep hydrated. I drink 3 pints a day - but then have done this for years anyway.

Finally please do check with your Rheumatologist if you are going to take anything so as to avoid interactions with your meds. It maybe just a case of not taking any supplements with your meds.

And finally if you eat a healthy diet then you are going to get a lot of what you need to the source nature has given us - food.

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Dear Joy_1,

Thank you kindly for taking the time to go into such detail - it's greatly appreciated. I am taking the Omega 3, Calcium with Vitamin D, and I do a veggie smoothie every morning for breakfast (kale, beets, papaya, pumpkin, moringa ect), and this morning I did add a tiny piece of raw turmeric in there for the first time. I was a little worried about the turmeric because I also have thrombocytopenia as well. I'll give it a few days and see if there is any change in my next CBC.

I really didn't know that caffieine reduces the absorption of vitamins and minerals in the body, so thank you especially for that :)

I look forward to coming of the pred one day soon, so I will happily follow your recommendations. My hair has been falling out so badly that I stand in the shower to brush it now, which makes it easier to collects the fallen strands when compared to trying to gather it from the carpeted bedroom floor.

Again, many, many thanks. I'll post again soon to share my progress :)

--Rafeea

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Hi Rafeea

You are welcome. It's good to put my knowledge to some use.

I cannot say strongly enough that you should speak to your Consultant before you take anything. ANYTHING in large doses can bring on a negative. Hells bells even water can kill you if you drink too much.

And on a more gentle note .... how much Pred do you take every day? I lost quite a lot of hair in the early days when I was put on 10mg Pred. Once I dropped below 10 it eased off and then started growing back again. It is one of the many side effects of Pred. However please don't freak out, I'm sure you'll only get a couple of side effects. I got tinnitus too, but once again dropping below 10mg switched it off over night.

Hopefully as I have found, once you start tapering and hitting the lower doses side effects subside.

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Hello Joy,

again, your recommendations are much appreciated. I started on 60 mg of the prednisolone daily back in August and it's being tapered very slowly. I'm.currently on 10mg every other day, and looking forward to a lower dose. It's been about a week now since I started this dosage sand platelets are once again falling. I look forward to it stabilizing so I can eventually come off the pred.

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Technically 5mg a day is not such a high dose. We are always in a rush to get off Pred. I look at if a different way. Pred saved me while the Consultant tried to find the right combination of drugs to suppress my immune system. And it continues to save me when I flare.

I wish you all the best Rafeeasr.

Do keep in touch.

Joy

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Dear Rafeea - there is no cure for what we have BUT - I have used natural medicines throughout my life - I was so incapacitated by our chronic illness that last January on the advice of a Dr who has had Lupus since 12 yrs of age I went to see a Medicinal Herbalist. I have to be honest the bad side effects caused by drugs eased the next day, the aching limbs took another few days. Other symptoms have eased, I see him once every six weeks now and this will gradually become less. None of the herbs clash with meds as he does thorough check. I would at least go and talk to a registered Medicinal Herbalist. Conventional Docs will not approve but I can only say I have never felt better and I have Lupus and Sjogrens. The Doc who recommended I try this is now off her steroids ! Try this website too - turmericforhealth.com - advice on use of this spice which is a natural anti inflammatory. There is a paste you can make up and it is all on website - Good luck and let us know how you get on Cas

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Hi Cas,

This is great, I will begin my search for a Medicinal Herbalist, because the side effects of these meds make it feel like I'm battling another ailment altogether. Thank you so very much for your recommendations. I will happily look into turmeric, especially if it means I can quit the steriods.

I'll be sure to share on my progress, and I wish you the very best, Cas. Once again, many, many thanks :) I'm heading to turmericforhealth.com now!!

--Rafeea

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Only too glad to help - there is not enough being done for us about the side effects of drugs. I felt abandoned until I met my Herbalist. There is a website nimh.org.uk - I have recently started using the Jacob Hooey CBD oil (now legal) from Holland & Barrett - alleviates pain in joints etc - recommended by an 86yr old who has fibromyalgia! So much help out there but we have to find it ourselves - I wish you well Cas

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hi cas, many thanks I'll look into it :) appreciate your well wishes and hoping we call find out own balance to live comfortably and happily.

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Hi rafeeasr,

I would advise you to be cautious about complementary therapies and supplements and make sure that you discuss them with your consultant before starting them. Everyone with lupus is different and what works for one person may not work for someone else, or could even be potentially harmful. Your consultant can advise you about any potential adverse effects or interactions with treatments that you need to beware of.

A healthy lifestyle is important for the management of lupus and certainly diet and exercise can have a significant impact on the control of symptoms for some. We have a couple of blog articles about diet and exercise which you might be interested to read;

lupusuk.org.uk/diet-and-hea...

lupusuk.org.uk/lupus-and-ex...

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