Scleroderma & Raynaud's UK (SRUK)
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Juicing and the immune system

Hi, I have generalised scleroderma (morphoea). Am 4 months into treatment with Methotrexate and Mycophenelate and my skin is better. However, my liver enzymes, keep going up and down which is obviously not good particularly as they tell me I'll be on the drugs for years. I also take a statin (Atorvastatin) and Lansoprazole (to protect my stomach apparently). Looking at drug interactions both the statin and the Lansoprazole affect the liver. I'm looking at having a go at juicing to 'boost my immune system' and to lower my cholesterol so I don't need the statin. What does anyone think? It was my immune system which caused the disease in the first place and the drugs have turned it off? Should I be turning it on again? I think pretty pointless mentioning to dermatologist.

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Hi ChrisM28, glad to hear that your skin has improved since starting Methotrexate, like you I will be on this drug for years to come. Diet and regular exercise can I think influence the progression of this disease.Has the statin improved your cholesterol level?

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I had a TIA (mini stroke) in 2013 so even tho my cholesterol wasn't very high I was put on statins. At present it's 4.9 but should be 3.9. Are you generalised morphoea MilkMaid?

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Yes, I am generalised morphoea, diagnosed Feb 2017 and currently on Methotrexate 15mg per week & folic acid. This treatment in conjunction with deep tissue massage and a strict stretching exercise routine has allowed me to regain a good degree of flexabilty that I thought I would never regain. However, my consultant is still looking at 4-5 years before the immune system might sought itself out. Were you diagnosed failrly quickly?

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I started with itchy back last November. Treated for excema until I got fed up and asked for private referral. March 3rd the dermatologist took one look and said "How have they let you get in this state?" At that point rigid skin all front and back, boobs pointing at the sky! Backs of legs also bad. Sent back to the NHS who said I'd have to wait 6-8 weeks even tho I already had the diagnosis. Contacted the consultant again who offered me an appt in a teaching clinic. March 22nd saw a registrar who went and got a consultant who got very excited because she was worried that the tight skin was impeding my breathing. Started MTX the next day 15mg, 3 Prednisone infusions the following week. 2 months later was invited to a dermatology conference where 55 derms poked and prodded then discussed me afterwards. Was then put on 1000mg a day of Mycophenelate as well as the MTX. I asked about UVA1 phototherapy which is supposed to be the 'first line treatment'. A lovely bloke from Wales told me that it might be the first line but not the best + it's in London daily visits for weeks (I'm in Southampton). Improvement started about a month ago. The linear stripes up both arms are less and my boobs are definitely starting to droop - YAY!

How long had you had it before diagnosis?

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Hi ChrisN28, I think it started back in 2015, initially confined to extreme skin tightening & loss of mobility in lower legs but now in lower arms and morphea plaques all over my torso, saw lots of people but no one had a clue until I saw a dermatologist this year. The MTX does seem to be helping & I eat lots of fruit & veg in my diet. I do feel better in myself these days & knowing what is wrong with you is in many ways a relief after months of uncertainty.

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Hi ChrisM28, yes I would give it a go - it has certainly worked for me. I have localised Morphea affecting my arms and legs (and a bit on my trunk) and, after a long tapered dose of Presnisolone, I am now medication free and rely solely on exercise, diet and supplements to maintain good health. I've also regained much of the weight loss and have finally been able to dispense with moisturising twice a day. My energy levels are also greatly improved. There is still some residual stiffness and mobility loss, but I think this is structural and will never be regained.

Immune system aside, I think the micro-nutrients in a good variety of fruit and vegetable smoothies did me wonders. At breakfast we whizz up soft fruit - whatever is in season or bulk bought from the freezer shop. Typically, this would include a combination of strawberries, blueberries, cherries, nectarines, mango, pineapple and banana plus a good dollop of natural yogurt and some apple juice to thin it out. In the evening we have a vegetable/fruit combo of spinach, kale, pineapple, mango, papaya and banana alternated with another combination of beetroot, tomato, carrot, celery, apple and other stuff (I can't remember what else, but the recipe is called the Ninja Nine so there must be a few other ingredients that go into it).

If you are worried about your stomach I would avoid citrus fruit and chilli - that aggravated mine a bit. That's also the reason we use a lot of mango, papaya and pineapple as this is kind to the stomach.

Other than that I eat a lot of avocados and eggs (we keep our own chickens so we're happy with the provenance) and very little processed food. I also take high strength cod liver oil/ VItamin D capsules.

It can be expensive, particularly if you are doing it for one person, so we buy mainly seasonal stuff and freeze it, or buy big packets from the freezer shop.

Hope this helps and wish you well.

Edwardian

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Hi Edwardian, it must be heaven not to have to moisturise twice a day, sometimes it's the only thing that keeps me from going mad and having a scratching session. Keeping the processed foods to a minimum is a good idea. Your breakfast smoothie sounds nice.

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Hi MilkMaid.

Yes, I know what you mean about the urge to scratch. I forgot a few times, usually in the middle of the night and instantly regretted it, as did my wife, who then had to wash the blood-speckled sheets!

Another benefit of the smoothies is that we can get a good amount of fruit & veg into the grandkids, specially if we substitute ice-cream for yogurt in the breakfast one. There's just one rule though- if they make it they have to finish it. Funnily enough it hasn't been a problem so far.

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