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Sea buckthorn oil for Sjogren's?

Posted , 6 users are following.

lily65668
lily65668

Anybody tried it? I've just started. I'd been reading up on it on-line for some time. It's supposed to be the bee's knees for the whole sicca syndrome, and dry eyes in particular. As I was due to spend a few days in London last week, I debated getting some, but decided it was too expensive.

Then fate took a hand. As I haven't had dry eyes for months now, I didn't take my eye drops with me. That's the trouble with remissions - you forget you've got the wretched condition and get cocky! First night in the place where I stay it was a bit stuffy, so I turned on the air-conditioning for half an hour. One of those individual ones that blows air out fiercely however low you set it. I sat up in bed, facing it, watching the TV for just half an hour before going to sleep, but that was enough. I managed to get replacement eye drops the next morning, but now I'm in big trouble. Decided to invest in the sea buckthorn oil anyway, and have now been taking it for a week.

They say you're supposed to take four capsules a day for the first two weeks then cut down to two, but I'm being careful. Took one a day the first week, will start on two tomorrow and build up to four by the end of the month. I once had a terrifying experience on a low starter dose of Siberian gingseng. Just because something is "natural" doesn't mean it won't harm you!

Sea buckthorn is also said to be good for RA. The main ingredient is Omega 7, btw, but it also has Omega 3, 6 and 9 - though a different type of Omega 3 than fish oil. I'll be interested to see how that works out. I'm actually having an RA flare-up at the moment, but it seems to have peaked since I started my usual homeopathic treatment a few weeks ago. As I'm taking the oil alongside the homeopathic remedies, that will muddy the waters, of course. But I'll stay on the homeopathy for six months because it always works.

I hear you have to wait three months for Omega 7 to kick in, so I may be in for the long haul with the dry eyes. My right eye is already starting to bleed from a crack at the outer corner. We're having high winds here at the moment, which isn't helping things, particularly as my hips and knees have now improved enough to stand a 45-minute walk most days. I finally caved in today, and put on my wrap-around industrial goggles (provided by an optician in the UK). But I feel a right berk wearing them when walking around city streets - especially as it's not considered rude to stare in this country!

1 like, 14 replies

14 Replies

  • jean34329
    jean34329 lily65668

    Posted

    Hi Lily

    You wrote my right eye is already starting to bleed from a crack at the outer corner.

    Are you referring to the eye itself or the eye socket?[/b]

    I am concerned to learn from your posting thaat you have a crack in the corner of your right eye that is starting to bleed.

    Have you got access to an ophthalmologist or eye hospital?

    I think that you should treat this seriously and get your eye examined by an expert.

    You mention the high winds. Where are you based?

    Do you have immediate access to an optician and ophthalmologist or an eye hospital. If not you could perhaps ring Moorfields eye hospital for the nearest one to you or advice as they have an inquiry line.

    I would be interested in the homeopathc treatment you are following for the OA especially when you have a flare up. I would advise googling thyroid eye disease as well.

    Jean 

     

    • lily65668
      lily65668 jean34329

      Posted

      Hi Jean, Thank you for your concern but it's absolutely fine. I should have clarified that it's just the skin at the outer corner of my eye that's cracked and bleeding. This is a common symptom in SS. The same thing used to happen at both corners of my mouth in my early days of SS, 20 years ago, when I had far worse problems with dry mouth than I do now. That really was agony, because the sores used to open up again every time I opened my mouth to eat. Both symptoms were seen by an assortment of GPs, dentists, ophthalmologists, dermatologists and GPs back in the day, and always dismissed either as allergy in the case of the mouth sores (which was absolute nonsense) or eye-strain in the case of the cracks at the corner of my eye. It was only ten years later, when I finally got diagnosed with Sjogren's, that I looked it up on-line and discovered these were classic symptoms.

      I have a mildly under-active thyroid, also par for the course in Sjogren's, for which I take thyroxine, and my ophthalmologist knows all about this. I'm afraid it's just a case of waiting a few weeks till the crack heals up. And not touching my eyes, of course - though that's very tempting as both of them feel as if they're covered with a sticky film. I've been here many times before, like lots of other people on this site, I suspect. I've been a bit spoilt the past six years, as I've been more or less in remission all that time, but I suppose it was inevitable it would come and get me again soon enough! But I can't complain. Compared to most people on here, I've had a really easy ride with Sjogren's.

      In any case, this will be a good test of whether sea buckthorn oil really works or not. It's a bit on the expensive side, but I'm prepared to be the site's guinea-pig. It's also supposed to make your skin young and beautiful again but I fear mine is beyond hope!frown

      I'll send you the list of homeopathic remedies I take for rheumatoid arthritis by private message. The last time I tried posting it on here I got modded! However, they won't necessarily be right for you. They were originally prescribed 35 years ago by a fantastic homeopathic rheumatologist who practised dowsing with a pendulum, so they were geared to me as an individual. Unfortunately, he retired years ago.

    • lily65668
      lily65668 jean34329

      Posted

      I got it at H&B in London. (Hope that's not too much information for Alan, our Friendly Moderator!) They didn't have any in stock at their Bond St. store but I found it in the one near Marble Arch. This was their own brand, which was cheaper. They had another brand, but it had vitamin A in it, as well as being more expensive. There seem to be a lot of different brands available, most of which can be ordered on-line. Just google it. I don't think the Big B are selling it yet, but if they do start, then I'll get it from them. I really trust their brand. The only problem is, they don't leave stuff alone. One minute you can buy things just as they are, the next they've "improved" the product by adding all kinds of other things - often vitamins A, C and E - which really ticks me off. Particularly vitamin A, as there's quite a narrow safety margin with that one before it starts becoming toxic for the liver. H&B give you the choice of buying products "as is".
  • pam_87693
    pam_87693 lily65668

    Posted

    Hi Lily I know about the wrap around goggles BUT bark or not they are very much part of my life and have been for nearly 20 years! I was severely photophic at 20 when my Schirmer was 2.3 mm. By my 50s totally dry 0mm so I wear the wrap around ones and at night yellow ones! Sorry to any this but true! 
    • lily65668
      lily65668 pam_87693

      Posted

      Hi Pam, Glad I'm not the only one walking around looking like a freak! Can you get them in sun-glass format, btw? I'm not normally photophobic as I have very dark eyes, but the sun was particularly bright today and added to the dryness, it was irritating my eyes a bit. As I couldn't wear the goggles and my sun-glasses it was a toss-up between the two. I should be back in the UK at the end of October, so I'll ask the same optician about them. At least then I could pretend I was a celeb in wrap-around shades!
    • jean34329
      jean34329 lily65668

      Posted

      Hi Lily

      I too had a problem with sunlight.

      I even had to wear sunglasses indoors.

      Jean

  • shira75032
    shira75032 lily65668

    Posted

    Hi Lily, has the sea buckthorn been of any help to you so far?

    Just got mine today at long last.

    • lily65668
      lily65668 shira75032

      Posted

      Can't say, as I've had a whole series of catastrophes since I started taking it. I must say both the dry eyes and the joint and muscle pains eased off significantly after the first few weeks on it. However - as already mentioned elsewhere on this site - when I went to my GP for a check-up he sold me on the idea of what he said was a very powerful probiotic preparation newly arrived from the US. This was four or five weeks after starting sea buckthorn oil. (I took the two concurrently.)

      I started taking the probiotic four weeks ago - and stopped taking it two weeks later after having a violent reaction, both physical and mental, as documented in my other post. I think this was almost certainly down to candida die-off in response to the probiotic. In addition, my friend with dementia - who I'd been taking care of for four years - suddenly fell ill on the day I started taking the probiotic and died two weeks later (which was a blessing for her). I spent the last week of her life alternating night shifts with her niece at her bedside, all of which corresponded with the exact period of taking the probiotic. Anyway, the end result was that the joint and muscle pains came back with a vengeance - worst flare-up ever in that department - although I was still taking the sea buckthorn. My entire digestive system also got comprehensively messed up, but I know that was the probiotic. I stopped taking the probiotic powder two weeks ago and since then the joint pains have eased off to where they were before starting sea buckthorn. The mental symptoms have cleared too, and my digestion is slowly getting back to normal.

      So... the jury's still out on sea buckthorn oil. (But not on the probiotic powder!) To be fair, the stress of those two weeks probably played its part too, but I must say it'll be a long time before I'm tempted to try a powerful probiotic again. My gut feeling is that the sea buckthorn oil is in fact doing its work, particularly as I seem to be recovering very quickly from the nasty flare-up apparently caused by the probiotic. However, I think I'm going to have to wait another month before I can really judge.

    • shira75032
      shira75032 lily65668

      Posted

      So sorry to hear of your loss Lily, I'm certain it's taken a serious toll on your health. Sounds like you were an amazing, loyal friend to her.

      I'm also very sensitive to probiotics and am unable to take a strong one that I've recently purchased.

    • lily65668
      lily65668 shira75032

      Posted

      Thank you Shira. I'm actually feeling much better now. I got back last night from four days in London, which I'd booked several months ago. I go over regularly to meet friends and catch up on the cultural scene, but the last couple of trips - both of them since the start of the flare-up triggered by my accident back in April - I'd been so exhausted I was hardly able to do anything. It wasn't till I got up this morning (OK, it was actually closer to noon!) that it struck me that I'd got through my usual very full programme this time without completely wiping myself out. Maybe there's something in this sea buckthorn stuff after all.

      My sympathies if you've also been having problems with a probiotic. I know just how terrible it can make you feel. These things should carry a health warning!

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