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dermatomyositis

Posted , 4 users are following.

lilsky
lilsky

Hi,

Just thought I would let you know that I have tried all sorts of creams prescribed by specialists for my itchy skin and gottrons papules. None have worked. I am now using hemp hand cream and hemp and cocoa butter body butter. It is working for me at the moment. My hands are looking great.

2 likes, 14 replies

14 Replies

  • craftyange
    craftyange lilsky

    Posted

    That's excellent news. I'm on my second carrier bag of samples and prescriptions of creams and emollients for my hands, as everything else is under control. They seem to be improving, but it is in conjunction with having given up work running a craft shop and workshops, so I've taken that  and stress of running my own business out of the equation. Desperate not to have to increase the Methotrexate, which my Dermatologist wanted to do when she saw me last week. Seeing my consultant on Friday, so I'll let you know. Will keep the hemp idea handy. Thanks.
    • lilsky
      lilsky craftyange

      Posted

      I had to be taken off methotrexate and the rest of my medication due to high ALT results. I have been off methotrexate for 1 month and my tablets for 2 weeks. I haven't felt so good in such a long time, so when I went to see my consultant yesterday I discussed the situation with her and said I would like to stay off it all and just be monitored. My consultant is behind me 100%.
  • craftyange
    craftyange lilsky

    Posted

    That's fantastic news that you're off the medication. Well done. I hope you stay symptom free. Did you have muscle weakness too? How long ago were you diagnosed? Hope you don't mind me asking.
  • craftyange
    craftyange lilsky

    Posted

    Sorry, I have just re read your post from 4 months ago regarding your muscles. Ignore my last questions.

    are you going to the Myositis UK AGM in Oxford in July? I have found it very helpful to meet other people with the same condition.

    • lilsky
      lilsky craftyange

      Posted

      I know this sounds strange but I'm not actually symptom free, but I feel like I want to give my body a bit of a break from drugs and give it a chance to see what happens. I may get really bad again but I'm willing to take that risk. I was advised not to exercise, so I did. I was advised not to carry on working at one point too, so I did. I'm like a naughty child.
    • lilsky
      lilsky

      Posted

      I didn't even know there was a meeting. It would be interesting but I'm trying to have a positive mind and convincing myself there's nothing wrong with me. I'm worried if I go to meetings I'll get the negativity which I once had back in my head. Sounds ignorant but I'm not like that. I hope all goes well on Friday for you.
  • craftyange
    craftyange lilsky

    Posted

    Hi. I can't blame you for wanting to try without meds. I long for that day. I think you have to just go with what you feel your body needs. Keep well.

    With regards to the Myositis UK meeting, that is where I met the man who is now my consultant. He really turned things around for me and I felt like someone was actually interested in ME. Also I realised that I wasn't on my own with this condition, and felt much better knowing there was a group set up already for the last 27 years dedicated to research and treatment of Myositis in general. If you get chance, have a look at their website.

    Bye for now.

    • lilsky
      lilsky craftyange

      Posted

      I have had a look at their website. I will definitely consider it for the future. Take care.
    • melissa67180
      melissa67180 lilsky

      Posted

      Hello my name is Melissa I take care of a wonderful lady she also has this condition. She was tired of all the meds! So we did some reasearch! ! GREAT NEWS! Ok for all those who want to try something natural an give your skin a rest listen up get your blenders out! 2 whole lemons peel and all, cut into 1/4 pc.throw it in blender put a squeeze of honey now get some ginger outa the cabinet put a couple shakes in with lemon . Get a piece of aloe vera green outer skin too about 4 or 5 inchs long cut off pokey part then add to blender we use fresh spiramint leaves but add about 6 leaves now last thing add 3 to 4 cap fulls of apple cider vinigare with MOTHER (will say with mother on jar) then blend well! I strain it through a panty hose but can use rag or sock will kinda gel an spread like pudding kindawe have used sock strait to skin and I have strained into jar an spread with cotton ball either way it takes alot of red out an swelling however u want to put onoh an I do.keep in frig. Good for about 5 days then I make newhope it helps!
    • melissa67180
      melissa67180 lilsky

      Posted

      Just done some reasing in homeopathic books an internet an started mixing of we have also put dandilion flower and root in mixture also hope it works for u let us know
    • hope4cure
      hope4cure melissa67180

      Posted

      Hi,

      all the the ingredients sound very helpful.

       Easy to make. Will give yours a try .

      thanks for sharing. I could really use a good nights sleep from the itching waking me at all hours.

       

  • hope4cure
    hope4cure lilsky

    Posted

    Great  to hear your finding relief . How long have you been on hemp oil and what %? Also cocoa butter works for you too! 

    This itching is agonozing at times. I have tried a lot of prescription atarax helps a lot it's also a Antihistamine. Different than the OTC types. 

     Thanks for you advice I will give it a try.

    • lilsky
      lilsky hope4cure

      Posted

      Hi,

      Sorry for the late reply. The creams are from body shop. The body butter is the hemp mixed with cocoa butter, and the hand cream is just hemp cream. I don't know what the % of hemp is in each as it doesn't say. It took about 1 week to give me some relief and I've recently found out that my consultant uses it too.

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