can anyone help me.....

Posted , 5 users are following.

Hi,

Some of you know I've been on prednisone for 15 months and the last 6 months I have been losing hair, has anyone had this side effect?? I am worried about this.

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10 Replies

  • Posted

    Hi

    Yes I lost my hair on the predizon and methotrexate. I have also had sarcoidosis for 15 months. Been as high as 60mg a day now I am on 20mg. Stopped the methotrexate 3 weeks ago I am going on Remicad infusions next week. This is an awful disease.

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    • Posted

      Hey Chris,

      It falls out when I brush it, wash it and even when I wake in the morning there are strands of hair on my pillow.

      This is my 2nd time round with sarcoidosis first time I didn't get steroids it was only on my lungs, this time round I've had it now for at least 3 years on my spleen,lungs,liver and they think it's on my leg.

      The hairloss I know is a side affect but I just hope it thickens and grows back after I stop taking them. However I do take magnesium which is a great help

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  • Posted

    Awwww im so sorry to hear this. Has your doctor said theres anything they can do?
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    • Posted

      Not really it's a side affect of them, I just take magnesium at this time. I think I will head to the health shop and see if they recommend anything

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  • Posted

    Hi Amanda I have been on prednisolone for over a year now. I have had thinning of my hair it has been coming out on a daily basis. I have now stopped prednisolone and started Hydrocortisone these tablets make me feel sick after taking them. But my hair loss doesn't seem as bad. I hope you can get sorted re your hair but this disease is not a very kind one do take care. Jeanxx

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    • Posted

      It is an awful sickness Jean it really is, I know the steroids have been doing the job and they have helped me alot however the hairloss I will try live with once I know it will grow back, I suppose it could be worse.

      I'm so so so up and down emotionally but I have a 15 month old daughter who keeps me on my toes and I went back to.work after two years off. Not gonna let it beat me.

      You take care to.

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    • Posted

      Hi Amanda we just have to stay strong and positive but it is not always that easy. It is one of those silent illnesses. And because people don't see the down side they tend to

      Think there is nothing wrong if only they knew xx

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    • Posted

      Hey Jean,

      Yes it's an "invisible" illness and even tho you can get up and get on with everyday life work, play, shop the usual daily things people don't see it, they don't know the restless nights, the sweats, the pain, the ups and downs in you emotionally and physically, the side effects of the amount of pain killers, stomach tablets, bone tablets, steroids and other illnesses that you might pick up along the way.

      Now I know things could be alot worse but because this is a taboo illness and not much known about how it starts or where it comes from its exhausting not knowing how to cure it, or even know exactly what can keep it at bay.

      I'm just having a rant, 2 nd time round now for me and I wish I just had answers, will I have this on and off for my life??

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  • Posted

    Hi Amanda,

    So sorry to hear that is happening to you. I myself have noticed that more hair falls out after I wash it or brush. I know its a side effect. I keep telling myself once I finish the steroids things will be normal again I'm hoping.

    This condition is such an awful one and it is still a mystery to most people even doctors. They need more research done.

    Keep the bright side even I know that that's a hard ask at times.

    Take Care, Polly

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    • Posted

      Hi polly,

      Just like I was saying to Jean there really isn't much done about it and there really isn't much research done.

      Granted now I'm not giving out about the doctors I have seen however at the end of the day I am just a number along with 100's of other people and that frustrates me, my appointments are every 3-5 months and my steroid intake is not monitored infact prob more monitored by my chemist then my doc.

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