New to this site

Hi all, I am new here, but not to sarcoidosis, I was diagnosed in may 2010 via biopsies of both lungs, they also managed to puncture one of them in the process.

I have been suffering since June 2012 with sore and stiff joints and my Rheumy seems to think this is related to my sarcoidosis. Had dropped my pred down to 5mg a day, but he upped it to 10mg in December. Does anybody relate to this?

Jan

21 Replies

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  • Hi Titchyj , Welcome to the site , I am sure someone will soon be along to answer your questions . Su .:-)

  • Big welcome, Titchyj, you will meet some very helpful people that will be able to help you. You will make some good friends and not feel alone. Love Annie80.

  • Hi there Titchyj. Welcome to the forum. It's a great site with lots of fun as well as serious talk. I can't really comment on your condition as I have COPD (emphysema in old money) but I'm sure others will.

    Lynne xx

  • Hi Jan

    Fellow sarcoidosis sufferer here. I'm now off the steroids after 20 months on them (diagnosed in April 2011) but I'm suffering a fair bit of joint pain although I've put this down to getting older. I'm on azapriothine too to keep the sarc at bay, they apparrntly do ghe same job but without the side effects. Are you on anything similar?

    I do know that it can cause joint pain etc. I think the trick with sarc is to try and find a dose of Pred which is low enough to keep disease at bay. They seem to think mine has burned itself out but not sure why I'm still on immunosuppressants then!

    Marie x

  • Hi Marie,

    Thank you for your comments.

    I am only on steroids for the sarc., but take numerous other meds for numerous other conditions!!!! I also have asthma, Fibro. Diabetes and a few more, I really want to come off the steroids as they don't seem to be doing anything for me, other than making me overweight, which is not good for either my lungs or joints. Not been offered any alternative to steroids as of yet, but seeing Rheumy on the 11th March so will ask him then.

    Thanks again,

    Jan

  • Good luck - I do hope you get the chance to try and come off them - its a long process but worth it if you can. Sorry to hear you have other problems I suppose it will all depend on what other meds you are on. Do you have a respiratory consultant - might be worth trying to speak to one.

    Marie x

  • Thanks Marie, I do have a respiratory consultant, but my next appointment isn't until June, not got a date yet. Got down to 5mg of pred. In December, but upped to 10mg then so hope it won't be long before I can reduce again and then altogether. Here's hoping anyway.

    Jan

  • Hi Titchyj,

    Welcome! Just wanted to say that if you wanted an earlier appointmnet with your consultant don't be afraid to ask. 6 months can be a long time to wait, even longer sometimes if you got questions that need answering etc.

  • Hi Tanyamarie, thanks for that, will ring appointments to see if I can get an earlier one.

    Jan

  • Hello and welcome.

    Kim

  • Hi Titchyj, welcome and don't forget you can click on the boxes in the ' popular tags in blogs' to your right of screen. :)

  • Hi Titchyj. Welcome to the forum :grin:

  • Hi Titchyj.Welcome .I am no good with medical matters ,but I can cheer you up with some humour

    Richard

  • Thank you all for the kindness and helpfulness, I look forward to any help and advice you can offer.

    Thank you all

    Jan

  • don't we know it lol!

  • to Mr king that was loL!

  • Oh yes Titchyj. I am carer for hubby Pete who has had sarcoidosis since 1991. He was diagnosed by biopsy of the lungs but luckily had better luck than you did it seems. He has pred 10mg a day now but started on 30mg which caused osteoporosis. I hope you have a good doctor who can monitor your condition as no two days are the same. Pete has joint problems, sleep problems etc. but is seen yearly by the Royal Brompton in London and today we are seeing a doctor at our local Hospital who monitors his lungs and meds. He also has copd diagnosed in 2010. I do wish you well with your condition but just makes sure you get the best treatment you can and remember, it is your body and you know how you feel so don't be afraid to speak out. Good luck to you and hope to hear more from you soon. Take care. xxxxx

  • Hi Sassy59,

    Thanks for your comments, I also started on 30mg of pred and got down to 5mg by December 2012, then saw the Rheumy for my joint pains and he put it up to 10mg. Still feel the same as before, don't think it is doing any good only making put more weight on, which I don't need. Seeing Rheumy on 11th March and will see where we go from there.

    Thank you again, everyone has been so welcoming.

    Jan

  • Let us know how you get on. Take care. xxx

  • Hi Titchyi welcome to the site. I have RA which has caused problems with my lungs. I take 10mg of pred along with an immunosuppressant to try and control both the RA and lung disease. Unfortunately it hasn't halted the disease but may have slowed it down. I am now on the lung transplant list.

    I agree that you should try and see a consultant before June.

    Good luck and take care.

    X

  • Hello Gilliam, Thank you for your comments, I will be trying to get an earlier appointment to see my consultant. Sorry the RA has caused problems with your lungs, hope you get the call soon for the transplant, best wishes and hope all goes well.

    Will keep you all posted.

    Jan

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