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Hi im new to group I have neuro & lung sarcoid 3 yrs ago I had mt Gallbladder removed which was found to have sarciod tumor attached I now have pain and swelling to my stomach like when before I had the gall bladder removed i fear its blocking the bile ducts now, has any body had anything simular I would love to hear. I am now taking mycophenolate and not steriods what do others in the group feel about this new method of treatment

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  • Posted

    Hi Kirsty,

    Welcome to the group.

    I'm currently waiting for the diagnosis of sarcoids to be confirmed though the specialist says he is 99% sure I do have the condition.

    It's interesting what you say about your gallbladder as I had mine removed about 3 years a go due to a lot of pain. The surgeon said though they didn't show up on the ultrasound he expected to find gallstones when he looked at it under a microscope. Interesting he didn't find any and so couldn't explain why I was getting the pain. 3 years on I still get the pain just like before. I wonder if it was sarcoids after all as I was never told of a cause.

    Are you seeing a specialist about these pains? If not might be worth a chat with GP or neuro/lung specilaist.

    It will be interesting  what they have to say. I will certainly bring up the possibility of sarcoids affecting my gallbladder when see my specialist next month.

    Take Care

    Cassy x

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    • Posted

      Hi, thanks for your reply

      I've had it 8yrs now 2 yrs of that the hospital didn't tell me they had found it in my lungs. I have a neuro specialist but I wish I had a sarcoidosis specialist as he finds it hard to sort out other bits.

      Sorry to hear your news but if diagnosed take the name of my medication to your GP try not to have steroids as they made me diabetic. 

      On the up side for you I was told I would be in a wheel chair by now, although some bits don't work well I still work in my hairdressing salon , got divorced due to my p illness but am never happier as I am a nan now and manage life better without the husband stress. Stress is very bad for sarcoidosis.

      Good luck with everything, kirsty

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    • Posted

      Hi Kirsty. A huge welcome to the ever growing group. It certainly sounds like you have been through the mill a few times you poor thing. Shame on hubby for not supporting you at such a crucial time. I guess you learn who your real close friends and family are at times like this. On the up side (if there is one) it is better to have found out now than later as you can still enjoy life or rather enjoy it more without all the stress etc. You are so right about stress. It is a huge factor in any disease but I'm hearing more and more about its part in Sarcoidosis.

      I can't really offer a reason for your continued pain after your cholesystectomy other than sarcoid granulomas possibly blocking the remaining bile duct. This could be due to one or two they missed or new ones forming. They always check the bile ducts during the operation. - Well almost always although it may also depend on whether they did keyhole surgery or invasive surgery as to whether they tested the bile ducts. Also, although you can eat as normal without your gall bladder sometimes people find they get bloated or sometimes get diarrohea after eating a fatty or spicy food and this of course could lead to abdominal pain. However a slight adjustment to diet would sort this out. Had you been on steroids when you had the operation I might have thought the raised cortisone levels we get while on steroids might have been causing the nerves around the operation to cause you a lot of pain but that is a long shot anyway although no impossible. Cortisole and damaged nerves do not agree. I have had reconstructive surgery to both feet, twice - The first time the surgeon made a terrible mess and second time a different surgeon tried unsuccessfully to repair that damage. The nerve damage to my feet left me permanently disabled in a wheelchair and in pain 24/7. I am on steroids and the cortisol from it coats the damaged nerve endings and gives me even more pain. Mycophenolate is one of the anti rheumatic and immunosuppressant drugs. It's side effects are almost on an even plane to steroids in that you have to watch out for being in contact with shingles and chicken pox, you will bruise more easily and you catching any infection is more likely. There again what drug doesn't have side effects? It's more important to find a medication that works for you while not causing or at least causing the fewest side effects. It's clear that having had to put up with the steroid side effects you are doing okay on Mycophenolate. Did your diabetes resolve after coming off the steroids? If you were on the steroids for a long time then it could take years to resolve and I'm not too sure that the Mycophenolate wouldn't also prevent your diabetes from being resolved. Lets hope you get off the medication eventually and the diabetes and any other disorder goes away. 

      I have just discovered that I now have Cushings Syndrome due to the steroids. However this should resolve itself if I ever get off the steroids which Ive been told isn't likely.

      I have had my gall bladder removed over 30 years ago  (good God I can't believe it is that long ago!) It was done long before my sarcoidosis and I had it done due to it being diseased. I'd had Hepatitis A, several years earlier so the surgeon thought this was why my gall bladder had become diseased. I had a bit of a close shave too as the surgeon told me another couple of weeks and I would have died! (This is a very, very rare thing to happen so please, anyone having their gall bladder removed don't worry. It is one of the lowest risk operations you can have, I was just unlucky)

      I am shocked that the hospital didn't tell you that you had pulmonary sarcoidosis. Did they give you any reason? My goodness you could have attended different doctors etc and you wouldn't have been able to tell them about it. Way to make diagnosing a patient even more difficult not to say the possibility of ending up on the surgeon's table for surgery you don't need or given medication you don't need. I hope you called them to task over it.

      Good for you to keep on working. I can't go out to work but I've started a card and gift website so what was primarily just a hobby I'm trying to make into a business. It's terribly hard to be noticed on the Internet though. I seem to be just spending money with nothing coming back and I'm nearing the end of my first year. Oh well at least it keeps me out of mischief ha ha!

      Regards,

      June

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    • Posted

      Well done for having a go to do a new buisness  I own my salon and work it with my daughter and niece so keep it small and busy. I got steroid induced diabetics due to oral and intravenous over a long time. I was told my sweats were from and early hysterectomy so put me on hrt it's been interesting to read from people how sarc gives sweats. I am go to try coming off the tablet see if I can control the sweats. 

      Regarding my gallstone and pain I was told I had an inflammatory Tumor that we're blocking the bile ducts so I've also thought it had regrown and so I have asked for more scans.

      Sorry to hear u developed Cushing's I've heard of it but no nothing about it. Hopefully when u stop steroids that too will stop. Thanks for taking the time to write back

      Kirsty x  

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    • Posted

      Hi Kirsty,

      I would argue the toss with your doctor regarding the sweats being caused by early hysterectomy. Both my daughter and I had total hysterectomies in our early 30s. We had no sweats and I didn't stay on the hormones they gave me because they were causing me too many other problems. It is advisable to stay on the hormones you have been given because without them you will be prone to osteoporosis which I now have in my lumbar spine and now probably other places too. If you find you have to come off them you must only do this very slowly and be prepared for things like depression and irritability akin to severe PMT which the horemones have been keeping at bay.

      Sarcoidosis and the steroids used to treat it causes sweats. The sarcoidosis itself caused me to sweat so profusely that I would have to shower and change my clothes so many times every day I felt as though that was all I did all day.

      Did your diabetes resolve itself or have you been left coping with that too?

      I probably won't get to stop taking steroids because each time they have tried to wean me off them the sarcoidosis has become bad again so he has said I will be on them for life but hopes to get me down to a minimal dose.

      Please rethink your decision to come off your hormones.

      June x

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  • Posted

    Hi Kirsty,

    I've had Sarcoid in my lungs and skin for ten years now and for a completely different reason I had my bile ducts and gall bladder removed five years ago. I still from the adhesions and I'm told this is quite normal, but Sarcoid being what it is ALWAYS get it checked out. I do not know this other medication but intend to check it out as I hate being on steroids and I am constantly battling to reduce the dose as I too have been told I'm on them for life. I cannot work unfortunately as I also have Fybromyalgia and arthritis, never say never and I'm trying to think of something I could do that won't let people down when I get my bad days/weeks. Any ideas folks. Kirsty, you sound like a person who won't be beaten, that will be your biggest asset. Ask your GP to refer you to a lung specialist, get him/her to google the best one in the area for sarcoidosis, mine did that for me and after two years of complaining of exhaustion to my local specialist,  the new guy checked for sleep apnoea and now I no longer fall asleep in my food,,, he's great with Sarcoid too.

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    • Posted

      Hi Kirsty,

      I aalso got checked for sleep apnoe but the test was only done over 24 hours. I knew I was suffering sleep apnoea as my cat would always pat my face until I woke taking in a huge gulp of air. I suffer terribly from fatigue and like you have fallen asleep at the drop of a hat. I often wake up on my computer keyboard! I have to take naps during the day, every day to avoid falling asleep at other times. I also have to make sure I use my seatbelt on my wheelchair to prevent me falling out.

      I can't work either because of all the different problems that comes with sarcoidosis but I started making cards and gifts to try and make a living. So far I haven't had one order from my website but I am patient. Also I made a load of business cards and I am going to ditribute them where ever I can. I think it's important to try and fill your days with something because it is too easy to become isolated or to give up and not try.

      My advice would be to do something that you enjoy and on the days when you are not doing so well take extra rest.

      June

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