Cushing disease dvts lung clots ?

Hi everyone ---- I have had Ra in all my joints since march 2006 -- suffer with BAKERS CYTS AND ELBOW FLUID .pleura effusion in left lung in 2007 since then painful joints and many flares until

Nov 2014 ---- suffer with a DVT left Leg which sent bloods clots to both of my lungs - hospitalised for 4 weeks ---- also diagnosed with Cushing DISEASE ---------------7 months on still not very well and waiting operation to remove cyst from adrenal gland --- anyone else had these diagnosed

on blood thinning tablets rivaroxaban long with Cushing tablets and RA tablets

6 Replies

  • Hi I've also got RA & OA and am waiting to have a diagnosis of Cushings Disease due to a pituitary tumour & possibly Agromegaly. It's taking a long time to get a final diagnosis which is very frustrating but I guess they need to get it right before they do surgery!

    I started Humira 3 months a go which seems to be helping my RA (also on MTX, Sulfa & hydroxy) however it's hard to know what is causing what!

    My mobility is far worse now than it was a couple of months following my knee replacement last year which I think is due to muscle weakness & pain caused by too much cortisol in the body - you'd think that it would help the RA wouldn't you!?

    I've also had DVT's one 10 yrs a go following a leg injury & then one last year after my knee replacement.

    I really don't feel well & wish they'd get on & do surgery although I think the recovery afterwards is a long haul.

    Have you found other websites regarding Cushings? I've found quite a few.

    Be good to hear from you.


  • Hi Pauline

    I don't know weather to take the risk of surgery due to possible blood clots - I am rivroxaban blood thinning tablets for the rest of my life

    as the DVT in my leg cause to large clots to go to each of my lungs and the hospital informed me that these clots could happen again has I have to stop my meds while they operate

    I am on MTX 17.5 only for my RA and oral oramorph for pain as I cant take diclofinic for swellings due to the med I take for my clots

    I take metopirone tablets for my high cortisol levels due to the tumour on the adrenal gland -- I have not be feeling very well with the high cortisol in my body and the hospital says this could of cause my clots and dvt

    I do not feel much better taking the above tablet to lower cortisol level as they have side effects

    I will discuss the risk of the operation with the surgeon in July

    please keep in contact -- what meds are you taking for your high levels of cortisol or are you still waiting for results from the dexamethodonse test

  • Hi I'm not taking any meds for the high cortisol at the moment, I guess they want to be fully convinced it is Cushings. I'm waiting for more results to come back - it seems to take forever!

    The trouble with Cushings is that is does so much damage to the body as well, I think I would want to take the risk of surgery but then that's me!

    Who are you under for your health care? I see an endocrinologist as well as a neuro surgeon plus my rheumy dr!


    ps what's your name?!!! :)

  • I also see endocrinologist and RA doctor, chest , blood specialists have you put weight on with the Cushing since nov 2014 to date 290-05-2015 I HAVE GAINED 3 stone

    endo says this is due to the cortisol levels in my body not working breaking my food down therefore I keep all the fat - it does not matter if I diet or exercise I will still gain weight until the cortisol levels are controlled or I have the operation so my other adrenal gland will then work normally and I will lose weight

    Endo SAY I should recover within a month after the operation and will be able to return to work

    I don't believe them I feel it will take a long time to recover and lose the weight.

    I have been off for 7 months -- due to the clots DVT RA and Cushing disease so I need to get sorted quickly I will go for the operation if the surgeon says its quite safe

    until then I on these mad tablets--- and getting fatter and fatter the tablets do not seem to of cured the weight gain !!!!!!

  • HI Pauline

    Please will you send me the e mail address for Cushing websites I can only find the NHS web site that is English for Cushing support groups the rest are America

  • Hi mac1313,

    I have had 2 DVT's both in February 2011, 2012 I was sent to the hospital for tests and now on Warfarin for life. No-one could explain how I got the DVT's, I was told it wasn't due to me flying each year long haul as the DVT's appeared almost a year later. I have had RD for about 18 years now and have just started on Tocilizumab infusions.

    Take care, good luck with the operation.

    Sue x

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