Azathioprine??

Chest and lungs
1

Hi,

Anyone else on Azathioprine for their Sarcoid?

Have bad skin Sarcoid (facial and all over) and lungs (lungs no bother though) Tried Hydroxychloroquine for 4 months with no effect, so recently put on Azathioprine, an immune suppressant, which seems pretty serious stuff with potential scary side effects? Thanks, Sean

2

Was also on Hydroxychloroquine, this had no effect, also like you my lungs are not an issue, just my skin. Prednisolone flattens the lumps but leaves the area dry and quite purple. My nose has gone back to its normal size but still looks purple.

3

Hi sdpink,

Is Prednisolone a steroid? believe this is used a lot in Sarcoid, but I have been told I can't take steroids cos already on steroids for Addisons disease? yep, got 2 rare conditions, great

4

Hi Sean

As I understand it the Hydroxychloroquine is a pretty mild immunosuppressant, but its good to have it 'in the mix'. More potent drugs like azathioprine and methotrexate will calm down your raging immune system, but need more monitoring.

I felt immediate improvement when I went onto MTX and it helped me to wean off whopper steroid dose . Yes it has side effects, but it helped me to get on with my life better. My Dad has been on Azathioprine for 15 years and he's still going strong and not needing steroids!

For me, when sarcoid was stopping me leading a normal life I knew I needed to take the more potent drugs and swallow the risks and side effects

Best wishes. Hope you feel better soon Newton

5

Hi Newton,

Thanks for response.....changes to meds again...As I mentioned in an earlier discussion, I was not given prednisilone cos of me already taking another steroid (hydrocortisone) for Addison's BUT my respiratory consultant has had had a three way debate with my dermo and Addisons consultants......Hey presto, predisilone is an alternative med for Addison's, so now off my hydrocortisone and off the Azathioprine, one tablet cure all. BUT, BUT started on 30mg and OMG..Couldn't sleep at all, as soon as started to nod off..zap, wide awake all the time, even when totally exhausted, getting about 2 hrs a night, anxiety, doped, irritable, shakes, felt like hell, bad tripping. Now reduced to 20mg..hoping, On the plus side, lumps on skin looking a little flatter (but is this a result of being on Aza, or pred?mmmm) 

6

Hi Sean, can I ask a question about the skin sarcoidosis please as I have a nasty dry patch of skin on my nose which won't go away and as I have had sarcoidosis for 10 years on my lungs which has spread to my sinuses  I can't but help think it's now spreading to the skin! There is also some question as to wether it's attacking my eyes as I keep getting tiny little ulcers on the eyelids but have not been referred to the hospital eye clinic yet!

I wondered how yours first presented as obviously I need some information to go on before asking my GP about it

7

Hi Rachael, I first noticed small red raised 'spots' on my chest, two patches with 3 or 4 in each patch and one on side of my nostril. These were about 3mm in diameter, red, smooth, shiny and soft. over the next couple of months, I developed loads, all over my chest and back and face, some were quite large (upto 10mm) and darker, purple, like a boil but with no yellow head. I did notice a couple appearing almost instantly on my face, starting as bright red, bit like a small blood blister, then turning slightly darker and bigger. Bursting these did not make them go! They never presented themselves as a dry patch. They do dry up a bit and form a fine crust, which when removed leaves a shiny spot again. But not sure if everyones look the same, took two biopsies and 3 dermatologists to diagnose!! Its then that they found them in my lungs. I have had eyes checked, ok, apparently they can rarely appear inside the eye (retina I think). Good luck, hope this helps..keep in touch

8

Thanks for that Sean, much appreciated. Will see what happens at next check up in August. Seems I'm the reverse to the way your symptoms appeared/developed. Like the Drs have said at hospital that's what makes this condition so difficult to treat as it's never the same in any 2 patients! Deep joy!

Anyway trust you are ok and as they say watch this space!

9

Hi Sean,, I am also on Azathioprine I am in my fourth year on this drug not pleasant.  I have sarcoidosis in my long. 

10

Hi Margaret,

What is not pleasant with the Azathioprine?, are you suffering any side effects? I am back on it again after being taken off it in preference for Prednisilone (but suffered badlly with Pred) So never actually taken Aza for more than a few weeks yet, no bad side effects so far (but maybe time may tell). Is the Aza effective against your sarcoid?

Thanks for talking

11

Hi Sean, I have sarcoidosis in lungs and in my 27th year.  Had a bad relaps 4 years ago and was put on Azathioprine ever since. So times I vomit and have noumorous side effects. I am also still on the steroids plus others. I try to cope the best I can and not let my illness gat the better of me. At times I am so tired and weak I cannot get dressed.