Sarcoidosis and Medication
Discussion
I posted on the thread of fellow PH sarcoidosis sufferers a while back that I've been diagnosed with this. For me it's mainly effecting the lymph glands in my chest but there is some lung involvement as well. I've had all the tests and generally things are okay, lung function is good etc. and at my last appointment I decided with the consultant that it wasn't causing me enough trouble to warrant starting any medication. My next appointment is for mid August prior to which I'm expecting to have another CT scan to see how things are getting on in there.
My question is just how bad are the side effects of the medication (steroids)? When I had the conversation with the consultant he listed the many side effects and initially suggested to avoid the medication if possible but then backtracked slightly suggesting that if there is lung involvement that it may be worth considering.
I'm undecided now as I do have the occasional flare ups and every day I'm reminded that it's there is some shape or form (wheezy, tight or rattly chest). It's not enough to effect my quality of life but then I think I'd ultimately like to be free of the symptoms. What's also prompted this rethink is I'm currently having a bit of a flare up and we're off on holiday next week to the Algarve for a fortnight, I'm hoping it won't cause me problems on holiday but it would be nice to not have to worry. I'm sure stress plays a large part in it all as well as the holiday is stressing me a bit and I also seem to be having the usual week of hell at work trying to get everything done before I leave.
What can I expect from the medication in terms of clearing it up, I've heard that for some it can get the condition to a point that you're pretty much free of it and no longer need medication, for others they can be on a maintenance dose of the drugs for years after, possibly even a lifetime.
As an aside has anyone had any success with any alternative therapies?
Sorry, that was a bit long winded. Thanks for any advice that may come my way
My question is just how bad are the side effects of the medication (steroids)? When I had the conversation with the consultant he listed the many side effects and initially suggested to avoid the medication if possible but then backtracked slightly suggesting that if there is lung involvement that it may be worth considering.
I'm undecided now as I do have the occasional flare ups and every day I'm reminded that it's there is some shape or form (wheezy, tight or rattly chest). It's not enough to effect my quality of life but then I think I'd ultimately like to be free of the symptoms. What's also prompted this rethink is I'm currently having a bit of a flare up and we're off on holiday next week to the Algarve for a fortnight, I'm hoping it won't cause me problems on holiday but it would be nice to not have to worry. I'm sure stress plays a large part in it all as well as the holiday is stressing me a bit and I also seem to be having the usual week of hell at work trying to get everything done before I leave.
What can I expect from the medication in terms of clearing it up, I've heard that for some it can get the condition to a point that you're pretty much free of it and no longer need medication, for others they can be on a maintenance dose of the drugs for years after, possibly even a lifetime.
As an aside has anyone had any success with any alternative therapies?
Sorry, that was a bit long winded. Thanks for any advice that may come my way
Thanks for that. Puts my mind at ease slightly.
Had a troubled two weeks on holiday where most nights I was struggling to sleep due to the coughing and discomfort though I'm not sure the heat helped much either. Tried to not let it spoil the trip but I would have enjoyed it a lot more without the symptoms. Moral of the story is not to have a holiday with an underlying medical condition that can flare up at will without having the drugs to deal with it.
Decided something need to be done on my return so managed to get my next appointment with the consultant shifted forwards to the middle of July but this was too long to wait so have seen the GP. She put me on antibiotics for a week as she thought I may have picked up an infection but I kind of knew after trying three different lots of antibiotics to shift the "infection" late last year that they weren't going to make a lot of difference.
Went back today and have been put on Prednisolone (steroids), 30 mg to start with, gradually tapering the dose down after 5 days until I'm on 5mg. Hopefully that will sort things in the near term and consultant can advise after that. I'm hoping they take effect fairly quickly as I'm going to a stag do on Saturday so would be nice to have a few beers without the worry of being up half the night coughing.
Had a troubled two weeks on holiday where most nights I was struggling to sleep due to the coughing and discomfort though I'm not sure the heat helped much either. Tried to not let it spoil the trip but I would have enjoyed it a lot more without the symptoms. Moral of the story is not to have a holiday with an underlying medical condition that can flare up at will without having the drugs to deal with it.
Decided something need to be done on my return so managed to get my next appointment with the consultant shifted forwards to the middle of July but this was too long to wait so have seen the GP. She put me on antibiotics for a week as she thought I may have picked up an infection but I kind of knew after trying three different lots of antibiotics to shift the "infection" late last year that they weren't going to make a lot of difference.
Went back today and have been put on Prednisolone (steroids), 30 mg to start with, gradually tapering the dose down after 5 days until I'm on 5mg. Hopefully that will sort things in the near term and consultant can advise after that. I'm hoping they take effect fairly quickly as I'm going to a stag do on Saturday so would be nice to have a few beers without the worry of being up half the night coughing.
Took my first dollop of the 'roids yesterday with lunch and it was followed with a largely uninterrupted nights sleep (pesky 2 year old daughter aside) 
Hadn't expected an improvement so soon though this morning weirdly my chest is a bit more rattly than usual. Oh well had the next dose with my breakfast as that's when I intend to take the stuff regularly. See how today goes!
Not got fat yet
Hadn't expected an improvement so soon though this morning weirdly my chest is a bit more rattly than usual. Oh well had the next dose with my breakfast as that's when I intend to take the stuff regularly. See how today goes!
Not got fat yet
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