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
I'm on them for life but I've managed to get it down to a low maintenance dose most of the time, I get flare ups sometimes so they ramp up the dosage for a while until it settles again, although the disease continues to progress and they can't do anything about that. I have the same as you, lungs.
On higher doses I did get the moonface thing but I honestly don't care about the vanity stuff if the drugs are helping. When my doses first go high I feel like a million dollars, constantly at the gym and ready for anything, this lasts about 5/6 weeks and then I crash completely and generally feel pretty awful both mentally and physically but that backs off when the doses normalise. I have to be on 30 a day or more to get these side effects, once I'm down under 10 I feel pretty normal all the time (although it's hard to be sure after being on them for 8 years, difficult to remember exactly how I felt before).
Consultant says under 5 a day is ideal as side effects are pretty non-existent. Right now I'm on 3 a day but that's got to come up as I've been coughing again lately.
I would say don't worry too much if you have to go on them (unless, like some poor buggers you need constant high dosage but you don't seem to be in that camp), if the dose isn't too high they do ease your symptoms nicely. I read many horror stories when I first started on the pred and I was very anxious about it but 8 years later I run a very busy business, enjoy a drink at the weekend, go to the gym regularly and have as normal relationships as could be expected!
They can be a bugger from time to time but without them I'd have been safely dead a good few years ago, what's not to like
On higher doses I did get the moonface thing but I honestly don't care about the vanity stuff if the drugs are helping. When my doses first go high I feel like a million dollars, constantly at the gym and ready for anything, this lasts about 5/6 weeks and then I crash completely and generally feel pretty awful both mentally and physically but that backs off when the doses normalise. I have to be on 30 a day or more to get these side effects, once I'm down under 10 I feel pretty normal all the time (although it's hard to be sure after being on them for 8 years, difficult to remember exactly how I felt before).
Consultant says under 5 a day is ideal as side effects are pretty non-existent. Right now I'm on 3 a day but that's got to come up as I've been coughing again lately.
I would say don't worry too much if you have to go on them (unless, like some poor buggers you need constant high dosage but you don't seem to be in that camp), if the dose isn't too high they do ease your symptoms nicely. I read many horror stories when I first started on the pred and I was very anxious about it but 8 years later I run a very busy business, enjoy a drink at the weekend, go to the gym regularly and have as normal relationships as could be expected!
They can be a bugger from time to time but without them I'd have been safely dead a good few years ago, what's not to like
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.
C0ffin D0dger said:
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.
The consultant may want to keep the dosage higher for a little while but I wouldn't worry if he/she does, that's pretty routine in my experience. They will taper them and you will feel better.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.
If I could give any advise for the future I would say to generally look after yourself as much as you can, eat well, get plenty of exercise and address anything that's causing you stress. All very obvious stuff but my condition responds quickly to general well-being, I'm convinced it helps keep my dosages of the dreaded pred down. Good luck.
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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