Anti Inflamatory Medications...may damage your stomach lining!

Hi Tangles and Earthia,

many specialists believe that sarcoidosis is caused by a bacteria..regarding triggers, it can be anything, as far as I know. from a disease to environmental conditions. in my case, the main cause was a TB infection, which triggered sarcoidosis, as a response of the body. No one can really explain it, but if you look online, you can find some studies and med articles explaining some things about this disease. However, many things are still unknown, including all symptoms.

Regarding anti-inflammatory medication, you could take it for a few months, Earthia. I also didn't want to take it, but my doc explained that if I don't take anti-inflammatory meds, the new lung lessions that formed in my lungs (this is how she called the inflammation I have in my lungs) will cause fibrosis, lowering lung capacity, which is low anyway (50%). I am glad I accepted to take prednisone because I feel much, much better than before....However, I will only take it for about 4-5 months, starting with 24mg/day for 1 month, and lowering the dose month after month (16mg, 8mg). just to keep sarcoidosis under control... I will take 8mg until the next check up in February. Then, we will see how everything looks and decide what else we can do. Anyways, I'll most probably stop anti-inflammatory meds because it's a high risk of TB recurrence. 

I must admit that I was scared, especially because I didn't want to go through the TB treatment again (this is what would have happened in case of a new TB infection); for this reason, I talked to my doc and we both decided that it's better to take a very low dose of anti-TB medication during anti-inflammatory treatment, just to be on the safe side.

So, my advice is to talk to your doctor openly, and tell him/her that you could try a low dose of anti-inflammatory drugs for a few months; obviously, if you wish so. sometimes, taking anti-inflamatory drugs for 3-4 months is enough to make sarcoidosis become inactive. Last time, when I took anti-inflammatory drugs for 6 months, sarcoidosis went dormant, with no symptoms for 3 years, which was great. I was able to go on a holiday, to the mountains every few weeks, and do many other things i wasn't able to to before. I also have some eye problems (my ophtalmolog said that I have some inflamation inside my eyes as well, probably due to sarcoidosis). when I asked about the treatement, he said that If I'm already on prednisolone, it will resolve eye inflammation as well. So, taking anti-inflammatory medication is not always a bad thing.

Hi magdafloasiu, thanks for your reply, sounds as if you have had a pretty bad time health wise. Seems we are all very unique when it comes to sarcoid doesn't it. Well, all unique anyway, thankfully, but it would be wonderful if a simple solution could be found that would suit us all. I saw a consultant yesterday and he is happy for me to be on antihistamines , ibuprofen and decongestant with a stomach lining repair pill too. I am happy with that, seems my breathing is the same as last year so why is the cough so bad? Thats when the allergy theory comes in, the scarring and granulomas are already there, so making life easier to put up with is the priority at the moment. Everything has its time and place doesn't it, guess we need to be patient while we are patients, stay well and happy.

Hi Earthia

You are correct, to move would be a major disruption to the family with them well established in our neighborhood. However it is not fully out of the question.

Interesting comments you have made. We have only recently started with a masseur. She will be working on my legs and ankles next week. I will mention it to her.

Steroids seems to be their only weapon. Don't rule out anti-inflammatory but long term use has it problems. This was the point of raising article in the first place.

​Great to hear you have such great neighbors with joyous Christmas carols in your living room.

hi Tangles, hope you find the massage helps, the trigger point therapy suggests you learn to do it for yourself 3 times a day as only you know what hurts where. fingers crosses.

At the hospital yesterday, saw a new chap who was more helpful and had more information than anyone I have met before. We  discussed steroids which he said help a third of people, a third see no change and a third find they have too many side effects, so he suggested antihistamines for the allergies, and a decongestant so I dont get catarrh and ibuprofen for the inflammation and pains, I told him I had already done all that which seemed to be helping, he also suggested Omeprazole to protect my stomach from the other pills.

Scarring and granulomas are the same so why is the cough such a problem?  Will  keep steroids as my next resort. Anyway had a good nights sleep last night which is a blessing. The weather is so cold now, dont want to go out, and every morning half of my right hand is numb. Oh I could go on moaning all night , but I wont. When I see some of the people in hospital I realise i have very little to moan about. Sometimes its just good to get it off your chest. i do find other people dont think it is much of an illness, nothing much to show for it in my case, except that cough. So will carry on as before and wish everyone Good health for the new year, and every year.

But do think about getting away from industry if you can.

Hi Earthia,

one quick question: are you going out in the cold? If yes, your cough could be related to that. I usually cough a lot during the winter if I go out. If I stay at home, no issues.My doc explained that cold inflames the upper respiratory tract, which makes me cough. Even if I go to the nearest store, which is 5 min away from my home, I cough...sometimes even for 2 -3 hours. If you go out, try to cover your mouth and nose with a thick wool scarf; it helps. If you also have sputum, you may try to get acetylcysteine, which is great for cough with sputum. get 600mg pills, take 2 a day for about 10 days if your sputum is very thick (this is what my doc prescribes me when i cough too much and sputum is thick - due to fibrosis). If your cough is dry, I can't help you too much because I always cough with sputum .

And yes, your sarcoidosis can be active and make you cough, even if there are no changes on x-ray. My last x-ray looked similar to the previous ones; however, my doctor told me to have a CT because she didn't like the fact that I was feeling worse than before. The CT showed the new lessions mentioned above.

And yes, besides sarcoidosis and TB, i also had thyroid cancer. If you have any thyroid problems - I hope you won't - feel free to contact me. I know a few things about thyroid as well.

All the best and take care,

Magda

Hi Magda,

I am careful about going out in the cold and do protect my mouth and nose so I dont breath cold air, but I cough just as much inside the house.

You have had a lot to put up with, the thyroid cancer must have been very scarry. I hope you take good care of yourself.

Something iteresting happened on Thursday, the new consultant I saw was very specific that coughing causes acid reflux even if you are not aware of it and can often be a big additional cause of coughing and asked me to take an antacid to protect the lining of my stomach from the pills I am taking and to reduce the coughing. I was somewhat sceptical and have taken 2 tablets so far, and must say my coughing has dramtically reduced, I really mean dramatically, I havent used my inhaler for 2 days where I use it 4 times a day before. I did have more joint pain each night even though I took painrelief which is a shame  but the relieving the cough is such a wonderful result. I will continue to take the antacid if this is how good it is. No-one has mentioned this before even though last year I did have a terrible time with acid reflux.  I see someone else gets the same reply that this is how the illness is. Anyway I wonder if the antacid might hep others too.

Interestingly this consultant also spoke of the scarring,granulomas and fibrosis as seperate problems to be dealt with individually.

I do have two very distinctive coughs, one very dry and one very wet, plus wheezing, I often feel my upper respiratory area is the problem but the doctors are only interested in the bottom of my lungs, for infection.

Hope my ramblings might be helpful to someone else, take care to enjoy as much as you can as I really think having positive thoughts makes life more bearable, when the going gets tough,

Does anyone else have different coughs?

Earthia

One of your comments rang a bell with me.

“I do have two very distinctive coughs, one very dry and one very wet, plus wheezing, I often feel my upper respiratory area is the problem but the doctors are only interested in the bottom of my lungs, for infection”.

My main doctor suggested recently to me with my wheezing that at my age 62 I may have a late in life on set of asthma?

He said to try two puffs of Ventolin first thing in the morning on a trial basis.

Well I did and it has been most successful. Overall chest situation is much better than it has been in years. All it took was two puffs every morning.

Might be of help to you?

Regards Tangles

 

I also used to have that annoying wheezing, which was keeping me awake in the night. In my case, it was due to build up of mucus. once the mucus is gone, the wheezing is also gone. but, I guess, it depends from one case to another.

take care,

Magda

Hi Magda, I think that is what I experience so I am now taking a decongestant at night.. It seems to be working well. Last night I forgot to take it and I did cough in the night and this morning I have sticky lungs and I feel bunged up in my nose. However I almost never get colds and flu, though my husband has lots of colds. I suspect it is because my immune system is working overtime. Does anyone else notice this?

Hi Earthia,

I've never thought of that. I also don't get colds or flu even though I'm around my husband, who gets two or three a year. Since I am on prednisolone now, I guess I must take better care of me, as this drug weakens the immune system, making me more susceptible to catching a cold...

 

yes, i agree, we need to be pro active in taking care of ourselves. I avoid groups of people, such as in theatres, cinemas etc, however I always feel better in a sports hall, the air con I expect, though i spectate more than participate, though I do try lol

Hi Earthia

I was refering to non steriod meds. I was exploring what can be done safely outside of the usual steriods that  the medicos seem to give to all of us with Sarcoid.

Tangles

I  completely agree, it must be so much easier for them to prescribe steroids than work through gentler alternatives, having said that the doctors do see endless patients who only want steroids, and thats ok for them, but we deserve a choice.

By the way I also had an inhaler last year, ventolin but instead of the normal push down type I have an "easy breathe" which is breath activated. I dont know if its better, and when i questioned it as opposed to a normal inhaler I was told to see the practise nurse and she would explain. Well as i didn't want to sit in another waiting room full of sick people and having had a son use an inhaler for nearly 35 years I turned to the internet, and still haven't really got an answer. Anyway it helps a great deal.

I forgot to say about the trigger point therapy massage that it needs to be very gentle, so gentle it doesnt move the kin, as light as a feather and performed in  a "compass point2 direction, by that I mean you stroke the painful spot up and down, left and right then both diagonal, and that it doesnt matter what directions you are stroking as it is such a very light touch. The point being that there is a blockage and we dont know which way to clear it so you massage in all directions, and it really does work. There is a web site for it which is very helpful, Trigger Point Therapy for pain relief, apparently JFK used it all those years ago to relieve pain. Worth a try for any pain I think, but you must read the warnings of who shouldnt use it and never over or next to a pulse point. Hope it helps someone else out there though I have told various friends and family who mostly seem sceptical, but it has worked for those who have tried it. Noy a cure but alleviates pain and no pills.

Hope today is a good day.