So its 2.40 am I didnt finish work untill 11pm and after a 11 hour shift i feel pretty crap i am bloody shattered and cant sleep..... really!!!!.
So steroids! I am not getting on well with them. Feeling real blooming awful! And i never got all this pains before i started them. And my lungs feel worse then they ever did before! Is it not possible all they are doing is making them more agitated??
I am so fed up of feeling tired! And feeling crap for the last 2 weeks.
I started my tablets 60mh a day fot a week 55 mg second week 50mg 3rd week 45 4th week and so on and so on. And my specialist says "whatever you do dont stop taking them" ok then so what do you do when you feel so bloody awful and you have left several messages asking for a phone call back as you cant get an emergency apointment rawr! I know your busy and you cant see every single patient and every single moment a day and you do an amazing job (my gp and doctors surgery are actually very good) but its still frustrating today!
So i cant sleep and im so uncomfortable and the pressure in my chest is horrible and the more im worrying the less i can sleep. Hence the rante! Haha!
On a plus note i have all of sunday of work! And its nearly christmas
Sorry about the moan guys! Just wanted to let of steam!
I'm sorry to hear that you are feeling crappy today. I can certainly relate to that feeling. My legs & hip joints have been hurting off and on for about 3 weeks now, I had really bad Vertigo yesterday & the day before that. And last but not least, I've also been having chest pain and pressure from the pulmonary sarcoidosis. My doctor wouldn't give me steroids because he felt it would worsen my blood sugar being type 2 diabetic. So I just take ibuprofen for the pain in the legs, internal & ivy extract for the shortness of breath and the Vertigo tends to go away on it's own after a couple of epely maneuvers.
11 hours a day is a bit much to work when someone has sarcoidosis. We actually need all the rest we can get and not push ourselves too hard. But I do understand that some people need the income to pay the bills.
I do hope and pray that you soon find comfort, relief, and healing through all of this. Hang in there, you'll have better days ahead of you & the sun will shine on you again! 😇
Oh boy, do I understand where you are coming from!!!! I too have trouble sleeping no matter how tired and knackered I feel. Down to 25mg per day at the moment but still getting side effects - mainly swollen face, which has aaffected my sight as it's made my eyes puffy and back ache, my breathing's not too goo either. I actually phone the hospital docs secretary to get an appointment there as my surgery is a nightmare and to be honest I lost confidence in them from February this year (before diagnosis of sarcoid) as they treated me like some sort of neurotic who imagined feeling so ill !
Well, that's my rant too.
Guess we've got no choice but to keep taking the tablets (as they say) and hope the new year is better for us. Keep your chin up.
I have had this for 15 months. Was on a 80mg now 30mg of Prednisone with a 20mg of methotrexate weekly. I have stopped the methotrexate in the last 2 weeks. I start an 18 month chemo regiment of Remicad next week. My sarcoidosis is what they call stalled in my chest and lungs. I have it very present in my esaphugus, larnax and eys. I have had 10 hospital stays since the disease found my body and walked into my family's life. I was a very active 56 year old white male. Now on disability and gained 40lbs. Staying possitive having faith and friends and family keep me grounded.
This is the second time I have sent a reply or posted to the blog. It does help me get through my day.
Thanks to the steroids my immune system is shot one infection and sickness after the other. I have just spent the last day and night vomiting and we'll stomach cramps, I don't know if it's a 24 hr bug but whatever it is it's not the first time I've had it this year, in Feb I ended up admitted to hospital for 6 days with a bowel infection so fingers crossed it's not that again.
I'm so tired and my head is pounding I didn't even take the steroids yesterday because I couldn't even drink water.
My face is also more swollen today and the veins in my cheeks are split so I look awful.
So i have to ask. What do you have to take? If you cant take steroids do you have alternatives? Im debating stopping my steroids as soon as ive tapered of. I feel that alll they have done is made me worse. How are you? Have you been diagnosed for long? X
Haha i had to laugh at this. Its all in your head! I was starting to wonder if it was ya know. I have been feeling so unwell for so long it just became normal! And everything kept coming back normal never mind eh! Its a good idea though to call your specialist sec. What country you from x
Wow you really have had a tough time!!! And thats an awful lots of drugs! How are you getting on. Talk about active you sound like the perfect page boy for sarky!!! Haha i know sometimes you just gotta rant ay! Anyways moaning is good for the soul if you ask me. Get it out your system. Its hard to sleep when im worrying and when your uncomfy! Sorry to hear about how rough youve had it though. Chemo drugs sound scary surley that is some hardcore stuff x
I still take them I've been on them 14-15 months now and will prob be on them for the foreseeable future. I'm so sick today, whatever about the sarcoidosis but now this. My joints are aching.
Hi Katld. This sarcoid really is a pain - in more one's than one!. I think it wise to discuss with your doc/specialist about permanently coming off steroids as you may be able to get down to a low maintenance dose? It's something I'll have to consider when the time comes. All I know for definate is that I dont want to be as ill as when it first started in Feb this year but neither do I want to have the side effects from long term use. I look like the father in the trebor mint with the fat face (Ha.Ha.)and I hate it. Have not considered alternative drugs at the moment - I understand that they are chemo drugs used as anti-inflammatories? Scary.
I live in Norfolk and my specialist retired in June and has not been replaced, so I've been seen by different respiraatory doctors at each appointment since; so although I've no complaints about them they are not 'specialised' in sarcoid.
Ohhh dont worry im sure you rock the sarky face look haha!!!! How much did you start and is predisone and predisolone the same drug? I actually have felt worse since starting the medication then what i did before. Surley thats not a good sign lol. And hopefully your new specialist will be just as good as your old if not better. Ibe only met mine once and the jurys still.out lol x
I take supplements which have helped me for a long time since I can't do the steroids. I take Moringa Oleferia once a day. It's a green plant supplement full of the essential vitamins & amino acids our body needs on a nutritional level. I also take 1 teaspoon of Apple cider vinegar in half glass of water 3 times a week like every other day. I take 1/2 ounce of Fucoidon supplement every day which contains brown seaweed. And last but not least I eat papaya fruit whenever I can which is good for the digestive system. Eat as much fruits & veggies as you can. I don't eat too much red meat, no pork at all & Drink lot's of Alkaline water whenever possible. It took a while to dissapline myself & do the research since I couldn't take steroids. I just knew I had to find some relief for myself. I was diagnosed in 2004 and I'm 62. And I pray a lot for healing!
Making some lifestyle changes is the best medicine I found that's working for me. I hope that you can find relief as well!
The two named drugs are the sameand unfortunately the side effects seem in lots of cases to be worse than the sarcoid if we're unlucky and guess wht it seems we are LOL. Don't know when specialist will be appointed but I've heard that MILLIONS have been paid to a consultancy firm for the next few years to improve services????? Are you in the USA? Are the docs more sympathetic to the various aspects that come with the sarcoid? Or can they be dismissive as they seem to be here - maybe it is because it is such a mysterious complaint? It sure has us complaining anyway.
I am actually really interested in this. Any advice you ca help me would be brilliant do you take anything to help the fatigue? Also do you know of any advice pages i can look at? Did your doctor recommend the stuff you take and do you have many flare ups?? Would really aprechiate any advice as im thinking of stopping steroids as i feel they have made me worse then what i was before. After this bout of treatment anyway. Thanks for replying x
hope you feel better soon xx