When coming off predisolone.
Posted , 3 users are following.
So im wondering what your experiences of coming of predisolone?
Abit of background. Diagnosedd with sarcoid in september 16 been on predisolone since then
40mg untill 2 months ago. Then specialist told me to goto 10mg maintenance dose as i was struggling with predisolone side effects.
Cut down to 10mg decided (against doctors orders) to come off the predisolone and try low dose naltrexone. So after several attempts ive finally been of them for 4 days now but having a few side effects just wondering if anyone has tue Same.
I was feeling funny in my head.
Tiredness/fatigue
Achey ankle joints and hip joints
Bruising randomly.
Other then that it hasnt been to bad as of yet and i feel ldn has helped me coming off the predisolone as ive not managed to come off them before. So im sure feeling unwell is normal. But im feeling better then i have neen on pred.
Sorry for the essay just interested in everyones experiences and how long it took you to feel normal again? And omg the achey joints# x
1 like, 6 replies
Magghe katld
Posted
When I first went partially blind they started me on a 60mg taper dose in November 2016 once I reached 10mg I stopped because I couldn’t handle the side effects and the Dr. agreed they were valid enough to not prescribe it in the future….at least at that dose…MAYBE if I had to….a lower dose for shorter time would be tolerable….. When they finally diagnosed me with Neurosarcoidosis in February 2017 they already knew I couldn’t handle the prednisone, nor did it work for me. So they started me on H.P. Acthar Gel. It is Cleveland clinic’s alternative to prednisone and acts in the same manner but with much, MUCH more tolerable and much MUCH less side effects…but unfortunately it is very expensive….but it is an awesome drug that works in the same manner with better tolerated and less SE’s. But when I failed to improve fast enough (we did see some improvement so it WAS working…just not fast enough) they switched me to Methotrexate and Humira L I haven’t taken those long enough to know yet if they are working but they do make me feel crappy but in different ways.…but I haven’t lost anymore vision so something is working a little. It took me weeks to get over the prednisone’s worst effects (fogginess, sleeplessness, whole body ached, crying at the stupidest things etc.) and the more minor but just as irritating weight gain is coming off but I’m still working on it. but I also gained with the Acthar Gel and I have only been off that since May 1st. I gained 30lbs on those two drugs and I’ve taken 20 off, So your side effects may continue for a while. I cannot comment on the bruising because they started me on an aspirin too and they kept that so my bruising could be all the injections I give and have given myself and the aspirin. I’m sorry you are going through this but it will get better and this site is awesome for info. They have helped me so much on here….very nice people, very upbeat. Some of the other sites are scary!
Take care!
Magghe
katld Magghe
Posted
You went partially blind that must if been scary. Are you ok now?
Nurosarcoidosis can I ask what your symptoms were and how you were diagnosed?.
Thanjs for your response xxx
Magghe katld
Posted
But I am at 20/20 in the seeing part of the blind eye now(the blind spot is still there though) and 20/12 at my best in the good eye. I doubt I will get any vision back…my brain has just adapted really really well. Their goal now is to avoid any further vision loss in the bad eye and preserving all the vision in the good eye.
That was my only symptom…they tested me up and down from November to February then they did a MRI think MS and someone suggested Sarcoid so my eye dr referred me for a lung biopsy. The lung biopsy proved the sarcoid…the MRI showed it was in the brain and neuro said it was in the visual pathways.
In 2015 I had recurrent Atypical “pneumonia” but it always resolved so we never perused other reasons for it. I was atypical because I presented with no fever and no cough…just pleurisy all 5 times. The first bout I ended up in hospital and I was only breathing with 1 Lobe. One lung was completely consolidated and the other was half consolidated. I noticed nothing but the pain my O2 sat was 98% I was never on oxygen…my body is really weird! So I finally resolved the lung sarcoid naturally…but thank God for it because otherwise they would have biopsied my brain LOL but Im very lucky no scarring or anything in lungs. Out of all the stories I read I am truly lucky I have blindness in one eye but that’s really it. My vision is really better than it ever was. Before I aged I had 20/15 but I had recently gone to 20/20….as we all do when we get older…my eyes were aging…but now they are better than when I was half this age (well the good one is anyway….) LOL I only asked my dr. for enough vision to draw again and hike again (climb rocks etc)…. And I can do everything now that I could do last summer (Draw, Hike, Etc) so I consider myself lucky as long as I keep my right eye vision….that’s the only scary part…that I could MAYBE loose that. The medications were also scary to me because I went from zero meds to 10-11 (depending on the day) oral meds daily and 2 injections weekly….only 3 are supplements to boost my immune or counter act the hair loss I have from the Methotrexate. But seriously Im a weird one they even consider me “complicated” because of my weird case and how it didn’t respond to pred or Acthar and the fact that all their tests just showed how healthy I was. LOL I cant say how much this site and my pharmacist have done for me in getting used to the meds. And understanding this crazy disease. Sorry for such a long answer L how did they discover yours if you don’t mind sharing?
katld Magghe
Posted
Mine was actually just due to rib pain.
I had my daughter and carried so high it was always put down to that but 2 years later I was still feeling run down and still had the pain. So eventually they sent me for a xray. Found "nudules and a glassy area) which was scary. They then sent me for the procedure when they put a camera down your throat and into your lungs exceot i couldnt hack it. Then a biopsy. And thats where we are at now.
2 rounds if pred and i feel wirse then what i was in the first place. I have just came off predisolone and got pribate with low dose naltrexone but only beem on it a week so esrly days yet as to weather it will do any good. Not only that coming of predisolone gives you lots of lovleu sode effects. My body is so achey 5 days on. I feel so weird.
To top it off i have astigmatism (tiny one) and i feel its maybe getting worse which means sun light is giving me headaches and making me feel funny agaian rawr not that i can moan in comparison.
You sound like youve had a rough time of it. How do you feel in general and how long have you been diagnosed for?
On a random note. I need packers
Moving house but im so achey I just cant be bothered!.xx
Magghe katld
Posted
I definitely have not had a hard time compared to many other people I lost the vision in my one eye in October 2016 after testing me from head to toe they finally diagnose me in February this year other than the fact that I had to get used to Blind Eye I felt it wasn't until I started the medication that I felt bad I had some fatigue but was still very active I know it will get better with the medications so I am just waiting For that so i can get back to normal
The_Chief katld
Posted
Hello Katld, With myself I was on Prendisone and other steriods treatments like inhalers in the first 6 months back in 1987 at age 21 as they didn't know what was going on with my body until they eliminated every other bad thing I could have had but it was Sarcoidosis in the Lymph nodes mainly in the lungs, so I was giving a Lymph node Biopsy plus the removal of some that were cutting my airways off my capacity was at 25-30%, I was bed ridden for 3 months and took another month or so just to walk up the street about 400 metres. After 6 years of high doses of Prendisone/Steroid inhalers I decided to pull the pin on the treatments as I was feeling much better but the side effects were annoying my hair went grey I was forming excessive breast tissue amongst a few other things, but I have been getting checked for bloods every six months and x-rays every 12 months to stay on top of it. But I'm a healthy person at the moment but must manage the simple common cold as that can put me in Hospital for my immune system has become shot mainly due to the heavy medications at the time but now I hear the treatments are more straight forward these days then what I received. I do have constant 24/7 joint pain most likely the side effects of the medications and have constant blister pimples, constant itching and sweats but I can look back at it that at the time and think well I'm still ticking the main thing above all is to stay Positive for that is what has kept me going plus I've had and have a good Doctor that knows about Sarcoidosis. Sorry for the drawn out story but I tried to shorten it down a bit lol, anyway good luck hopefully you can get on top of it but never lose hope.