Sarcoidosis symptoms and conditions

A year ago I was diagnosed with Sarcoidosis and began taking 50mg Prednisone per day. The worst side effects in the beginning were weight gain, moon face, facial hair, hump-back neck, bruising (for example, just by my knees being together while I sleep,) excruciating joint pain and water retention to the point I felt my skin would split open. And poor vision which could have led to glaucoma, but an eye specialist put me on eye drops to reduce the pressure to normal levels. I've felt horrified and embarrassed by the change in my appearance but relieved that my sarcoid was being treated.
I feel confident in my case that Prednisone was the necessary treatment. My pulmonologist, opthamologist and regular doctor all agreed on a course of treatment. But I really advise people to get a second or third opinion before they take it. A friend of mine was prescribed a weeks course of Prednisone for a severe sinus infection. Luckily she didn't have any side effects but I really question if it was necessary. I'd also like to stress that if you're on Prednisone and experience worsening vision, please see an opthamologist who is a glaucoma specialist because it can lead to blindness if not treated.
And lastly, sorry this became a novel! I have been tapering off and I'm down to 20mg. But recently I've noticed my hair is thinning so much. I lose a ton when I brush it and it clogs the drain when I shower. Also my skin is shedding. When I shower and use a loofah sponge like I've always done and I lose layers of skin like a snake. I would really like to know if my hair will start to grow back when I'm finally off the Prednisone or am I going to lose it completely??

Hi everyone, I just want to say thank you for all who shared on this site. I am a 47 year old woman. I have spent several hours reading posts last night and today, and discontinued my Singulair last night. I have been taking it for approximately 4-5 years for mild asthma. Since then my health has gotten worse and deteriorated rapidly in the past year. I have had chronic chest congestion leading to frequent infections. Have had pneumonia three times in the last three years and frequent bronchitis. In the last eight months I have been on antibiotics more often than not, along with Singulair and Advair and frequent rounds of prednisone. Still I continued to worsen. I have had a rash on both legs since March which clears up with a shot of prednisone, but comes back within a few weeks. I've been going to bed nights by 7:30 and still find it hard to get up and go to work. Energy levels would vary, but some days I literally felt as if I could not keep putting one foot in front of the other. I have always been the quiet, serious type and prone to depression, but this past year it has been getting progressively worse. I have become very antisocial and even missed my son's wedding because I was so stressed out about it. I have also had alarming hair loss and just feel that my body is in a very depleted state.
My doctor, an allergist, ran a number of tests, but could find nothing. He finally referred me to a specialist at a University. He did a bronchoscopy and tested for tuberculosis and sarcoidosis because I had very similar symptoms to both of those diseases. They were both negative, but they found a rare form of bacteria in my lungs that doesn't respond well to medication. They felt that it should run its course eventually. I'm sure all of the immune suppressing drugs I have been on have made it difficult to recover from this. Aside from a two week prescription for a form of sulfa which they felt the bacteria may respond to, I am off all other drugs. For congestion they have prescribed a therapy vest instead of medication. I am very anxious to see if being free of Singulair and Advair helps me to recover more quickly. Already on day one I feel a better outlook on life and even went on a shopping trip with my mother today :-) I can't say at this time what role Singulair has played in all of this, but am anticipating an improvement after reading all of your posts. Thank you.

Hi everyone,

I am a 25 year old female who was diagnosed with Crohn's disease one year ago. I stumbled on this website and wanted to share my experiences to let others know they are not alone and that their side effects due to Prednisone are completely normal.

In Nov of 2007, I was in the hospital for a Crohn's flare up and was put on prednisone through IV (240mg/day). After a three days I was released, but one week later, had another flare up and was back in the hospital in December of 2007. This time, I stayed for 6 days and was on 240mg/day again through IV, along with taking Flagyl and fluids for my flare up and infection.

At first, I lost about 10 lbs due to the flare up and all of the medication I was on. However, within 3 weeks time, I gained 28 lbs and was a complete mess. I looked different, felt different and was emotionally and mentally drained.

My side effects included: Severe moon face, buffalo hump, increased appetite, hair thinning and severe hair loss, night sweats where I would have to change pajamas 3-4x a night, OCD to the point where I would have to clean my entire apartment (even if it was already clean), restlessness, anxiety, no sleep and sometimes I would go days without sleeping, increased thirst and dehydration, swollen eyes and headaches, depression and mood swings, upper and lower abdomen swelling and weight gain (28 lbs in 3 weeks), suicidal thoughts, unbearable muscle and joint swelling and aching, forgetfulness and memory loss, blurred vision and dark hair growth on my face near my sideburns and underneath my chin and on the bottom portion of my face. Bottom line: it was unbearable and nobody warned me about the harsh side effects of the drug.

When I left the hospital, I was put on 60mg/day and eventually weaned off Prednisone over the course of 2 1/2 months and took my last 5mg dose in mid- February 2008.

It is now 2 months since I have been off Prednisone and as of now, I have only lost 7 lbs, but much of the moon face has gone away and I don't seem as swollen in my chest. My appetite returned to normal the day I stopped taking the drug and my mood swings subsided one week after stopping Prednisone. I still have the buffalo hump, but it stopped hurting and I am now able to sleep through the night. The fluid retention seems to have moved south towards my legs, arms, and lower abdomen. My doctors say that within about 6 months after stopping Prednisone, most of the fluid retention should go away and they recommend walking for 45-60 minutes/day to help with the fluid/weight gain.

Overall, prednisone helped to save my life and put my Crohn's into remission, but is one of the WORST drugs I have ever taken. My heart goes out to anyone who has had to take this drug and trust that you are not alone--and the side effects are real and they are harsh. I am slowly seeing that it takes time for the prednisone to leave your system and my doctors say that every day there is less and less in my body.

Stay positive, stay active & stay Healthy!!

I am a 30 year old female. I was prescribed Advair in January when I had maxed out the dosage for Azmacort (which I had been on for close to six years) and was on my second dosage of prednisone. At that time, I could not walk across the room without getting winded. I spent most of my days wrapped up in a blanket in my rocking chair. My general practioner referred me to a pulmonary specialist as he wasn't sure what to do with me. The pulmonary specialist is the one who prescribed the Advair.
The dosage I was prescribed was 500/50. I immediately cited the "increase of asthma-related death" and was told the study was flawed. I can't recall the name of the study, but I did read through it and it wasn't a well-thought out study. So I gave it a chance. I did not read the side effects flyer because I wanted to give the medication a fair chance.
My breathing immediately got better, but I've put on 25 lbs since starting the medication (had to go out and buy new pants and tops). I've also experienced nosebleeds. Sometimes I can feel them start and sometimes I can't. It's a little nervewracking because I don't know if I'm going to have one in public. I've had a lot of weird dreams over the last six months that I didn't think to be a side effect of the drug... now I'm beginning to wonder.
Another thing I have experienced since starting the drug is random blinding headaches that leave me sensitive to light. I'll go to work and have to decrease my computer monitor brightness and turn down the lights.
As a result of the weight gain, I have been watching what I eat. I've increased fruit and vegetable intake, reduced the amount of high fructose corn syrup I ingest. In all, I'm probably treating my body better than I ever did. Unfortunately, the weight has not come off.
My pulmonary specialist has brushed off any of these concerns that I have raised.

My daughter has been on prednisone since October, 2006 -today is July 25, 2007. She is a 35 years old with asthma and allergies. Originally the pulmonologist thought she had ABPA (Allergic Bronchio Pulmonary Aspergelosis) and put her on 60 mg daily. This year has been a nightmare for her. That original diagnosis apparently was erronous, but she was kept on the high dose for breathing issues, with instructions to lower it as she could. As of today she is on 30 mg. daily. Side effects? So you know she is no "loser", she is a PhD in Biomechanical Engineering, has two patents to her credit, has spoken at numerous medical conferences (for vascular surgeons and cardiologists), and has had countless articles published in medical journals. Now she can't concentrate much less sit still, has not read a book in months (she used to read at least one book every week), she has two research publications that need to be finished but she can't focus on the work, is totally exhausted and needs to rest after only a couple of hours of mild activity, has a face she has described as looking like a mongoloid. Her beautiful, big, blue eyes are slits in her face. Clothes that fit yesterday wouldn't fit today - and those that fit today won't fit tomorrow. She craves food in the middle of the night and said she usually eats 2 bowls of cereal. She has terrible pain in her torso. Her esophagus has become so eroded she is on 6 different meds for that, and as a result cannot eat salads or raw fruits or anything that might irritate the lining of the esophagus. Her body is covered with huge dark bruises. The latest side effect made evident happened this past Saturday night. She fell striking her shins on a carpeted step. Her skin has become so thin that it actually burst open. She said it reminded her of when we'd blanch tomatoes in boiling water to peel them, and how the tomato skin would just burst open. That's how her leg was. That little fall cost a trip to the ER for stitches, tetanus shot, and antibiotics. Her husband is a career military, so since they married 1 1/2 years ago she's lived in 4 states, there's not much history among doctors. She lives now in Kansas and has started seeing specialists through the university there. We just wish she could go to Mayo Clinic for complete evaluation, but unfortunately military insurance doesn't seem to cover the best.

In 1993, my son ( then aged 9) commented that he might need glasses, then never commented again until 2000 that he was having trouble seeing. From 2000 to 2006 he lost the majority of his eyesight, being treated for long periods of time on Prednisone without any significant response. Up to 60mg when the inflammation was severe, coming down to 5mg when it would flare up again. His diagnosis was at first scarcoidosis, then Unidentified Eye Virus and eventually Par Planitis, however they are all medically treated with the same medication, Prednisone. My son, became very psychotic, so much so that he forcefully committed. He became and was physically and mentally incapable of getting or being taken to the Ophthalomlogy clinic to have the Prednisone adjusted, would refuse to take the medication due to the pressure in his eyes and the eye vessel bleeds into his eyes as he said it made him worse. Developed glucoma, has had two cataract, operations. His physical wellbeing was complicated as mental health are not specialised to see the slight warning signs in his eyes that indicate that he needed urgent attention. During this period, he was on Prednisone 15mg and was also in the high security section of the mental health clinic, without memory, always seemed dazed yet when he spoke, he would sit and struggle to drag what he wanted to say from the depths of his memory and would speak very intelligently,when he did. Since 2002, he has been treated for a mental illness. His 18th birthday is imprinted in my brain, he lost his memory completely and the Police services throughout the state. were involved to find him. More time in the mental health unit. Trialed numerous medications for mental health but he never responded as they expected. When he came home to be in my care, he refused Prenisone as he insisted it made him worse. It was all out of control and not a comfortable nor 'prettey' sight watching him go off it. It was sad. He would go into spasms occasionally, have heavy sweats, behaving so unusually that I was frantic watching him 24 hours around the clock. If I had known as much about the medication Prednisone then as I know now, I would have had him hospitalised against his will. I am thankful now that I respected his wishes as his eye condition was no worse off the Prednisone than when he was on it. In 2005, I sent my son to have the amalgan dental filling out of his teeth. A process of elimination in trying to find some miraculous cure in what had become an impossible situation. All the dentist knew was that the patient had a mental illness and I wanted the fillings replaced with another material other than the amalgam. He found that there had been no barriers placed between the old fillings and the flesh in the root canal (1993) and that was where the chronic infection was repeatedly occurring. Surgery cleaned and repaired the damage.The past 4 appointments at Ophthalmology has resulted in good news with the active damaging cells being consistently 'quiet', though in the last visit when I mentioned the dental work, the Ophthalmologist stated that it would have no connection whatsoever. My son's future prospects for employment is not bright though he is always thinking positive. He is overweight, lethargic, has no night vision and is borderline 'legally blind' and has been in a rehabilitation centre for the past 6 months to manage 'a medication' for his mental illness. It also has its side effects which we will have to manage for his quality of life. His mother. Judith

Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)

Sue =)

Hello- I was Dx with Sarcoidosis in February, 2007. My lung specialist put me on 20mg Prednisone, increasing to 40mg within two weeks. My Sarcoid symptoms were from enlarged lymph- extreme trouble breathing, middle and lower back pain, kidney pain. Within a week of being at the 40mg level my heart rate and BP became so erratic that he had to start weaning me down. Initially I had extreme energy which felt good after suffering from fatigue but was short lived due to the cardiac problems.

The Prednisone has resolved much of my inflammation for the Sarcoid but I will not go on this again. I have been weaning now for over three weeks. Down under 5mg of Prednisone and it is almost unbearable. Each time I took a drop my mental symptoms became intolerable. Anxiety, extreme fatigue with extreme weakness, irrational thoughts, blurred vision. Within the last couple of days I could hardly get myself out of bed. My weight has increased steadily, bloating stomach, stiff joints, skin rash.

My biggest complaint is that doctors are not giving us enough information as to how this will affect from a negative side. Yes, it takes care of the inflammation but no one prepared me for these awful side effects and withdrawal symptoms. I feel like a nut case most of the time with no coping skills.

I am a 48 year old women who has been diagnosed with a upper repiratory disease called sarcoidosis. I was presribed prednisone 30mg per day in april of 2006. About two weeks ago I noticed a numbness in my left foot. I trully believe its a side effect of taking prednisone. This numbness causes occasional pain. I am down to 10 mg per day and I think i am going to stop taking the drug to see if its the culprit. I will let you know in the near future if the results are good. Thank You Annette D. Odom of Philadelphia, PA.

I have been taking prednisone for five year for sarcoidosis,an autoimmune disease that targets first your lungs and then your immune system attacks any and can attack all muscles of the body. It left me with scaretissues in my lung.started with 70mg. down now to 20 and have been down to 5. every time i think i can come off my breathing gets worse but i think the medication also causes shortness of breath. i have lost vision in one eye ,no central vision since this med.break out in rashes.feels like iam disconnected mentally and phycially eye floaters in the other eye weight gain of about 50 pounds that will not move and i don't eat hardly anything.nervousness,moodswings and let me not forget the hypertension that i never had until this med. Now iam taking meds to doctor the problems the p rednisone created. CANNOT WIN FOR LOSING!!!!!!!!!!!!!

I've been on Prednisone since February of this year. I started at 60mg/day and am currently weaing from 40mg/day to 20mg/day. For awhile I thought I was losing my mind. First I will say I am on this medication after being diagnosed with Sarcoidosis. The Prednisone has decreased the number and size of granulomas in my lungs making breathing a lot easier and has also gotten rid of most of the chronic pain I was in. I used to wake up barely able to drag myself out of bed. Here is a list of my side effects: increased appetite, indigestion, nervousness/restlessness, dizziness, flushing of facial and neck skin, burping, SWEATING, mental confusion - inability to think clearly, memory loss, tinnitus, irritability, mood swings, muscle cramping in legs and arms/fingers, weight gain, sodium/fluid retention, increased hair growth on facial areas. I had daily headaches for awhile but those seem to have dissapated to infrequent headaches. I'm grateful for this drug for what it's done for me but the side effects are making me feel I'm going insane.

I had my second infusion, and a debilitating headache came on. I feel very grogy the day after and as of yet no real change in the way I feel. I suffer from Sarcoidosis, and my doctor feel that this will help with the immflamation. I was worried about the headaches, but I see that several people have experienced them also. If anyone is positive that the Remicade is the cause please note. I'll be checking in from time to time.

Bamm

I started at 80mg while hospitalized for Sarcoidosis at the end of May. Prednisone allowed me to breathe. I was advised to keep a low sodium, low fat diet, vegies, fruits, no processed foods, exercise, plenty of water. Following that advise I have been lucky and not gained weight. I do have the "moon" face though. My dosage was lowered to 60 mg when I left the hospital then a week later to 40 mg and it took 2 months at 40 mg for the "moon face" to appear. At the end of this week I will drop to 20 mg until Sept when I see my lung Dr. My side effects seem to be minimal at this point and the prednisone truely helped me out of a bad situation.

I have recently been diagnosed with sarcoidosis. I am not looking forward to being on predisone. Are there any other drugs for treatment of this horrible disease. Thanks.

Greetings.....I have been on Predisone for a couple of years now.. I have Sarcoidosis and had double vision, lumps all over my body, had brain surgery because they though I had a brain tumor, but didn't. They sent samples to 5 big hospitals in the US and no one could find what it was. I had biopsies on my arm and it's Sarcoidosis.

Take the Predisone my sight can back in one day, but I have gained over 80 lbs., swollen severely, can't sleep well, and my body hurts.

I had Cytoxan treatments ....didn't work
I was on Remacade treatment and even the Dr. didn't realize how much better I was. It was stopped because of painful lumps on my middrift. Big mistake! Now all symtoms have returned and worse.

I was to go back on the Remacade but I had a rash and bleeding from my rectum. Is the bleeding from the Presidsone? Does any know? They said I shouldn't have the treatment because where the bleeding is I could get an infection. I also have/had Rectal Fissure, it that from the Predisone too?

I'm a miracle in Progree....Thank you and God Bless!

I WAS GIVEN KENALOG 240 MG FOR 6 WEEKS, FOR THE TREATMENT OF SARCOIDOSIS - I WAS EXPERIENCING CONGESTION IN MY NASAL AND THROAT AREAS - I HAVE CHRONIC SINUSITIS AGITATED BY THE SARCOID - WHILE IT IS WORKING DAY BY DAY AND I NOTICED A SLIGHT IMPROVEMENT IN MY SINUSES, I AM BREATHING BETTER AT NIGHT AND MY THROAT IS ON THE MEND, I AM SLEEPY ABOUT MIDDAY AND GET SLIGHT NAGGING HEADACHES. JUDGING ON WHAT I HAVE READ HERE, I AM IN PRAYER NOW...

To the person just diagnosed with Sarcoidosis. I myself have been living with it for 20 + years. I was diagnosed when I was 4 and it has affected my eyes, skin, kidneys, joints, and tendons. I would like to make a recommendation, as I have to agree the Prednisone is a HORRIBLE drug. I was on it for many many years and know what you're going through. However, they tried a new drug on me called METHOTREXATE. i recommend asking your physician about it. It's not without its side effects as well, but believe me compared to the prednisone, the *1* side effect i get is nothing. this drug has done wonders for my sarcoid and yeah, recommend it over prednisone any day. If you want more info on the sarcoidosis or the methotrexate, feel free to email me at ******--just put sarcoidosis in the subject line so i know its not junk. Hope this helps somewhat.

I have been diagnosed with Sarcoidosis. Sarcoidosis is a multi system disorder characterized in affected organs by a type of inflammation called granulomas. I happen to have it in my lungs. I was started on 50mg a day of Prednisone for an entire month. During this time I went periods of up to 4 days unable to sleep in spite of being prescribed sleeping medication. I have, over the last 8 months been taken down from 50mg a day to 10mg a day. I have gained 30lbs, my completion is a mess, my skin is oily, I have hot and cold flashes, I am always stuffy, and my mood was so altered I was put on anti-depressants.

My temper is easily agitated and this drug even strained my marriage. I went from a loving husband to a baby having temper tantrums.

This drug is horrible.

I have been on 60 mg of predisone for 6 weeks for sarcoidosis. I do not like the way I feel but so far I have gained no weight. My face is swelling and if it does I will go crazy. I sleep very little and cook all night long. The energy is amazing. I am in another world on this medication.