I have both Sarcoidosis and Psoriasis. Have had Psoriasis since the age of 8, and I was diagnosed with Sarcoidosis approx 3-4 years ago.
The initial trigger with the Sarcoidosis was Erethema Nordosum, which completely took over my legs to the point of me not being able to walk whatsoever.
This lasted several weeks while it took doctors and specialists time to work out what was wrong (apparently the episodes I encountered were "not common in Australia", and I should "GOOGLE what Sarcoidosis was".
Upon further ummms and uhhhhhs from doctors, and so many tests, they were scratching their head because Psoriasis was not common with Sarcoidosis at all, and don't go hand in hand.
As I started treatment of Predisinone, I noticed a very strange occurrence, the Psoriasis started clearing (I am talking some serious Psoriasis up the arms). After 2 weeks, the Psoriasis had almost cleared completely.
I did a bit of research on the good 'ole internet, and found that the Sarcoidosis I suffered was the collapse of T-Cells in the blood (in a sense).
Psoriasis was ALSO affected by damaged T-Cells, and the medication was reversing the faulty T-Cells.
As I started lessening the dosages of the Steroid for the Sarcoidosis, the Psoriasis started coming back tho.
Now, I am back to where I started, currently dormant sarcoidosis, and psoriasis on the arms. It's a never ending cycle.
Any link I wonder tho????
Thoughts??
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Sarcoidosis Vs. Psoriasis
Explore topics in this discussion:
Iritis Plaquenil Burns Eczema Vasculitis Erythema nodosum Pneumonia Acne Prednisolone Prednisone Lupus Sarcoidosis Stress Ibuprofen Psoriasis Azithromycin SARS Rashes Pain Cold sore
11 replies
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- Newest first
- By marian-anne
- Posted August 12, 2008 at 9:08 am
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Hi, sorry to hear you have both, I wonder if you could tell me the dosage you are taking for Psoriasis, I have sarcoid amoungst other things and my partner has Psoriasis, the time has come for us to ask the GP(we are in the UK) for steroids and would be intrested in the dosage they have given you? hope you dont mind me asking, take care speak soon by email, marian-anne
- By doomy1
- Posted August 31, 2008 at 9:09 am
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Hi Marian-anne,
Sorry about the late reply.
When I was diagnosed with the Erethema Nordosum and swollen Lymph nodes, they started me off on 55mg a day.
Yes, it is a nice high dosage and I was having some great little side effects for a few weeks, but that was to lessen the Nordosum.
My legs were swollen 3 times their size with bruising and some amazing pains which literally rendered me bed ridden for about a month.
As the swelling came down though, so did the Psoriasis. It seemed to have a dramatic response, but unfortunately as I reduced the dosages of Pred...the Psoriasis came back to it's natural state.
I still have Psoriasis at the moment.
Has your partner had Psoriasis long?
Do you have any children (hereditary question). I am very fortunate to have a gorgeous daughter (8 years old), who has managed to skip the Psoriasis gene.
Funnily enough though, I am the only person in my history (that I know of), that does have any form of it.
I am not currently using any psoriasis related medicine/remedy's as I have found no relief or effect from the countless attempts.
Psoriasis is here to stay with me unfortunately, but I do keep a very positive outlook on it. It has made a very happy and friendly character from its presence.
- By krb575465
- Posted June 6, 2009 at 9:42 am
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I have recently been diagnosed with sarcoidosis. I have had psoriasis for about 8 years as well. It started in small spots when I was 20. It's not bad now. I have a large patch on my lower right leg and all over my right knee. There is some on my left knee as well as small spots on my elbows. I've seen worse cases and I've learned to deal with it and accept it.
I was diagnosed with sarcoidosis by accident. My condition started in Feb 2009 when I had the flu. I didn't get better after taking medication and went back to the doctor and was told that I had walking pneumonia. After 3 rounds of azithromycin I started to improve. That wasn't until the middle of April 2009. One evening someone said to me "Hey, your eye is red". The next day it was worse. I went to the doctor and was told that I had pink eye. I was given some antibiotic drops and was told that it would be better in 4-7 days. After 3 weeks my eye was still red and my vision started to get blurry in my right eye.
I went to the eye doctor and he told me that I had iritis. He then asked if I had an auto-immune disease. I told him that I did not (forgetting that psoriasis is an auto-immune disease). He also said that there was something going on in the back of my eye that he didn't feel comfortable diagnosing, so he sent me to an ophthalmologist. After discussing everything with the doctor and telling him about being sick for most of the beginning of the year, he ordered a chest x-ray and blood work. Everything came back fine except the Serum ACE test. He said my levels were high. That combined with what he saw on the chest xray indicated sarcoidosis. He also said I had iritis, uveitis, retinitis and vasculitis in my right eye and immediately started treating me with prednisolone drops. He then sent me to a pulmonologist who did a lung biopsy and confirmed that I have sarcoidosis, but said the scarring on my lung tissue is very minimal. As of today all of my lung symptoms are totally gone (from what I can tell). In fact, they were gone before I started the medication.
I'm on 60mg/day of prednisone. The doctor said he put me on that high dosage because of my eye involvement. I've been on it for 15 days and my psoriasis is starting to go away. I'm not using any of the steroid cream that I was before (which wasn't helping anyway). I'm shocked at how clear my skin looks. One thing worth mentioning is that I read online that rubbing the inside of a banana peel on psoriasis helps. I did this a few times before I started the prednisone and within 2 days it was looking better. A word of warning: At first it feels good and soothing, but 10 seconds later it burns like fire and then itches like crazy. If you can tolerate that and refrain from scratching, it seems like a better alternative to steriods. However, after coming across this site, I can't contribute my clear skin to totally to the banana peels.
Another thing that is interesting to me is that I was on Enbrel for about a year and have been off it for over a year. I have read that there have been cases of sarcoidosis that have been linked to the use of Enbrel. Of course, it can't be proven that Enbrel is what caused sarcoidosis, but it does make me wonder
- By bethf
- Posted October 13, 2009 at 6:49 pm
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Look at this site.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1716762/
Here is a link between them
- By jrk1980
- Posted October 13, 2009 at 8:34 pm
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Hey Doomy,
I've had psoriasis and eczema my whole life and also break out from rashes from animals (and I walk dogs for a living!), it comes and goes on all parts of my body. Since I started the prednisone, 2 months ago, I am 100% free and clear of everything. My pulm suggested there is a link, he told me that pred can be perscribed for acne cases.
And now that I think about it, it makes sense, all the topical creams I've used for the rashes were steroids anyway.
Jennie :)
- By priscurl
- Posted October 14, 2009 at 7:54 am
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Hi Doomy1,
I live in Sydney, Australia and have both sarc and psoriasis. I know of another Aussie guy who has sarc and psoriasis. He may also post when he sees this.
If you have psoriasis make sure you don't take Plaquenil because it makes it the psoriasis heaps worse. It took me and my docs four years to work this out. I had what I thought was eczema - yet it always looked to me the same as what my mother and brother had - psoriasis. My grandmother also had psoriasis and got it very severely post partum and just before she died. It runs in the family. Anyways, the first doctor I met who decided that the sarc needed treating put me on Plaquenil. After I had been on it about a year, my fingernails and toe nails started to go white and separate from the nail bed. I showed the local GP who took a fungal scraping. The scraping was negative. It was just assumed the collection wasn't well done. I used Daktarin paint on the nails for two years without any improvement. Then I got a severe flare of sarc and ended up on prednisone. The nails began to improve and ended up getting better, but started to go again as I tapered. I figured that the nail problem couldn't be fungal - since fungal infections ought to be made worse by prednisone - because it suppresses the immune system. I asked another doc about it and she took a fungal scraping. When it came back negative and I told her how the nails improved with prednisone I asked what else it could be? She went into the filing cabinet and pulled out what she had on nail disease. The pics on her brochure with nail psoriasis or onycholysis looked exactly like my nails. I did a bit of research on the internet and discovered that Plaquenil worsens psoriasis. Then it all made sense. The eczema weren't eczema, it was psoriasis, which runs in the family. I then went to a skin specialist to get the psoriasis confirmed. Then I took everything to the immunologist treating the sarcoid. He took me off Plaquenil and started me on an alternative. The nails have all but my two big toes completely cleared up.
Pris
- By ozealan
- Posted October 15, 2009 at 12:02 pm
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I'm the other guy mentioned above,
G'day
Sorry to tell you , you ain't Einstein when it comes to this. However, no one else is either. Psoriasis has been around for 1000's of years, sarc has been around for well over 100 years. In chronic cases they treat it similarly. BUT they only treat the symptoms and they present similarly.
I have Erythema Nodosum, Lupus Pernio and Psoriasis
EN confined to my lower legs, LP and Ps on my face and in my scalp, now thats a fun place to have them. Its a great conversation starter or finisher.
- By Krissy
- Posted October 16, 2009 at 7:10 am
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Well I think my doctor must think that there is a link. On my first visit when she was actually diagnosing me she asked me if I had ever suffered Psoriasis and/or Eczema. When I told her that I had some previous history she mentioned that there was a link.
- By bmaz
- Posted October 16, 2009 at 4:57 pm
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I have had erythema nodosum as well. Very very painful, my shins had huge burning welts and my feet and ankles were black and blue and swollen. As a matter of fact they were so inflamed they felt like they would explode, the pressure was unbelievable. I missed 3 months of work. Prior to this I had chronic hives for over a year. This is when they found out I had sarc. Most people who have erythema have sarc. They say hives aren't related, but considering hives involves inflammation ( as well as erythema and sarc) I think it does.
Try not to take prednisone if possible. Too many side effects. When I went off of prednisone, my symptoms came back with a vengeance. I finally got off. Right now I have no symptoms other than some lung trouble.
- By bmaz
- Posted October 16, 2009 at 4:57 pm
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I have had erythema nodosum as well. Very very painful, my shins had huge burning welts and my feet and ankles were black and blue and swollen. As a matter of fact they were so inflamed they felt like they would explode, the pressure was unbelievable. I missed 3 months of work. Prior to this I had chronic hives for over a year. This is when they found out I had sarc. Most people who have erythema have sarc. They say hives aren't related, but considering hives involves inflammation ( as well as erythema and sarc) I think it does.
Try not to take prednisone if possible. Too many side effects. When I went off of prednisone, my symptoms came back with a vengeance. I finally got off. Right now I have no symptoms other than some lung trouble.
- By pippin
- Posted October 17, 2009 at 12:27 pm
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bmaz, you described the EN perfectly. There was no way I could get comfortable. Someone told me to put ice packs on them. I would have had to stand in a barrel of ice to cover them. I took ibuprofen and increased my MTX and the pain stopped. I can still feel the right under the skin, though. It feels kind of like when you are getting a cold sore on your mouth.
I also had my nails separate from the nail bed and I was given injections of steroids in the nail bed and haven't had that happen again.
Until I was diagnosed with sars about 3 years ago I didn't tie all this together. I thought they were isolated incidents. Actually I kind of blamed myself because I didn't handle stress any better. I thought stress was causing the symptoms but now I believe the disease was causing the stress.
There are several studies that point to sars causing chronic fatigue. Who wouldn't be stressed walking around tired all the time with your nails falling off and painful knots on your legs? Couple that with the inability to see because of chronic uveitis, I am surprised that I functioned as well as I did.
When I think of all that I endured without knowing what was going on, it makes me want to spend the rest of my life being good to myself and taking excellent care of myself. Sometimes I have a difficult time understanding how I could have been so punitive toward myself for not feeling better and doing more. But those days are over!
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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