Cutaneous sarcoidosis

[HeronNS]

This is going to be a long story and I hope there is someone in this group who can offer advice.

What treatment is used for skin problems? I have a sarcoidosis diagnosis (biopsy of lymph node in my 30s, now late 70s). Always had some kind of relatively minor skin problems most of my life. No one ever suggested they were autoimmune related. In 2015 I started low dose longterm prednisone treatment for polymyalgia (PMR) and in the ensuing 9 years forgot about my skin problems! Upon remission in early 2024 I was able to discontinue pred, which I'd been taking at about 2 mg more or less for several years. A few months later started to get rough, reddish patches of skin. Eventually remembered my skin history, related it to the probability that low dose pred had kept this in check for so long, and am now trying to find a way to deal with these, so far, minor skin lesions.

My GP prescribed betamethasone valerate as otc hydrocortisone ointment wasn't really doing it. I didn't find it much better, as soon as I taper off it the patches come back, and I'm rather afraid of it as told not to use much and not for a long time. The doctor was kind, though and at my suggestion gave me a rather limited prescription for prednisone.

I took 5 mg then tapered at his suggestion fairly quickly, I went .5 mg about every 8 days. As soon as I got to 3.5 the improvement in the skin stopped. At 3 mg there were new lesions. I had just enough pred to experiment, because I'd really like to get back to taking 2 mg pred and having that work. Taking 4 mg pred stops new lesions. I still need a bit of otc hydrocortisone on remnants of the existing ones but they are going.

What I hope is that by continuing the prednisone long enough I should be able to slowly return to 2 mg, where I really had no side effects, and find the skin problems once again recede out of sight and mind. At my age and with my positive experience using pred for another condition I'm personally not worried about taking it for the rest of my life, and to my mind beats chasing constantly recurring skin patches with other equally (if not more) problematic medications.

[Missus835]

Omg Heron, it can affect so many organs. Just read up on it. You're right about various things appearing or reappearing when we get to lower doses of Pred. I too would be more than willing to stay at a low dose. Just "diagnosed" with bursitis in the hip and upper thigh. IMHO it could be a flare of PMR, but GP is adamant that I'm getting to zero and "I will thank her in the end." 🙄 I hope your Pred at 2.5 will keep the sarcoidosis in check. We don't need any fresh new hell. Hang in there. 🫂

[HeronNS in reply to Missus835]

Thank you. Have phone visit with GP on 2nd. Of course he didnt know me until 2021 so has no idea of my history, but I think the mere fact that I, the patient, had completely forgotten about the skin issues while on pred is quite telling! If I were younger I might want to look for a pred alternative, but there's not much point at this stage.

I am sorry you have to fight to get them to believe you that you probably have a PMR flare and would like a chance to try the pred increase test to see if that helps. Good luck!

[HeronNS]

As this is obviously not at the moment a very active community I was tempted to delete. Instead, for the possible benefit of others coming after, this is what my doctor and I decided this morning:

He agreed with me that I knew my body best, listened to my description of life since PMR remission and no longer being on regular long term pred dosage. Also a bit of background about my lifelong skin problems. He has given me enough pred at 5 mg to hopefully clear up all the residual skin issues, and enough 1 mg to allow me to taper at a very slow pace to the old dose of 2 mg which appeared to keep the sarcoid symptoms completely in abeyance. Writing this on 2 Jan, 2025.

[nascar4433 in reply to HeronNS]

I'm sorry I can't provide any "advice" in this regard, as I didn't experience skin issues and I hadn't heard of PMR until reading this thread.

I was diagnosed with pulmonary Sarcoidosis in 1996 after six months of tests & specialists, including infectious disease consultants, oncologist, pulmonologist (of course)...a total of 9 specialists. Finally had a Mediastinoscopy (lung biopsy) that confirmed Sarcoid. I was in 80mg Prednisone for a year... brutal. Over the years I've asked for and been given either short-term (a month or so) Prednisone or the Prednisolone pak that hits hard quickly and reduces the inflammation pretty fast. The original high dose of Prednisone gave me the typical moon face side-effect, huge weight gain, and being absolutely miserable. I hope I never have to be on a high dose like that again, and I hope to not have to take anything except very low-dose Prednisone for a short period of time again. The Prednisolone Pak turns my face purple within 24 hrs, and I feel like my insides are literally boiling, and I run a fever. I can't imagine remaining on even low-dose Prednisone for life. I hope it gives you the relief you seek without damaging the rest of your body. I would be concerned about what very long term use would do to my organs, etc. I think I'd rather put up with some skin issues than do the damage internally. But that's just me. I hope it's not harming you, and if you feel it's the only thing that will resolve your skin issues, then I'd just ask that you be careful and remain vigilant. Good luck to you HeronNS! Happy 2025!

[HeronNS in reply to nascar4433]

Thank you for your reply. I can only imagine what 80 mg of pred would do! It is the upper range of what is offered to people with a disease, Giant Cell Arteritis (a "big sister" to Polymyalgia Rheumatica) which can cause blindness. I've never taken more than 15 mg and even that only for a month, and it appears that 4 mg is enough to handle this current flare of skin problems. What I'm hoping is that I'll be able to taper back down to 2 mg, which was apparently controlling the skin condition. It wasn't until after I had been off pred for a few months that these patches reappeared. And it took even longer for me to actually make the link. Low dose prednisone had been doing more for me since 2015 than I realized! I'm quite old and to me the benefit of 2 mg pred for what remains of my life beats having to chase skin rashes with ointments which come with some side effects of their own. If my experiment doesn't work, then we'll rethink, but I'm optimistic. After all, I was clear of this problem for long enough that I forgot the earlier sporadic manifestations, which actually dated back to young adult years. No one ever mentioned the possibility it was anything more than dry, sensitive skin, a connection with autoimmune condition only made by me this year. If I were younger, indefinite pred would certainly be a different matter.

I read about your experience with pulmonary Sarcoidosis with interest. When we had our children we wanted to get a small life insurance plan for me, to cover such expenses as childcare if anything happened to me. When they found out I had a diagnosis of sarcoidosis (discovered within the previous ten years), I was told I was ineligible. Couldn't understand this because as far as I knew the only manifestation had been a single enlarged lymph gland. Later I learned that I would run a high Vitamin D reading if I took the amount of D recommended, and also a spine x-ray revealed as an incidental finding what they called evidence of "old granulomatous disease."

Reading your story I am now counting myself very fortunate. Is there no alternative? I do know that sometimes there are what they call "steroid sparers"which can help some people reduce a dose of prednisone. I wonder if Sarcoidosis is being researched as new biologic medications are being developed - costing an arm and a leg of course!

Thank you again. And best wishes for a healthy 2025. 🍀

[K4tM]

I have sarcoidosis. I can’t take steroids now due to bi-polar. But you just have to titrate them as needed.

[HeronNS in reply to K4tM]

Thanks. I know all about prednisone titration after 8.5 years using it for another condition. In fact it was titrating to zero which allowed the skin to act up, so I'm a bit cross about that but also relieved that I may have to hand something which will help. Tomorrow I start down to 4.5 from 5, so we'll see!