Anyone with psoriasis or psoriatic arthritis taking a biologic and its effect on ME

Wondering if anyone here on S4ME who has psoriasis or psoriatic arthritis and taking a biologic? Which one? How has it affected your ME/CFS symptoms?

 

Thanks! I'm glad to see you too @Hutan and other great members from PR. I actually knew people were moving but didn’t know what the new site would be, I found it when doing a google search for info related to this thread.

 

Welcome to the forum @leokitten.

I recently got diagnosis of psoriasis, but don't take anything for it. Just have petroleum based cream to use for washing in bath/shower. Can't say it's helping much, and it leaves the bath a mess! I feel like ringing a bell "Unclean! unclean!" from the skin shedding in our bedroom. Yuck. I'm obviously not affected very badly by it, but it's irritating. Hopefully someone more knowledgeable will be along soon with more helpful response!

Best wishes from Liverpool, where I'm really enjoying looking at the new moon out of my bedroom window.

 

My brother has psoriatic arthritis but he does not have ME. But if you'd like me to ask him about what treatments he is taking then I can do that.

 

Great to see you here, @leokitten. I don't have psoriasis but wanted to say hello!

 

Thanks for the offer @ahimsa, I am familiar with the treatments that are available, I’ll explain more the reason for my thread question...

I’ve had a rarer form psoriasis since my late teens. It was constantly misdiagnosed by doctors for so many years and therefore not treated properly. In my mid 30s before getting ME it started getting worse and then after getting ME it got a lot worse and harder to control.

It’s definitely within the realm of possibility that my living with psoriasis untreated for so long caused immune system changes that put me at higher risk of getting ME (since it really is a systemic auto-inflammatory disease, we only see the skin part of it)

I believe there is a definite connection between the two diseases, for me in particular the symptoms of both ME and psoriasis go up and down fairly well together (the “flare ups”). Maybe the connection is as superficial as both just being immune-mediated, though could be more.

Having ME has made me much more cautious about taking a biologic for my psoriasis. For a couple years now, I’ve been at the point where it cannot be controlled with topicals and is debilitating on its own. My dermatologist has been telling me for a long time that we should think about a biologic. I’ve also been waiting for newer, more targeted biologic classes to come out since they would potentially have a better safety profile and fewer side effects.

In the last two years, IL-17 and IL-23 targeting biologics have been approved. They are much more targeted, efficacious, and potentially safer than TNF-a targeting biologics. Even so, suppressing IL-17 or IL-23 carries some small risk of viral reactivation and other infections.

Since we still know next to nothing about the pathology of ME I'm cautious about taking a biologic that will suppress a part of my immune system and potentially make the ME worse.

If the theory that ME is perpetuated by smoldering infections or an deficient immune system that cannot adequately control ubiquitous viruses then taking such a biologic is of course a bad idea. Though if the theory that ME is perpetuated by an auto-inflammatory and dysfunctional immune system where any possible trigger is long gone then taking an IL-17 or IL-23 targeting biologic for one’s psoriasis could be beneficial.

I welcome any thoughts.

 

Thanks for the explanation, @leokitten

I wish I could help with some brainstorming but this kind of medical discussion is completely out of my league.

 

In parallel to this topic, I was similarly wondering whether we have any people on here diagnosed with Sjogren's syndrome or Lupus treated with a T cell modifying agent such as azathriopine and whether this improves fatigue or associated dysautonomia POTS/OI/NMH?

I know of someone diagnosed with ME but who also appeared to fulfill some sjogrens syndrome criteria (dry eyes etc) whom responded to cyclosporine 400mg daily with hydroxychloroquine. Their symptoms sounded almost entirely indistinguishable from ME... They said their symptoms first notably improved around 3-4 months, after which cyclosporine dose was reduced for maintenance.

Cyclosporine is interesting as predominantly effect T cell cytotoxicity - which may parallel somewhat the mechanism of cyclophophamide - however its less toxic.

 

Welcome @leokitten

I was diagnosed with psoriatic arthritis a number of years ago, I won’t go into detail but suddenly the treatment (sulfasalazine) was stopped and I was told that I now didn’t have Psoriatic arthritis.

I already had ME at the time and I was having severe sacroiliac pain, the treatment did seem to help reduce that pain....along with the steroids for costochondritis too.

Since the treatment stopped I have gradually got worsening of the sacroiliac pain again.

 

Interesting. I'm sorry your pain has come back Are any scans or tests used to guide treatment in psoriatic arthritis?

Before I developed ME I actually had Ulcerative Colitis (acute onset) for about a year (which I think was likely induced by Accutane use). I was treated with prednisone 40mg/D and a drug similar to sulfasalazine - mesalazine, and I was able to achieve complete microscopic quantified remission eventually off all drugs, now since 8 years. Health is far worse now with ME than when the colitis was at its worst and the thing which stood out is fatigue, myalgia and insomnia did not associate with colitis severity at all. So I wonder how our observations with gut inflammation/permeability reducing medications bodes for the LPS gut translocation hypothesis as per Hanson et al.

https://www.ncbi.nlm.nih.gov/pubmed/15681825

 

Thanks @energyoverload. I had MRI on sacroiliac area, lower lumbar and chest. By a Rheumatologist who was the UK member of a European group that were looking into seronegative spondyloarthritis (which includes psoriatic arthritis). He left the Trust, unfortunately, he had been the most empathetic consultant that I had (have) been seen by.

That’s interesting, what you say about ME compared to the acute UC. Good that you have remission from UC. I found that my fatigue and PEM were not to do with PA, too.

My Rheumatologist thought the pain of the sacroiliac and costochondritis brought on fatigue, that was one area he didn’t “get”...he wouldn’t accept that I got fatigue and low energy and PEM when pain was absent too. He was convinced that ME was/is Fibromyalgia and his theory was that ME and FM were symptoms caused by pain. He thought if pain was controlled the symptoms of ME would be dealt with!

I’m not familiar (as other members will be) with the Hanson et al gut hypothesis, though it sounds interesting.