What's more risky in terms of COVID-19, my biologic medication or a severe psoriasis outbreak?
Posted Sun 20 Sep 2020 11.42 by Simon Hastings (edited Sun 20 Sep 2020 11.46 by Simon Hastings)
I am sure there are thousands of patients who would like the answer to this question, and, although ultimately, the answer will only come to us, via our health-care professionals, with more time and more data, I would still like to hear the thoughts of other psoriasis sufferers on how they have responded to this dilemma.
Should they continue their biologic medication (in my case ustekinumab) with the potential (though yet to be quantified) additional risk of COVID infection/complications that brings? ... or should they pause their medication until a vaccine is available, which in practice means a break of year or so, during which their severe psoriasis is likely to return with a vengeance,.. an inflammatory condition with potential (though also yet unquantified) associated risks of COVID infection/complications (not to mention the awful pain and discomfort that severe psoriasis and inflamed joints also brings).
So that this post gets past the moderators, I am not looking for medical advice, just the thoughts of others on this dilemma and if there is any new scientifically-robust research one way or the other on this topic I'd like to hear about it. Maybe there is even a professional dermatologist/medic among the moderators or subscribers who can also shed some more light on this topic.
Thanks for reading.
1Posted Sun 20 Sep 2020 23.27 by Steview A P sufferer for over 30 years, through good and bad times.
I am prescribed Stelara, same as yourself.
When Covid kicked off in the UK I was anxious about being near people due to the immunosuppressive nature of the medication.
At no point have I had concerns about coming off the treatment as it works well and as you say there is a major likely hood of a major flare up.
I am not sure what would be worse in my case in coming off Stelara and becoming self conscious and worried about my skin and appearance, plus lower quality of life and everything that comes with severe P or just being careful to socially distance and remain on the med. I think I will choose the latter unless my derm or health professional advises otherwise. .
Posted Mon 21 Sep 2020 10.43 by Simon Hastings
Hi, great to get such a good reply!
I'm always interested to hear from other P sufferers, as we're dotted around the country and only ever sea each other in Dermatology waiting rooms. I'm sure between us we have a wealth of experience and strategies, and could be helpful to each other. Hence joining this forum.
My NHS consultant said there was 'no evidence' that covid outcomes or infection rates were worse for those on Stelara, but as we all know 'no evidence' can also just be a factor of the novelty of the virus, with the evidence taking time to catch up. The general idea was that there is 'no need' to stop my treatment, but that 'it has to be a patient's individual choice'. That seems reasonable, but a free choice in the absence of medical data is scary to exercise.
I am lucky in that I had really bad psoriasis, but it was totally cleared by Stelara (apart from a tiny bit in my fingernails), and when I put off taking my dose due the virus, it didn't come straight back. In fact, even now I only have one or two tiny patches, 9 months since my last dose. For ca. 30 weeks I had nothing. Leaving aside that this tells me that I can space my doses out more than the 12 weeks prescribed, it also makes me wonder if, in all honesty, I should even be taking an immunosuppressant until my psoriasis is more severe. I can live with a couple of small patches, but not the crippling amounts I had before my treatment started. Shouldn't I wait? Especially, when I live with two teenagers, at different colleges, one of which is very sought-after and people travel up from London, and and all around to attend it. And the other goes to a massive sixth form centre, and is the world's most social teenager, who cannot cope without endlessly meeting groups of teenagers, from all different schools and colleges, going into cinemas and nail bars, Macdonalds, etc. I'm super-cautious, but what's the point with teenagers in the house?
These anyway are the thoughts running through my mind.
Thanks for reading.
Posted Mon 21 Sep 2020 15.06 by Steview A P sufferer for over 30 years, through good and bad times.
Hi again Simon, of course it is your body and you know how it reacts to coming off a med or having no meds. 9 months is a good stretch to be clear of P without any meds.
My previous consultant was very good when I was taking Mtx, he basically allowed me to increase/reduce the dosage depending on how I felt and as long as my bloods were fine. It was good to have that sort of agreement with the doc.
With taking Stelara, there are recommended intervals between injections I.e 12 weeks. During Covid I have telephone consultations with a nurse, who then authorises the next delivery. If I was to stop I don't know how easy it would be to resume Stelara considering all the hoops one has to go through in the first place. Plus I know from experience the P would come back with a major flare.
As far as I am informed as long as my body copes with Stelara and bloods are fine then that is my medication for the rest of my life. So whilst everything is good I wouldn't want to rock the boat by stopping the meds.
It is your choice what you put in your body though. Good luck.
Posted Mon 21 Sep 2020 15.43 by Simon Hastings (edited Mon 21 Sep 2020 15.45 by Simon Hastings)
Thanks that's very helpful to hear.
My doctors are also great like that. I have no intention of stopping Stelara because, as you say, it took many miserable years to qualify for this amazing drug. It's just that the meds encouraged me to experiment with stretching out the doses, even before covid, as I was such a strong responder to the drug, in that it made me completely clear of P, even at the lower dose (my weight would point to the higher 90mg dose), but at the cost of quite a lot of ill-health, flu type illnesses. I think my body is very sensitive to ustekinumab and, having been given the green light to experiment with dose-interval lengths, covid has made me want to push my luck as much as possible. I do know the day is coming (and it may be soon) that I will take the drug again, as I now have a really bad knee swell-up and lots of pain, which is one of the problems that I can get (psoriatic arthritis), quite apart from the skin probs.
Thanks again.
Posted Wed 23 Sep 2020 16.14 by Mac
Hi Simon.
I have bad PsA and very little P on my scalp thank fully which the meds sort out, I’m on bio injections and MtX, the thought of stopping my meds because of covid hasn’t even entered my head.
I had started to have problems with my meds last year, and had to come of them at the tail end of year, it wasn’t good and I won’t be going back to that voluntarily. Covid or no covid.
As Stevie said you need to be extra careful even if not on drugs.
Good luck.
You say about swollen knee joint, the thing I miss most is my anti Inflammatory which I had to come of couple of years ago because it was messing with my ulcerative colitis 😔.
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