ET and psoriasis treatments

[jenster68]

I’m triple negative ET, age 55, low dose aspirin, stable platelets 700-800, diagnosed 2018. I have had guttate psoriasis for 30 years which has developed into small plaque psoriasis. Dermatologist has recommended I try a systemic treatment and has suggested two options: ciclosporin and methotrexate. I’m nervous about taking something that might impact my ET and will contact my haematology dept on Monday (shared care with Guy’s). In the meantime, I wondered if anyone had any experience of either of these treatments (for psoriasis or another condition). Thank you!

[Lostinuk]

Sorry don’t have any experience with Mtx/cyclosporin but about to start hydroxyurea/hydroxycarbamide for high platelets and hoping it will improve my psoriasis.

If you search “dermnet hydroxyurea “ there is info about its use in psoriasis and still used second line in some regions for psoriasis

yorkandscarboroughformulary...

[jenster68 in reply to Lostinuk]

Thanks for this - very interesting. I've suggested this to my haematologist and she has said she'd prefer me to try the dermatologist recommended treatments rather than hydroxycarbamide. I hope you get some relief for your psoriasis soon.

[Spanelmad]

Have used MT X for RA for 20 years both tablet form and by injection .It has controlled it very well.My issues have been since being diagnosed with ETjak2

[jenster68 in reply to Spanelmad]

That's good to know. I think I may have symptoms of psioratic arthristis too, so hopefully it might help with that too! Thanks for your help.

[havashan]

I have had plaque psoriasis most of my life primarily in my scalp. I have ET and take Pegasys to control my platelets. When I first started Peg I develped guttate psoriasis on my chest, back and arms. I was able to get rid of the guttate with a course of phototherapy over a 5 month period. I have continued to use Peg at a low dose and the guttate has never returned but I still have plaque psoriasis in my scalp. I was treated with Mtx when I had breast cancer (I don't remember the dosage and it was used with 2 other drugs). It did clear up the psoriasis in my scalp which returned after the treatment stopped. The only side effect I noticed was my hair thinning noticably.

[jenster68 in reply to havashan]

Thanks for this - phototherapy has been very effective for me in the past - but it always comes back! Side effects like hair thinning are always a concern, so will watch out for this. It's such a struggle to get an effective, long lasting treatment for psoriasis. I'm so glad your guttate psoriasis hasn't returned. Thanks again for your help.

[KLCTJC]

I am trying not to go bananas on this post. Not sure why your dermatologist is wanting you to do those in particular. They are OLD, doesn’t make them bad but so many better options. Both MAY mess with your ET, not necessarily in a bad way but can. Cyclosporine is usually only used for rescue stuff as it will eventually hurt your kidneys and elevate your blood pressure, lots of labs with that one. I have used it but rarely and rarer these days. MTX is an old one as well, but still has its place and I still use it on occasion less for psoriasis these days. When they say biologics, neither of these are biologics they are immunosuppressants. Biologics would be like skyrizi, taltz, humira, consenytx, bimzelx, tremfya,etc! And any of those are better than what you are offered. Or you could go super safe with otezla or off label roflumilast. None of these will mess with ET or other organs. Just really need a TB test once a year. If this is all you are offered get a second opinion! Much safer much easier drugs out there. Biologics are injectable drugs. But don’t let that turn you off. I prescribe these daily and to all kinds of people with all different issues. Not playing favorites but I love skyrizi, safety is unbeatable and works great! Sorry for likely all the misspellings. So many different ones and all the names are complicated! But it comes down to TNF inhibitors, IL 17s, IL 23, IL 12/23, PD4 inhibitors. They all can work and are safer than what they offered you. I would definitely ask why and if they can’t give you a good reason see someone else. Also all of these companies have good assistance programs. If you need to ask me anything just let me know.

[jenster68 in reply to KLCTJC]

Thank you! I would definitely prefer a biologic but I can't afford to pay privately due to the very high cost. They are available on the NHS for free but only when you have tried immunosuppressants and they haven't worked or are contraindicated. I am waiting for an NHS referral to see a dermatologist (could take months!) but am paying privately to see one in the meantime. I can afford the cheaper, older drugs in the meantime and hope they might work for me.

[KLCTJC in reply to jenster68]

I get it, but keep pushing! I think you could potentially get one of the many biologic choices free. Good luck!

Ask about roflumilast….they may look at you funny, but it is pretty cheap. Off label use, but similar to otezla and super safe.

[Wyebird]

sorry I’m no help

[Anag]

my husband has had psoriasis on his legs, elbows, bum, sometimes on face for 49 years! Since I started the autoimmune paleo diet after my diagnosis, he went along and 1/2 his psoriasis was gone in 1,5 years. He’s also taking 40,000 IUs of vitamin D per week! We eat as much organic as possible and have gotten rid of ALL chemical soaps, detergents, perfumes, creams etc. Psoriasis is autoimmune, systemic. We need to clean our system to calm our immune system. I had eczema for 33 years and it went away in two months after my diet. I also got rid of foods that I had problems with (I was tested). Our daughter had terrible dermititis on back of her neck and in her hair, inside elbows, around nose, eyebrows. Hers also went away. Methotrexate slams the immune system !

During the time we switched over to a healthier lifestyle, we did take the med. creams, but less and less substituting more and more with coconut oil and essential oils proven to help and heal skin.

It is worth a try, but it takes willpower and organization

Hope to have helped 🙂

[Canbrit]

I had psoriasis for almost 40 years. I went off whole wheat and multigrain bread due to fibromyalgia and my psoriasis went away. My naturopath said it starts in the gut. Also started taking probiotics and vitamin D. Good luckf

😊

[jenster68]

Thanks Canbrit. I don’t eat bread or any grain based products. I take vitamin b supplements but haven’t tried probiotics. Thanks for the suggestion!