Psoriasis

[Scottiemom]

Anybody trying any of the biologics for psoriasis? Just wondering how they are working and if you have had any side effects. Really scared to try them, but running out of options.

Dale

[neschultz]

Scottiemom wrote:
Do you just see your derm twice a year? This derm told me that's all that's necessary and you give your own injections.

Dale

My case is a little unique. About 5 years ago, I woke up one morning with Vasculitis on one lower leg. It was very painful and looked (to me) like gangrene. I was quickly sent to Johns Hopkins to a wonderful rheumatologist that put me on a lot of prednisone to fix it (also had to have wound care - it was a fairly large open wound) and did lots of blood work, cat scans, etc. to see if there was an underlying cause. Luckily, there wasn’t. She’s the one that put me on Humira vs Enbrel and added methotrexate, and folic acid. Blood tests were monthly but have now grown out to every 12 weeks. So she manages all those vs my dermatologist.

Humira is self injected every two weeks but Taltz will be once a month. Humira must be refrigerated so can be an inconvenience when traveling.

I see the rheumatologist twice a year and my dermatologist once a year.

[Scottiemom]

Yeah, Charlie D. I do my own research. Every review I have read indicates side effects from mild to extreme. This is why I have avoided the biologics for so long. I have had psoriasis for 60 years. I have tried every cream, salve, ointment,x-ray, shampoo, etc., but all that has resulted in is the lesion moving to other parts of my body. The hands and feet are most troublesome for me. Nothing else bothers me.

My treatment of choice is a cortisone shot every 3 months. It does wonders for me and no side effects. The doctor yesterday said it is a very low dose and I should not even see any side effects but he recommended a bone density test every 2 years. No problem. The only side effect I notice is I get the munchies the first week. LOL I still say that this is the treatment I want. We KNOW what cortisone does and the amounts that bother. And 3 doctors, 2 derms and 1 FP have said the dose is so small to have side effects. AS it is, I get my last shot for the year in September, then none till April when we return to the area. The biologics for the most part are too new to have long term studies done.

Kinda like my DH. Just tried Entresto, the new heart wonder drug. The first week was great, then he started putting on weight, then the kidneys stopped working. He was in pretty bad shape by the time he got off it and it cleared his system. Doing better now. Little known side effect and not one the doctor was even prepared for.

Dale

[Charlie_D_]

Scottiemom wrote:
He also said they don't really bother the immune system, just target the abnormal autoimmune response. Dale

Not questioning your doctor but if it were me I would have another discussion to clarify that statement. All of the biological drugs have side affects. Usually rare but they include TB, increase in skin cancer, lung and liver problems and lowered immune systems to name a few.
I have been on Enbril, Methotrexate and Folic Acid for Rheumatoid Arthritis for about 10 years and last year have 4 procedures to remove basal cell carcinoma. Last week my Dermatologist said I had no new spots during my annual check up.
My Rheumatologist said I get anymore she will change to a new medication but it has a greater chance of creating lung problems.

It's hard getting old.:)

[wowens79]

I was took Ebrel for 3-4 years and it was great for my psoriasis and psoriatic arthritis. Unfortunately I found testicular cancer, luckily it was caught early. I came off of enbrel as a precaution. None of my doctors thought the enbrel was related, but thought it might be best to stop the enbrel to make sure my immune system was at its strongest.

I stayed off of any biologic for 10 years, and just felt with the psoriasis. It got pretty bad, and the arthritis was getting very painful. The doc said as long as I had been clear, and with 10 more years of data showing the cancer was probably not related I started on Humira about 2 years ago, and it did great. Skin clear and arthritis improved a bunch. In the last 3-4 months it has started being less effective the doc offered to change to another biologic, but I decided to stick with the Humira a little longer. I did get the flu twice, but my daughter and wife also had it so probably just a fluke

I’m lucky mine is not on my hands and feet so it is just unsightly, and leaves flakes every where.
I would definitely talk to the doc and give it a try.

[phemens]

Have you tried narrow band UVB treatments? I have ezcema, and the light treatments really worked for me, I know a lot of psoriasis patients had good results as well. It's basically like a tanning bed but upright and the lights are targeted for a specific wavelength (i.e. ok for skin, you're not tanning). I went to the extent of buying a unit for in home treatments. Been using it for years, typically 3 times a week X 2-3 minutes per treatment. I continue to use topical treatments for my hands, but only when really needed.

[Scottiemom]

neschultz wrote:
I’ve been on them forever. My psoriasis is not very widespread but on the feet and will cause cracks and splits...making walking very difficult or impossible w/o them. Also have psoriatic arthritis. I’ve had no side effects but do tend to easily catch colds and upper respiratory ailments (2 to 3 times a year). My Humira is not working as well as it used to so my rheumatologist is switching me to Taltz. It’s “supposed” to work better on the psoriasis and not suppress the immune system as much.

thanks so much for your reply. Yesterday I saw a different derm because mine was out sick. He said there are several biologics that are working great on the hands and feet, my main problem areas. And yes, walking and using my hands is very painful. I have osteoarthritis but tests do not show psoriatic arthritis. . . yet anyway. He also said they don't really bother the immune system, just target the abnormal autoimmune response. So I find your observations important. Do you just see your derm twice a year? This derm told me that's all that's necessary and you give your own injections.

Dale

[neschultz]

I’ve been on them forever. My psoriasis is not very widespread but on the feet and will cause cracks and splits...making walking very difficult or impossible w/o them. Also have psoriatic arthritis. I’ve had no side effects but do tend to easily catch colds and upper respiratory ailments (2 to 3 times a year). My Humira is not working as well as it used to so my rheumatologist is switching me to Taltz. It’s “supposed” to work better on the psoriasis and not suppress the immune system as much.