Psoriasis- Desperate!

Posted by hopenr @hopenr, Aug 18 9:42pm

I have had psoriasis for about a year. It started on my legs and is creeping up so that one tube of steroidal cream is good for about three applications and it is expensive! I use pine tar soap and I take vitamins D, K, Calcium, Magnesium and zinc. I do not eat gluten or dairy. I use clobetasol and tacrolimus. And....it just doesnt get better. I just had covid during which time it got way worse. I simply do not know what else to do so I am asking you all- who has had good luck on a biologic? I have been scared to try it cause I dont want to lower my immune strength but I am desperate. Can you let me now. Thank you!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@hopenr
Sorry to hear of your suffering.

Are you working with a dietitian to review diet/supplements and recommend changes to reduce inflammation? Have you tried UV treatments, coal tar, retinoids, methotrexate, etc?

Do you know what your triggers are?
https://www.mayoclinic.org/diseases-conditions/psoriasis/diagnosis-treatment/drc-20355845

REPLY

I have psoriasis and psoriasic arthritis. I tried all the ointments and creams. I had it on my feet and hands so bad I could hardly walk and would bleed so bad. I finally found a Dermatologist who put me on Otezla twice a day. It was best decision I made even with all the side effects. I have many autommune diseases ( including DH rash) so having my psoriasis under control has really helped. Maybe check it out . Good luck

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@hopenr I have had psoriasis for many years and have been prescribed different medications over the years. It is an autoimmune condition that cannot be cured but can be kept in control by medication. Every person responds differently to different medications and it may take time to find the one that works for you. Steroid creams should be used sparingly so I am surprised your doctor is okay with your using up an entire tube in three applications - unless, of course, the tubes are small, sample sized! Even so, steroid creams should be used only sparingly.

The only oral prescription that worked for me was Methotrexate (8 tablets) once a week and folic acid the rest of the week. It a few weeks for my skin to clear but it was very effective. Unfortunately I had to stop taking it after about three or four years because I have a fatty liver and apparently Methotrexate is not good for it on a long term basis.

I was then put on biologics. I refused Humira because the injections have to be taken every week so I was prescribed a Stelara injection every eight weeks. It didn’t do much for me so after about eighteen months I was prescribed Skyrizi every eight weeks. That too did not clear my skin the way Methotrexate did. I am now taking Bimzelx injections every eight weeks and that has been keeping 99.9% of my skin clear. I have been on Bimzelx for a little over a year now.

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Thank you so much for this great information. My doctor has me on two weeks of clobestaol and then two weeks of tacrolimus. The steroid cream works but, like you say, it's not the best course of action. I have an appt coming up and I plan to explore other options.

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Profile picture for dlydailyhope @dlydailyhope

@hopenr
Sorry to hear of your suffering.

Are you working with a dietitian to review diet/supplements and recommend changes to reduce inflammation? Have you tried UV treatments, coal tar, retinoids, methotrexate, etc?

Do you know what your triggers are?
https://www.mayoclinic.org/diseases-conditions/psoriasis/diagnosis-treatment/drc-20355845

Jump to this post

Yes as mentioned in my OP, I use pine tar soap, and am on an anti-inflammatory diet. I would like to know more about retinoids? I have no idea what my triggers are. I meditate and practice mindfulness and do not think of myself as particularly stressed, but you never know.
Thank you for the link!

REPLY
Profile picture for dmmeyers62 @dmmeyers62

I have psoriasis and psoriasic arthritis. I tried all the ointments and creams. I had it on my feet and hands so bad I could hardly walk and would bleed so bad. I finally found a Dermatologist who put me on Otezla twice a day. It was best decision I made even with all the side effects. I have many autommune diseases ( including DH rash) so having my psoriasis under control has really helped. Maybe check it out . Good luck

Jump to this post

What are the side effects that you experience from Otezla?

REPLY
Profile picture for hopenr @hopenr

Yes as mentioned in my OP, I use pine tar soap, and am on an anti-inflammatory diet. I would like to know more about retinoids? I have no idea what my triggers are. I meditate and practice mindfulness and do not think of myself as particularly stressed, but you never know.
Thank you for the link!

Jump to this post

@hopenr

This is what I learned about retinoids for psoriasis:

## How Retinoids Help Psoriasis

Retinoids, which are synthetic derivatives of vitamin A, play a significant role in the treatment of psoriasis. They work primarily by **slowing down the rapid growth of skin cells**, which is a hallmark of psoriasis. This action helps to reduce the thickening of the skin, scaling, redness, and inflammation associated with the condition.

### Mechanism of Action
- **Cell Growth Regulation**: Retinoids slow the proliferation of skin cells, preventing the excessive buildup that leads to plaques.
- **Reduction of Inflammation**: They help to lessen the inflammatory response in the skin, which can alleviate symptoms like redness and swelling.
- **Improvement of Nail Psoriasis**: Retinoids can also be effective in treating psoriasis that affects the nails, helping to reduce thickness and improve nail health.

## Best Retinoids for Psoriasis

The most commonly prescribed retinoid for psoriasis is **tazarotene**. It is available in cream or gel form and is typically applied once daily to the affected areas. Here’s a comparison of the most effective retinoids for psoriasis:

| **Retinoid** | **Form** | **Usage** | **Effectiveness** | **Side Effects** |
|----------------|------------------|-------------------------------|--------------------------------------------|-------------------------------------------|
| **Tazarotene** | Cream/Gel | Once daily | Reduces psoriasis by about 50% for many; some achieve complete relief for up to 3 months | Skin irritation, increased sun sensitivity |
| **Acitretin** | Oral (Soriatane) | Once daily with food | Effective for severe psoriasis; may take weeks to see full effects | Dry skin, hair loss, potential birth defects |
| **Isotretinoin** | Oral (Accutane) | Off-label use | Sometimes used for severe cases; effects vary | Similar to acitretin, with additional risks |

### Tazarotene
- **Effectiveness**: Tazarotene is particularly effective for moderate to severe psoriasis, often leading to significant improvement in symptoms.
- **Combination Therapy**: It is often used in conjunction with topical corticosteroids to minimize irritation and enhance results.

### Acitretin
- **Usage**: Acitretin is the only oral retinoid approved for psoriasis and is typically reserved for severe cases.
- **Considerations**: It requires careful monitoring due to potential side effects, especially in women of childbearing age due to the risk of birth defects.

### Isotretinoin
- **Off-label Use**: While primarily used for acne, isotretinoin may be considered for severe psoriasis in some cases, but it carries similar risks to acitretin.

## Conclusion

Retinoids, particularly **tazarotene** and **acitretin**, are effective treatments for psoriasis, helping to manage symptoms by regulating skin cell growth and reducing inflammation. It's essential to consult with a healthcare provider to determine the most appropriate treatment plan, especially considering potential side effects and the need for combination therapies.

REPLY
Profile picture for hopenr @hopenr

Yes as mentioned in my OP, I use pine tar soap, and am on an anti-inflammatory diet. I would like to know more about retinoids? I have no idea what my triggers are. I meditate and practice mindfulness and do not think of myself as particularly stressed, but you never know.
Thank you for the link!

Jump to this post

REPLY
Profile picture for dlydailyhope @dlydailyhope

@hopenr

This is what I learned about retinoids for psoriasis:

## How Retinoids Help Psoriasis

Retinoids, which are synthetic derivatives of vitamin A, play a significant role in the treatment of psoriasis. They work primarily by **slowing down the rapid growth of skin cells**, which is a hallmark of psoriasis. This action helps to reduce the thickening of the skin, scaling, redness, and inflammation associated with the condition.

### Mechanism of Action
- **Cell Growth Regulation**: Retinoids slow the proliferation of skin cells, preventing the excessive buildup that leads to plaques.
- **Reduction of Inflammation**: They help to lessen the inflammatory response in the skin, which can alleviate symptoms like redness and swelling.
- **Improvement of Nail Psoriasis**: Retinoids can also be effective in treating psoriasis that affects the nails, helping to reduce thickness and improve nail health.

## Best Retinoids for Psoriasis

The most commonly prescribed retinoid for psoriasis is **tazarotene**. It is available in cream or gel form and is typically applied once daily to the affected areas. Here’s a comparison of the most effective retinoids for psoriasis:

| **Retinoid** | **Form** | **Usage** | **Effectiveness** | **Side Effects** |
|----------------|------------------|-------------------------------|--------------------------------------------|-------------------------------------------|
| **Tazarotene** | Cream/Gel | Once daily | Reduces psoriasis by about 50% for many; some achieve complete relief for up to 3 months | Skin irritation, increased sun sensitivity |
| **Acitretin** | Oral (Soriatane) | Once daily with food | Effective for severe psoriasis; may take weeks to see full effects | Dry skin, hair loss, potential birth defects |
| **Isotretinoin** | Oral (Accutane) | Off-label use | Sometimes used for severe cases; effects vary | Similar to acitretin, with additional risks |

### Tazarotene
- **Effectiveness**: Tazarotene is particularly effective for moderate to severe psoriasis, often leading to significant improvement in symptoms.
- **Combination Therapy**: It is often used in conjunction with topical corticosteroids to minimize irritation and enhance results.

### Acitretin
- **Usage**: Acitretin is the only oral retinoid approved for psoriasis and is typically reserved for severe cases.
- **Considerations**: It requires careful monitoring due to potential side effects, especially in women of childbearing age due to the risk of birth defects.

### Isotretinoin
- **Off-label Use**: While primarily used for acne, isotretinoin may be considered for severe psoriasis in some cases, but it carries similar risks to acitretin.

## Conclusion

Retinoids, particularly **tazarotene** and **acitretin**, are effective treatments for psoriasis, helping to manage symptoms by regulating skin cell growth and reducing inflammation. It's essential to consult with a healthcare provider to determine the most appropriate treatment plan, especially considering potential side effects and the need for combination therapies.

Jump to this post

This is very generous of you, thank you!

REPLY

I have psoriatic arthritis, so I have both the arthritis and rash. I think I had it most of my lift and didn't know it because it was very mild when I was young. Once it hit menopause, my psoriasis exploded.

I tried all the usual things, UVB light treatments, clobetasol (which wasn't enough for almost my entire body), changing diet, and nothing was helping, so I started Humira. It took quite a while to work, but after about a year and 1/2 or so, I was about 75 to 80% clear. I did have many problems with my pharmacy, though, and ended up getting late doses and missed doses. At one point, I had nothing for about 2 months, so my Doctor at the time suggested I try Consentyx. Well, my pharmacy and insurer denied me for Cosentyx and said I had to try Skyrizi, so I tried that. Apparently, Skyrizi is very successful for many people, but not me, unfortunately. Both my skin and joints went completely downhill while taking it.

Then I had go back to a Rheumatologist because my knee got so inflamed, and had me go back on Humira while adding methotrexate. That worked a bit better, but at one point, she had me take the Humira every 10 days rather than every 14 days. I did that for quite a few months until my pharmacy suddenly made me stop. It figured because the combo of Humira every 10 days along with methotrexate (even though I had awful side effects from the methotrexate) worked the best. I was almost completely clear of my rash once my pharmacy stopped me from taking it every 10 days. Back to every 14 days wasn't working as well, and my side effects from methotrexate were getting unbearable, so I stopped it for about 6 months.

Then at one point, my pharmacy stopped providing Humira all together, so I had to switch again. My Doc and I chose a biosimilar, but it didn't work nearly as well for me.

I have also since completely stopped methotrexate, again due to the side effects. At one point I tried the injectable format instead of the pills because my Doc said some people do better on the injections. It didn't seem to matter for me, though.'

Now, as of 4 or 5 months ago, I've been taking Cosentyx. My pharmacy allowed it this time, I guess because of the failure of Skyrizi and the Humira biosimilar. It has not been working yet and my skin has been getting worse again. The itching had come back full force, though my joints aren't too bad. Maybe it works better for my joints than my skin. At last month's office visit, my Doc and I decided to try the higher dose of Cosentyx (300mg instead of 150mg per month), so I will see how that goes. I am due to my first dose of the 300 mg in about 2 weeks.

There are many biologic options available that target different proteins in the body, so if one doesn't work, there are others to try. It can be frustrating, though, because the results usually don't happen right away. Taking methotrexate along with biologics can help alot if you can tolerate the side effects. Not everyone gets side effects, either.

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