has anyone here had phototherapy and get discouraged?

[CTyankee]

I have it 3X a week for my nemmular dermatitis and it is taking forever to get any better. I've been doing it for a MONTH. My doc says he doesn't want me to get discouraged and give up on it. But I keep waiting for relief of the extreme itchiness of this thing and nada is happening. The nurses supervising my therapy say things will improve soon but I've been going for a month and no relief.

Mine is a full body treatment where you basically strip down (nothing on except the goggles they give you) and stand in the "chamber" surrounded by UVB and UVA lights for two minutes.

I am told that you have to "work up" to a certain level and when you turn pink you are at the best dosage. My abdomen turned pink last week. The nurses were pleased.I was expecting things to move quickly from there but that hasn't happened.

I'm discouraged but my doc says 95% of his patients with my problem find relief from these procedures. Hope he's right...

[Bernardo de La Paz]

1. Chronic conditions that take time to get established don't go away suddenly. Carry on & good luck.nt

[wncHillsupport]

2. CT, I don't have that experience but

I have a different skin disease that I had for years and finally agreed to trying methotrexate and it has been a miracle drug for me. I am on a low dose.

I found this about your condition:
"Phototherapy may be helpful. Broadband or narrow band UVB is most commonly used, although PUVA (Psoralen + UVA) may be used in severe cases.

Once the eruption has resolved, ongoing aggressive hydration may decrease the frequency between flares, particularly in dry climates. Heavy moisturizers (preferably a sensitive-skin formulation) or petroleum jelly applied to damp skin after showering may be helpful.

Disease may be severe and refractory to the above treatments. Immune suppressive medications such as methotrexate have been described to be safe and effective in these severly affected patients.". ... end excerpt.

It sounds like your dr is on the right track. If phototherapy does not work, after giving it plenty of time to build to a therapeutic dose in your body, then you may want to ask about methotrexate. But, sources also say it can resolve eventually and not come back.

Try to hang in with the treatment you are on. I am sure your health team is telling you about things to do for symptom relief. Keep trying different skin moisturizers--they probably have recommendations.

....Not a physician, nor do I play one on TV.

[CTyankee]

4. Yes, I find Eucerin cream to be best. I use triamcolon onthe lesions and Eucerin all over.

It's a slow go. I also take Allegra and montelukast sodium each day and Zyrtec at night.

I'll keep hacking along, I guess.

thanks for your advice.

[Freethinker65]

3. Been off and on UVB phototherapy for 35 years to treat psoriasis

Gradually increasing to a therapeutic dose over time can be frustrating but is essential. What I found most discouraging was insurance plans of the past (primarily HMOs) often allowed only a set number of treatments before the referral had to be re-approved. This would lead to a gap in treatment, so once re-approved, the therapy dose level would essential restart to day 1. It was extremely difficult to ever get to a therapeutic dose, so I would often resort to alternative, and often less effective, treatment methods.
I am extremely fortunate now to have a PPO-type policy and a clinic with a light unit less than one mile from where I live. I have been down to a "maintenance" treatment schedule (once/week) for over one year.
I am not familiar with nemmular dermatitis, and never did UVA (came very close years ago), but if it is not too expensive or inconvenient for you to go 3x/week, I would try it a bit longer. Good luck.

[Warpy]

5. Phototherapy walks a fine line between treatment and damage

and the dosage does need to be increased slowly. If you've shown some improvement anywhere after the first month, you're ahead of the curve.

Some things are just not quick cures. Back in the bad old days when they didn't know they were giving their paler patients skin cancer, the treatments were stronger and worked faster.