PUVA v UVB - what worked for you?

[susiedragons]

Hi there - thanks for your supportive reply which really cheered me up when I read it this morning 

I had a good appointment with my GP earlier.  Next week she's going to run a very comprehensive series of blood tests to find out just what effect my PPP is having on my general well ( maybe unwell?!) being.  Over the past years I have reacted badly to such a long list of drugs, so we/she's reluctant to go down that route, unless we really have to.  I already asked and there's no possibility of treatment at home.  There used to be light treatment facility on the Island, but that disappeared some years ago :-(

Tomorrow will be my 5th PUVA session.  Now that I've started this, I'll go through with the ten weeks/twice weekly programme as reports of PUVA treatment of PPP are so good.  After that we will see what happens.  The weather prospects for tomorrow aren't that good - I live on the Isle of Arran - so all depends on whether the ferry sails and if I can get back before the weather comes in too much.  Island life has so much going for it, but this is one of the few drawbacks.  I wonder if the hospital might do B&B for its stranded patients?      This would be much easier in the (relatively) calmer summer months ....    Oh, and I see the consultant on 1st December so I wonder what he'll make of it all ? I'll let you know what happens.   Best wishes    Susie

[Nicknackwack]

Hi Susie

You sound a bit chirpier today 

I've got a suggestion for you which will be worth discussing with your GP and also your Derm. Ask for a Vitamin D Test. There are two reasons for this.

1. Most p sufferers are Vitamin D deficient. It is well documented. Further, because those living in the Northern Hemisphere don't get enough sun then it follows that they struggle to produce Vit D naturally.

2. I have PUVA and have done for many years. In addition I also take Vitamin D3 as a supplement when being treated. Trials to date have shown that my PUVA treatment has been accelerated when used in combination with Vitamin D3. In fact I get clearance in 10 sessions in the booth rather than the benchmark 25. That'll save you some ferry trips 

The Vit D test is a very simple blood test but it can be used as an indicator to see if you are deficient. If you are then there may be a link as to why you get PPP.

You'll need to do some research. Have a look on the Alternative Forum for Vitamin D threads where you'll get some good advice from bjm and others about their experiences and how vit D helped them.

And have a look at my threads on the Lab Forum about PUVA & Vit D3 combo therapy and my successful treatment regimes. I get good remission for about a year but best of all I get limited side effects and can stretch my lifetime light treatment allowance for much longer.

Click on the link, it's starts with BathPUVA but then goes on to standard PUVA but you should be able to glean some useful info from it.: You are not allowed to view links. Register or Login

My PUVA & Vit D3 combo therapy is in the final stages of a 5 year study by my Derm Dept. To date Vit D3 has shown it to be a very positive benefit. Hope you find that info useful 

[susiedragons]

Hi there

Thanks for all your help.  I had to go to the docs yesterday and I said about D3 and she doesn't see a problem with my taking it as a supplement, so I'll get some next time I go shopping.  She said that the steroid based creams have vit D added to them anyway, but that extra couldn't do any harm, so long as I don't take tooooo much of it.

The ferry sailed Monday, the sea was a bit lumpy in the afternoon, but I got back home OK.  I'm off to the consultant tomorrow - the forecast isn't so bad - so it's time to sit down and think about a list of questions    The doc yesterday said that all the aches and pains I'm getting (mostly back and ribcage at night and feet and legs in the evening) are down to the PPP.  Psoriasis is a strange thing - derm consultant for the skin bit, rheumatologist for their bit of it, so where do I go to for aches and pains? 

I remember having severe whiplash some years back.  Maxillofacial for my jaws, somewhere else for my back and neck and shoulders but there was no department that joined me up to look at the whole me with the  problem.  I felt that I had a sort of no mans department where the two met and neither side crossed the boundary to look at the other!  Does the same thing tend to happen with psoriasis?  Glad to say that the whiplash is long behind me and I'm truly OK, but I can just remember the frustration.

Feeling OK this morning.  It's not raining or too windy and we had a Yellowhammer withe the Chaffinches and Sparrows in the garden.  That's enough to cheer me up for the rest of the day    Again, thanks for your help.

Susie

[susiedragons]

Hi there.  The consultant and doc weren't too interested in Vit D and suggested I take a simple multivit, which I'm doing anyway.  And, I've had to miss one PUVA last week and one the week before because of the weather    That makes 3 sessions missed already over just a very few weeks.  It looks OK at the moment for tomorrow, but Thursday already looks decidedly iffy for the ferry.  Is there a downside to pursuing PUVA on this hit and miss basis?  Am I likely to get some sort of rebound if I/we carry on PUVA intermittently or stop the PUVA?  Might it be better to propose carrying on with steroids alone and wait for calmer weather to come along (ho ho ho) after Christmas?  I can't remember a string of storms going through like this - it looks like one after another for the foreseeable future.  Susie
ps I'm feeling pretty good in myself, despite the discomfort and irritation of my PPP 

[Maria2]

Hello Susie,

I too have ppp, tried puva twice a week for 15 weeks and actually it made my ppp worse, probably shouldn't have finished the course but false hopes I suppose.

Then tried Acitretin, for me it was the drug from hell, got all the side effects but no improvement on my ppp, having said that there are alot of people on here that have had good results from it.

Sorry I cant be of any more help, other than telling you of my experience

Maria xx

 

[OOHSUITUSIR!]

Hi there.  The consultant and doc weren't too interested in Vit D and suggested I take a simple multivit, which I'm doing anyway.  And, I've had to miss one PUVA last week and one the week before because of the weather    That makes 3 sessions missed already over just a very few weeks.  It looks OK at the moment for tomorrow, but Thursday already looks decidedly iffy for the ferry.  Is there a downside to pursuing PUVA on this hit and miss basis?  Am I likely to get some sort of rebound if I/we carry on PUVA intermittently or stop the PUVA?  Might it be better to propose carrying on with steroids alone and wait for calmer weather to come along (ho ho ho) after Christmas?  I can't remember a string of storms going through like this - it looks like one after another for the foreseeable future.  Susie
ps I'm feeling pretty good in myself, despite the discomfort and irritation of my PPP 

Yes.....they probably don't have P themselves, and Derms hate Patients who do their own research.

[susiedragons]

Hi there.  Made it over to the mainland for PUVA yesterday morning.  Finally one of the sisters in the derm clinic has listened to me about the "side effects" of my PPP :-)))  I have a review coming up in the next fortnight or so, and she said for me to talk about this with whoever I see then.  Thank goodness.  We've had no sight nor sign of the sun here for days it seems, so I've started taking a vitD3 supplement.  You've probably read the reports about the problems up here in Scotland with the lack of winter and other sunshine? 

Feeling much happier in myself today - and happy New Year to anybody who reads this post.  Susie 

[0rient]

hiya
              i used nbuvb for about 5 years on and off it cleared it up 99% but came back after 2 _3 months then would have to do it again but that is not aproblem as i had it for 20 years and just glad i found something that works.it is best to apply a moisturiser before use as the light absobs into the skin better

yes me too panda bear, the P comes back quickly when I stop nbuvb. So now I don't stop anymore. After I clear I do maintenance 2x a week, then once a week indefinitely (except when I travel).

Hi Evoloftus...are you happy with the once a week indefinitely?? Any concerns with longer term health problems or does the results outweigh the risks? are there any proven risks with long term Narrow Band UVB useage?

Apologies for all the questions but considering purchasing a lamp/bed for long term use like yourself.

Cheers

[OOHSUITUSIR!]

Hi there

Thanks for all your help.  I had to go to the docs yesterday and I said about D3 and she doesn't see a problem with my taking it as a supplement, so I'll get some next time I go shopping.  She said that the steroid based creams have vit D added to them anyway, but that extra couldn't do any harm, so long as I don't take tooooo much of it.

The ferry sailed Monday, the sea was a bit lumpy in the afternoon, but I got back home OK.  I'm off to the consultant tomorrow - the forecast isn't so bad - so it's time to sit down and think about a list of questions    The doc yesterday said that all the aches and pains I'm getting (mostly back and ribcage at night and feet and legs in the evening) are down to the PPP.  Psoriasis is a strange thing - derm consultant for the skin bit, rheumatologist for their bit of it, so where do I go to for aches and pains? 

I remember having severe whiplash some years back.  Maxillofacial for my jaws, somewhere else for my back and neck and shoulders but there was no department that joined me up to look at the whole me with the  problem.  I felt that I had a sort of no mans department where the two met and neither side crossed the boundary to look at the other!  Does the same thing tend to happen with psoriasis?  Glad to say that the whiplash is long behind me and I'm truly OK, but I can just remember the frustration.

Feeling OK this morning.  It's not raining or too windy and we had a Yellowhammer withe the Chaffinches and Sparrows in the garden.  That's enough to cheer me up for the rest of the day    Again, thanks for your help.

Susie

Forget the consultant, take Vit D3 as a supplement, and don't stick to the recommended daily dose...its hopelessly out of date. I take 5000 iu /day , others I know take 10000iu /day.