In need of advice

[Lostsoul]

I'm stuck in a big problemo which I can't find a reasonable answer to.
I've recently been referred back to light treatment but the hospital is over half an hour away, I don't drive And I rely on public transport I also have a 3 month old daughter. I'm also moving further away from where I live which doesn't have a train station nor busses that travel to where I need to go. The other thing is I'm going back to college in August. I'm struggling to deal with the fact my psoriasis is getting worse.

I need advice on what I shoud do as I feel like giving up with the treatment before it's even started for the fact of not being able to make my appointments.






Try and stay positive  

[jiml]

Oh Dear Lostsoul that sounds to me as if you are in an awkward position ..you need some treatment but travelling to get it is a problem
I would have a word with the dermatologist and explain you situation and ask if there is any alternative
Mention that you have discussed the matter with others and they have suggested   trying tablets as it won't involve travelling to the hospital... It's worth a try and you may end up on the treatment I am on Fumaderm
I hope you will get some help which doesn't involve you in a lot of travelling 2 or 3 times a week

By the way a very warm welcome to the forum I hope you enjoy your time here and I look forward to hearing how things work out
Good luck
Jim

[Caroline]

Hello Lostsoul,

Welcome to Psoriasisclub.

Indeed a nasty situation. Following college is possible in your new location?
Can you explain a little bit more on your situation?
How serious/worse is your psoriasis?
Apparently you are quite young to already have psoriasis (hear me saying it... )

The pills Jim suggests might be a good way to go if you are already on the point that your psoriasis is intolerable.
About the light therapy. It works, but has the big drawback that if you stop... and you will have to stop otherwise your skin will become to damaged from the UV radiation, so if you stop Psoriasis will inevitably come back. That holds for all treatments, there is no treatment that will have it go away forever.

Jim's suggestion points to a type of pill that is quite harmless for you body and has a high success rate. Maybe your dermatologist might want to set you on something else, then it is probably good for you not to accept that. Lots of treatments really cause harm in your body and you still have a long way to go.

Have a good time over here, there is always someone available to have a chat with you.

Caroline

[Fred]

Hello Lostsoul   to Psoriasis Club

I would suggest the same as Jim and Caroline, have a word with your dermatologist and explain how difficult the travelling is going to be for you and ask about Fumaderm. Tell them you are planning another baby, that will stop them prescribing Methotrexate, Acitretin, Etc.  

Having said that the guidelines for Fumaderm say "You should not take Fumaderm if you are pregnant or breastfeeding" but it's something you could ask about.

The next option after the tablets is the Bio treatments, that would save on journey's as you can do the injections at home. But I doubt they would give you them yet.

Apart from that it's back to the creams.

Just a thought would it be worth asking your college if they know of any help with transport in your case, colleges are a great source of information and you have nothing to loose by asking.

Regards.

Fred.

[Lostsoul]

I'll explain my situation in better detail.
At the moment I'm living half an hour away from the hospital where I can get a train and when I start college in August I've got that sorted out. I'll be moving out of the town to a place where there isn't a transtaion and there isnt a bus that comes often enough. My partner is the only one that drives and he works a lot and at the moment I'm a stay at home mum to my baby daughter. I start my treatment on Wednesday, I'll have to go 3 times a week for 8 weeks till they review my "case" and see how my treatment is going. I can't afford to get there 3 times a week as I'm on maternity pay I've only got it for another 5 months but The money doesn't get me very far. The place i have to go to is hertford county hospital as they have a dermatology department and is the only "local" department.

I haven't had to have treatment for 2-3 years as I got discharged as being an outpatient and had clear skin. I had different types of treatment back then Ive tried methotrexate and cyclosporine. I've had guttate and plaque psoriasis.
My psoriasis started coming back in October 2013 but started to clear in April 2014 as I fell pregnant. Since giving birth in November last year it started coming back slowly. I had plaque on my arms but that cleared up using different creams I got prescribed. Now nothing is working I've got plaque on my ankles and I have slight blistering psoriasis on my palms and bottom of my feet , psoriasi in my toe nails and indentations in my finger nails, the rest I'm covered in guttate. The only clear place is my face at the moment.

I really don't know what to do. As much as I am greatful for the treatment I'll be getting I just don't know if I should have it because of the situation I have.

[jiml]

I can see your problem Much clearer now. You have been on the Methotrexate and cyclosporin and to move on from those they should have considered something other that UV
Can I ask are you Breastfeeding, and do you intent to have more children in the near future as this may be why they have moved you Backwards on treatments.
If you are doing neither of the above and your blood counts are good there is no reason not to be prescribed Fumaderm ..  I know it's a hobbyhorse of mine but if you can tollerate it.....it is a life changer....

I'm sure the stress of all the travelling in the future and trying to fit in Phototherapy and bring up a new baby will be extremely stressful and we all know how bad that is for our  psoriasis

I would phone the hospital and explain your situation  tell them what you have told us but emphasise how difficult it's going to be and how you are already stressed at the prospect, and financially you cannot afford the travelling ....tell them . But on the other hand you are desperate for some relief, and could you try Fumaderm with regular monitoring of your bloods by a local doctor ..

I have great sympathy with your predicament and hope you can get it sorted out fairly quickly...
Jim,

[Fred]

I cant offer much more than what Jim has just said, apart from I don't know if this is of any help.

NO LINKS ALLOWED

I didn't find maternity pay, but it mentions low income so may be worth a look.

[Lostsoul]

I am not breastfeeding and we are not going to have anymore children for at least a few more years. The other thing that bothers me is I was referred to my original derm who dealt with me 3 years ago but as I was desperate for help I went to an appointment on a Saturday as it was a cancellation. I don't think the derm checked my records out on how well I did with the meds. She wasn't very understanding... I think she was a newbie. All I really got out of the appointment was the light treatment option and more lotions and potions.

[jiml]

I am not breastfeeding and we are not going to have anymore children for at least a few more years. The other thing that bothers me is I was referred to my original derm who dealt with me 3 years ago but as I was desperate for help I went to an appointment on a Saturday as it was a cancellation. I don't think the derm checked my records out on how well I did with the meds. She wasn't very understanding... I think she was a newbie. All I really got out of the appointment was the light treatment option and more lotions and potions.

I would phone as my previous post and hopefully get a sensible dermatologist

[Lostsoul]

Thanks for the advice guys, the thing with claiming back on travel is they don't do it at the hospital I'll be going to as the have stopped giving back. I'll have to travel to another hospital to get only a percentage of the travel back. I'll be going to my first appointment and be explaining everything to the nurse hopefully she will be more understanding than the derm.