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Psoriasis Club › HealthHealth Boards › Psoriasis And Psoriatic Arthritis Topics v
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In need of advice

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In need of advice
Lostsoul Offline Author
Novice


Posts: 8
Threads: 2
Joined: Feb 2015
Gender: Female
Location: Hertfordshire
Treatment: Too many lost count
#11
Fri-20-02-2015, 11:37 AM
I phoned to see if I could see my old derm as he was really good and knew what he was doing and knew how to deal with his patients but I got told it will be weeks in end till I'll be able to see him as he's got a big list of patients. What I was going to do as a back up plan is go back to my doctor whose a skin specialist and hope he will be able to get me to see my old derm.
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Fred Online
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,956
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#12
Fri-20-02-2015, 11:48 AM
(Fri-20-02-2015, 11:37 AM)Lostsoul Wrote: I phoned to see if I could see my old derm as he was really good and knew what he was doing and knew how to deal with his patients but I got told it will be weeks in end till I'll be able to see him as he's got a big list of patients. What I was going to do as a back up plan is go back to my doctor whose a skin specialist and hope he will be able to get me to see my old derm.

Push push push. Keep at them, phone them every day if necessary. You sound like you are in one of those areas where it's all about numbers, the winners in those situations are the ones that kick up a fuss and complain. Shame it has to be like that, but I have spoken with others on here and they do find once they start demanding results more stuff does get done.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#13
Fri-20-02-2015, 11:53 AM (This post was last modified: Fri-20-02-2015, 22:31 PM by jiml.)
(Fri-20-02-2015, 11:37 AM)Lostsoul Wrote: I phoned to see if I could see my old derm as he was really good and knew what he was doing and knew how to deal with his patients but I got told it will be weeks in end till I'll be able to see him as he's got a big list of patients. What I was going to do as a back up plan is go back to my doctor whose a skin specialist and hope he will be able to get me to see my old derm.

Good luck
Don't ease up on the pressure, make a nuisance of yourself, you don't deserve to be made to suffer. Keep phoning ask to speak to your old dermatologists secretary, tell them you will take a cancellation if one comes up .
It always works for me they will get to know your name and realise you are unhappy, if they don't hear from you as far as they are concerned you are a satisfied patient
Good luck and do stay in touch and keep us updated
Good luck at College, and good luck with your little one.
Jim
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Kat Offline
Take my advice; I don't use it anyway.
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Posts: 9,829
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Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#14
Fri-20-02-2015, 15:56 PM
Welcome Lostsoul!

I don't have much to add to what others have already said. If you can't make the trip then you just have to tell them. I don't have a child to care for, and I drive and it was still difficult to make that trip 3 x per week as I live out in the country and it was an hour's drive for me there and another hour back.

I hope the nurse is more understanding and that you get on a treatment that is doable for you!
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D Foster Online
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,164
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#15
Fri-20-02-2015, 18:59 PM (This post was last modified: Fri-20-02-2015, 19:00 PM by D Foster.)
Hi lostsoul, you appear to have had a wide range of treatments inc cyclo and MTX so I don't see why they could not put you on Stelara which is every 12 weeks after the first two injections and you can do your own injections ,it works really good for the majority of patients. Just shout as loud as you can ,it's a poor situation when the one who shouts the most gets the best treatment but don't take any rubbish from the NHS .I don't have a lot of faith in the NHS as such but do not take no for an answer, give them some stick.
Best of luck and by the way what is the baby called ?
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,513
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Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#16
Fri-20-02-2015, 19:58 PM
(Fri-20-02-2015, 11:27 AM)Lostsoul Wrote: I am not breastfeeding and we are not going to have anymore children for at least a few more years. .

Do They have to know that ? Wouldn't think so, certainly not if it is an argument
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#17
Fri-20-02-2015, 22:28 PM
(Fri-20-02-2015, 19:58 PM)Caroline Wrote:
(Fri-20-02-2015, 11:27 AM)Lostsoul Wrote: I am not breastfeeding and we are not going to have anymore children for at least a few more years. .

Do They have to know that ? Wouldn't think so, certainly not if it is an argument

Yes they need to know before prescribing Fumaderm that the patient is not planning a pregnancy or breastfeeding


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Lostsoul Offline Author
Novice


Posts: 8
Threads: 2
Joined: Feb 2015
Gender: Female
Location: Hertfordshire
Treatment: Too many lost count
#18
Fri-20-02-2015, 22:45 PM
When I saw my derm they did ask me if I am breastfeeding, on contraception and if you are planning to have chilren or any more children. It was part of my assessment they even asked me last time when I've had treatment before.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#19
Fri-20-02-2015, 23:19 PM
I'm glad they are asking you the right questions . So as they are aware of your circumstances they could offer something other than UV treatment Thumb
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Debbie Offline
Member


Posts: 28
Threads: 2
Joined: Apr 2015
Gender: Female
Location: Norwich
Psoriasis Score: 27
Treatment: Fumaderm, hydromol, timmodine,coal tar shampoo
#20
Thu-16-04-2015, 21:52 PM
(Fri-20-02-2015, 11:09 AM)jiml Wrote: 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,
Don,t give up as it will only get worse, I agree with Jim, phone the hospital and keep insisting
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