End of my tether

[Sandra]

Hi there,
Me again, but really feel the need to moan. So still waiting on the appointment for rheumatology, still waiting for dermatology appointment. Laying in bed in pain, hands, feet, knees, neck, feel like they are on fire. Pain in all joints and psoriasis everywhere. I have never had it on my face before and now suddenly here it is! I cannot quite describe how I feel at this moment in time except to say I have had enough! I itch all over and I mean all over, my feet and ankles are covered, swollen. My hands look like I have leprosy. Right now I really don't know what to do with myself. I really don't! I can literally peel my skin off in sheets, my husband can't believe it! It is reproducing so quickly I can't keep up with it. None of my usual stuff is making a difference.
Sorry, I know all I can do is wait for appointments, but I think tonight I have reached my limit in pain, itch and actually how revolting I look!

[jiml]

Hi there,
Me again, but really feel the need to moan. So still waiting on the appointment for rheumatology, still waiting for dermatology appointment. Laying in bed in pain, hands, feet, knees, neck, feel like they are on fire. Pain in all joints and psoriasis everywhere. I have never had it on my face before and now suddenly here it is! I cannot quite describe how I feel at this moment in time except to say I have had enough! I itch all over and I mean all over, my feet and ankles are covered, swollen. My hands look like I have leprosy. Right now I really don't know what to do with myself. I really don't! I can literally peel my skin off in sheets, my husband can't believe it! It is reproducing so quickly I can't keep up with it. None of my usual stuff is making a difference.
Sorry, I know all I can do is wait for appointments, but I think tonight I have reached my limit in pain, itch and actually how revolting I look!

Ooooh Sandra
What a surprise I thought you were doing well on phototherapy, why don't you turn up at A&E and tell them you're in terrible pain which you obviously are,
Or pester your doctor tell him it's urgent which it is it's the lack of action is damaging your joints..... Show your doctor how bad you are, he will have to do something to help....

Now don't shoot me down ..... I think you said on an earlier post ( unless my memory fails me and it often does) that you have resisted tablets and other medications apart from creams and UV treatment......
I really think it's time for you to consider them even methotrexate will be better than the life it sounds you are having now.

Sandra I think it's time you pushed your doctor for an urgent appointment
You should not have to suffer there are things out there that will work and give you quality life back .....
Good luck I know it's hard to be positive, but there is hope, please keep coming back if only to chat .....

[jiml]

Just looked back over your posts it was the beginning of August your GP referred you for an urgent appointment and told you about 12 weeks oooooooooh that's not good enough
Why not phone the hospital and ask to speak to the consultants secretary..... Weep down the phone, tell her how bad it is plead for an early appointment, she or he will know that there are people like me who the consultant is seeing who are relatively clear and can easily reschedule their appointments, to make way for a serious case..
Sandra make a nuisance of yourself . I would and have in the past.

[Sandra]

Hi Jim,
Yes, your right, I have always said, I would not be keen to try the newer meds, however even my consultant has said they are so new, no one knows the long term side effects! However I can honestly say, at this moment in time albeit a weak moment! I would honestly take or give anything for just 5 mins without pain. It's 12.45p.m. I have been up since 4a.m. Because I can't sleep more than a few hours, the pain wakes me, prevents me sleeping. I'm going to take your advice and go to g.p. In the morning and insist they contact consultant and try to get me in quicker, though apparently they have requested an urgent appointment. Sorry for the moan, really, I'm usually a tough cookie but it's just constant and I'm so tired trying to fight it.
Thank you for kind words and advice and for being up at this time of night!

[jiml]

Hi Jim,
Yes, your right, I have always said, I would not be keen to try the newer meds, however even my consultant has said they are so new, no one knows the long term side effects! However I can honestly say, at this moment in time albeit a weak moment! I would honestly take or give anything for just 5 mins without pain. It's 12.45p.m. I have been up since 4a.m. Because I can't sleep more than a few hours, the pain wakes me, prevents me sleeping. I'm going to take your advice and go to g.p. In the morning and insist they contact consultant and try to get me in quicker, though apparently they have requested an urgent appointment. Sorry for the moan, really, I'm usually a tough cookie but it's just constant and I'm so tired trying to fight it.
Thank you for kind words and advice and for being up at this time of night!

Sandra you never need to apologise even tough cookies crack under extreme pressure, I'm always around at this time I don't sleep much generally around 1.30 I doze till around six or 7

The tablets I'm on aren't new they have been used in Germany for well over 20 years, although I don't know if they will prescribe them as a first try, it will probably be methotrexate.
They are prescribing my drug Fumaderm in Scotland I have seen a few members from Scotland are on it.
The problem being you want a quick fix and Fumaderm will take time to work whereas methotrexate should work faster or at least it did for me .
Give my idea of ringing the hospital a go ....... You have nothing to lose
If you feel like a chat and you can't see me online chances are I'm emailing or elsewhere just pm me or post I will reply
Jim

[Bill]

Hi Sandra,

I had quite unpleasant arthritis with my psoriasis. I would wake in considerable pain after a few hours. Rolling in bed was excruciating and getting up in the morning was slow and difficult. DMF has made an enormous difference to me, and reduced my pain considerably after a few months of therapy.

I am sure there is a treatment that will work for you.

Cheers,

Bill

[Sandra]

Hi Bill
I was beginning to think it was just me! Daft I know! Just come back from G.p. He is calling the hospital today and has signed me off work. He's also given me some antihistamine for itch on top of 2 carrier bags full of meds. So even if the itch stops, I think I could cope with the pain a bit better. Anyway I'm going to take my full whack of pain meds which I haven't been able to do because of working and hopefully will nod off this afternoon.
Sandra

[jiml]

Hi Bill
I was beginning to think it was just me! Daft I know! Just come back from G.p. He is calling the hospital today and has signed me off work. He's also given me some antihistamine for itch on top of 2 carrier bags full of meds. So even if the itch stops, I think I could cope with the pain a bit better. Anyway I'm going to take my full whack of pain meds which I haven't been able to do because of working and hopefully will nod off this afternoon.
Sandra

No it isn't you, it's the bloody system they don't see any urgency
Great news at least now you have something to ease the pain . I hope you get some sleep and wake refreshed.
I hope now the doctor has seen you that he may push the hospital for an early appointment
Good luck

[Fred]

Hello Sandra, don't be down we're all with you.

Unfortunately psoriasis and psoriatic arthritis can sometimes hit us very very hard, I know it happened to me. I coped for years just slapping on cream, hiding away, and constantly popping pain killers till one day I was covered head to toe and got to the stage of being unable to move. I couldn't dress my self, pick up a cup, I was like you say "peeling off sheets of the damn stuff" I was getting so down and grumpy that I ended up taking it out on my wife, until one day at dinner she said "Why won't you let me cut your dinner up for you" This time I didn't have a go at her, I broke down and realised it was time to get help.

Today I'm around 95% clear and just have the odd little bit that just won't go away on my legs and sometimes in my toes, my psoriatic arthritis although not perfect and I do have my days but I'm able to cope with and get around without to much bother. Sandra I got my life back thanks to finding a new fantastic dermatologist who worked with me to find what was best.

I think like Jim it's time you sat down and thought hard about where you are going with this. It may ease eventually, but at the moment you are in a vicious circle. Psoriasis gets bad, psoriatic arthritis gets worse, you get down, psoriasis gets worse, and so it goes on.

I can understand your concerns about not going onto other treatments, but trust me it's worth it just to get your life back on track so you can enjoy it again. Give it a go, you can always stop. It may take a while to find what is right for you but it will get you out of the state you are in at the moment.

Re your consultant saying "they are so new, no one knows the long term side effects!" in some ways he/she is right but my personal opinion would be to find another dermatologist as they have been around a long time and have gone through very rigorous testing before being released. Your consultant should be embrasing the new treatments not putting doubt in peoples minds.

Dates the bio's first came into being:

Humira (adalimumab) 1993
Enbrel (etanercept) 1998
Remicade (infliximab) 1998
Stelara (ustekinumab) 2007

There are new ones being tested as we speak and things are moving forward at a fast rate. The latest being Simponi (golimumab) which was started being used 2013

Like Jim said Fumaderm around 20 years.

I don't however with Jim about giving Methotrexate a try, yes it's been around since the 50s and will probably help but it's Poison in my opinion and you will regret taking it.

Sandra these are just my personal opinions and I think you will be wise to get a better dermatologist, get onto one of the above claim your life back and enjoy it.

And yes you MUST push them, keep at it go to A&E and tell them your life is ruined and you cant move. I'm not sure if Scotland is under the NICE "National Institute For Health And Clinical Excellence" group but these article are worth a read:
Psoriasis on NICE quality standards
NICE issues new guidance for GPs treating psoriasis
NICE Quality Standards for Psoriasis

It's your body that that you trust them to play with, so make sure you're in charge of the final decision.

At the end of the day you be assured there are members here that will listen and you never have to apologise for ranting on here.

Regards.

Fred.

[Bill]

Yep, less than two hours and I would wake in pain, so I would spend my nights going from back to side. Ouch!

I dont like MTX and took an unconventional approach. Fortunately it works well and is very cheap, with a 120 mg dose costing less than 2p, compared with the £2 that Jim pays. I am hoping that DMF will keep working for me at least until the biologic patents start expiring. It is currently working better than ever.

I hope you work something out with your specialist. It is so wrong that you are suffering with such effective treatments available.

Cheers,

Bill