Hello from soosieb99

[jiml]

Hi Jim
I thought I had replied to your message but clearly not! Sorry.
I know I've not been on here for a while just been a tad manic.
I am still on my meds. It has been a battle still to get them in time and had massive flare up when the appointment with the specialist didn't coincide and I ran out. Was very angry with them and told them so. Since then I have still had to battle and get prescriptions done by other doctors to tide me over. Surely it shouldn't be this hard???!! Anyway I went back to see the head honcho a couple of weeks ago. He was not happy at all with the fact that I had been having problems with it all and dictated a letter there and then to say that the meds should be on repeat!! Hallelujah! He also wasn't happy that it was still active and has increased the dose to 20 mg per day. I am supposed to see him in 3 weeks following that appointment and ..... Yep you guessed it! No appointment has arrived as yet with 1 week to go! Hey ho. The psoriasis is a lot clearer though despite all that and hopefully will now be even better. Side effects are not great but will see how it goes.

Thanks for asking!

How are things with you?

SB

Hi Soosieb don't worry about not replying earlier .... I hope you didn't mind me asking  
Life can be manic, and often the last thing you need to be thinking about is writing on here

What a shame you have struggled with the supply of acetretin .... But I'm glad you have finally got that sorted out ...I'm glad you are clearing now you have upped the dose to 20mg. and will get a regular supply it should hopefully clear for you...
What side effects are you still getting ?
If I were you I would ring the dermatologists secretary and ask if there was an appointment that may have got lost in the post   explain that he wanted to see you in three weeks

Myself I'm doing fine and I'm still virtually clear and enjoying life to the full ... Making the best of being clear

[soosieb99]

Glad to hear you are still doing so well Jim! ? Hopefully I will get there soon. I will ring the secretary .... I'vespokento her so often we are on first name terms! ... towards the end of the week! Will let you know the outcome. Side effects are aches and pains in joints, mild flushes and buzzy head all if thick the specialist knows. But there doesn't seem to be a vast increase in any of those considering the doubling of the dosage. So we will see.

Happy New Year to you and everyone!

SB

[jiml]

Glad to hear you are still doing so well Jim! ? Hopefully I will get there soon. I will ring the secretary .... I'vespokento her so often we are on first name terms! ... towards the end of the week! Will let you know the outcome. Side effects are aches and pains in joints, mild flushes and buzzy head all if thick the specialist knows. But there doesn't seem to be a vast increase in any of those considering the doubling of the dosage. So we will see.

Happy New Year to you and everyone!

SB

Good luck, I look forward to hearing the outcome of meeting ... Hopefully the aches will pass with the clearance
Happy new year to you and your family
Jim

[Caroline]

Happy new year Soosie !

Will you join in on the psoriasisclub New Years party?

[Kat]

Good luck Soosie and Happy New Year!

[soosieb99]

Hi all
How's everyone doing?

I know I've been away for a while and apologise for that.

Well I'm a year in to taking the meds that I've dreaded for years. I can honestly say even now that I'm not sure about them. A brief synopsis:
Started on low dose of 10mg per day. 2 visits to specialist when I saw underling not main man who seemed happy with progress.
Next visit with main man who said we could do better and doubled the dose.
Despite letters from specialist to gp asking to put meds on repeat prescription to avoid running out between appointments gp has refused.
I have to continually chase for appointments with specialist to ensure I don't run out.
Side effects are quite bad. Continually hot, plus spikes of flushes as well. Hair falling out quite badly. Eyes v v dry so spending loads on drops.
Last visit in March he decided to put me on light treatment again. Had first session 3 weeks ago as there is a big waiting list. Also had terrible time with body temp, incredible itching and bad hair loss so I decided to drop off one of the tablets and go back to 10 mg. probably not the best decision. Had major stress about some stuff and 2 weeks later had the worst flare up ever resulting in being unable to walk and time off work.

So eventually settled down a bit went back on20 mg. Knocked off light treatment this week because I just couldn't cope with it. Then got new appointment through for 16 July which is 3 days after my meds run out!!!!

So spent 2 days trying to get hold of gp finally managing today to see if they could do an emergency prescription as they agreed.

Currently feel v dejected about it all.

Does everyone else have all this trouble or is it just me? Can anyone give me advice on what I should be asking for when I go back? For an intelligent woman I feel totally at a loss on how to manage everything.

Sorry for long post after all this time but I could really do with your help.

Thanks
S

[jiml]

Hi all
How's everyone doing?

I know I've been away for a while and apologise for that.

Well I'm a year in to taking the meds that I've dreaded for years. I can honestly say even now that I'm not sure about them. A brief synopsis:
Started on low dose of 10mg per day. 2 visits to specialist when I saw underling not main man who seemed happy with progress.
Next visit with main man who said we could do better and doubled the dose.
Despite letters from specialist to gp asking to put meds on repeat prescription to avoid running out between appointments gp has refused.
I have to continually chase for appointments with specialist to ensure I don't run out.
Side effects are quite bad. Continually hot, plus spikes of flushes as well. Hair falling out quite badly. Eyes v v dry so spending loads on drops.
Last visit in March he decided to put me on light treatment again. Had first session 3 weeks ago as there is a big waiting list. Also had terrible time with body temp, incredible itching and bad hair loss so I decided to drop off one of the tablets and go back to 10 mg. probably not the best decision. Had major stress about some stuff and 2 weeks later had the worst flare up ever resulting in being unable to walk and time off work.

So eventually settled down a bit went back on20 mg. Knocked off light treatment this week because I just couldn't cope with it. Then got new appointment through for 16 July which is 3 days after my meds run out!!!!

So spent 2 days trying to get hold of gp finally managing today to see if they could do an emergency prescription as they agreed.

Currently feel v dejected about it all.

Does everyone else have all this trouble or is it just me?  Can anyone give me advice on what I should be asking for when I go back? For an intelligent woman I feel totally at a loss on how to manage everything.

Sorry for long post after all this time but I could really do with your help.

Thanks
S

No need to apologise Soosie, you just come back when you can we are always pleased to see you.

It seems to me as if you have been given the run around in the dermatology department trying to save money....although acetretin is not an expensive drug...

With me when I go to my dermatology appointment. I have my arguments ready in case they want to change anything.and at the end when he says make an appointment for three months....I ask for a prescription for 3 months supply of my drug

I would try to keep up with the acetretin and the side effects should ease off there are many on here that will tell you that, and your hair will thicken up again.

[Fred]

Hello Soosieb, no need to apologise.

There is usually someone here that can help. But it may be worth you starting a new thread in Prescribed Treatments For Psoriasis with your questions. You're not obligated to do so, but you may get more answers there as this is your old introduction thread and it may get missed by others..

Regards.

Fred.

[JohnB]

Hi Soosieb99
We've not met yet, I've not been on that long as a member So sorry to hear you are having such a rough time on the Meds.  I dare say a lot of the same crowd are still here and will be welcoming you back with open arms. No apologies are needed everybody has a life to lead but this is the best place to come if you need to off load.
I don't understand why your GP is refusing to do repeat perscriptions - unless its a financial thing.
I am on Acitretin  as well but don't have any of your side effects. Dry lips and sticky palms are all that effect me. I have just finished moulting from the palms and feet not a pretty sight .

To me if you are suffering such unpleasant side effects it may be time for a change to a different one that effects you less

[JohnB]

Hi Soosieb99
We've not met yet, I've not been on that long as a member So sorry to hear you are having such a rough time on the Meds.  I dare say a lot of the same crowd are still here and will be welcoming you back with open arms. No apologies are needed everybody has a life to lead but this is the best place to come if you need to off load.
I don't understand why your GP is refusing to do repeat perscriptions - unless its a financial thing.
I am on Acitretin  as well but don't have any of your side effects. Dry lips and sticky palms are all that effect me. I have just finished moulting from the palms and feet not a pretty sight .

To me if you are suffering such unpleasant side effects it may be time for a change to a different one that effects you less

See they beat me to it again