Thursday, 22 July 2010

Fingers Crossed

Well I figured I should be talking this through with my cyber friends so here goes.

Those of you that have been with me for a while will know that I struggle with a psoriasis and with psoriatic arthritis/fibromyalgia, today I am back to see the consultant for my skin, after feeling totally let down by the system and one doctor not talking to the other I was put on a drug called Acitretin basically the drug that I need is so expensive no-one seems to be able to give the go ahead for it. so reluctantly I accepted the Acitretin, only to find out that they can only keep me on this drug for 6 months so basically it is a stop gap drug until they figure out what to do with me.

To my horror I seemed to have every side affect that the drug could offer me and more of a horror reared it's head over the past couple of weeks. I'm starting to loose my hair. It's everywhere I turn, shower, sink, keyboard, desk, shoulders. okay no bald patches as yet but if it keeps coming out at the rate it is now then it is only a matter of time. I do have psoriasis on my scalp but not enough to warrant my hair falling out and the itchiness I am experiencing.

Chris is coming with me today, more for moral support than anything else but hopefully he will be able to get across just how much this is effecting my life now.

So friends please keep your fingers crossed for me to get a good result from the consultant, failing that I'm going to shave my head before the bald patches appear ha ha!

46 comments:

MrsK said...

Oh Jak keep ya chin up lass i know its easier said then done but happy thoughts!

Sal xx

Marge said...

Oh, that is so awful, Jak! You are in my thoughts, prayers and my fingers are double-crossed. I pray there's relief soon coming for you!

Lisa Foster said...

Oh my goodness!! I am so sorry you are having such a hard time...uh...drugs...fix one thing to break another. You are in my prayers and I hope that things go well for you and they get something figured out that will help you!
Big Huge Hug,
Lisa

Myrna said...

Jak
You will be in the hearts, minds and prayers of many people as you go through, yet another, hard patch.
Myrna

Merry said...

Oh Jak, take care and hope they figure out a better option for you. Big hugs.

Marisa said...

Oh Jak, you poor thing! I have fibromyalgia too, which is bad enough without having the others as well. I really hope they can find something else for you soon.
hugs
Marisa

Pamela said...

Oh Jak so sorry to hear this and hope you get on well today, will be thinking of you.

Pam x

Loopylou!! said...

oh jak, i am sorry to hear about this hun, sending huge cyber hugs and will be keeping everything crossed for you hun xxxxxx

Aquarius said...

Thinking about you and hope the outcome is positive today.

Tracey said...

fingers crossed for your Jak. (((hugs)))

Anne said...

Hope all goes well for you today Jak, thinking of you and sending positive vibes. Hugs x

Jo said...

Jak.. I hope everything gets sorted for you at the consult.. so sorry for what's happening, but fingers crossed you get the result you need!

Jo x

My'scardcorner said...

Hope you get some better results today Jak Good Luck
Myrax

Sian said...

Sorry to hear about what you've been going through. Hope today will bring some positive news and get the results you need.

val090 said...

Jak when you go today ask if it's possible for you to be considered for funding. A friend of our has been granted it and is on a drug that costs £2500 a month. if you don't ask you don't get. Meanwhile I have much sympathy with you, it must made you feel dreadful!

Sheila - Ginger said...

Oh Jak...what an awful thing to have to be going through. I do hope you get some decent advice and medication today and so pleased Chris is going with you. Sometimes the person will think of a question that you haven't thought of. Good luck...sending heaps of positive vibes and let us know how you get on.

Love Sheila xx

Helen said...

Goodness Jak I can only imagine how you are feeling I will be thinking about you and hope you can get a more positive news x

Jean said...

You are having such a rough time with psoriasis the last thing you need is more problems created by the treatment. Ask if it is possible to get approval for the drug you really need based on the side effects that you are suffering - there is no way that you should have to endure your condition/well-being deteriorating because of their treatment.
Hope that you get some progress.

~ Ali ~ said...

My dearest Jak I cannot believe this is still going on. If you still have my number please don't hesitate to call me. I had this problem with the Methotrexate when they upped the dosage and it floored me. Sending you the gentlest of hugs keeping everything crossed for you today. Mwah Ali x

Rosietoes said...

I hope that everything goes well for you today Jak. Apart from putting up with the effects of your condition, you are now facing another horrible side effect. I know how losing your hair can leave you feeling and my heart goes out to you.
Let's pray that you see someone with a bit of grit who can make the right decision for you.
All the best, I'll be thinking of you.

Edna x

Rita said...

Jak, my thoughts are with you to-day. Hopefully they can offer some hope after this awful experience. Take Care. Hugs Rita xxx

Anonymous said...

Jak, my thoughts are with you today, give em hell gal!!!
Sometimes it needs 2 of you to get some kind of result??? I hope you get what you need and deserve. Keep your chin up and maybe we/all your followers can send vibes to help. Goog luck Jak.
Luv L xx

France said...

So sorry to hear that your have all the nasty side affects. Sending good vibes your way !

Anonymous said...

So, so sorry for your health problems. Made me cry to read about it. Will pray for you and cross my fingers for a solutiion. Love: USA

Germaine Ferrao -Lenn said...

I follow your blog, and I feel your pain, as I have been in this situation since 2007 and it wasn't until Chris (yes, my hubby too has the same name) came with me and some how the NHS world started to listen. I went private and am doing much better, so I know exactly what you are saying and how you feel! my prayers for you, keep positive and hope they can do something for you! keeping fingers crossed! Hugs always! G

Anonymous said...

You poor thing Jak, and you always come over as so bubbly and happy. Hope all goes well, and you get everything back to normal asap.
Good luck, thinking of you.
Val.

mckinkle said...

I hope you get the results you deserve today. Being trapped in the nhs system is no fun.

I can appreciate the worry you have about your hair so hopefully they will be able to sort something asap.

Keryn x

Anonymous said...

Oh Jak this is dreadful news. I hate to suggest this but perhaps you are under too much stress and first need a 'good rest of mind and body' while continuing with whatever treatment the 'wise ones' prescribe.
You will be in my thoughts and prayers until this nightmare is over. MWAAAAAAAAAAAAAAAAAAAH. Remember to be kn id to Jak!

Mary MacB

Maryann said...

Poor you. I´ve been having the exact same issues the last 40 years, and I hate to tell you this, but here in Denmark, where I live, the doctors keep telling us, that there is NOTHING that helps on it, and that´s also what I have experienced throug all these years. The only thing, that does bit of good, is some moistering creme, when the skin gets too dry and itching too bad, but you can as well use a very cheap fat lotion from the supermarket, cause it dores exactly the same as all their very expensive cremes. And when that is said, then you probably very well know, that stress DOES make it much worser, just like a bad throatinfection does, so these are the first things to always avoid, if you want it to calm down. I have learned to keep it down as much as possible, but it NEVER goes all away, that´s a fact, and as I said, the doctors here admit straight out, that they have no documantation for any of the mediin they prescripe, and they just don´t seem to work on anybody here, so relax and take it easy and get loads of sun and bath in saltrwater, that´ll make it go away for a little while, but it wll come back, when they sun is gone again, but the more sun you gets now, the longer it takes, before it comes back, if you don´t get too stressed. I´ll keep my fingers crossed for you hun, that´s for sure, as I know exactly how you feel right now, but you can do a lot to hekp it yourself.
Biiiiiiiig hugs Maryann

Ursula said...

Hello Jak, so sorry to read this awful news. You are in my thoughts and prayers and hopefully they will find the solution very soon. You keep your chin up, we are thinking of you out here. Luv, Ursula XXXX

Foxycrafts said...

So sorry to hear of your problems, Jak. Hope that you get a good result from seeing the hospital today. Fingers are well and truly crossed for you.

Love Joan x

julie said...

So sorry to hear about your problem jak ,my 13year old niece has had excema since she was a baby and until recently has started to lose her hair she has big bald patches on either side of her head and a few small ones dotted around I wonder if its all connected the doctors don't know why its happening and they she is to young for steroids so far they have given her shampoo and multivitamins.she also is back at the docs today so lets hope you both get some good news, good luck . love reading your blog so keep up the good work and keep smiling as does my niece xx

Anonymous said...

Fingers and toes crossed for you Jak,that they can do somthing to help you sort this out.

Love and hugs.
Sian xx(welsh petal)

Wilma said...

O my goodness Jak. What a horrible thing to happen. I will keep you in my prayers. My late Dad used to say he doesn't trust medication, because they give you something for your heart, then it affects you liver or you kidneys. Then you need medication for you liver or kidneys too.

Making Cards With Crafty Sue said...

Hello Jak,

Sorry to hear you probs and hope you get better results soon,

Jak I too suffer from psoriasis and have done for almost 60 years, I know what it's like for me so I feel for you, recently I started taking olive leaf tea which is an antioxident, its organic so I am hoping this will help my diabetis along with all my other ailments I've read olive leaf tea can also help you to lose weight (yeah another prob of mine) reduce cholesterol and hypertension so I will definately keep you up to date on my progress and let you know if perhaps this might be beneficial to you..in the meantime I will keep you in my thoughts and hope you find relief soon...all the best.

Lorraine said...

oh im sorry to hear this Jak but my fingers are crossed tightly for you and i hope the consultant brings only good news for you chin up all will be ok xx

Helen J said...

Fingers crossed for you Jak. My dad suffers a lot from psoriasis and my mum has FM, so I understand how debilitating they can be. Dad's ended up having to have varicose vein ops as the various lotions he's used over the years have thinned his skin so much. I remember the bathroom stinking of coal tar shampoo when I was a kid. I think the only thing that has helped his skin has been strong sunshine - he used to have a UV lamp, but now just spends lots of time in the South of France!! Good luck today x

Susan said...

Fingers are crossed for you Jak!

Kathy said...

I'll keep my fingers crossed Jak. I'm so sorry for your suffering. Perhaps today is the day something great will happen. I'll keep you in my thoughts

Hugs... Kathy

Dee said...

I feel what you must be going through. It seems new diseases and physical aches crop every day and it takes them so long to find a cure for it. For now giving drugs for temporary relief can be more harmful as you are experiencing now. You have such beautiful hair I would hate to see you lose it all but your attitude is great even though you may be suppressing your fear.Good things usually come with a good attitude so hang in there.

Anonymous said...

I wish you all the best for sorting out this problem. There must be something that's better than what you're on now. Have you done a bit of research on the internet yourself? If you make sure the site you're on is trustworthy someone might have some good tips for you. Heres hoping you get some good results soon.

Anonymous said...

So sorry for you, Jak. I hope the consultant was a bit more positive, today as far as being to help with your problem. I will keep you in my prayers>

AliceH (beemer0

Suzanne said...

Hi Jak, this is very strange because I have been seeing my doctor for the last year now with the same symptoms. My hair began falling out about three years ago and they said it would settle down after about 18 months - I had just had my son. It hasn't settled yet and I now have this horrendous itching on my scalp. They have given me shampoos and ointments and nothing seems to wotk! So, I totally sympathise with you because not only is it horrible to have your hair fall out but...the itching is absolutely awful - itchy, sore and it also gets me very depressed because there is no break with it - just constant. I hope that you get to the bottom of it and get some sort of treatment.
Hugs
Suzanne x

Gralane said...

Jak, how on earth do you keep so creative and 'up' with your problems. I do feel for you.
Good luck with better luck, if I can say that!

sallysbitz said...

Jak so sorry to hear what you are going through.
My daughter is a hairdresser and her hands are really sore and she has to see a skin specialist, I know how she complains, so what you must be feeling i cannot imagine.
My thoughts are with you xx

Rhonda from WOC said...

I can totally understand your frustration and the emotional roller coaster you are on. I was diagnosed with pustular psoriasis 38 years ago, and just this year plaque psoriasis on my legs and arms. The e psoriatic arthritis was diagnosed a few years ago. it is all quite upsetting at times. After I lost 90 percent of my hair, it came back in curly and a different shade of color...Know that I am thinking of you....PIHPanda from World of Crafters