Back Into Hell

[Caroline]

Thank you people.  

Yes it has been a crazy year. I never dreamt I would get back to working full time. It was tiring and required some stress management but I did enjoy it. Can't see me getting back there any time soon though. :(

I also found my daughters......living 30 miles away. Their Dad has finally relented and given me his address and I now have updated pictures. The Girls and I are slowly re-building bridges.  

Ooh....and I just ordered some funky, shocking green crutches. I don't intend to sit around too much and get depressed this time ( I hope ). At least I know what's coming ( although I will most likely need to release a rant and a few expletives ). XXX

Ok, welcome back Brighteyes.
Let's get a bit on track, you apparantly have two daughters?  From an earlier marriage? Which means that O/H is apparantly your friend or new husband. I have  always thought that he was your hubby.
Have you yourself asked your new consultant for the why he wanted you to stop with cyclosporin? Did he know what he was doing?  What kind of trouble you would get in?
Did he discuss the why? Which blood measurements were wrong and why?
Indeed now changing to MTX doesn't solve a thing.
Did you already confront him with the results of his actions on you?

I am really feeling a bit pissed on the apparant ease with which he seems to have gotten you off this medication.
Now I am busy writing I immediately want to ask you I why you don't go for Fumaderm? It seems an option you did not try before. And I think that Jim also would want to suggest it.

Anyway, great to have you back and great that you see your daughters again.

Just to clarify.
I have a fiancé ( been together almost 10 years ) and we have an 8 year old son.
My ex-husband is the one who went AWOL with my daughters to him ( now aged 16 and 12 ).
My new Derm has not discussed anything in depth with me at all. I will be back in clinic on the 19th and I want to compile a list of questions. Any input would be appreciated.

I Will try to come up with a list of questions and I think there will be more on the forum who will join me

Thanks for your explanation on you family situation. I was a bit confused.

[Grizzly Bear]

Get better soon Brighteyes


GB

[Brighteyes]

Just re-read my past posts on here and some of them brought tears to my eyes.
It's almost as if it all happened to someone else.
I know I have to take the bull by the horns now and start asking some serious questions (i.e. taking control of my own care plan).
Have noticed that I am slowly slipping into the late night/late morning/stuck in pyjamas mode.
Well, that's going to get a dose of this......

[Brighteyes]

Awwwww Grizzly Bear,

that is so lovely.
Give us a bear hug.

XXX

[Grizzly Bear]

You're Brighty


Sorry but this is the only bear hug type picture i could find.


GB

[Brighteyes]

OH hell!!!
Sorry....just have to say.....the burn is back.
Feet are reasonably comfortable when elevated but as soon as I get up ( and the blood rushes in) I feel like I stepped into battery acid.

:(

[jiml]

Ouch that sounds nasty have you tried a support sock the type you get if you are flying to stop fluid rushing to your feet and restricts circulation I don't know if it would do any good but may be worth a try
Just a thought

[Brighteyes]

I have tried them in the past hun but to no avail.
Back to keeping a spare loaf in the freezer. Very useful ( wrapped in a tea towel) for drawing out the heat.
I have about 75% raw skin on my feet now and 3 affected nails (one almost off).
My hands have pinprick bubbles coming under the surface and my underarms & 'sensitive areas' are very red and sore.
Very worrying is the fact that I can feel teeny 'spots' under the skin on my face. Never had any problems with it on my face. Hope I don't now. Not for vanity reasons, it's just that I can keep the rest of me covered.


* And that was a party political broadcast from the Too Much Information Party*

[Caroline]

Questions for the term/New Consultant.

First a little repetition of my earlier post.
Have you yourself asked your new consultant for the why he wanted you to stop with cyclosporin?
In other words. Did he know what he was doing?  
Did he knew what kind of trouble you would get in?
Did he discuss the why? Is there something going into the wrong direction?
Which blood measurements were wrong and why?
Is there a trend in getting it worser for some reason, or have all measurement in the last years have been the same?
-  In the latter case if there is no change, why should you stop?
- I mean, it must not be just a burp of the consultant to get you off, it must be a weighted decision !
What are the real values of the measurements?
What should be the values of the measurements?
So how much are you off ? Is it a few percent or are you totally off-scale? Let him explain.

If he now wants you to change to MTX that is very weird, as this is also quite a mean drug, perhaps even worse than cyclosporin.

Did you already confront him with the results of his actions on you? Give an overview of what you have told us here on the forum.

Ask for better solutions, e.g. biologicals or.... DMF.
The last thing to me seems like an option for you to try, as it is available in the form of Fumaderm in the UK.
If the consultant resists to this.
Then ask him why, and he probably will not know why.
Or he will come with phrases as this being the last resort or whatever because it is so bad, but that is not true. There is no shown toxicity in DMF, just a few rules to follow.
Just press hem and hold in from of him that you are an equal human being as he is, and that he would also not like to be the way you are now.

pfff, I hope you're going well tomorrow Brighteyes, it was tomorrow right, your visit to the derm?

Maybe Jim, Fred, Kat or others can add to this..
good luck    We are anxious to here from you.

[jiml]

Caroline I don't think there is much I can add you have made some very good points and I agree, with your summing up of Brighteyes situation and will reinforce your words and sress again as you say that the dermatologist must give a reason for stopping the treatment and putting BRIGHTEYES back into hell.
And taking a step backwards with treatment to Methotrexate
@Brighteyes....I would suggest if it is either today or tomorrow. That you make a list of your concerns and anger at having your tolerable life taken away without there being an acceptable" plan B"
Put a list of treatments you haven't had or been offered
Ask for actual blood values
Make them realise they shouldn't treat another human this way
If it Were me Brighteyes I would be demanding answers to why he /she has done this to you .... Lay the blame squarely on them and ask where next as you can't go on in constant pain