Stelara round two

[Fred]

Fred, I hate hearing that things took a turn for the worse.  Hopefully, as others said, it's more to do with the weather.  Hope things improve for you!!!!

Thank you Kat, it is a shame when these things happen and sometimes we take it for granted and tend to almost forget we have problems. But we have to get on with it and consider our options or see if we can ride it out. I'm riding it out as I have no other option at the moment, but I will be thinking in advance for my next appointment.

Hi Fred,

I'm sorry to see you in such a predicament. Hopefully it is just a winter thing, but if not I hope that you are put on another effective therapy quickly. Too often I read of people reaching a crisis before anything substantial is done. Remember that the squeaky wheel gets the oil.

Cheers and good luck,

Bill

Thank you Bill, that's one good thing I do have here and that is a good dermatologist I can work with and she won't see me suffer.

As for the options it comes down to what they have available, Methotrexate/Acitretin/Ciclosporin are off my list as I refuse to use them. I've tried all the Bio's apart from Simponi and Cimzia and I don't think they are available here yet, but I will be asking.

We had spoken about Fumaderm but it's only on trial and I'm not sure I fit the protocol for a trial as I've had to0 many Bio's, but I may ask again. Having said that I'm still not keen on Fumderm especially reading some of the latest comments from others about the stomach problems.

Oh I'm rabbiting on now, but that just leaves a visit to your Lab or a trip to see Caroline. Decisions decisions.

[jiml]

Hi Fred I hope today has you feeling a bit better .... Is the pain any better today ? I do hope it passes quickly
Fumaderm....... don't worry about the odd cases you read about Fumaderm I can show you more successes than failures
I'm sure if you tried it you would find out for yourself.
But I have had pms from members on it that are now clear as they haven't posted I will mail you later and explain .
But don't dismiss it becausre it didn't work for one or two... Also remember people come to these forums usually to tell of problems .... Not to shout about success so the fact there aren't many Fumaderm users here doesn't mean it is t good probably just the opposite

[Fred]

Hi Fred I hope today has you feeling a bit better .... Is the pain any better today ? I do hope it passes quickly
Fumaderm....... don't worry about the odd cases you read about Fumaderm I can show you more successes than failures
I'm sure if you tried it you would find out for yourself.
But I have had pms from members on it that are now clear as they haven't posted I will mail you later and explain .
But don't dismiss it becausre it didn't work for one or two... Also remember people come to these forums usually to tell of problems .... Not to shout about success so the fact there aren't many Fumaderm users here doesn't mean it is t good probably just the opposite

No much the same Jim

Oh I know there's good and bad about everything, I also know people usually only post about problems that's why I always ask them to come back and post positive results. But like I said to you before "They come they go"

But as far as Fumderm goes I would say it's 50/50 on here going by the good and bad posts, and that puts me off a little.

But for me it's not about numbers, it's about what I read and what I feel like going for. Then it comes down to what is available to me, If I can get this lock up sorted before I go back I will stick with Stelara.  

[jiml]

Hi Fred I hope today has you feeling a bit better .... Is the pain any better today ? I do hope it passes quickly
Fumaderm....... don't worry about the odd cases you read about Fumaderm I can show you more successes than failures
I'm sure if you tried it you would find out for yourself.
But I have had pms from members on it that are now clear as they haven't posted I will mail you later and explain .
But don't dismiss it becausre it didn't work for one or two... Also remember people come to these forums usually to tell of problems .... Not to shout about success so the fact there aren't many Fumaderm users here doesn't mean it is t good probably just the opposite

No much the same Jim

Oh I know there's good and bad about everything, I also know people usually only post about problems that's why I always ask them to come back and post positive results. But like I said to you before "They come they go"

But as far as Fumderm goes I would say it's 50/50 on here going by the good and bad posts, and that puts me off a little.

But for me it's not about numbers, it's about what I read and what I feel like going for. Then it comes down to what is available to me, If I can get this lock up sorted before I go back I will stick with Stelara.  

I agree Fred stick with what has been working ... I myself hate the idea that one day I may have to move to something else ... I'm hoping it won't come to that but we never know.. I'm routing for your Stelara in the hope it's just a winter , full moooooooon thing
Chin up do diclofenac have any effect

[Fred]

do diclofenac have any effect

Don't know and aint gonna try. I keep away from anti-inflammatories as much as possible.

Paracetamol is about as far as I go, and that's just to mask the pain so I can get stuff done.

No I'll tough it out Jim till I see my dermatologist then go from there.

[jiml]

do diclofenac have any effect

Don't know and aint gonna try. I keep away from anti-inflammatories as much as possible.

Paracetamol is about as far as I go, and that's just to mask the pain so I can get stuff done.

No I'll tough it out Jim till I see my dermatologist then go from there.

I have had 2 occasions in the last 2 years (and I'm not sure what you mean by locked up) but I had been driving and felt an arm suddenly get very painful I couldn't move it up or down I had to be helped from the car the next day it was no better and very painful I went to the doctor he gave me diclofenac . After one tablet and two hours the pain was gone and didn't reappear until the next year but then it was a leg .... I had the diclofenac tablets left over took one it released my leg within a few hours .... What caused mine and what it is is irrelevant its just pointing out the effect of an antiinflamatory drug . And may be worth thinking about if the pain gets too bad  

[Fred]

I have had 2 occasions in the last 2 years (and I'm not sure what you mean by locked up) but I had been driving and felt an arm suddenly get very painful I couldn't move it up or down I had to be helped from the car the next day it was no better and very painful I went to the doctor he gave me diclofenac . After one tablet and two hours the pain was gone and didn't reappear until the next year but then it was a leg .... I had the diclofenac tablets left over took one it released my leg within a few hours .... What caused mine and what it is is irrelevant its just pointing out the effect of an antiinflamatory drug . And may be worth thinking about if the pain gets too bad  

NO NO NO NO AND NO!

When I say being locked up it's like your joints are locked in one place and if you try to move them its agony, my toes and fingers are usually where the first signs start. At the moment I cant open or close the two middle fingers of my right hand, and if I try to move my right elbow, wrist, or shoulder in any position it feels like it's being forced the wrong way.

I cant explain it much more than that really, if I leave it still it doesn't hurt much but as soon as I move or if I lay in bed on my right side it's like someone is pulling everything in the wrong direction.

Jim I've been here before and appreciate you concern but I just wanted to update this thread and not get into a debate about anti inflammatories, so please take you drugs and hugs and get down in the cellar and see if you can find YOYO he needs you more than me I'm sure      

[jiml]

Sorry Fred soooo does that mean no ?

[Fred]

Sorry Fred soooo does that mean no ?

Was I reading somewhere we can use swear words on here.

[Caroline]

Sorry Fred soooo does that mean no ?

Was I reading somewhere we can use swear words on here.

no swearing here !

Jim, you know Fred is quite stubborn. We can better leave him for now. Too bad of your joints Fred, I really am sorry for you, but don't know of a way to help you.

We have been in this discussion before you and I, and we decided that we would keep DMF as a backup for as if Stelara would fail definitely.

About fumaderm, maybe your are right with youre 50/50, I don't think so but respect your opinion.
Still there is Psorinovo. In side effects quite different from fumaderm. I don't have stomach aches, only flushes and occasionally unrestly intestines, but it is very good to live with. I still can do very much sports, one of the best of the spinning class, I can dance, I can make quite a walk before my feet will start hurting.
So I think the future still has some options open for you might things go wrong in your current situation.
In the mean time keep up the good spirit but I know your are very good in that.