Tremfya for psoriatic arthritis Fred's journey

[Fred]

Well Fred long may it continue to work as well as it can for you , do you have problems if you get in a draft as well. It's strange that the wet weather is a key to set it off, we are definitely peculiar animals.

Thank you Dave, no problems in a draft and cold weather isn't that bad either. Just the damp or wet that seems to make it worse.

It never fails to surprise me how we all talk about different ways things effect us. Some can't eat certain foods, but I've never noticed any difference in what I eat. Some of say the sun helps and some say it makes it worse.

Certainly a strange beast to treat, and I doubt any two of us have the exact same symptoms. No wonder it's difficult to treat.

[Fred]

Not looking good. 

Had a very bad night and today it has not passed. Psoriatic arthritis in my shoulders, arms, wrists and fingers have been very painful. I'm at week 6 and two weeks to go before my next shot. I had thought it was the damp weather causing the problem this past few days, but it looks like now the weather is better that Tremfya isn't going to keep the psoriatic arthritis away.

I was going to wait till my appointment in August before I updated, but this has to be the worst I have had with my upper body for a few years. My right arm is usually rubbish with any treatment, but as I'm left handed having my left arm worse than the right is not nice.

Sooooooo pissed off as it was working. 

Psoriasis score the same at 4

Psoriatic arthritis score up from 5 to 21 ................................................... Damn that is bad.

Will continue with my next shot and wait till my appointment and discuss my options. Reduce the time between shots or move to something else, but what to move to as my options are limited.

Putting the positive mode on and drinking a few extra buckets of Merlot.

Not happy.

[Caroline]

That is worrying to read Fred!
It would be a big disappointment if the Tremfya would quit so soon.
Not nice that your score is so high right now.

But indeed, try to put on the sunny hat.

But to be really honest... and not willing to spoil your fun..... but alcohol is quite bad for both the Psoriasis And the Psoriatic Arthritis.
I myself have cut down my alcohol intake to almost zero. And I must say I need less medication because of that.

Anyway keep up the spirit !

[Fred]

That is worrying to read Fred!
It would be a big disappointment if the Tremfya would quit so soon.
Not nice that your score is so high right now.

But indeed, try to put on the sunny hat.

But to be really honest... and not willing to spoil your fun..... but alcohol is quite bad for both the Psoriasis And the Psoriatic Arthritis.
I myself have cut down my alcohol intake to almost zero. And I must say I need less medication because of that.

Anyway keep up the spirit ! 

Thank you Tiger. Yes I know the old story of alcohol being bad, but let me swing it around.

#1 Too much alcohol makes psoriatic arthritis worse.

#2 Too much alcohol makes psoriatic arthritis go away.

#3 Injecting drugs help (for a while)

#4 Alcohol works every time.

Merlot time.

 

[Caroline]

That is worrying to read Fred!
It would be a big disappointment if the Tremfya would quit so soon.
Not nice that your score is so high right now.

But indeed, try to put on the sunny hat.

But to be really honest... and not willing to spoil your fun..... but alcohol is quite bad for both the Psoriasis And the Psoriatic Arthritis.
I myself have cut down my alcohol intake to almost zero. And I must say I need less medication because of that.

Anyway keep up the spirit ! 

Thank you Tiger. Yes I know the old story of alcohol being bad, but let me swing it around.

#1 Too much alcohol makes psoriatic arthritis worse.

#2 Too much alcohol makes psoriatic arthritis go away.

#3 Injecting drugs help (for a while)

#4 Alcohol works every time.

Merlot time.

 

I really understand your feelings about that. Cheers

[Wooley]

Gutted to hear this Fred, you must be so frustrated......

Here's hoping that some warmer (not damp) weather and merlot will help you in the coming weeks..... 

[Fred]

Gutted to hear this Fred, you must be so frustrated......

Here's hoping that some warmer (not damp) weather and merlot will help you in the coming weeks..... 

Thank you Wooley. I seem to be able to handle it when it's damp, but it's looking like after 6 weeks it's unable to keep the psoriatic arthritis away.

Much the same today, but trying not to get wound up about it and keep a positive attitude. Oh the Merlot helped a bit, but not a great nights sleep. Maybe I should try more this evening. 

[jiml]

Not looking good. 

Had a very bad night and today it has not passed. Psoriatic arthritis in my shoulders, arms, wrists and fingers have been very painful. I'm at week 6 and two weeks to go before my next shot. I had thought it was the damp weather causing the problem this past few days, but it looks like now the weather is better that Tremfya isn't going to keep the psoriatic arthritis away.

I was going to wait till my appointment in August before I updated, but this has to be the worst I have had with my upper body for a few years. My right arm is usually rubbish with any treatment, but as I'm left handed having my left arm worse than the right is not nice.

Sooooooo pissed off as it was working. 

Psoriasis score the same at 4

Psoriatic arthritis score up from 5 to 21 ................................................... Damn that is bad.

Will continue with my next shot and wait till my appointment and discuss my options. Reduce the time between shots or move to something else, but what to move to as my options are limited.

Putting the positive mode on and drinking a few extra buckets of Merlot.

Not happy.

damn I replied to this last night but couldn't have posted it

Sorry to hear it seems to be failing you Fred I hope they can do the shots closer together to give you longer on the tremfya as it was going well for you .
There aren't that many options open to you as they don't like you going back to a treatment once it's failed ...I hope at your next appointment they will suggest a way forward although there aren't many you haven't tried
But good luck with the quest for a long term fix

[JohnB]

Oh bugger. That is not good news at all.
Two questions; can you reduce the time period between shots? and where can you go from here?

Self medication Mmmmmm .........

[D Foster]

Sorry to hear that Fred, have you been overdoing it lately such as to much gardening .
I know that the weather does effect the sodding thing and it's a bugger.
I hope that it settles down a bit , time to put your feet up for a while.
Have a couple extra , I know that not sleeping starts to really catch up with you,it does me.
Take care and hopefully it's just a glitch.