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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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Tremfya for psoriatic arthritis Fred's journey

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Tremfya for psoriatic arthritis Fred's journey
Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,208
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#71
Wed-01-07-2020, 20:09 PM
(Wed-01-07-2020, 14:38 PM)jiml Wrote: damn I replied to this last night but couldn't have posted it Doh

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

Fat fingers again Jim  Snigger

Yes it was going well, but this is a big hit at the moment. And no she has said if I went on to Tremfya I couldn't go back to Cosentyx.  Confused

(Wed-01-07-2020, 16:40 PM)JohnB Wrote: 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 91 Mmmmmm .........

Yes John we could try a reduction in weeks, I have done that with most bio's in the past ........................ it may work.

Where do I go from here? Good question, the other options available for me are either another IL 17 or IL 23. But I have tried those in a different brand, so ................................. I'm not sure.

As for self medication: Nooooooooo Only fools and Bill do that, and don't even ask me about diet or lifestyle change.  NoNo

(Wed-01-07-2020, 18:20 PM)D Foster Wrote: 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.

I did wonder if I had done too much recently, I have been getting another veggie patch going. But I don't usualy get this much pain.  Confused

I'm going to rest up for the rest of this week and keep positive to see if I can win, but yes a good sleep would be nice. I usually sleep very well, but at the moment it's not good.

Had this damn thing for around 40 years now and it never stops popping back to remind you it's still your buddy. .................... Ha I need Merlot.
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KatT Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 5,775
Threads: 50
Joined: Sep 2019
Gender: Female
Location: Canada
Psoriasis Score: 1
Psoriatic Arthritis Score: Off the chart!
Treatment: Simponi + hydroxychloroquine + MTX
#72
Wed-01-07-2020, 20:20 PM
I'm hoping it's just a little bump in the road because you overdid it  Confused  

Do you wait for your doctor's okay to reduce the weeks or just do it?

Can the dose (not weeks) be increased?  I ask this because I was discussing with the Cosentyx person and I asked since it's not working and she said it is possible in certain circumstances (severe cases)....
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Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 67,208
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Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#73
Wed-01-07-2020, 20:33 PM
(Wed-01-07-2020, 20:20 PM)KatT Wrote: I'm hoping it's just a little bump in the road because you overdid it  Confused  

Thank you KatT, I'm keeping my fingers crossed ............................... well I would if I could cross them.  Big Grin

(Wed-01-07-2020, 20:20 PM)KatT Wrote: Do you wait for your doctor's okay to reduce the weeks or just do it?

Yes I would have to wait till I speak to her, but I'm due my next shot in a couple of weeks and then I see her before week 8 so it's something we could try.

(Wed-01-07-2020, 20:20 PM)KatT Wrote: Can the dose (not weeks) be increased?  I ask this because I was discussing with the Cosentyx person and I asked since it's not working and she said it is possible in certain circumstances (severe cases)....

Good point I did increase the dose with Stelara, that may be worth asking.  Thumb
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artemie Offline
Be careful about reading health books, you might die of a misprint

100 + Member I Just Cant Stop !
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Location: Netherlands
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Treatment: Diet started 22th july 2019
#74
Thu-02-07-2020, 11:09 AM
hi Fred, sorry to hear Tremfya not working and you are not comfortable with the pain.
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Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 67,208
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Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#75
Thu-02-07-2020, 11:26 AM
(Thu-02-07-2020, 11:09 AM)artemie Wrote: hi Fred, sorry to hear Tremfya not working and you are not comfortable with the pain.

Thank you Artemie  Smile

My shoulders seem to have calmed down a bit which is nice, and I got some decent sleep  Sleep

Wrists and hands are still bad, but I'm feeling like I can get them moving again.

I will have to check my psoriatic arthritis score and see how it's doing.
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Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 67,208
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#76
Thu-02-07-2020, 11:37 AM
Note for reference: 02 July 20.

I'm pleased to say that the pain is easing in my shoulders and I managed to get some decent sleep.

The psoriatic arthritis score shot up to 21, but it's dropped down to 14.

I'm not sure what is going on and the only way I can explain it is that the psoriatic arthritis feels like it's draining away through my hands. My hands are still very painful, but I'm getting some movement back.

I can only assume I had some sort of psoriatic arthritis flare, but I've never experienced so much pain to come on so quick.

Hopefully it will go as quick as it came.
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D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,290
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Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#77
Thu-02-07-2020, 12:55 PM
I will keep my fingers crossed for you Fred , just take it easy and let Mrs Fred do the work under supervision. Tongue
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#78
Thu-02-07-2020, 13:32 PM
I'm glad it's improving Fred and you managed to get some decent sleep Thumb let's hope it continues to improve and leaves your hands soon and hope it was a temporary blip (they happen)
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Fred Offline Author
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,208
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#79
Thu-02-07-2020, 15:14 PM
(Thu-02-07-2020, 12:55 PM)D Foster Wrote: I will keep my fingers crossed for you Fred , just take it easy and let Mrs Fred do the work under supervision. Tongue

Thank you Dave. No chance of that she has a wonky shoulder too. Big Grin

(Thu-02-07-2020, 13:32 PM)jiml Wrote: I'm glad it's improving Fred and you managed to get some decent sleep  Thumb let's hope it continues to improve and leaves your hands soon and  hope it was a temporary blip (they happen)

Thank you Jim, I'm not able to cross my fingers yet but I'm willing it to go away.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#80
Thu-02-07-2020, 18:58 PM
I'll send healing vibes  Thumb that should do the trick buddy
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