Taltz - Kat's journey continues

[Kat]

No surprise but my Taltz journey is coming to an end.

The dermatologist agrees that it is not working for me. I just received my last loading dose yesterday and unless I hear otherwise I am suppose to take it on September 25 when it's due (in case it's helping a little bit, although I think it's more of a you already have that dose so finish it off)

The dermatologist wants to talk to the rheumatologist to determine which direction to proceed. She did offer me laser treatments in the meantime which I declined (twice a week driving to their office) although that's an option if I change my mind.

The nurse who handles the biologics spoke with me in depth after my appointment. She was very informative and had just talked to their Taltz representative. They are aware of the issues people have with Taltz (stinging injection, injection site rashes, etc) but he was honest and admitted that they also know if it works people will accept a bit of inconvenience. And he's right on that one, but wish they'd work to make that injection a bit more friendly.

She also mentioned a conference she had attended that had a well respected rheumatologist speaker. He said it can be difficult to diagnose psoriatic arthritis. It makes me wonder, I mean I'm straight forward and tell them that I have not received a diagnosis of psoriatic arthritis that the doctor said some of my symptoms point towards POSSIBLY the start of psoriatic arthritis. So if someone who "may" have psoriatic arthritis claims it as fact (or is misdiagnosed) I wonder how that skews the mind of doctors when treatments don't work for that person. Or maybe even some of the trials. There isn't a test for psoriatic arthritis after all..... Oops sorry my mind is wandering, back on topic...

The nurse suggested going to TNF's either Humira or Enbrel. However the warnings on those are a bit harsher and I wasn't a fan. Although I haven't had any significant heart problems, I do have some issues so we ruled those out. I told her I'd be happy to check with my heart doctor to make certain they didn't think there would be an issue but she felt we should forget those.

So that leaves IL-23's. Tremfya, Ilumya and Skyrizi. None are currently prescribed for psoriatic arthritis, however she said they've had patients claim that some of the biologics that aren't normally prescribed for psoriatic arthritis has helped them with it anyway and remember, I am not even certain that I have psoriatic arthritis only that the rheumatologist said when I was on Cosentyx if they ever wanted to change it to let him know, which I've been doing.

But they are suppose to talk to the rheumatologist next week and get back to me. They may decide to go another route, we'll see.

Hopefully the next direction works, the psoriasis is down in my ears again which is never any fun.

[Caroline]

Tremfya is busy being researched for Psoriatic Arthritis, they are close to registration. So that might be a direction.

Psoriatic Arthritis is difficult to diagnose. They say:
- bad nails..
- sore finger joints
- it often seems to start in the tendons, think of the Achilles
- infection of the small joints in your feet
- people that have it very bad, can also have it in knees and hips,

Perhaps Fred can add to this.

P.s. too bad that Taltz didn’t do it for you..

[Kat]

Tremfya is busy being researched for Psoriatic Arthritis, they are close to registration. So that might be a direction.

Psoriatic Arthritis is difficult to diagnose. They say:
- bad nails..
- sore finger joints
- it often seems to start in the tendons, think of the Achilles
- infection of the small joints in your feet
- people that have it very bad, can also have it in knees and hips,

Perhaps Fred can add to this.

P.s. too bad that Taltz didn’t do it for you.. 

And the Achilles is where my pain is located. My nails have ridges but I think are more associated with aging. I do have sore finger joints (pretty sure it's arthritis however might be osteo)

Knees are bad but those are most definitely osteo arthritis!

I think the rheumatologist is trying to be on the safe side. My ankles get very stiff and loosen up with movement whereas my knees hurt but aren't stiff every single time they've been inactive for 5 minutes like the ankles do. Anyway, not sure what all he based it on as it's been a fairly new discussion and one that I've only had once at the end of my appointment. I will have quite a few questions for him next time!

[Fred]

Much the same as Caroline said apart from it also can make your toes go like radishes and it can also lock you up. When psoriatic arthritis gets going it can make you no longer able to move, yes I have been there and it is not nice.

Also what Caroline said about Tremfya Tremfya going after psoriatic arthritis Im keeping my eye on that one as I think it will be my next choice. I'm just not happy with what I am seeing our members saying about Taltz (no not just you Kat) and it's enough to make me want to skip it.

No offence but "rheumatologists" don't have a clue when it comes to psoriatic arthritis and again it is not just me saying this, I am also listening to our members. But yes do ask your questions it is how we get the treatment we deserve by asking.

My opinion is that there is no one treatment that can help with psoriasis and psoriatic arthritis, it's getting there but none of us are clear of both. We have to choose which one is the most important and for me it is psoriatic arthritis.

Don't take this the wrong way, but you don't need a diagnoses for psoriatic arthritis if you already have psoriasis (which is usually the case) you will know when you have it as it will start to give you pain, enlarged red joints, followed by everything just locking up and you can no longer move. Most luckily don't get to that stage, but I have been there and I will happily come around and shove your rheumatologists head down the toilet.

Sorry I am getting off my soap box. I am sorry to hear it has not worked for you Kat, it just goes to prove that we are still a very long way from ridding us all of psoriasis and psoriatic arthritis.

If I was you I would go for Tremfya, but it has to be your choice and you know we are here to back you up.

[Kat]

Much the same as Caroline said apart from it also can make your toes go like radishes and it can also lock you up. When psoriatic arthritis gets going it can make you no longer able to move, yes I have been there and it is not nice.

Also what Caroline said about Tremfya Tremfya going after psoriatic arthritis Im keeping my eye on that one as I think it will be my next choice. I'm just not happy with what I am seeing our members saying about Taltz (no not just you Kat) and it's enough to make me want to skip it.

No offence but "rheumatologists" don't have a clue when it comes to psoriatic arthritis and again it is not just me saying this, I am also listening to our members. But yes do ask your questions it is how we get the treatment we deserve by asking.

My opinion is that there is no one treatment that can help with psoriasis and psoriatic arthritis, it's getting there but none of us are clear of both. We have to choose which one is the most important and for me it is psoriatic arthritis.

Don't take this the wrong way, but you don't need a diagnoses for psoriatic arthritis if you already have psoriasis (which is usually the case) you will know when you have it as it will start to give you pain, enlarged red joints, followed by everything just locking up and you can no longer move. Most luckily don't get to that stage, but I have been there and I will happily come around and shove your rheumatologists head down the toilet.

Sorry I am getting off my soap box. I am sorry to hear it has not worked for you Kat, it just goes to prove that we are still a very long way from ridding us all of psoriasis and psoriatic arthritis.

If I was you I would go for Tremfya, but it has to be your choice and you know we are here to back you up.

I don't have your same feeling towards rheumatologists as I quite like mine.  I feel he explains things well and since a high percentage (about 30 per cent according to a reputable site I just looked at) of psoriasis sufferers become afflicted with psoriatic arthritis, I think it makes sense to be alert and cautious as I DON'T want joints that lock up (mine are bad enough as they are!)  I'm saying this based on your statement of "if you have it you will know" which would mean I don't know so don't have psoriatic arthritis so shouldn't worry about it unless it happens.  But I'd actually rather be overly cautious and catch it early and prevent as much damage as possible since I'm working hard right now to just be mobile.  So if I'm showing early signs, I'm going to pay attention!

So I can't agree that "rheumatologists" don't have a clue when it comes to psoriatic arthritis as I am sure that some do not just as I am certain that some in fact do know quite a bit about it.  I'm sure some can diagnose with certainty when a person is badly afflicted, just as I'm sure that early signs are not as easy to determine the exact cause and are often misdiagnosed.  Doctors are not infallible but I feel I have received some excellent treatment so maybe that's why I feel a tad defensive here. 

And I'm not trying to change your mind, you know I believe we are all entitled to our opinions, I am simply stating mine. 

[Fred]

 

And I'm not trying to change your mind, you know I believe we are all entitled to our opinions, I am simply stating mine. 

You won't, but that is what this forum is all about. We share our opinions, but still remain friends. 

The figures on how many will get psoriatic arthritis is not an easy one as not all studies agree, that is why I put this on our homepage:

Quote:

---

There are different figures about how many people will go on to also get psoriatic arthritis, but it's around a quarter of us that will suddenly get struck.

Also it effects people in different ways. When I said "You will know when you have it" is probably not a good way of putting it, I didn't know what it was at first but sure as hell do now. So yes you do need a diagnoses, and maybe ignore what Fred says late in the evening. 

Good luck Kat, I look forward to a positive outcome soon. 

[Kat]

Dermatologist called.

The Rheumatologist wants to try Cimzia. Although I do not have congestive heart failure, I told her (same as I told her nurse) that I do have a heart doctor and also just wore a heart monitor last month because my neurologist thinks my heart changes rhythm throughout the day (arrhythmias). Since I wasn't immediately notified of the test results, there wasn't a major issue however I asked if I should check to see if there was any issue with me trying a TNF inhibitor. She said we'd rule those out for now.

She also said that our options were getting smaller. So I agreed to try the lazer light therapy to at least see if it helps the skin. I see the rheumatologist in November so we'll see how it all goes.

On a bright note, I'll be able to see how this lazer stuff works for me I guess. Dreading the twice weekly trips to the doctor though, I already have enough doctor visits without adding those.

[Caroline]

But doesn’t your heart rythm always change during the day? At least mine does.

Would at least be interesting to see the effects of laser therapy. I don’t understand the idea behind it.

Annoying that options are diminishing, gives an unhappy feeling.

[Kat]

But doesn’t your heart rythm always change during the day? At least mine does. 

Would at least be interesting to see the effects of laser therapy. I don’t understand the idea behind it.

Annoying that options are diminishing, gives an unhappy feeling.

I guess there are changes and then there are "CHANGES"!

Actually I'm not sure and my guess is that the two days wearing the monitored showed nothing or I would have received a call. It has to do with some lightheaded stuff going on. At first it was ear crystals and then he said he thought it could be something with my heart rhythm, he said sometimes it's just tweaking medication and other times it's due to an issue.

According to the dermatologist, the lazer therapy is much better for scalp than just light therapy as they can direct it to the psoriasis itself whereas with hair covering it's hard to the light therapy to reach those areas.

I don't expect it to work honestly BUT... when she gave me the topical (Talconex) to use while we were waiting for insurance to approve Stelara back when I had that big flare, I told her the last topical they gave me didn't work and I will admit the Talconex helped a lot! It still helps a little with itching if I use it, but I seem to be at the stuck place I can't get past. Anyway I didn't think it would help and yet it did so I hope I am just as wrong now and the lazer therapy helps.

Of course even if it does then there's that threat of psoriatic arthritis, which I will get more info on in November when I have that discussion. I want clarification on "do I have" vs "maybe I have". It may not be a definitive answer yet, but I need a better one than I currently have. I don't know how much emphasis at this time the medication needs to be aimed towards it honestly. And if the lazer therapy doesn't help with the skin, then I'm going to need to keep trying till I find what works, but perhaps there is too much worry at this moment on getting one that helps with psoriatic arthritis. Even the nurse said some people have good results with meds that although they aren't prescribed for more than the skin ailment, patients have said it's help with their arthritis too.

[jiml]

I hope the lazer therapy is successful and it's well worth trying,as you say there's nothing to lose as the current treatment isn't doing anything for you
Shame about the inconvenience of travelling to the doctor's twice a week though

As for the arthritis I hope the rheumatologists finds something to help with that next month