Kat's journey with laser therapy (XTRAC)

[Fred]

Good luck with the continuation Kat.

[Kat]

Thanks guys!

[Kat]

Still going twice per week. I'm schedule through November. Not much to report, definitely a bit better than when I started but still not there.

Have a rheumatologist appointment on Monday so we'll see what he has to say. The laser therapy was basically to hold me over until I had this appointment so I could get more information first hand from him as to what he would recommend. But we shall see how it goes....

[KatT]

How about combining treatments?

[Kat]

How about combining treatments?

That's a possibility. The questions I have for the rheumatologist involve determining whether or not I have psoriatic arthritis. I need some clarification on that.

The laser therapy won't help with that of course, but even if it helps with the skin, laser therapy is ongoing. Once clear, you can only expect to stay that way for a short time (possibly 6 months to a year on average but people vary so there is no set time really) and then the psoriasis will usually be back and you have to start over again. Also, the laser therapy is done twice per week, and the drive for me is a long one since we live out in the country. So I'm not certain that I want to do laser therapy long term if I can find something else that works on my skin.

But.... it is definitely something I may have to consider.

The dermatologist suggested going with a TNF inhibitor, however I have some issues that concerned me (not enough to rule them out but enough to want to check with other doctors before considering) Also with the rheumatologist suggesting I was showing early signs of psoriatic arthritis, the dermatologist didn't want to prescribe another biologic without consulting with my rheumatologist. I informed her I had an appointment in November so we agreed to go with the laser therapy in the meantime. So that's where I am currently.

[Kat]

Okay, update time.

I will have to say that I thought things were improving.  But this past week things seem to be sliding backwards a bit.  I've had a couple new spots appear and along the hairline seems a bit worse this week, still perhaps a bit better than when I started the laser therapy though.  I've reached the point where I should be seeing improvement.  I will continue through this month but if things don't improve, then I'm going to call it a fail.

Saw the rheumatologist today.  He said in his opinion I have early signs of psoriatic arthritis and that if I ignore those signs and just try to treat the skin, it would be a mistake.  So, he recommends that I try Humira.

I'm not really wanting to try a TNF inhibitor.  Honestly they scare me.  He said he cannot say to ignore their warnings, but in all his years treating people with biologics, he knows of only a couple of cases where the patients were diagnosed with skin cancer (and had to have spots removed) but he knew one of those had a history of sun worshipping so couldn't say that it wouldn't have occurred anyway.  He said although they list heart issues, he has never treated anyone to his knowledge that ever had those issues but that of course he wasn't saying it couldn't be a problem.  The warnings are there for a reason.  (As you and I know, mostly to protect the company from lawsuits, but I'm sure they don't want to list anything they don't feel they have to)  So.... I told him I would discuss it with my other doctors (primary, heart and pulmonologist) before making a decision.  Since my insurance will change first of the year, we both agreed that it would be best to hold off to then anyway as I would barely get approval before my insurance changed and treatment could be interrupted while getting approval from my new insurance.  (So as not to confuse anyone, we live in the US.  Although  insurance is renewed every year, usually the coverage doesn't change but this year it will for us, not going into who, what, where, why as it's boring and you don't really care    but didn't want you all to think insurance changes every year here for everyone)

Basically nothing new to report.  I'll let you know near the end of the month if the laser treatments start to improve anything or if I'm done with them.  And then we'll see what the new year brings as far as other treatments go.

Edit to clarify: I have some issues that make me not want to try a TNF inhibitor. I'm not sure if I should be worried about them or not which is why I want to check with my other doctors. If I were totally healthy, I'd probably feel quite a bit different about it. I didn't want it to sound like I think TNF inhibitors are bad, I simply don't know if it's something I should try.

[jiml]

It's a shame things aren't really getting any better on the laser treatment Kat and it is as you yourself say a very temporary fix if it works

As for the tnf inhibitor Humira I know there are warnings on the box and there possibly have been issues, but we do know that where you live in America the drug companies have to be mega careful and spell out even the slightest risk. As if it isn't mentioned and something happens then it costs big bucks over there with compensation claims

But it's like every drug we are offered we have to weigh up the risk versus the benefit  ...now if you feel the risk is worse than the disease then stick with the disease I say (I was prepared to when I gave up methotrexate) and keep looking for something you feel more suitable

But do have a word with your primary doctor and your heart people and ask them and yourself would it still be on the market after so many years if it was a major risk

I wish you luck with your quest for clearance and hope the new year brings you a treatment you can be happy with

[KatT]

All biologics have pretty much the same warnings.

I agree with Jim, risk vs benefits.  Your doctor should know with your other issues if it's worth the risk or not and send you for all the necessary tests.

You definitely need to treat the PSA early on!

Did he recommend anything else?

[Kat]

Thanks Jim and KatT


@KatT - The way he explained it is that although all the biologics have some of the same warnings such as increased infections, the TNF inhibitors do have the most warnings adding heart failure and cancers to the list. He basically agreed with the dermatologist that as far as biologics go, he would recommend a TNF inhibitor as the next logical choice (since I've tried Stelara, Cosentyx and Taltz already) He did say that if I wanted to not go that route we could look at other options, one basically being that if the dermatologist finds something that works for the skin, depending on what it is, he could prescribe methotrexate for the psoriatic arthritis. I'm not really into trying that either (I know MTX has worked well for some, but I have read the experiences and thoughts of others here over the past few years and can't say it's something I want to try) So I told him I'd talk to my heart doctor and pulmonologist and see what they think about Humira. If they think I'm a higher risk than the average person on a TNF inhibitor, then I'll decline as I won't think it's worth the chance.

I'm not in a super bad place right now. My ears are doing fairly well, the scalp about the same as usual and those are my problem areas. I'm honestly beginning to think my scalp will never be totally clear. I got close while on Acitretin. However the dermatologist doesn't really want to go "backwards" to that (yes I know, she means the treatment is backwards in her opinion as she favors biologics. It was my first dermatologist in the same office that had me on the Acitretin... long story) Plus, the Acitretin although cheaper than the biologics overall, cost me MORE out of pocket than the biologics! If I recall it was $200 to $300 per month out of pocket which isn't something I want to do long term. One of the reasons I asked to go off of it once I felt things were manageable, however there were other reasons as well.

Anyway, hopefully the laser therapy is helping more than I think. At least I'm in an "okay but not great" place but I know from experience it can take a quick turn downhill fast so that's one reason I don't just rule out anything that might be helping. So for now, I'll keep up the laser therapy while I'm checking into Humira as an option. Once the new year and new insurance rolls around, decisions will need to be made.

[Fred]

As you have tried the top 3 of the IL treatments Kat a TNF could be just what you need. I found they were great, but I had to stop using them as I had a reaction to the. (that doesn't mean you will and Humira and Enbrel have a good track record)

If you would still prefer to try another IL you could ask about:

Kyntheum / Siliq (brodalumab)

Ilumetri / Ilumya (tildrakizumab)

Skyrizi (risankizumab)

Try the search on here for the ones you are interested in, it may help.

Fred.