Swelling of the Toe and some psa questions

[Steven S]

Hi everybody i am Steven 31 and diagnosed with psa in late may. Im having ongoing tendons problems still, but im trying my first biological humira (hyrimoz) buttt my toe is still swelling, I had it before i know its dactylitis. But its a sign that the biological isn't working properly right? 

Im having a meet with my rheum in 2 weeks, want to try a different biological, i think cosentyx cause im mostly having irritation en pain around the attachment of the tendons in my elbow en knee for years now, really bad with walking etc can't walk long. And it  I was wondering if guys or girls;  might have suggestions on this part? On which biological might work regarding tendon issues.

Im doing fysio as well it helps a bit but it won't make it completely better. Still figuring a lot of stuff out, so feel free to respond if you have something on this matter!

Thank you!

[Caroline]

Hello Steven,

Welcome to psoriasisclub.

Tendon problems seem to be quite common with psa. The swelling of your toe is no good signal.

And what we see is that Humira is not the best way to treat psa, overall it is used as the first biological to treat more severe psoriasis.

There is an overview of all treatments, and what they are aiming for,  in Psoriasis In The News

Didn’t they give you MTX? That is the most common and rather senseless reflex of most rheumatologists..

There are several over here in the forum who have Psoriatic Arthritis and who may have tips for you.

Cheers,
Caroline

[Fred]

Unfortunately Stephen it's difficult to say which is the best as some bio's work great for some but not for others. It's all about trying them to find the one that works best for you.

I did do well with Cosentyx for psoriatic arthritis (about 3.5 years) so I would say it would be a good one for you to try.

As for physio, I don't know of any members that have had it for psoriatic arthritis but it will be interesting to see if it does help.

Good luck, it's a challenge to keep on top of psoriatic arthritis but once you get it under control life is good again. 

Don't hesitate to start other threads if you have any questions or want to share your journey.

Welcome to Psoriasis Club by the way. 

Regards.

Fred.

[Forest Walker]

Welcome, Steven.  

Is your fysio working toward building strength in the muscles supporting the affected joints?  It would make sense to have the joints supported by the best tone the muscles nearby can achieve.  Or perhaps fysio focuses only on the tendons?

It would seem your PsA is not responding to Humira or to this current dosage of Humira.  It is usually given every other week, but some people take it weekly, and some people have a higher dosage (I think).  Fortunately, there are several options for medication available to try.  This club has excellent information on the range of available medications, treatments for us.  

You found a good place to find information and support.  I think your rheum may be impressed by your questions at your upcoming appointment, given all you research here at Psoriasis Club.  

Good luck.

[Kat]

Welcome!

Psoriasis and psoriasis arthritis are definitely not one of those diseases where there is a perfect treatment. It can take a few tries to find what works, and then sometimes after working ... it no longer does and then you might need to find a new one. Some members here have had great results and been on one treatment for years, while others have had to switch around multiple times.

I think physio is helpful to a point. It's always good to know how to stretch out those tight tendons.

My treatments so far have more been centered around psoriasis so I don't have any recommendations for you. But there's a ton of info here on different treatments and always feel free to ask questions.

Again, welcome!

[Turnedlight]

Hi Steven, welcome to the club!

With biologicals you just have to try them, they seem to work differently for different people.
My own experience with Humira was that it didn’t do anything at all.
My psa symptoms are to do with the tendons too - especially my ankle which is swollen. I have previously had plantar fasciitis and carpal tunnel syndrome which are apparently linked to psa.
Your rheumatologist will move you on when they can see it’s not working, and in my experience they don’t mind discussing which one you want to try.

Hope you get one that suits you soon, and hope you like it here!

[jiml]

Hi Steven and a big welcome to the club, and even if we don't have all the answers, to which treatment is best, as it's not possible to know what will work for you. As we are all different
I'm sorry to hear that humira is not working for you, although reading other experiences here I'm not surprised.
You are hoping to get cosentyx next again from what I read it's a great drug for psoriasis and not too bad for psa,

Good luck at your next rheumatology appointment and hope you get some relief ...
A quick question about previous treatment, have you tried any treatments other than biologics? I am myself on Skilarence (Dimethyl fumerate)  which has held my psoriasis and psa at bay for ten years

[Steven S]

Hi all, thank you for all the nice responses.

To answer Carolines question : No they didn't give me MTX but they brought it up as a possibility during earlier consults. But i already searched a lot on that matter and declined because i thought that it wouldnt help me. The stories weren't positive either haha.

I will tell you what I've done so far  

My route was as following. At first 2 years ago in september 21 i got the tennis elbow pain in the tendon, but at fist i thought it was due to my work on the computer. Which is kind of logical. Then in february 22 i got pain in the inside of my knee on the back the biceps femoris, real nasty place, but then i thought it was due to my running. So i never even thought about a possibility of an illness at first.

In january 22 i got a sudden outbreak of psoriasis, psoriasis guttata the dermatologist told me. It was quite bad and aggressive , and until that time I've never had this so i didn't really understand it as well. I did 20+ light treatment for that.

Then in april the swollen toe  for the first time ( dactylitis) and then also in april 22, i got the achilles tendon pain. That's when i finally thought this is not normal, and kind of stumbled on psa, and had like almost all of the symptoms. Then in may the diagnosis.

But then first i had to try the cheapest drugs at the rheum, which is the normal route i understand now. So sulfasalazine and nsaids 90 mg painkillers. But it didn't do nothing. They then did an ultrasound on my knee arm and all the other places but they couldn't see anything? I was really surprised by that, because i had a lot of pain.

So i really had to press the rheum to undertake more action, cause she wasn't willing to subscribe biologicals otherwise. And they were talking about fibromyalgia and stuff already which i found nonsens. I didn't agree so i pushed (respectfully) to take other actions, so she ordered a scintigraphy.

And then they could see degeneration in the bones of my shoulders and enthesopathy around both my knees. After that she told me that the shoulders wasn't normal for my age so that must be the PsA. Then i could start with the biologics. So kind of glad about all that, cause otherwise I wouldn't have gotten any biologics im sure. And would be o maybe fibromyalgia case. And looking back on that kind of disturbing that otherwise i probably would have attained a lot more damage to my bones in the coming years.

I also did fysio during this time for a year but i found out that i could do exercises and make the leg stronger to a certain point but never fully recover. And had to watch out with the overload which I've had for like 10 times or something. And when i reached that 2 months of training where gone and you have to start over, which was kind of demotivating as well after a year haha.

And i noticed that when i did too much, walking or fysio excersises with my leg i got the overload of the tendon or entheses around the knee. And when i reached that point i had a lot of pain for like 9/10 days and couldn't walk or do anything. Even while resting i had constant pain.

So my view is maybe that my elbow and knee are still kind of chronic on the entheses part cause i wasn't on medication at that time and i overloaded it many times when i didn't knew what it was. And now its way harder to recover from that i feel.  So i hope the biologcials in combination with fysio will do the trick. For instance my achilles didn't become chronic, cause i was on medication at that time. 

So after each exercise now at the fysio i take 2/3 days rest. Cause I've learned that's better, also read here that its better to do light excersises and more of them then hard ones. From my personal experience  that makes senses cause i got the overload otherwise if i did to much.

And yes i heard about the DMF as well and its something to consider as well if the biologics won't work. I don't know if skilarence is easy attainable in the Netherlands which is where im from. But im willing to try everything. Even the black market i told the rheum nurse   she wasn't to happy about that but hey give me something that works rigghhtt. 

But from the articles I've read cosentyx would be good for resolving entheses so i was kind of aiming on that.


Thank you for all your responses its really helpful, and it is personally nice for me to talk with people who (have) experience the same difficulties or obstacles

So feel free to respond if you have tips or anything. Or maybe recognize things. Or suggestions to take an other route or something.  I take everything in consideration and Im writing a lot of questions for my next appointment.

[Fred]

And yes i heard about the DMF as well and its something to consider as well if the biologics won't work. I don't know if skilarence is easy attainable in the Netherlands which is where im from.

I'm sure Caroline will be able to tell you more, but my understanding is that you should be able to get Psorinovo which I think is the better form of DMF.

[Caroline]

And yes i heard about the DMF as well and its something to consider as well if the biologics won't work. I don't know if skilarence is easy attainable in the Netherlands which is where im from.

I'm sure Caroline will be able to tell you more, but my understanding is that you should be able to get Psorinovo which I think is the better form of DMF.

Indeed adding to that. It is easy to get DMF in the Netherlands. Probably the Rheum will not prescribe it, as they don’t have any knowledge of it, but the Derm certainly will. (And to my opinion, it doesn’t matter who is prescibing it).
If….. and only If.. you would want to try it, you will have to start with Skilarence. Only if the side-effects, it is kind of irritating for the intestines, are too much, you can request to get Psorinovo, which is slow release, so the irritation is much less.