Ilumetri (biological) - is joint pain an unknown side effect?

[martin59]

I am 63 years old and have only had psoriasis for two years. It started in my face, but after a few weeks my whole body was covered with spots, bumps and flakes. Once the diagnosis was made, the search for a remedy that would adequately combat the symptoms began.
- Skilarence gave me severe diarrhea after a few months, so I couldn't continue with it.
- Methotrexate (MTX) had little effect on my psoriasis. Because the drug can be a heavy attack on the liver and other organs, the disadvantages outweighed the benefits.

Then the biologicals came into the picture.
- Hyrimoz adalimumab (an injection every two weeks) did work a bit, but my legs especially remained full of flaky spots.
- Ilumetri Tildrakizumab (an injection every three months) has made the psoriasis spots almost completely disappear in a few months. The starting injection was at the end of March 2022 and from April 2022 the injection must be repeated every three months. The effect on the psoriasis is excellent. I barely have any flaky spots. But...

HERE COMES MY QUESTION
In May 2022 I started experiencing joint pain in varying places. It often starts at the end of the afternoon or in the evening. Sometimes in an ankle, then in a finger, sometimes a whole hand or just one toe, shoulder, knee or elbow. Sometimes it is so intense that I can hardly walk or that the pain keeps me from sleeping. The pain is almost always gone the next day and the affected joint is still a bit stiff. Almost every day there is a joint that hurts at night.

Joint pain is not a known side effect of Ilumetri, but even a rheumatologist had no logical explanation and found it suspicious that these complaints only occur after starting this biological.
Because Ilumetri is a relatively new drug, this joint pain may still be missing from the list of possible side effects. 

I am curious if there are other patients who receive Ilumetri injections and have joint complaints.

[Fred]

I started it October last year, I started straight away on a double dose 200mg and continue to do so. It has been good but I do often have problems whilst asleep, but it does seem to get better once I get moving.

They did tell me it is a slow worker and may take time to really get going so I'm hanging on in there as there isn't much else for me at the moment.

If it helps I have found the damp makes it worse and I have also noticed more pain since we have had the hot weather.

Please do keep us up to date, and welcome to Psoriasis Club by the way. 

[Kat]

Sorry I have no experience with Ilumetri. But I did want to say hello and welcome you to the forum.

Also, is it possible you have psoriatic arthritis? Many people with psoriasis also suffer from psoriatic arthritis and it can cause severe joint pain.

[Caroline]

Hello Martin,

Welcome to psoriasisclub.
I would have guessed you were 59, considering your forum name.

Me too I don’t have experience with Illumetri.

Reading your story, personally I am with Kat, and I am thinking in the direction of Psoriatic Arthritis.
What Fred did not tell you is that he himself has both psoriasis and Psoriatic Arthritis. So it seems that the PsA is coming through despite the medication.

There is quite some testing done before a biological is allowed to access the market. It is unlikely that they did not find all side effects… unlikely, not impossible.

I would say, keep a good eye on your joints. It really is very curious that the pain is gone the next day. Normally with PsA the inflammation comes more gradually, your joints will swell, and it sill stay inflamed voor some time.

Cheers,
Caroline

[Fred]

What Fred did not tell you is that he himself has both psoriasis and Psoriatic Arthritis. 

Sorry about that, I misread your post Martin and assumed you were using Ilumetri for psoriatic arthritis. It's what I am currently using on a trial at a double dose for psoriatic arthritis, but now reading what Kat and Caroline have said, you should ask to be checked out for psoriatic arthritis.

Give me psoriasis any day over psoriatic arthritis, I would happily peal chunks of skin of myself rather than put up with the pain and lack of use of my bones.

[KatT]

Hi Martin

 to the Psoriasis Club

I have psoriasis and psoriatic arthritis.  I haven't tried Ilumetri therefore can't help with that biologic.

This being said, psoriatic arthritis is more difficult to treat If this is what you have.  Did the rheumatologist order blood tests to see the levels of inflammation?  Did he take xrays of your hands and feet?

Hope your joint pain lessens.  Keep us posted 

[martin59]

Dear Fred, Kat and Caroline,

Thanks for your responses to my post. Some additional information: my treatment with Ilumetri was aimed at psoriasis complaints of the skin, not psoriatic arthritis.

If I understand correctly, Fred gets Ilumetri, and the drug does help with his skin complaints and not yet the joint pain of psoriatic arthritis.

My joint pain occurs in different places and often lasts less than a day, but it is a different place almost every day. There are no outward symptoms, no thick or red joints.
The dermatologist and the rheumatologist both say that psoriatic arthritis usually stays in the same spot for weeks. But I'll ask them about it again.

Both doctors thought it was suspicious that the complaints started after the Ilumetri injections. That is why I am curious if there are others who also use this remedy and suffer from joint pain.

To complicate my story even more: I also have celiac disease since July 2021. Perhaps joint pain is a rare side effect of Ilumetri, which occurs in conjunction with celiac disease.

[KatT]

I have read that one of the mild side effect is pain in the hands and feet.....nothing about shoulder, knee or elbow.  Have you taken your July injection?

[Fred]

If I understand correctly, Fred gets Ilumetri, and the drug does help with his skin complaints and not yet the joint pain of psoriatic arthritis.

It helps with both, you can read my progress here Ilumetri for psoriatic arthritis Fred's journey if you wish.

My joint pain occurs in different places and often lasts less than a day, but it is a different place almost every day. There are no outward symptoms, no thick or red joints.
The dermatologist and the rheumatologist both say that psoriatic arthritis usually stays in the same spot for weeks. But I'll ask them about it again.

Doesn't sound like psoriatic arthritis to me, having said that I can get times when it does move around or only last for a day but mostley it's in places I've had it before.

Both doctors thought it was suspicious that the complaints started after the Ilumetri injections. That is why I am curious if there are others who also use this remedy and suffer from joint pain.

Does sound odd and I've not found anything similar to what you describe as a side effect, unfortunately we don't have many members using it and only two others apart from me have it listed in their profile. One has never posted and the other Duncan but has only posted about a cold with Ilumetri cold and ilumetri

To complicate my story even more: I also have celiac disease since July 2021. Perhaps joint pain is a rare side effect of Ilumetri, which occurs in conjunction with celiac disease.

Could be worth asking, but again I haven't found any relation.

Good luck Martin it would be interesting to find out.

[Kat]

I can see why you are wondering if it is a side effect. It "might" be helpful with the pain moving around to keep a record of times and areas where you are experiencing joint pain along with time of injections and have that when you go to the doctor. I have found that when I can be more precise that it seems to help when talking about it to the doctor.

Hopefully your doctor(s) will figure out if it's a side effect or something different. They may have to try another biologic to see if that's what is causing it or not.

Keep us posted!