Good morning,
Does anyone have any experience with treatment for Psoriatic Arthritis? I am going to see a rheumatologist on Friday for the possibility of having this and my oncologist told me that he needs to work closely with them. He said that a lot of the meds used to treat that condition go against what is used to treat CLL. I'm just trying to get to firsthand advice about this, so I know what kind of questions to ask at my appointment.
Chris
Thanks for the reply Jammin_Me. I had never heard of it either until I started getting read patches on my elbows and finger joints and then bad soreness in my joints. A dermatologist looked at my read patches and decided to send me to the rheumatologist.
I'll keep the forum updated as I go through this.
Chris
How strange Chris,
I did reply to you but it seems to have vanished down a rabbit hole. I also have never heard of it and had to Google. Those ‘ologists’ do like to send us on a merry go round. Dermatology doesn’t seem to be an exact science, but as I remember you have had problems previously.
I hope you get some answers quickly.
Colette
Hi Colette, I have that same problem of replies disappearing whenever I use spell check so now, I look at the spell check choice and then correct it myself.
Yes, they do send us on wild goose hunts sometimes. We'll see where the goose lands next...LOL. Also, yes, I have been seen for just psoriasis for a while, but now with the achy joints they think it is psoriatic arthritis. We'll see.
Chris
Let’s hope it’s a golden goose !
Just a random thought, but after numerous trips to Orthopaedics with bone pain that moved around it was eventually decided it was bone marrow oedema ! Something I hadn’t heard of, but rest and physiotherapy sorted it out.
Suggest you probably don’t read the rheumatologists report ! Mine had me in a complete panic until I ran through it with my GP, and it was fine.
Colette
It appears at least one of the meds for Psoriatic arthritis is a monoclonal antibody
This site, run by the med, Cosentyx company, give some good descriptions of this arthritis though the cause of the the inflammation that is a cause, there is not known a why.
I have an in-law with The Psoriatic patches on skin that seem to have flare ups over periods of some stress, not certain he has the arthritis, but he is beginning to feel the stiffness of what may be aging and a mostly sendentary job.
cosentyx.com/psoriatic-arth...
Thank you CLLady. I will check out the info on the link that you provided.
I have had the red patches for a few years now and a dermatologist told me that they will show up more when have an infection. They seem to show up more during winter months too when the air is dry. The dermatologist just associated my achy joints with it at my last visit and put in a consult with rheumatology.
Chris
My partner, 76, has had this condition for years. So far he has escaped taking any regular medication. If he gets stressed he will have attacks which tend to focus on particular joints, usually one at a time. Often in his toes (resulting in ‘sausage toe’ - a fat swollen toe). The episodes pass after a week or two but they are very painful. He has found nettle and celery tea to be helpful and has had steroid injections in one knee. He does not have CLL.
Hi Chris
I was diagnosed with psoriatic arthritis (PsA) when I had painful and swollen toes n fingers (sausage fingers), swollen ankle and knee with POSITIVE HLA B27 antigen test. No other skin or spinal issues. I was of the opinion that those were side effects from Venetoclax & Ibrutinib as no one in my family had PsA. Rheumatologist wasn’t sure.
Rheumatologist injected Cortisone into 3 finger joints and 1 toe joint to reduce swelling and pain. Also prescribed oral prednisone and celebrex initially. Later, I was managed with sulfasalazine and Otezla. After few months, rheumatologist agreed to remove Sulfasalazine due to side effects and maintained with Otezla only.
Symptoms improved gradually after I stopped all CLL medications. I’ve been feeling normal for about half a year. Think rheumatologist may agree to take me off Otezla when I next see her.
Seok
Thanks for your info Seok! That is great that the meds are working for you. I don't have any swelling, just very achy joints in my hands, arms, legs and feet. I also have read patches on my hands and arms that come and go. They seem to show up more now during winter with the dry air.
Chris
my son was diagnosed with psoriatic arthritis at 19 he is now 42 it is certainly a proper diagnosed condition. It badly affects his neck but thanks to the drugs he is prescribed it is tolerable .as with all drugs there are always side effects but he says the side effects are preferable to the pain that this condition causes . Maybe I should say that psoriasis is evident in some members of his paternal family so could be down to his genes .
I am not sure of the medication but I know that when he commenced taking it it was at the trial stage . If I can get hold of the name I will inform you .
Not sure how it effects the CLL issue .
Good luck
Christine
I'm like a broken record but I recommend you try a ketogenic diet. If this is autoimmune or inflammation related it could only help. I had something similar but much milder about 10 years ago. It all went away when I started the so-called paleo primal lifestyle. And that wasn't even a full-blown keto. But it got fixed before it worsened to the point that I needed to see a doctor about it
Hello noeagaman
Not a doctor, but Rituximab from B+R treatment removed psoriasis from my joints, did not completely remove arthritis, but can now make a fist. The drugs to resolve psoriatic arthritis advertised on US television, are monoclonal antibodies like Rituximab. Rituximab is used to treat rheumatoid arthritis. I think questioning compatibility with CLL treatment is good idea. Blessing going forward.
Hi! I started with joint swelling while on Venetoclax (started in my knee, then my ankles, toe and fingers). When I completed the last of my Venetoclax, things got worse. It was months before I was sent to a Rheumatologist. I was having trouble walking the pain was so bad. They started me on a high dose of Prednisone and tapered me off over a few months. When I got to 5mg, the swelling returned. I was put back on Prednisone with added sulfasalazine (500 mg morning and evening). Again, when I tapered off the Prednisone, the swelling/pain returned. They increased Sulfasalzine to 1000mg am and pm. I just finished with the last of the prednisone and things seem to be better. My red patches on my chest/arms are also better. I still have some joint pain/swelling in my ankles and knees, but it is manageable. No family history of arthritis and no issues prior to treatment of O+V. Hoping I don't have to be on medication forever. Good luck.
Low Platelet Count - 114,000
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Information please! Best CLL doctors in Los Angeles vicinity?
