8 years ago I started with Humira, then Embral, and now Cosentyx.
All worked well, till they didn’t.
Now it seems time to move on.
I have had back issues just getting worse, and increased stiffening when I wake up. In addition my hands which had been fine, are now getting stiff at times.
Terrified of course to start another.
What do you think is next on the list. My next appt I’d the first week of August. I’m afraid we are getting down to few options.
1 Like
I think the options are opening up for you with the increase in different JAK inhibitors though. So do have some considerable hope.
2 Likes
Don’t worry yet. I’ve been on max, Embrel, Humira, Remacaide, Symponi, Cosyntex until last May. Now Stelara. I was diagnosed 12 years ago. Have 3 out of the 5 strains of psa. Remacaide Cosentyx worked the longest. Hang in there. We have more meds and combos out there.
1 Like
I have been on Humira (which worked for about a year), Stelera ( didn’t work), Remicade (didn’t work) and then Xeljanz which was the best, worked until I got Lymphoma last November!
I am currently not on Biologics. Taking Ortezla and low dose prednisone ( not the best but out of options 🥲)
Hope you feel better.
Bern, thank you. I’m curious what are the 5 strains of PSA?
Oh I, sorry is one of the side effects ofXaljanz Lymphoma?
I will have to research those before my appt. Thank you!
Xeljanz gave me my quality of life back although it was short lived ( 2 years). Xeljanz and other Biologics can cause Lymphoma, BUT also having inflammation, PSA can put us at a higher risk of developing certain Cancers. I have a rare non Hodgkins Lymphoma ( may have been caused by all the Biologics OR PSA)…will never know but I had to discontinue all Biologics because of risk of the Lymphoma progressing! It all sucks!🥲
If you google it there are 5 classifications of PsA, mainly explaining where in the body it arises, its varying patterns and varying levels of activity. Most of us have a couple of types at least usually.
Google National Psoriasis Foundation. America. It has lots of information there.
Yes I know now, it’s been so long that I researched this disease. My Dr. just goes thru the motions and never diagnoses anything else no matter how many body parts break down. When it started going in my back years later, I just figured it was age then I read how PSA can affect the back.
I will thank you!
Sadly it doesn’t really matter which bit next goes as PsA can affect so much of our bodies sadly, internal organs too. Presently it’s said PsA can affect 68 to 72 joints in the body, that of course includes the spine also. I’ve never stopped researching this disease and learning more about it, mostly because they keep bringing out new meds which fascinates me. But I do the research, I don’t rely on my rather good rheumy to do it for me. It helps at appts as we then have decent discussions about what happening in the reseach world for PsA. But it also does something else - it permits me to feel fully engaged in my treatment and far more confident about meds too. And more confident to hold my hand up with the varying issues that might arise and get help sooner rather than later.
This is truly an awful disease but my research and interest helps to feel I’m more in control of things really and it stops that crippling fear of the unknown. Whether it’s true or not that gives me the sense that ‘I’ve got this’ and that feeling helps a lot.
1 Like
And helps to lessen the feeling of feeling victimised too.
1 Like
Absolutely! Attitude is so important.
“As you travel down life’s pathway may this ever be your goal,
keep your eye upon the donut and not upon the hole.” Anonymous
2 Likes
Oh yes I know. I obsessively researched everything for years, and everytime I expressed a concern to my physician, perhaps asking for a certain test, or wanting to know the reason behind something, he gave me bare minimum information, never using any terms our diagnosis. For years one of my main complaints has been lower leg weakness. I cannot walk far or up stairs. His Nurse PC said, “hmm, I never heard of that” and although it is documented, nothing has ever been done or suggested. I just figured it had nothing to do with it. I’ve been going to him for years, a serious quit man well respected in the industry. If we are not working to try a new Biologic, it’s the same routine every time I see him. He does not want to “ muddy the waters” with trying too many different things which is great, but I want to know what is going on and why. When I first started, my biggest problem was my feet. I could not imagine the pain… I would come out of a grocery store for example and cry in my car as it was a level 10- the tops of my feet were stabbing pain. I would take some naproxen and wait to be able to drive home.I now know or guess it is because of the tender tendons but he never once explained the pain and swelling. I worked full time up till this year and a big part of my life involved outside sales. I would carry a cooler in my car to place ice packs on my feet on those days. I have learned more on my own but wonder if I’m missing out on treatments as anything remotely outside his field of expertise and I’m sent off to another Dr. often the cause has to do with it being an outcome of my disease. The depression and anxiety due to working and constant pain and exhaustion has caused level 10 anxiety and depression for years, and aside from work, barely left the house for years. I found a therapist on my own for mental health, a PT on my own recently for physical health, and support groups online. Sure I can go to a new Dr. but none are rated as highly in our area and he is tied too a large renown hospital in our area. If he is one of the best, I so worry about a new Dr.
1 Like
Welcome to be your own advocate club! My husband has been officially designated my caregiver, and he is my advocate, he is research oriented and well versed in scientific lingo. As well as PSA I have kidney disease and have Just recently been diagnosed with breast cancer. In my opinion these have stemmed from medications used to treat my PSA and hypertension and drs negligence. So we battle on.
1 Like
I know it is daunting to even think about changing Dr’s. I will just mention my experiences to give you something to ponder over. I was seeing a Rhuematologist and it was the same routine every visit. Next to no discussion on my condition or meds. All he would do was ask me to put my hands on his desk so he could look at them. In and out within 5 minutes. He moved and recommended a new to the area Rhuemy who kept on telling I was all good and it was only OA even though I felt awful. I had been diagnosed with PsA by the previous Rhuemy after having sausage toes which apparently is a way of diagnosing PsA. I went to another GP and got a new referral for one of the best Rhuemy’s in a major city. Then I became so ill with Colitis which was either caused by PsA or the meds. I had become too sick to live on my own and had to go and live with my son and his young family. I had to find a new Rheumy and a new GP. Tried 2 GP’s and on the 3rd one got lucky and found an excellent primary care doctor. Went on to facebook and asked if any one had a good Rheumy
Got a referral and my GP and discovered that she trained at the same hospital and time as the new Rhuemy. Knowing each other has been helpful. He is better than the last one. He is young and up to date. Now my GP has moved also very young and new to practicing medicine and very thorough. I had to see another GP and she was very ordinary and no where near as in tune with me or my illnesses. I have just tracked my old GP down and she has moved to the next town and I will be travelling that far to see her in the future. It might be worth trying some other doctors, that of course if you are able to travel a bit. If you don’t do any good then you can always go back to your existing dr.
You never know who might have just qualified and gone into practice and is up to date on the latest. This worked for me over the Rhuemy with years of experience as some dr’s do become a bit complacent and it becomes the same ole same ole each visit.