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Living with Psoriatic Arthritis (PsA)

I'm running out of options - I can't go back to the way I was


#1

So after 6 failed medication attempts, stelara showed some signs of working. I’m coming up on 8 months of stelara treatment along with 5mg prednisone per day and regular trips to the pain clinic for multiple shots and epidurals which include more steroids and other things. The shots last less time each time I get them. Very honestly speaking, without them, I am simply waiting to die. Between the pain and strain it puts on my marriage, PsA is killing me. I’m running out of options and with all the drugs I’m pumping into my body, I feel like I’m shortening my lifespan. I guess that’s ok for me, just bad for my loved ones. I just want to be ok.

I am afraid my rhum will want to give up on stelara although its the first to work that also doesn’t make me violently ill and it has also reduced my fatigue and psoriasis. I don’t want to start over. I simply do not have another 4 to 6 months to wait for yet a another med to start working, if at all. :frowning:

I’m angry and scared. Please give encouragement, I need you my friends.


#2

Hi Kmwestmo, what a tough run.

How do you feel about the stelara? It sounds like you want to persist with it, but on the other hand, it doesn’t sound like things are good between the shots. I guess I am asking because it is your body, not the Rheum’s, and if you can understand what your feelings on it are when you have your next appointment, that might make it easier to make the decision together.

I’m thinking of you, and you are not alone in this, things can get better, and im hoping that’s soon for you.


#3

Thanks, Jen. I like the stelara for various good reasons but it isnt enough. I am entertaining adding methotrexate in small dose to help. Problem is I tried methotrexate as my first treatment and only made it to the 4th week of titration. Was sleeping 16 hours a day and vomiting a lot. I am hoping a lower dose will be tolerated. I take compazine or zofran every day for pretty bad nausea already. I’ve lost about a third of my hair and the methotrexate will prevent it from growing back after it falls out :cry:. I know hair is vanity but i don’t have a lot else to feel pretty about. My skin is very sensitive and i dont know how I’d tolerate a wig. I cant stand my extensions. In the end, i choose to live and if that means no hair, then so be it. I just can’t take much more trial and error on meds. They take too long to work and the pain can be utterly debilitating.


#4

Hi Kmwestmo,
I guess I wouldn’t take something that made me vomit, either!
About the Stelara—would the doctor consider trying an increased dose? I’m just wondering if the standard, recommended, dose isn’t right for some people.
I can surely understand your disappointment and wanting to give up. It is a nasty disease and so hard when you feel like absolute crap and nothing helps.
Please don’t give up, though! Something that works may be just around the corner!

I hope today has been a better day for you and there are easy, sunshiny days ahead!


#5

I am taking the 90mg shots which are the biggest ones. I am not sure if she could maybe double up or not, but thanks for the suggestion. I will definitely ask.


#6

Dear kmwestmo, feeling so sorry for your pain and family constraints, our illness puts such a strain on relationships as well. Have also been kept on methotrexate in spite of hair loss, in my case dose was diminished after it had been increased. Combination of mtx and biologic has some effect, when interrupted mtx due to convalescence from hip operation in sept biologic ceased to have effect, now have resumed mtx plus fasting and no sugar no carb diet pain gone again. Hoping for a quick solution of your problems, let us know, all the best


#7

Ok. I just came to this site because humira is no longer working and want too…i be on stelara because I see it works best for enthesitis. I wanted to know it’s there a place we post how long each drug works on us for? … before failing…

Thanks
Anne


#8

Are you saying the no sugar diet helps your pain?

I couldn’t take the methotrexate or steroids. Ugh. But the sulfasalazine with the humira is what I’m on now and, while I can tell when I DON’T take the sulfasalazine, it helps still nominally. So I’m asking for stelara, I think that helps enthesitis the most. I’m also on meloxicam but when I’m flaired up, I stop that and do ketorolac (tolodol)… again, a little better with that. It sucks for sure, my husband is in medicine and is EXTREMELY frustrated with my inability to do anything. :roll_eyes:. Like I’m not​:roll_eyes::roll_eyes:.
God bless ya,
Anne


#9

Am remarking that yes, stopping all sugar intake, which includes checking labels for artificial sweeteners and all sorts of sugars, and all carbohydrates except a few naturally found in vegetables that grow above land, had the effect of getting rid of inflammatory pain which had returned on my knee in spite of biologic and was preventing me from walking. Am now continuing with this way of eating, which includes short repeated fasts alternated with feeding days, and my overall health is continuing to benefit in a very strong way. It is considered an anti inflammatory diet. Have a nice day,


#10

So I see you guys are working through the meds and adjusting diet to what wfits for you. That’s two of the three things you need do. What kind of PT/exercise/movement programs have they worked out for you. It is especially important when on biologics because of the T-Cell suppression. Without it you are pretty much screwed.

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#11

https://www.livingwithpsoriaticarthritis.org/c/medications is whole category devoted to member experiences with meds use the search feature to research yours… The 101 section is basic information but explains the path and the Gap