Yes. I first tried, Enbrel (horrible allergic reaction after second dose), then Humira (6 months no improvement), then have been on Stelara for 3 years. I just got a new rheumy and we are trying Cosentyx. just got my bloodwork results so in about three weeks i’ll have it. i am very excited for this one.
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I’m so sorry.
What about your PCP?
Do you have a relationship? He or she can prescribe pain medication.
There is hospice, the palliative side. Maybe that can be an option. The other alternative is Medical Marijuana. Look into that.
You should not have to suffer.
I will pray for you.
Psoriatic Arthritis is so painful!
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I’m on Cosentyx at 300mg now for around 17 months. It’s a slow burner so please be patient for at least a year. You will most likely feel absolutely brilliant through the loading doses and then it seriously dips and you think ‘dang this one isn’t going to work after all’ but then it picks up again - for me that was month 8 - for others that can be month 6 or even month 10. But it does pick up if you stick it out. It’s now really working for me. And I think that is amazing. So best of luck.
Oh, I’m so glad to hear that you’re “working” on something. Ten years ago, there was one biologic – Enbrel – and then soon after, Humira. Those were the choices. That was about the time I started with biologics, beginning with Enbrel.
That pooped out, and I moved to Humira. I used to worry about what I’d do if I ever “burned through” Humira! Remicade was about the only alternative. Humira has done great things for me, and is “holding” six years later. And now, there are so many other meds to choose from, choosing will be hard when Humira doesn’t cut it any more.
So exciting that Cosentyx is on the horizon for you! Our experience here is that, sooner or later, there will be some kind of relief. Just have to keep fighting until you find it.
LOL one-armed boxing!
I was on embrel ( nothing), good run with humira( 2-3 yrs) then now still use cosentyx ( winner). I mirror same response as others have said about good start then almost gave up but soooo glad I didn’t!!! I am never going to be 100% and finding a new normal is as bitter sweet as the lag time I experienced on cosentyx. I think the up/down was 6-8 months but somewhere in there dose was increased to 2 shots monthly and after time it worked. Of course during this time frame my life changed drastically… divorce, covid, wildfires you name it…stress was higher than I remember having in a long time. I truly appreciate this bio because even though it was slow working I know know I was only 1/2 of as how good as I was on Humira which I thought was a god send then. I wish it was easier to know what will work right but I also value the coolness of individuality. We process emotions in different ways so it in my mind ok that we process meds differently too (taken some deep thinking to get there). I wanted to respond earlier to your post but I could not put words to a post I know others would read but I have felt the same emotions, been in similar circumstance and am moving forward better than before. Every mountain looks high until you get to the bottom but all of us climbed many in the past but we forget how high they looked when we started. If you want to contact me personally I would be happy to respond.
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Greetings, I know how you feel. I’ve been suffering from Psoriatic Arthritis since year 2000. But it started on my skin 1996 3 yrs after giving birth to my 3rd daughter… Year 2000 i had pain on my left wrist, i thought it was because of playing ‘squash’… Months passes by, pain started on my finger, left shoulder foot etc… I have to approach an orthopaedic doctor, did few examinations, blood tests, found out that my CRP (C REACTIVE PROTEIN IS HIGH) that was the source of pain… I was adviced to stop smoking, drinking alcohol, avoid stress…Though i can’t avoid stress due to my type of Job “Executive Secretary and staff coordinator” Anyways i tried but it does not help, less sleep, it trigger more…My hubby started doing his research, he found something to ease bone paining, i flew to Egypt to Safaga, where there is a resort doing a CLIMOTHERAPY. what does it do, soaking body in thr seawater, then taking Sun…did it for 2 months, my skin probs dissappeat for 2 years…After 2 yrs and due to our lifestyle which cant be avoided , once in awhile drinking, smoke occassionally…It trigger…Tried several medications then i end up to taking Enbrel 50mg. subcutaneous (self injecting) combine with Arava 20mg tablet (generic name leuflonomide) these combi medication made me okay till now…Once a week self injecting for the last 2012…As long as i have them both combination medicines am good…Thankful for my hubby company insurance…I am sharing my experiences… Tried HUMIRA & Infliximab thru Ivy but in the long run i had an allergy…After hubby passed away a year ago but still i had few left over meds, after this i will see what I can do ro conrinue with my meds, coz ENBREL 50mg quite expensive…I need to moved on and survive, have grown up daughters and grandkids to live by…Diet food more on vegetable, fish, fruits, some helpful nuts. Avoid fattening food, dairies, anything made from flour, pasta, sugary food etc…Started meditating, walking, exercising, some massage therapy…Am sharing my experiences and hope this will help a bit…
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What you are asking for will never (and should never happen) Human subjects can not be lab animals so we are limited to animal studies which ARE conclusive Hundreds abound. This recently publishes study from Canada pretty confirms Theory. https://www.mdpi.com/2075-4426/10/2/27/pdf because its an individual response differential diagnoses is the only approach. With all the flap the last year the term “Science” has taken on a meaning that it never had. Science is not “fact”
The “sun sets in the west” is fact the problem is that it doesn’t science (theory) is still trying to figure it out. Dos the sun set or does the eart move making it look like it sets (thing of the round vs flat earth) Fact says its flat until you look a bit further. Okay so the earth rotates. NOW we are on to something until oh chit it also orbits. Okay we have it Earth rotates and Orbits. That explains it. Nope now we find out the dang SUN also rotates AND orbits AND changes places. Where does that leave us?
Right back at the beginning the sun appears in the East and disappears in the west. That’s what we know so deal with it. OR maybe create Daylight savings time so we think we have some control OR as science does say hey wait a minute. The only this can work is if the earth is Round, Orbits, and rotates so those guys several thousand years ago were right. But as we learn more the Oh chits continue but There is only ONE Fact.
OIH is the same. We see it. We experience it. We know it happens, We treat it. No matter HOW many studies are done there are no more facts That’s why the study I referenced is so important. It asks what docs are seeing, what patients are experiencing, when it it happens and What they are doing about it. As a preponderance of experiences (which you are calling anecdotal) are known we know what we can do now.Which is avoid it and treat if we can.
If you are looking for science to create Facts, that a tall order as 98% of all science has been disproven but the observations stay in tact (mechanisms may change). What many folks are hoping for isn’t going to happen. Docs are not going to be given back their script pads ever (Further restrictions being FAR more likley) Whats observed is TRUE and is fact. One needs only look at the last 15 or so months of changes in COVID fom the NIH. More is known and theories are expanded, tweaks are mad but we still know vaccines work, masks and social distancing help. Knowledge is expanding but the science stays the same.
In regards to OIH, there is also an inescapable fact. 98% of non cancer use of opiods (non end of life analgesia) happens in North America (The USA in Particular) OIH and chronic pain occurs essentially only in North America being essentially only an issue in the USA. They are on to it.
Thanks for the link @tntlamb
This study seems realistic and does not read like most, an op-ed piece against opioids.
I find it interesting the OIH is a US phenomenon. I think I once read so was fibromyalgia.
I continue to look for good research on opioid tolerance because I think it is more of an issue. I still believe that the issues with addiction and tolerance go hand in hand. Until the medical community decides that there are just some people that are easily addicted for whatever reason, everyone will pay the price.
I know from first hand experience the disastrous end addiction to opioids can come to. I lost a nephew to circumstance around opioid addiction. The problem was not with tolerance but unsuccessfully treated depression. He was one of the types of people that got a high from opioids and thereby got to escape the feelings of his depression. Having experience severe depression myself for nearly 30 years, I can easily understand how appealing that escape would have been. Fortunately medical science found a solution to my depression, one that was not afforded to my nephew.
I don’t get any sense of a high from opioids, I also get very little pain relief from them at the levels the state allows me to take. I just wish the government would let my doctor practice medicine to see if there is a reasonable level of pain medication that would help me where I could function.
There may not be a reasonable level of pain medications for me that would both allow enough relief from pain to be comfortable and at the same time not be so medicated I could not function from that.
Looking at the title of this thread, I am slowly getting to that point. I am going to have to do something reasonable to obtain any quality of life. My pain and my physical limitations both continue to grow worse. The last month has been a real struggle. I am still working from home and that is the only reason I am still working. My doctor told me I missed the window to file for disability. The SSA now feels like everyone can work from home, so he can’t get any disabled. Now, I am not sure anymore that would help me anyway. I took a week off for a vacation and all I have done is sleep 14 hours a day.
Working keeps my mind off of the PSA some. Last week I got frustrated that I can not do things physically anymore and pushed myself to undertake a project outside that should have taken an hour. It took me 6 hours. Now I have been in terrible pain for the last week from it. It has made me realize that I am just unable to do things of that nature anymore. I just turned 63 and I feel 163.
As I look around my house and yard and see all the little projects that have gone undone for the last 4 years it is getting to me. I have always been a doer. Now that I have to sit by and let things just fall apart is a huge strain on me mentally. I am slowly beginning to wonder which is worse for me. The physical pain or the mental pain.
I don’t know of a more aggressive treatment for the PSA I can try other than switching biologics over and over. So far that has been of little help. My next step my be to try pain management, thought I still have my doubts about that.
BTW there is NOT a statute of limitations for SSDI. They will however pay only 12 months retro from date of application. You want to be careful as you don’t have medicare for 18 mos following your award date and look back period so THAT can be an issue. also what you get for SSDI is it. If you are close to returement, those benefits could be reduced significantly. You are actually in a good spot You worked, you worked from home and now have trouble working from home. Its as good as it gets because if you have not done all of that they will want you to try, voc rehab, etc stretching the app over years. WAAAAAY to many people leave their Docs office after getting a DX and stop at the social security office on their way home (okay a bit of an exaggeration but not much… I held on till 62 and avoided the whole thing it was a reduction from my full retirement benefit but $267.00 more than disability…
I hear you on the time took me a sat and a sunday days to install carpet in one small bedroom (used to lay 100 yard+in a day) finally felt human by friday so started on the bigger Bedroom Sat morning again Was done for beer time and believe it or not felt human on monday. Its a process but in all honesty I have a LOT of encouragement theses days Finalized the adoption on Tues (we look like a bunch of robbers.) If I didn’t know I could do the PsA thing based on past experience I certainly would never have considered adopting a 7 and 9 year old at 68. Its not a bed of roses. I have a new hip and a major spinal surgery coming up. I was in a "chair and very dependent on pain meds at one time so I don’t speak theoretically. Todya I’m actually better off than a lot of my friends who have “no Disease” Ladies, don’t read this Whats made a hug difference is an expensive prescription lotion called androgel. Energy but also Pain levels. Get that T level checked and respond accordingly. It makes a difference in pain management, energy, strength and marriage… Gues I have a reason to keep fighting lol
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I don’t believe ther is a state left where a PCP can prescribe more than a week or a bit more of Narcos and the dosage is also limited.
Congrats on the adoption.
In my state there is actually and exemption from the opioid police for people with major arthritis. Even still, the most I can get is 5 mg oxycodone t.i.d., but I can get a month supply at a time. I can’t get the time released stuff without going into pain management. They usually last me two months.
I did androgel and testim for 5 or 6 years in my late forties and early fifties. Never felt like I did much. Glad it is working for you. I have always had my suspicions it may have contributed to my prostate cancer at 57. Of course, it would be a no-no more me now.
Congrats on the adoption! I feel like I’m too tired to take on little kids again even at fast approaching fifty lol. I’ll wait until there’s grandkids and enjoy them then.
They come! These two are grands. Mom went to the grocery store last March 17. Hasn’t been seen since. She is #150 on the missing indigenous woman’s list. 8 from her town of 800 alone. The Town is 60 miles from the next closest town in middle of the Flathead reservation. These two are amazing kiddos. The 13 month old (a great grand child) that we also have is a devil child… (as are all toddlers lol) it’s been a lot of fun in 43 years of fostering/adopting, we never had a baby… But then have always been a bit backward and can’t say no. But we are learning…
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Toddlers are definitely a handful. I see them all the time and can’t help but think how happy I am too have teenagers lol . They’re so sweet though too!
That’s crazy that she went missing and that there’s so many missing! What on earth is a possible explanation for so many missing indigenous women?
The sad truth is they go from the Rez to the tri-cities in Washington (huge hispanic gang presence) to Tacoma Washington. (same situation) from there they are sold into the sex trade
Some go to Mexico the rest around the country. The task force thinks they have a lead in Missouri. By the time they “go to work” they are pretty much under control by either meth or intimidation. We hired a private investigator who tracked her to Washington.
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I don’t have any other useful things to add, but please don’t give up and things will get better.
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