have a question for everyone on how they are on biologics and how they feel pain and psoriasis wise? How do you definatly know that it is working for you Like are you suppose to be completely pain and psoriatic free or just so its managable? I know everyone will be different but im wondering due to mtx and enbrel is helping me but wondering should it be taking all my pain and psoriasis away all together?
That’s quite a thought provoking question, I feel so much better than I did (I’m on MTX with meloxicam) but no I’m not 100% better. I still have arising pain in the mornings with stiffness, still have joint pain but I tend to get only a few at a time now except for my shoulders which are always sore. I think about a year ago when I was really bad, everything hurt and I was at an extremely low point when even breathing was very painful due to my costalsternal and costalvertabral joints being inflamed I just wanted to improve. I’ve got to a point where I can do most of the things I want to and work my way round the things I can’t, but maybe, as in my case, we’ve had pain for so many years ( about 20+) that we sort of get used to a certain level of pain and think its exceptable?!
Food for thought!
From what I've heard, it's fairly rare for meds to completely take away all symptoms and pain, but it does happen for some. You can go into remission.
For me, Remicade made me able to function. It significantly increased my mobility (didn't need wheelchair, rarely needed canes) and energy levels. It decreased my pain. I have Psa / spondylitis, have partially fused SI joints and damage to many joints, so pain-free isn't a state I'll most likely ever be in.
That's a really great question. My doctor and I seem to be on different pages with this one. When I was initially put on plaquenil, it was a clear improvement in pain level and energy level. I had MTX added in 6 months ago, and haven't noticed any improvement, and still had a good solid summer flare. And my slight psoriasis has gotten worse since I went on the MTX.
How does one determine if it is good enough? How can you say that the medication is working if you still have a flare when on it?
I don't mean to be a wet blanket BUT the "profession" considers the meds effective with a 20% improvement in symptoms. This is also the basis for the studies. They have been debating hotly for years that a 50% improvement should be the bases.
This is not to say there isn't greater improvement. By adding a DMRD, NSAID, PrediBurst (or taper) pain meds PT, etc etc a much higher improvement can be gotten.
I know several people on a variety of meds for RA and PsA. We have been friends for 4 years. Not one of us is completely pain free nor symptom free. We are managed and if we choose to live cautiously ie never overdo it..... bhwahahahahaha ..... ahem I lost control there for a minute, we all do quite well.
PsA is a progrssive disease. It never goes away. I don't want to sound condesending here but I took about 3 years to get that into my head. It is a tough break for all of us but with bios and pain management skills and meds, completely doable. ( is doable a word??? must look that up)
Personal experience has shown me Humira and MTX are working . My P is basically non existant for the first time in my life. (thankyou MTX) I have had to go off both meds, for a variety of reasons, 3 times. During all 3 occasions my SED rate sky rocketed and my pain levels joined in. It only took 4 days of missing Humira for me to realise it was working. I completely forgot how bad the pain was. The pain I have now is nothing in comparison and when I grumble now I am whinging cause I can't do the things I used too. So that is all I can tell you. good luck to you I hope the bio's keep on working for your and you pain levels stay low. :)
Anastasia that can depend on so many things! I'm completely better on Enbrel. I felt mostly better soon after I started, but it took several months, (maybe 6?) before I couldn't tell I have PsA. It's been another four months and I still feel great.
Your doctor will have a much better Idea about you than anyone here. Give it some time... you should continue to get better for awhile. Don't rule out other options such as getting physical therapy or seeing an orthopedic surgeon.
Just started enbrel two weeks ago and I am just glad right now that I am able to walk, raise my hand over my shoulder. I still am having some discomfort in my wrist and in left ankle but my doctor just keeps on saying give it time.
I do remember the times from the past months where I could not get out of bed and I hope I have very few moments like that again.
I started off on Enbrel and saw great results with only a little bit of symptoms but the effectiveness wore off and I have had two infusions of Remicade instead of Enbrel. I spoke with my doctor and he wants me completely symptom free, no pain at all and no flares is his goal for one full year. My pain is minimal compared to the way it was before so I am grateful for the progress. I am hopeful that the pain will completely go away but unfortunately it may not happen and as many people here do I am learning to understand this. I hope that your PsA is positively impacted and gives you relief but it may not be a complete fix and it will take time. I knew the meds were working because I was able to get out of bed and I was able to play with my niece on the floor for the first time since she was born. Those moments remind me that the meds are working.
i often wonder about this as well. I am on methotrexate and sulfasalazine (sulfa for almost a yr, mtx for about 6months) and I am better but not symptom free. My psoriasis is very close to being completely gone thanks to the meds, topical clobetasol, and tar shampoo & clobetasol solution for my scalp. The small scalp patches are the most persistent but my skin is looking great although my psoriasis has always been mild. I hope to one day be pain free but it has not happened yet. through trial and error, i do know that the meds make me much better and i am positive it would be unbearable without them.
I asked my doctor what he defined symptom free. He said that with 83% of the people will be symptom free and with the rest of the 17% we monitor their pain as best of we can. How encouraging, right.
With me just starting the enbrel mixed with mtx, it is too early for me to see how it is going. My wrist get tight and hot at times still but I am using them lots and I only 2 weeks on meds combination.
Rebel mom said:
I asked my doctor what he defined symptom free. He said that with 83% of the people will be symptom free and with the rest of the 17% we monitor their pain as best of we can. How encouraging, right.
With me just starting the enbrel mixed with mtx, it is too early for me to see how it is going. My wrist get tight and hot at times still but I am using them lots and I only 2 weeks on meds combination.
I will answer with a question…is living with pain and managing it BETTER for you in the long run than putting Humera in your body??? I manage mine with a strict diet of veges, fruit, and meat…swimming…daily 30 minute nap…methotrexate and meloxicam. I hurt everyday, but much less then before…should I shoot for the moon and take the Humera for a pain free life then regret it when it causes cancer??
That is a question only you can answer.
I could feel the benefits of the Enbrel right away. I have some good, some very good days, but with all the other disease factors I have and the affects of weather like cold, storms, barometric pressure, I have to be realistic and expect that there will be days that are not so great!
I know that the Enbrel is working just by the fact that by Friday morning I can feel it wearing off and await the 5:00 mark when I get another shot. I did ask for a stronger dose, but am at the max with a 50mg shot a week.
Hope this helps answer your question, BTW, I also take Oxiprozin, Lyrica on a regular basis, that help with joint and nerve pain.
You do know that while there is more hepatosplenic T-cell lymphoma in Humira users than the general population the occurence of "cancer" in Humira patients is NO higher than the general population, but is in fact lower (not low enough to statistically significant.).......... While the T-cell lymphoma is directley related to TNF inhibitors ther have been NO studies of pattients not recieveing biologics to determine whether the increased incidence of hepatosplenic T-cell lymphoma is trelated to the medication OR the disease........
I'm on enbrel with 5mg prednisone and 200mg celebrex. The flu like symptoms are gone, the swelling is right down, my heart is back to normal, my brain is working again but I still have pain in the feet, hands back, neck and shoulders although at a lesser intensity. Pain actually got worse as the swelling reduced but reduced after about 12 enbrel shots. Psoriasis is also much better.
Humira does NOT cause cancer! It's a lot safer than methotrexate!
Amy said:
I will answer with a question...is living with pain and managing it BETTER for you in the long run than putting Humera in your body??? I manage mine with a strict diet of veges, fruit, and meat...swimming....daily 30 minute nap...methotrexate and meloxicam. I hurt everyday, but much less then before....should I shoot for the moon and take the Humera for a pain free life then regret it when it causes cancer??
Thank you for the reply, Andrew! I have so much to learn. I read that it can…
There's over one million people on Humira now. Out of all those people some people have gotten cancer. So they have to report that on the website. Out of any group of one million people some have gotten cancer. Scientists however have looked at a large numbers of studies and concluded that people on the biologics don't get cancer anymore than people not on biologics. There's no casual link. You can find links to this information at the NPF.. psoriasis.org
Also look a little deeper on their website into the prescribing information. Life in general gives you cancer, the biologics don't speed up that process. Respect them, they're powerful medication, but don't be afraid of them. Overall, they help one's health, not hurt it.
lastshooter said:
You might wish to read their web site.
Andrew said:Humira does NOT cause cancer! It's a lot safer than methotrexate!
Amy said:I will answer with a question...is living with pain and managing it BETTER for you in the long run than putting Humera in your body??? I manage mine with a strict diet of veges, fruit, and meat...swimming....daily 30 minute nap...methotrexate and meloxicam. I hurt everyday, but much less then before....should I shoot for the moon and take the Humera for a pain free life then regret it when it causes cancer??