Awesome!! I'm so happy that you wrote this! I'm even happier that you experienced the great change from the older meds to the newer biologics!! I hope you're feeling much better and will continue to have improved quality of life and over health and well-being!! This is my wish for us all!! Thanks for sharing that!
tntlamb said:
Couldn't agree with you more. I well remember they days I spent in a wheelchair (and the days even that was too painful) before the biologics became available......
Last I heard there were some 42 new meds including a whole new "biological" gambit in testing and some in stage three clinical trials. imagine taking the bios by pill!!!!!
Sherry said:
Interesting article. However, in the face of all the literature, I'm going to boldy claim healing/remission for myself and for all of us!! Here's to new, future articles about the soaring successes PsA and RA patients are having with wonderful new medicines and medical technology!!!
I see this is a relatively older thread but I got some news this week that was a little shocking. I was diagnosed with inflammatory arthritis in 2011 and tested positive for the rheumatoid factor, however, I was having a lot of sudden weird skin issues and displaying more like a PsA patient. Eventually I was diagnosed with both PsA and RA, I get nodules and the joints common to RA as well as all the tendon issues and psoriatic toenails and dactylitis. I can now recognize that I have both and then was just diagnosed with Crohn’s disease. I had limited success with Humira and Cimzia, now I’m on Remicade. That’s pretty much the three that treat the arthritis and Crohn’s so my GI doc suggested I may need to consider the Mayo clinic. I’ve been on MTX the entire time and now getting ready to start taking balsalazide. Has anyone else cycled through the biologics so fast? I stop responding suddenly and everything swells up and the Crohn’s flares. Humira lasted 9 months, Cimzia 1.5 years and now they are increasing my Remicade dose and frequency. I’m jealous of my friend with RA that has been on Enbrel for 10 years!
You of course likely need the MTX with Remicade, BUT if you have never been off MTX, that's a big question. An awful lot of "crohns" symptoms are related to MTX use. Also you may want to check this out:
You know, I did notice recently that the busier I am, the better I feel! Sitting around is not good for my PsA . I was so worried about the trip to GA and helping our daughter move--I didn't help lift anything, but they live in a 3rd floor apt with no elevator, so I was up and down those stairs a lot. Surprisingly, that didn't make my feet hurt worse! Moving her out of her old apt was a lot of cleaning--driving two days I thought for sure my back would hurt unbearably, but it didn't!
That leads me to this: would it be stupid of me to cut back on my Enbrel? Instead of every 7 days, go down to every 10 days? I'm just thinking maybe I don't need it as often since I'm feeling so good.
I have never actually had psoriasis full on, although I have gotten really dry thick scalp before I started biologics. Looking back I think maybe I've had Crohn's longer than arthritis but not as bad as now. Ten years ago when I was only 30 I was having mouth sores and they weren't frequent or bothersome enough to do much about. I was also getting extreme cramping and diarrhea, but only premenstrually. Having a uterus confuses things. I just thought it was PMS related. Eventually, when I was on Cimzia and MTX I achieved the best remission ever, really I felt the best I had ever felt. Once I got the flu in late 2014 (the strain that wasn't in the shot), it knocked me off my remission, (maybe coincidence). That's when the diarrhea and cramping made its resurgence and my rheumatologist suggested it could be some kind of inflammatory bowel. I have noticed that it actually gets better when I inject my weekly MTX. I just got a colonoscopy last month and with those biopsies, my history, other symptoms and response to drugs led to my diagnosis. I will check out the MTX article, though.
tntlamb said:
You of course likely need the MTX with Remicade, BUT if you have never been off MTX, that's a big question. An awful lot of "crohns" symptoms are related to MTX use. Also you may want to check this out:
You would need to talk to your doctor about this. I’m guessing that it was tested at different frequencies, and that every seven days is the optimal spacing for the most people.
Grandma J said:
You know, I did notice recently that the busier I am, the better I feel! Sitting around is not good for my PsA . I was so worried about the trip to GA and helping our daughter move–I didn’t help lift anything, but they live in a 3rd floor apt with no elevator, so I was up and down those stairs a lot. Surprisingly, that didn’t make my feet hurt worse! Moving her out of her old apt was a lot of cleaning–driving two days I thought for sure my back would hurt unbearably, but it didn’t!
That leads me to this: would it be stupid of me to cut back on my Enbrel? Instead of every 7 days, go down to every 10 days? I’m just thinking maybe I don’t need it as often since I’m feeling so good.
Mel, I had stomach issues for several years, which I chalked up to IBS that was triggered by eating lettuce salads at certain restaurants. When I figured out what caused my serious cramping and diarrhea I avoided those salads and eventually stopped getting IBS. But, it never fails--every time I travel out of state I get one bout of what seems to be IBS. No clue what causes this!!!
Stoney, I'd rather do it on my own than arrange it with my doctor. If he officially changed my prescription, then the insurance people know of it and it probably would be a fiasco changing it back again if I needed it every 7 days. But, considering I have some annoying psoriasis lingering on my legs and a certain small amount of PsA stiffness, maybe it wouldn't be a good idea to decrease my dose. I just keep worrying my WBCs will keep going down until my doctor takes me off Enbrel altogether. I'm trying hard to heed lamb's advice and not worry so much!
Respectfully, WHAT THE HELL ARE YOU THINKING??????? Enbrel treats PsA, and just a part of it at that, Its working, so why would you want to fix what isn't broken? Do the Flare Gods, need to give you a good one so you you remember why you are taking it? ? :-) See I'm watching you. GA is a beutiful state, were it not for an experience with a certain military installation, I could almost winter down there, or at least spend some time during peanut boiling season.....
I love tntlamb's reply for various reasons including the fact that the bits that I can't understand due to being foreign conjure up wonderful images. Anyway, he's watching you so I won't bother with the surveillance.
But something that occurs to me is that it's only a very short while ago really that your feet were hurting like hell. I know this because although I don't think mine have been quite as bad, I've been having very similar issues over much the same time period. As it happens, my feet have eased up a lot too. I've still got a bit of swelling but overall, pretty good and that goes for most joints and skin too. So guess what? I have this feeling of "I'm cured!!"
It's a gift really, forgetting the bad stuff so quickly, because PsA does ebb and flow and we have to make the most of the good times. But that's just it .... when I come down to earth I remember that I cannot make any decisions based on a few weeks or even months of improvement.
Oh GrandmaJ, here you go again my friend! Don’t stop taking just to be back to no meds, to me this is no longer a reasonable goal. You already have permanent damage due to PSA my biggest defense not mentioned is why would you consider purposely allowing more? It is proven that bios offer to slow damage if not prevent further damage if it works for the user. It’s working! What if the foot pain not long ago or the mild SI returns? If no Enbrel it could be a full blown flare like in the past. Count your blessings and enjoy this time smartly!!!
What I'm wondering, lamb, is how do some people have what they call "remission"? I want one of those!!! I guess just wishful thinking....no flare gods, please!!!! I've been lucky in that respect! And GA, yes, I envy her when our temps have been dipping so low this week and Saturday will be -20 F overnight. (F for Fahrenheit, not the other F word). We will be visiting her quite often--except NOT during the HOT summer they supposedly have. MN gets hot and humid with all our lakes, but I guess GA can be 115 with nearly 100 % humidity!!!! Yikes--dangerous!
Thanks for the reality check!
tntlamb said:
Grandma J,
Respectfully, WHAT THE HELL ARE YOU THINKING??????? Enbrel treats PsA, and just a part of it at that, Its working, so why would you want to fix what isn't broken? Do the Flare Gods, need to give you a good one so you you remember why you are taking it? ? :-) See I'm watching you. GA is a beutiful state, were it not for an experience with a certain military installation, I could almost winter down there, or at least spend some time during peanut boiling season.....
Hey Sybil, I'm glad to hear you're finally feeling so good! You had a bad year--or almost a year, I guess!!!!! You toughed it out, and now look at you! Such a positive thinker-way to go, girl!
I'm pretty sure all my foot and back pain is damage from PsA--not PsA symptoms or flares. The reason I think that is because before I took Enbrel, everything was stiff, and I barely have stiffness anymore. My stiffness now is "mellow" compared to formerly "excruciating" - if you can describe stiffness with those words!!!! The damage sucks and I'm sure glad I found lwpsa.org when I did and got the push I needed from you guys before more damage happened!!!
Sybil said:
Grandma J,
I love tntlamb's reply for various reasons including the fact that the bits that I can't understand due to being foreign conjure up wonderful images. Anyway, he's watching you so I won't bother with the surveillance.
But something that occurs to me is that it's only a very short while ago really that your feet were hurting like hell. I know this because although I don't think mine have been quite as bad, I've been having very similar issues over much the same time period. As it happens, my feet have eased up a lot too. I've still got a bit of swelling but overall, pretty good and that goes for most joints and skin too. So guess what? I have this feeling of "I'm cured!!"
It's a gift really, forgetting the bad stuff so quickly, because PsA does ebb and flow and we have to make the most of the good times. But that's just it .... when I come down to earth I remember that I cannot make any decisions based on a few weeks or even months of improvement.
Feel a bit guilty saying this Grandma J but I’ve been in remission for a good while now with the PsA, and that’s being on MTX alone…I’m one of the lucky ones. I’m by no means pain-free as there is still “mechanical” joint pain as apposed to “inflammatory” joint pain, and of course, my old friend Fibro but this I can cope with as long as I keep to my meds, eat well, exercise and the Fibro doesn’t flare, which it tends to if I poke a stick at it.
There is remission for some and I really hope you get there.
Point of fact; my Rheumatologist still has me on 25mg MTX a week as he wants to keep me in remission and all my bloods are spot on. That will be reviewed at my next app which should be in the early summer sometime.
Is it due to damage alone? I don't know, I reckon that could be the subject of a whole new post. As you may recall my problems started in the knee department. For years these knees went through the whole gamut of stiffness, swelling and a crazy range of different types of pain and mobility problems. At so many points, especially once stiffness and swelling had improved, I thought for sure that PsA was no longer attacking them and that it was all down to damage. But over a very long period of time they've become pain free with only occasional reminders. I think there may come a point at which it is very difficult to tell what is due to damage, what is due to inflammation and what is due to both. Plus, there's this koebner effect phenomenon ..... might it be that if our inflammation ups even just a little, it's the damaged joints that take the hit?
Grandma J said:
Hey Sybil, I'm glad to hear you're finally feeling so good! You had a bad year--or almost a year, I guess!!!!! You toughed it out, and now look at you! Such a positive thinker-way to go, girl!
I'm pretty sure all my foot and back pain is damage from PsA--not PsA symptoms or flares. The reason I think that is because before I took Enbrel, everything was stiff, and I barely have stiffness anymore. My stiffness now is "mellow" compared to formerly "excruciating" - if you can describe stiffness with those words!!!! The damage sucks and I'm sure glad I found lwpsa.org when I did and got the push I needed from you guys before more damage happened!!!
Sybil said:
Grandma J,
I love tntlamb's reply for various reasons including the fact that the bits that I can't understand due to being foreign conjure up wonderful images. Anyway, he's watching you so I won't bother with the surveillance.
But something that occurs to me is that it's only a very short while ago really that your feet were hurting like hell. I know this because although I don't think mine have been quite as bad, I've been having very similar issues over much the same time period. As it happens, my feet have eased up a lot too. I've still got a bit of swelling but overall, pretty good and that goes for most joints and skin too. So guess what? I have this feeling of "I'm cured!!"
It's a gift really, forgetting the bad stuff so quickly, because PsA does ebb and flow and we have to make the most of the good times. But that's just it .... when I come down to earth I remember that I cannot make any decisions based on a few weeks or even months of improvement.