Does anyone else forget what it felt like?

[jdgarwood]

Since starting Enbrel 6 months ago, I've almost forgotten how bad I felt when my PA was at it's worst! I remember that for 2 years, I was miserable...nothing seemed to help much, but now that I'm feeling better, it's hard for me to remember how bad off I really was. I mentioned this to my Rheumy, and he said that if I were to lay off of the Enbrel for a few weeks, it would all come back to me! I'm thankful that this med has worked so well for me. I still have little reminders that the PA is lurking somewhere deep inside, but my life has returned to a somewhat normal state and I can deal with the minor discomfort that still occurs everyday. Just wondering if anyone else here has felt "cured"...like you could stop taking your meds and be fine. I know that's not the way it would go, but I find it funny that our brains allow us to forget how bad things can really get. Anyone??

Joel

[lulu'smom]

I went off my enbrel for 6 weeks this winter, and I now remember how it felt. I too had totally forgot! I was on for 11 months prior.

[patti2957]

Joel:
I did my third Humira shot today, still on mtx and tapering off prednisone and feel way better than I did for a long, long time. At my rheum appointment this week, she said in a few weeks I might forget I even have this (hard to imagine), that I might go into 'remission.' So, I wondered if that meant I'd be able to stop all the drugs. Guess not.
And if you really thought long and hard, you'd probably be able to remember where you were months ago... try looking at some old posts:) It's interesting, to get some distance, and look back at how things were - it might make you wonder how you managed!
Glad to hear how well you're doing and I hope to catch up soon!
patti

[patti2957]

http://www.psoriasis.org/forum/showthread.php?t=16465&referrerid=51792

this was a sobering reminder for me!

patti

[ShadowThomas]

Yes, Enbrel is great for my PA. I have suffered for years with the pain of PA. I have been on, Enbrel since 11/14/05 my pain is so much better but the P. still remains. I see it as a half ah loaf is better then none. :) :)
The way I look at this is, I have had both P. & PA. for years, and if I was given a choice of clear skin or to be just about pain free. I elect to be as pain free as possible.
Bring on the topicals and ointments as I have done that for years anyhow.
I think I could be a poster boy for Rx. drugs for my PA. but sadly nothing has even came close like, Enbrel.
I always worry about getting an infection and having to go off the drug for a few weeks and have all my PA. pain come back to haunt me. :(

[ouchyk]

Hi Joel,

I think a lot of people can relate :D

Last summer was the best ever for me being on prednisone and Enbrel along with a few other meds, I felt wonderful. I had talked myself into thinking I was in remission.

When I stopped the prednisone it all came back but I am grateful for the time when I didn't have pain. My whole family was so excited and happy for me. Although stopping prednisone was like having the rug pulled out from underneath me. It's a drug I respond very well to. Such a shame it can have possible crappy side effects and you can't use it long term.

Did you ever see the movie " Awakenings " with Robert DeNiro?

Next week I'm going for an injection into my scaro area, I know it will offer relief and then I will probably feel just like you! lol. But, lets promise each other we will stay on our meds okay?

I think your rheumy is right, it can all come rushing back if you stop...but you never know, I can understand that feeling of " well maybe I'm in total remission and I don't need this anymore! " ....I've actually seen it happen in two cases with people I have met personally ( thier doctors okay'd it ). But, I'm thinking that's highly unusual. And sometimes when you stop a medication it's not the same when you go back on it.

I'm glad your doing so well on it!

Karen

[jdgarwood]

http://www.psoriasis.org/forum/showthread.php?t=16465&referrerid=51792

this was a sobering reminder for me!

patti

Wow...thanks for the reminder. It's hard to believe how bad things were just a short time ago. I'll won't be skipping any Enbrel injections!

Joel

[vshorter]

Karen wrote:

And sometimes when you stop a medication it's not the same when you go back on it.

I can attest to this. I was on enbrel for about 9 months - working at about 75% for PA. I was still having some pain/stiffness in some joints, some occasional limping and trouble lifting, so I thought it was time to try something else. Switched to Remicade which did absoluetly nothing for me, so went back on Enbrel as Humira was not yet approved for PA. No response to the Enbrel after being back on it for 6 months either! :o Switching to Humira now.

Needless to say, Joel, I know what it's like and mine is even worse than I was in the beginning. :eek: Keeping my fingers crossed that Humira will work.

Vicki

[Ihurt]

I failed on Enbrel-11 months on it. The only "normal" feeling I ever felt was with the Remicade during the first four infusions. Felt wonderful-like the old me, I could do anything I wanted. When my stress level interferred the Remicade stopped working, and the last two infusions were duds.

Just started Humira last week, but my doc just abruptly terminated all biolgic tx because the eye doc found swelling in the optic nere of the right eye.
Im feeling miserable, and I would give my right ans left arm to feel "normal" again.

To answer your question though...YES I remember...it was the most wonderful feeling in the world. Enjoy it, savor it, do what you can to preserve it. God knows, with this ugly disease it can be fleeting! Im very glad that you are doing so well....it gives me hope!

Elaine

[jdgarwood]

Karen wrote:



I can attest to this. I was on enbrel for about 9 months - working at about 75% for PA. I was still having some pain/stiffness in some joints

Vicki

Thanks for your response. I'd have to say that Enbrel is working about 75% to 80% for my PA as well. I don't plan on stopping for even one week for fear it won't work anymore. It still floors me how we can all share the same symptoms, but the "cure" varies from person to person. Good luck with Humira. Take care.

Joel

[jdgarwood]

God knows, with this ugly disease it can be fleeting! Im very glad that you are doing so well....it gives me hope!

Elaine

Thank you Elaine. Hope is good thing....got me thru some pretty rough times. Good luck to you.

Joel

[jdgarwood]

But, lets promise each other we will stay on our meds okay?

I think your rheumy is right, it can all come rushing back if you stop...but you never know, I can understand that feeling of " well maybe I'm in total remission and I don't need this anymore! " ....I've actually seen it happen in two cases with people I have met personally ( thier doctors okay'd it ). But, I'm thinking that's highly unusual. And sometimes when you stop a medication it's not the same when you go back on it.

I'm glad your doing so well on it!

Karen

I agree...let's stay on the meds and not tempt fate. Before I started Enbrel, I was on MTX and Prenisone last summer. I have to admit, while I was taking Prednisone, I felt better than I have in years...and talk about energy!! But, as you said, we can't stay on that stuff too long. I really crashed and burned when I came off of it...I really think that I tapered off too quickly...not good.
Anyway, for the time being, life is pretty good, so I'm just taking it a day at a time and I've really learned not to sweat the small stuff. Oh yeah..."Awakenings" was a great movie! I saw it when it first was released and didn't have PA...I think I'll watch it again. Have a great day.

Joel

[patti2957]

Reading your comments about what happened after you tapered off the prednisone gives me a fright! I'm on 11 mg. now, have been tapering off soooo slowly, 1 mg every 2 wks, and last week my rheum said right now it's the pred that's making me feel better. But, she said, by the time I taper all the way off, I will have had enough Humira injections to make up for it (not her exact words:)
So... I'm wondering if the Humira/pred/mtx mix is gold? Or, if I'm truly on my way to remission. I know the only way to find out is to stay the course; I want to be optimistic but realistic too. Oh well, thanks for sharing, everyone, if you guys are getting anywhere near the amount of help and support I am then this an excellent use of time and energy!
thanks,
patti



I agree...let's stay on the meds and not tempt fate. Before I started Enbrel, I was on MTX and Prenisone last summer. I have to admit, while I was taking Prednisone, I felt better than I have in years...and talk about energy!! But, as you said, we can't stay on that stuff too long. I really crashed and burned when I came off of it...I really think that I tapered off too quickly...not good.
Joel

Last summer was the best ever for me being on prednisone and Enbrel along with a few other meds, I felt wonderful. I had talked myself into thinking I was in remission.
When I stopped the prednisone it all came back but I am grateful for the time when I didn't have pain. My whole family was so excited and happy for me. Although stopping prednisone was like having the rug pulled out from underneath me. It's a drug I respond very well to. Such a shame it can have possible crappy side effects and you can't use it long term.
Karen

[ouchyk]

Patti,

No worries!

I'm sure your rheumy is right, you'll be feeling spectacular as soon as the Humira kicks in! :) It works differently on everyone, and with the MTX kicker I'm confident it will be the magic bullet for you. So many people have come and gone off the boards that I know are still maintaining thier PA with Enbrel and other medications like it.

Remission in any form is wonderful, even medication induced.

Keep the faith. You're doing great!

Karen :)

Joel, enjoy the movie.

[kristoian]

I was on Enbrel starting last year in spring...when it cleared up and was almost completely gone, i DID forget what it was like....ohhhh i miss having the clear skin...My wardrobe expanded sooo much!!!
Was out at the beach every weekend in my teeney bikini!!!!!!!!!!!!!!!!!!!!!!
Im dying for it to happen again

[patti2957]

Karen:
Last summer were you on prednisone when you started Enbrel? Or vice-versa? And once you tapered off, the Enbrel didn't 'cover' what the prednisone had been doing? How big a difference does the Enbrel make as opposed to mtx only? Have you considered Humira? I guess I won't predict gloom and doom, as I drop another mg of pred today:) but from what I've heard, the biologics are supposed to knock it out. I was surprised when my rheum said it was the pred that was making me feel as good as I do... I was hoping to taper off the mtx! Hate that stuff. But, obviously not until I see what happens after the pred slide...
Thanks so much for your encouragement,
patti


Last summer was the best ever for me being on prednisone and Enbrel along with a few other meds, I felt wonderful. I had talked myself into thinking I was in remission.

When I stopped the prednisone it all came back but I am grateful for the time when I didn't have pain. My whole family was so excited and happy for me. Although stopping prednisone was like having the rug pulled out from underneath me. It's a drug I respond very well to. Such a shame it can have possible crappy side effects and you can't use it long term.
Karen

[ouchyk]

Patti,

I was on Enbrel for 15 months and switched to Humira about 6 months ago, I haven't taken MTX, I can't right now. I've been prednisone many times, most recently last spring/summer for a bit of a strech.

You're going to do great!


Karen

sending you a pm.

[tmartha]

Yes, I had almost forgot what it felt like - experiencing pain relief from mtx and the last couple weeks have felt so great - then I overdid things this weekend and yesterday and today it's all coming back to me. Pain, exhaustion, dull brain...It seems it takes a 2x4 over the head to keep me being good to myself. That, and you folks. :) Thanks for writing, all...
Tani

[meghan_e]

Everything being said here is so familiar!

Feel miserable -> get drugs -> feel great -> over do it -> feel miserable

Do it all over again! The trick is to stay as close to the middle of that as possible! LOL- talk about work!

Feel awesome everyone!
-Meghan

[jdgarwood]

Well, I should have kept my mouth shut. Over the last two weeks my joint pain and stiffness from the waist down has made a return. Also, I've developed pain in both shoulders and my left elbow. My skin is still clear, so I guess thats something to be happy about. This may sound weird, but my wife was down with a virus for 2 weeks....shortly after she got sick, my pain started in again. So far, I haven't developed whatever it was she had...thought I was coming down with it a couple of times, but it passed. This may sound crazy, but could I be in some type of flare because of the virus that my body was fighting?? I'm still doing 50mg of Enbrel per week, along with my daily pills...Arthrotec, Plaquenil, Vicodin. I'd appreciated any comments.

[ouchyk]

Hi Joel,

Sorry about the flare. :( You didn't jinx yourself, but I do know what you mean. PA is like this, you can flare thru anything.

It could be that either you're fighting off a virus or perhaps what I have found is what I call a " pain hangover ". It's when you feel good, return to your normal routine, add a lil too it...not rockclimbing...but things that you wouldn't ordinarily do.

I think Meghan pretty well summed it up;

Feel miserable -> get drugs -> feel great -> over do it -> feel miserable

Either way, I think that with any new symptom or return of symptoms a phone call to the rheumy is warranted. He/she might have some ideas for you as to how to best tweak your meds to get you back in the saddle. Oh, no horsebackriding!

Feel better,
Karen


p.s. congrats on the clear skin!

[jdgarwood]

Hi Joel,

Sorry about the flare. :( You didn't jinx yourself, but I do know what you mean. PA is like this, you can flare thru anything.

It could be that either you're fighting off a virus or perhaps what I have found is what I call a " pain hangover ". It's when you feel good, return to your normal routine, add a lil too it...not rockclimbing...but things that you wouldn't ordinarily do.



Karen,

I hope you're right. I have been doing a bit more physically since I started feeling better...maybe I need to back off a bit and remember that I have to still take it easy on the joints. My wife has been after me to call my rueumy too...guess I'll give him a call tomorrow. Thanks for your response....I was getting a little freaked out about the whole thing....just needed to hear from the voice(s) of reason here. Thanks again.

Joel

[ouchyk]

Joel,

I had a gentle reminder from the Pain clinic that I go to about feeling so well and overdoing it. I really hope this is the case for you.

I'm glad that your wife is so supportive and helpful, sometimes it takes a few people to give a lil nudge ( code for nag, at least that's what my DH says ). lol.

Please let us know what his thoughts are.


Hope you feel better soon.

Karen

[patti2957]

It sounds like you guys have the same problem regulating yourselves, finding your limits for different levels of condition. After a few Humira shots (spaced 2 wks. of course:) and still taking 10-11 mg of prednisone I felt so much better I couldn't figure out why I kept hitting the brick wall. Then it occurred to me, thanks to much nagging, that feeling good doesn't eliminate the need to ration spoons. Going full speed ahead until I taste brick is the harder way to pace!
patti

[jdgarwood]

Joel,

I had a gentle reminder from the Pain clinic that I go to about feeling so well and overdoing it. I really hope this is the case for you.


Karen

Karen,

The more I think about it, the more I'm convinced that you're right....I've just overdone it. I'm going to continue to exercise(I walk our black Lab-"Gracie" every morning before work...usually 3 miles. I'm just going to cut the walks down a little and gradually work my way up over the next few months. Thanks for your advice. I'll let you know what the doc has to say. Have a great week!

Patti,

I agree...we need to remember what we're dealing with and take our time working back up to "normal". Take care.

[tmartha]

Sorry, missed these most recent postings - our computer has been going down on and off lately -

Sorry to hear you had a flare-up, Joel. I hope you let us know how you're doing now. Did you talk to your rheumy? I'm glad you walk - but 3 miles - holy cow! Have you scaled back, and has that helped? I agree with all of you about the cycle of pain/meds/feel good/overdo/pain etc. ad nauseum. How many cycles before we heed our bodies?!

It's a lovely 50 degrees here, though cloudy and still snow in many parts of the yard, but today I went out to prune one of the apple trees. Last year this would have been impossible, my shoulders were so much in pain. But now I can do it again. Wonderful! However, as I was dragging the first big limb away, I realized I was already very tired. And while dragging away the second branch, I realized I wasn't going to be doing any second tree today like I had planned, either. And for once, rather than getting down on myself for this, I just said - Oh. Guess this gives me the opportunity to check out the boards. Now - I'm going to go read - outside. Aaaaaah.....

Good day, all -
Tani