until it is decided it is not the right one to get you into remission?
I've been taking enbrel since March... and I still have very swollen joints... and pain.. and slowness and stiffness..
OR.. kick in another DMARD?
I hate taking this stuff.... but I want to return to my old self... I miss babs.. :(
ughhhhh....swollen anything these days is a pain the arse... I am not on a biologic, but I am interested to see what advice and answers you will receive.. I do take plaq, maybe doc will add methtrexate to the mix, when I go to appointment next month...then again hopefully maybe by next month I won't need it. I hope plaq works soon.
Sorry for you swollen painful joints...I commiserate
Have you brought this up with the RD? What does he say? I am assuming the Enbrel is the first one you have been on. IF that is the case-there are still quite a few. I would ask about Huimra or one of the others. Are you having to take prednisone to get through the day? That is one of my doctors red flags. Short term pred is fine, but long term means that something isn't working.
6 Months Babs. I was on Humira 6 months . then switched to enbrel....now nothing....nothing is helping. Have a word with your RD a different one might work for you. Sorry your feeling so yukky...I've never taken pred... That one, I refuse.. May seem silly to some, but that mediation really scares me??
Does that mean that because I am so functional without pred, that I shouldn't complain?
I am not in remission... I hurt every day.. some days more than others... but I AM functional.. should I count my blessings???
I haven't brought this question up w/ RD... but in February when I see him I will.. ..
I will admit I'm scared of trying something else and having it not work at all.. or running through all the bio's with no better results than now.......
First off, you are not complaining. You are stating a fact-you are not feeling as well as you should/could. Talk to you dr. And I would not wait until Feb. If there is a chance you could feel better before then don't you want it? He'll assume that you are feeling ok if you don't speak up before hand.
Pred is a love/hate med. I ended up using it for years due to chest involvement. It is definitely a "band-aid". It doesn't solve the underlying problem but it can help for a bit. If your Rd does offer a short term pred option(like a 20day taper) that might be a good indication to you as to how well your med is working. If there is improvement, then it means you have swelling that can be controlled. That is one reason why RD's prescribe it at the beginning of a diagnosis.
I also wont take pred, never have and never will....its long term effects scare me. I have enough problems without more side effects. Taking pred doesnt mean you function any better and complaining that you hurt is your right on here...lolBabs - I haven't been biologics, so cannot give any advice, but I know that my opening salvo of MTX, predisone, and plaquinel only gave me osteoarthritis. Posts like yours are what make me question what is going in general about RA. I hope something kicks in or you are able to get your RD to add in something as these recent threads about multiple combos of medications is sounding helpful. Plus it fits in better with the "hit it hard and fast" rule, so I am puzzled why there is this holding back of trying combos. Huggles ~~ CathyHi Babs - I would think after this long, the enbrel/mtx mix should work, so it's good that you're bringing it up at your next appt. I can understand your feelings about not wanting to move thru the biologics too quickly, so maybe a 2nd DMARD is the answer. I've been on enbrel/mtx mix for a little over a year now and it was working great until last month, now some achiness and pain is coming back most days. Minor, but a difference. My appt is in January and need to ask the same questions. I find it difficult to determine what is a good balance between coping well and having a life and being on too high of dosages.
Happy Holidays
I can see the swelling, rocckyd.. my wrists, fingers, ankles, knees...
for a very brief time, I had alot of reduction in swelling. and a huge burst of energy! but it was very short-lived.. so, I am aware of how good... "good ".... can be
I am living alot of stress these last months.. preemie grandson who was struggling. now - thankfully - doing much better... the economy.. my business is financial consultant (stock market) ... my husband's job/future ... etc...... and I'm generally a worry wart!! LOL but I wonder does that contribute to my quality of life here w/ RA? the worry? the stressors? am I fighting against my meds... IDK how much is involved w/ this disease? does anyone?
lots of questions!
I think it's around three months for biologics. Most of the info you find on them states that people who are going to benefit from them experience significant relief by around three months. I've been living on nothing but prednisone since the last day of July. I had been on 5mg daily which is not bad, I could have stayed at that and been fine with it. But then this flare...and the doc just threw 100mg of pred and humira and told me to come back in three months. After a few weeks tapered to 75mg...then 70mg..then all hell broke loose.
Stress does play a large part in the activity of this disease. I notice that when I get stressed the stiffness and swelling is worse. That and when I don't get enough or I get too much rest..I feel crappy too. I didn't think you could rest too much with active RA but I guess I was wrong. Stress will also fight against the meds as well. Your body can release more white cells as a response to stress...causing what is called a shift-to-the-left I believe. The increase can result in more inflammation because inflammation is mediated after all by white cells. My white cell count runs high from the RA and from the prednisone which causes white cells that are marginating in pools on the walls of blood vessels to be released into circulation which won't help inflammation either.
Bob H.
24 yrs with RA and no pred...
give most of the biologics 3-6 months...rituxan you need at least 2 cycles which means 6-12 months.
If you haven't seen anything from enbrel since March it is time to make a med adjustment. Either adding in another med, upping your dose of MTX, increasing your enbrel (3 x per week or 2 shots in 10 days), or change biologics
6-12 months for Rituxan? I was told by a rheumatologist last week that you did the initial dose, then another in two weeks. If you see relief then the next dose is given when the medicine wore off. That sounded a little too good to be true when he said it. Then again, he didn't want to mention Orencia because it was too new and he had only used it once.
Anyone know much about Orencia? Looks like either that or rituxan are my last options until actemra is cleared by the FDA. Well, I'm going to try remicade again as soon as my sinusitis is resolved but at a higher dose than previously. I think 5mg/Kg is going to be that start and will work up to as high as 10mg/Kg if necessary or toy with the dosing schedule.
Bob
Babs, I truly believe as does my RD that the goal should be clinical remission. Without that as my goal I would have stopped and been satisfied with just feeling a little better. I've been in clinical remission for about 14 months and the difference is astounding. It took me 4 years to reach CR. I stayed with each med about 6 months to give it a fair try. Remicade I stayed with longer because I was headed in the right direction until all of a sudden it failed completely.
I think it's wonderful for those people who haven't had to take Prednisone but for me Prednisone got me up, walking, and out of the house. I fought it for 6 months and I was literally housebound due to inflammation and swelling. My RF was over 1,000. It hurt too much to ride in the car. If I was able to get in the car I couldn't get out. Nothing was working until I started Pred. Once I was back ambulating I started Enbrel. MXT and AP therapy had failed me. I had reached rock bottom with the disease. I would only use Pred. as a last resort.
I'm one of those unusual stories.....I restarted Humira after Remicade failed with an increase in MXT and added Sulfasalazine. I'm on two DMARDS. Print out that article on combo therapy and take with you to the RD. Talk about increasing your other DMARD. Good luck and I sure hope you find the right combo.
I don't have any answers Babs- but I hope you can find them soon.
Bob- my rheumatologist said he sees enough people responding after the second cycle to try it..especially considering that most people who are on rituxan have already failed most of the oher options. I can't say I'm in remission but my stubborn case has at least stablaized and it took the second cycle to get that waythanks, all.. and if there's more info out there.. bring it in!!
LinB -- I am taking it... taped to my forehead so he sees it FIRST!!
I feel my RD looks at the numbers.. you know what I mean.. the numbers he gets when he ads up your inflammations and your joints and all the current symptoms... and that he doesn't look at ME.. or even listen sometimes.... *sigh*
i do not really have any answers. i just know my doctor does not like to switch me because i am so difficult to treat. i usually have to have an obvious allergic reaction before he will switch me. sorry..... w.w.babs-can you see another rheumatologisti have been on enbrel, kineret, and now remicade. i had problems with gold --- i micro hemeraged. can't spell. is anyone on gold anymore? steriods too long at least 19 years back on them now for shingles. and yes they make your white count high. and exercising some does make you feel better. w.w.Thanks buckeye. I like you, have nearly failed everything else as well. I've been on gold, mtx, minocin, plaquenil, imuran, kineret, enbrel, remicade, humira, back to enbrel, and now it appears that I'll be trying remicade again at a higher dose. That leaves what arava, rituxan and orencia for me to try? Sulfasalazine might also be an option at some point but the RD I have now won't consider it.
I don't think they really use gold anymore at all. I haven't heard of it for a long time. Didn't those injections hurt like hell? They put numbing in mine too and they still burned like fire. That was some thick stuff !!! Great...now my butt is remembering the pain from those things.
Bob
buckeye... I know I can see someone else... and if I didn't think that potentially would get the results w/ this dr...
He doesn't need to be my BFF ..... but if I talk louder like I did about the Sjogrens ... he does listen...
what's so bad about sulfasalazine?
he doesn't have to be you bff but he needs to look at you and listen to you. communication is so very important when dealing with a chronic diseaseTo date I've had no problem with Sulfasalazine and I've been on it for 2 years. Lindybob, i took all those meds and that sulfasalazine one too! my gold was in pill form no shots. w.w.I believe the RD set aside my SS symptoms to address the main culprit of my discomfort and pain... the RA... now, he feels he has some handle on that, he has given me meds to reduce my issues w/ sjogrens...
He had also told me that remission would never be mine as I smoked.... well I've quit... for two months now... and that come February, I believe the smoking issue should be lessened exponentially to allow the enbrel and MTX to work..... IF not.... I want something more....... I want a second dmard or a diff bio.... I want to push the envelope.. to feel better... or at least try to feel my best.......
thanks.
babs
Hi Babs,
Yes, I was always told 3 or more months as well. With Remicade I was told to give it 4 infusions. With the rituxan I am on, I was told give it 3 months by the RD. so it depends on the drug and the RD's opinion about the drug.
I am sorry the enbrel didn't help. It helped me immediately. Within the first week. I woke up one day thinking I could go jogging again. I got on my running clothes and soon found out I could no longer go running. but I felt that much beter. My mind thought I was ready. As you know already, it is different for everyone. for me the enbrel was my miracle drug, especially taken with arava. however, nothing has put me in remission. a clinical remission with sed rate and rf factor but always very short lived. the enbrel helped me for 9 months. but I continued on it for 2 years then another RD put me on it later down the road for another 2 years. no success at all the second time around. but I am always hoping to recreate the relief I felt on enbrel. I had loads of energy and got to be free and see a glimpse of myself for 9 months. but a remission is defintely the goal. but also think the stress makes it difficult for meds to work properly. gotta find a way to zone out with the stress. I know that is so much easier said than done, a preemie grandson, how can you help but to be stress even if you mask the emotions they are still there. at age 7 my daughter developed horrific violent tonic clonic seizures. I used meditation tapes to de-stress but underneath the surface her seizures bothered me greatly. I was in flare-ups often. so just through personal experiences I am led to believe stress brings more pain.
what is the doc saying?
Just what I said above.. first he said I needed to quit smoking..
I'm going to give him til Feb appointment..
Get me.. I probably feel tons better than many of you... but I'm not happy w/ better... I want to be best..... I want to be able to exercise w/out increased pain... this sedentary person in my house is NOT me....... and I don't want to be her.
My Rheumy's guideline is 3 months too. Enbrel did absolutely nothing in 3 months, going into third month on Remicade and still nothing, think it is actually making me worse, my swollen joints have doubled in size and number. Hang in there, I still feel there is a right drug out there for everybody. I guess communication is not important to my doc as I rarely ever get phone calls returned. I called last monday to try and get a message to her and have heard nothing back yet. I used to make a pain in the ass of myself until I got an answer but I'm so worn down now that I just really don't care anymore. The worst part is that I could leave, but the handful of other RD's around here are booked solid and it would take months to get in.
It's been three months for me on Enbrel for the second time. The only thing that looks good is my sed rate. And I don't have a lot of swelling. But I am in quite a bit of pain and the stiffness is terrible along with the fatigue so I know I'm not well managed. That and I'm still relying on between 45 and 50mg of pred to make it through the day being a tiny bit comfortable. The side effects are piling up like a car crash though.
Bob
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