I'm new: seroneg except CRP, Hum & Enb not working | Arthritis Information

I was diagnosed with seronegative RA a year and a half ago. CRP elevated for at least 4 years.

Have had pain for over 5 years. I still wonder if I even have RA, but my symptoms are pretty classic now that I know what they are: bilateral joint pain in knees, hands, wrists, fingers, feet, ankles, as well as c-spine. Osteopenia at age 38 (early 40's now). My hands are swollen for 4-5 hours each morning.

I have never had a "flare" (I think). Pain is constant except for sharp finger and toe pains that come and go.

I've done Plaquenil, MTX alone, Enbrel alone, and Humira alone, in that order. Not ONE of these drugs made my joint pain better - not one bit.

I am very blessed that I've had no major side effects on any of them. However, the MTX (injections) only lasted 6 weeks. Doc took me off b/c my liver enzymes had gone up a TAD and, more importantly, my CRP had gone UP while on it.

So after that, I did Enbrel for 4 months. My CRP was going slightly down, but I never felt anything (on days I didn't inject - ha!). Then, 3 months ago, switched to Humira. No pain change.

At my last RD appt., it was decided to stay on the Humira for a full 3 months, get the blood work, and very likely move on to Orencia. I was fine with that until two things happened:

1) I read online that people were staying on Orencia for 6 months or more, hoping it would work. Do most people who are getting nothing from the biologics do longer than the 3 months I was doing? What is the norm for each one? I never read about this, b/c I realize most of you have the drug work for SOME time (hopefully years) and then have to switch.

2) I was supposed to do blood work before the switch. BUT, I got a nasty cold. I only had 6 Humira injections (every 2 wks). I was planning on taking the last one (due last week), but didn't since I got sick. I was on it for 3 months minus 3 days (yes, some were a few days more than 2 wks apart).

So now, do I take the last injection I have in my fridge and then get my blood tested? I feel like it's pointless to see my CRP without being on the drug (or is it still in me after 3 weeks?).

This is the first cold I've had, so do I wait until I'm COMPLETELY over it before I inject? Do I wait until I'm COMPLETELY well before I do the blood draw?

Yes, I'm asking my doc all these questions tomorrow, but I really want multiple opinions, especially when it comes to how long should I be staying on each of these. I am mad about not doing MTX - it just seems like every biologic works better with it, and I'm striking out now and Orencia is the last one to try (doc says no Remicade).

For the last 6 months, I rarely leave the house if I have to walk. I haven't been to any store in two full months (and that was with a wheelchair). I go to Dr. appts for me and my kid, and school drop-off. That's it. I also take an Rx NSAID which helps me to get around the house (lifesaver!). I am starting to go a bit nutsy, needless to say.

I know I have to wait until something works, but I want to make sure I'm dotting every "i" and crossing every "t" on my way there. I hope that the end of this road doesn't end up with none of these drugs working for me and waiting until the new ones come out, but I almost wonder if I should keep postponing the wheelchair purchase.

I don't read much anywhere about people like me - seronegative and/or the biologics doing nothing for them - so if there's anyone else out there, please let me know.

Any and all advice appreciated. Thanks so much for reading all this. :-)

Hello...welcome to the board but sorry you are here.

I have been on the biologics...6 month on humira..with no luck..2 monts on enbrel then an allergic reaction forced me off of it but it was helping my RA. I havent been on orencia.

I never took my humira if i was ill..my RD always told me to make sure all infections were gone before going back with my injections. I am not allowed remicade so I now only take MTX.

Im sorry you are finding it hard to get to the stores..I know the nutsy feeling...all you want is to get out and about like normal and you cant..life can get rather lonely with RA but try to join a support group and explain things to your friends so they understand to a degree whats going on.

So in a nut shell i am sero neg...no meds worked for me too..I have had RA for 13 years..some good days a lot of bad . Do you have a good family network to help you?

Let me know what your doc says

take care xxx

Lisa

Hello Hoosierdog, welcome.

I am wondering what the reason was you were pulled from the drugs so quickly? My RD has said it can take up to 6 months for the biologics to fully work. I understand you were pulled from the MTX because of liver issues... is that why they pulled you from the biologics?
Hi

i think you need to get a second opinion.

I'm surpised that your doctor has you trying the biologic and giving up without adding another medication to it. It sounds like you are likely a person who needs a cocktail of meds. Why is your dr saying no to remicade? why orencia and not rituxan? Why hasn't he added plaquenil, arava or sulphasalazine to your mix?

One shot isn't going to make a difference at this point so I would go ahead and skip it...if they dr wants you to take it you can take it tomorrow. Skip it entirely if you are running a fever

Hi Hoosierdog and welcome!

Well, I am not sero-negative. Although, they are now questioning my diagnosis just the same so it happens even after 14 years.

Like some of the others I have been on a host of meds with no real sustained relief from pain, except for the Enbrel for 9 months. I think it is different for everyone when you will feel a difference in pain. I got my first enbrel injection in the morning that very same afternoon I felt less fever, less pain, and a burst of energy. the improvement went on for 9 months then slowly providing less and less relief more and more fevers started showing up again. A lot of people find success on a cocktail of meds while others go for years on just one like plaquenil or one of the other ones.

In 1999-2000, there wasn't so much talk about my CRP level, just RF level and (ESR) sedrate. The sedrate has always been high. even recently with rituxan, my crp level is better but the sed rate is over 100. my hands are on fire as I type this response, and always are in a moderate level of pain regardless of the meds.

I understand your frustration about the MTX. The same thing happened to me. I attempted it 4 times. The doctors absolutely refused to put me back on mtx for the same reasons as you. I was in so much pain i insisted on going back on the mtx. but you don't want to lose your liver trying to save your joints. I have other meds for ra pain I can't take because it was damaging my kidneys, pain meds and BP meds. so it is a balancing act for sure.

I wonder why your doc says no Remicade. I tried that one too. I usually wait until the doctor switches me to something else. I ask the doctors when will I notice a difference and a lot of them will say 4 to 6 weeks for some things and 12 weeks for the infusions. I did take the Orencia. I experienced maybe a 30% improvement the first 6 months then nothing. I stayed on it another year and a half until the doctor took me off. He said it was causing me more harm than good. So the time line really just depends on the blood tests and the doctors or you saying you want to try something else. I am on rituxan now. flares are at bay like with the MTX but still daily pain and high sed rate. doc says it is too soon to do another infusion. so I am waiting. It can be a slow process to get relief but with Enbrel I noticed immediately. I got lucky.

I hope you do too real soon. Keep us posted. Take care.

HI Hoosier

SeroNeg here too.. enbrel and MTX working well.. no remission but definitely feeling more than 50% better than I was....

I agree w/ those who say that you need a cocktail... one at a time doesn't seem ample to push us into feeling well.. or feeling better

sorry you're here...but there's lots of info on this site.

Welcome. I hope things get better for you soon. There is probably a medicine out there some where that will work for you. I know it does get discouraging. Do you take pain pills? I hate it when I am stuck indoors because I can not walk. I change meds every three months because of allergic reactions. Welcome Hoosier. I'm seronegative too but have done pretty well on oral MTX and prednisone. I don't see my type of story here much and I know you cannot tolerate MTX but my doctor "flipped a switch" in me by combining a high dose of prednisone with my dmard and then had me taper down to a low dose.
I agree with the opinion to get a 2nd opinion. Best of luck!
A few years ago I was doing well on Enbrel and MTX but now nothing is working for me. I've been through Remicade at a dose of 300mg, then went to Humira and I only had 5 injections of it. It was working on the RA but I got shingles and my PCP told me that I would be better off talking my RD into changing it to something else. So we tried Enbrel again and nothing. Now I'm back to Remicade but at 600mg infusions. I've only had one infusion but feel worse now than before. By the way, I'm seronegative for 24 years now.(JRA)

I've got WTBRAF, as well as almost everyone else here beat on the high dose prednisone. 100mg daily at one point to give me relief. A second opinion never hurts but I'd try to give the biologics at least three months to work fully. Some people do get relief from one injection/infusion some never see any at all. I've been one of those that has become difficult to treat. I'm so lucky.

hi, I am sero-positive and have tried lots of drugs. I was on plaqenil for 8 months and it didn't help. I moved on to sulfa and found out I was allergic. Same thing with mtx allergic. Tried humira for 8 months and not much help. I have been taking enbrel for about a year. At first it was wonderful and I felt great! Energy level was back and the pain was gone. I have had lots of female problems and high blood pressure and it doesn't seem to help as much. I also changed dr's and she has given me kenalog shots in my hips and shoulders that help for a while. My rf level is higher now then when I was first dx 4 years ago. SO, I don't know what we will do next. All I know is this dx is breaking my ckbook but not my spirit. I have some good pain pills and muscle relaxers that make life tolerable and I try to get out and just going to grocery store or dr makes me giddy. Have a good outlook and spirit and that makes a world of difference. Also this board has been a great part of my life. So hang in there and keep us posted. Lots of people here are good people and truly care, (including me)>LOL

take care

Thanks so much for the replies. You are all so nice!

To answer a few questions...

The MTX story: Had an RD visit on a Wed., told him nothing happening yet, but that I did feel like MAYBE I was feeling a bit out of breath at the top of the stairs (but I can't pinpoint that for sure to the MTX - stairs are hard). He said to up the dosage with my next shot the next day. My blood work hadn't gotten to him yet. The next morning, he called me and immediately asked if I had taken the shot, which I hadn't. He told me he'd gotten my blood work and that my CRP had gone UP on it (blood done right before 1st MTX while still on Plaqu and then at 5.5 weeks), and that my liver enzymes had gone up. However, when I looked at the numbers, two enzymes had gone up by maybe 5 points. Aren't liver numbers always moving anyway? I do think the CRP going up was really weird, but maybe the Plaq was lowering the CRP slightly *more* than the MTX (I didn't overlap). Hmmm...

I stopped Enbrel simply b/c it wasn't working, and my doc basically said that it's one thing for it to not be helping ENOUGH (you should stay on it) vs. it's not making any difference at all (my case). I take it that some people here clearly disagree.

The no for Remicade was "if Humira didn't work for you, then Remicade won't either, b/c they are so closely related" and "you don't want to be on that one - nasty side effects when there are other options (ie Orencia)." The way I understand it, Remicade also requires MTX.

I thought about getting a 2nd opinion, but just canceled the appt. I really like my doctor, even though I've had some doubts. But then, I have doubts about EVERY Dr.! This guy just spends a lot of time with me, listens to me, etc.

It did seem strange that I quit the Plaq when I could have taken it with Enbrel (or Humira now). I just thought that MTX was really the BIG biologic add-on that would work.

Has anyone here actually had ANY biologic suddenly start working (after NO help at all) after 3, 4+ months?

enbrel and remicade are closely related but you have a lot of dosing vaiability that you don't have with enbrel. MTX takes app 12 weeks to work when you are at a theapeutic dose so to pull the drug after 5 weeks because the crp levels have gone up to me is premature. Most drs would have kept you at the same level for a month and retested both the crp and liver functions.

He hasn't tried mixing up your meds..for example staying on the plaqenil and adding the biologic. Trying arava or sulphasalazine are also options. He doesn't seem to be following recommended treatment protocals.

Just because you like the dr doesn't mean he is the right dr but getting a second opinion is always a good idea when you are not improving..get another perspective.

oh and just an fyi...MTX is not a biologic

Oh, sorry, Buckeye - poor English on my part. I meant to say that I thought MTX was the most popular and best-working add-on TO the biologics. :) Better?

What are some good SPECIFIC, TECHNICAL sites that list the recommended treatment protocols? I feel like I have read about RA for years (because I have, since I thought that's what I had 3 years before I was diagnosed), I know enough to be questioning my doctor and not blindly following him, and yet I'm still in this mess.

This dr. is also highly recommended by someone at the Arthritis Foundation, isn't young, and was also recommended by two other doctors (who were fabulous). I research doctors more than the average Joe, but it is still a shot in the dark.

One other question: I have had x-rays of my hands (usual RA views), which show no problems yet. Do most of you have MRIs or bone scans as baselines done at this point? I know x-rays are the last to show the damage. (This goes along w/the doctor question as my portion of all that at a new doctor would be lots of $$.)

Not only has typing this much in two days KILLING my wrists, but I feel like the last year of my "treatment" has been a complete waste of time and I will be starting back at zero. So glad I posted! (That was MAJOR sarcasm!

Remicade, Enbrel, and Humira are all in the same class of drugs, TNF_inhibitors, but just because one isn't effective doesn't mean another won't be. I had great luck with Enbrel for about 4 years but then it faded out and I was put on Remicade at a dose of about 300mg per infusion. It didn't do much and I was switched to Humira which I believe I told you about in my previous post. Now I'm back to Remicade at a higher dose. The nice thing about infusions is that the dosage can be tailored to fit the patient. If you're a little on the large side as I am, then it's perfect.

You can look here at some RA treatments:

http://www.hopkins-arthritis.org/patient-corner/druginfo.html

Bob

here's a link to the ACR's treatment guidelines

http://www.rheumatology.org/publications/guidelines/recommendations.asp?aud=mem

Thanks, Bob and buckeye.

Bob, same here as I've gained 40 lbs (FORTY!) since this nightmare started. The fact that the infusions can be tailored up is a definite plus.

buckeye, your link was very helpful. The most imp. parts to me (the bolding is mine, both at bottom of page 9 in PDF):

"The TFP also recommended use of anti-TNF agents (interchangeably) in patients for whom prior methotrexate therapy was used in combination, or if sequential administration of other nonbiologic DMARDs led to an inadequate response with at least moderate residual disease activity irrespective of prognostic features."

My RD *did* follow that guideline. Also, on me saying that MTX was the DMARD of choice to add to a biologic:

"Although the majority of clinical trials have focused on adding biologic agents to methotrexate, no distinction was made by the panel regarding the decision to add biologic agents to methotrexate or to substitute for methotrexate with other nonbiologic DMARDs."

Lastly, it says liver enzymes should have been higher than twice of normal to take me off of MTX (middle-right column, page 10 of PDF). I wasn't close to that. How long 'til people see their CRP drop on MTX? Six weeks sounds too soon to stop from reading other responses here.

I still need to know how long to stay on the biologics if you are getting no pain relief from them, and the CRP level (my only marker) is not normal yet. (Would still love tech articles on that.)

Staying on Hum for now. Thx again all for help. Wishing you all a low-pain day! :-)

I am sorry to hear you are not responding well to meds. I am also serognegative RA and have had it for about 3 years. It took 6 months to get a diagnosis. I have taken Plaquinel, methotrexate, pred.,arava, remicade and enbrel. The plaquinel helped with my fatigue, I could at least get out of bed but it didn't help the pain too much. The methotrexate didn't help at all but to make me feel worse and the remicade didn't work. I started enbrel in Oct. of 2007 and it has worked well. It took a full 3 months before it helped with the pain. I still have a lot of pain, just depends on the day. I don't know if this is just how it is or if I should be shooting for more relief.

I have found that most Rhuemys like to tell you that if you have no elevated ESR than there is no inflammation and so the pain you have is not RA related. I find it really hard to believe that the pain in my joints, the swelling in my joints and tissue surrounding my joints is not RA related. I have terrible night sweats and hot flashes and am not sure if it is related to the enbrel or other meds. I have developed pain in my shoulder and in my jaw. Botox injections in my jaw helped for 3 months so will have those again...too bad it's not cosmetic. Heaven knows I could use it, I have aged so much in the past 3 years!

I guess I don't have any answers for you, just want to let you know I too have gone through all the pain and inability to leave the house or even go to the grocery store. I am able to function as a fairly normal person with enbrel, so maybe there is hope. I remember wondering if anything would every help and after a few months on enbrel (I think the 7 months of remicade injections also helped with the enbrel) I have been able to go on short walks, shop and lead a better life than before meds.

Hang in there and I personally believe you need to give meds more than 2-3 months to work. All my docs told me to try for at least 3 months because it takes that long to get up to full efficacy.

Hi, Hockeymom27. Thank you for the support. It does sound like you have walked (or sat!) in my shoes. I have actually had dreams of going to the grocery store and surprising my husband when he came home from work. I used to dream of going back to aerobics; now I just want to buy enough to get in the 10 items or less lane. :-)

I am SO thankful that my CRP is elevated, ironic though it may be... That was finally my PROOF that there was something there. I've told people that maybe if I put some fake blood on my body, people might remember those parts hurt!

I am definitely giving the biologics 3 months. I cut off Enbrel at 4 months exactly, but I had missed one week in the 3rd month (sick). The Humira I was quitting a little early, but have decided to stay on it another month. I just don't know if you really need 6 months on these if they're doing NOTHING.

Thanks again, and I hope you have a good day! :-)