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You read my mind. I was just wondering what is the appropriate time frame before escalating treatment to the next level. RA since 2005, + RF and +anti-CCP with Sjogren’s. In 2009 had a year with no symptoms and was taken off DMARDs. After a year, symptoms returned with a vengeance. I had relocated to a new area. Went to new GP who referred me to rheum. doctor. Put back on DMARDs and prednisone and for a year had very little control of my RA. I generally have at least 2 or 3 joints that have active inflammation; with swelling, redness, heat, limited mobility, and varying degrees of pain. I am lucky to have 2 days per week without these symptoms of disease activity. I started Methotrexate last year, and have not noticed much improvement, my exhaustion is constant, and overwhelming most of the time. When I would report pain to rheumatologist, he would tell me to take more prednisone (I have been on doses as high as 100 mg oral daily) never had any relief with anything less than 40 mg, and even then it was very slight. I never got “moon face” or gained weight either. My rheumatologist would “threaten” to order biologics when I would complain of pain. My answer was always “if it will get rid of the pain, that’s fine”. He never did order biologics in the 2 years of constant flares under his care. Recently found a new rheumatologist who repeated all labs, and told me that I no longer have Sjogren’s (hooray?!?) unfortunately I have read that it is not uncommon for a patient to become sero-negative after having a positive test and if this happens, a lip biopsy is done to rule out the Sjogren’s. New rheumatologist also believes that I am a “non-absorber” of prednisone (though my liver is fine) and changed me to prednisolone which I started this week. Currently, moderate flare of both wrists, right achilles tendon, thoracic and lumbar spine painful,stiff, spasms. I generally have 2 to 3 hours of morning stiffness; but I honestly believe that the stiffness never goes away, but rheumatologist has bullied me into choosing a number of hours telling me that there is “no way that you are stiff all day”. I have always felt that I was receiving sub-standard care. This is sad because I am a registered nurse, and should be able to advocate for myself. Well, there are many issues with being your own advocate if you are a nurse. First of all, I can’t complain too much about pain, because I fear being labeled a “drug seeker”, which would be a career stopper. I am very aware of the backstage conversations and the manipulation of patients with threats of documenting something in their medical record. I feel as though I have been straight jacketed and duct tape placed over my mouth. My rheumatologist had just ordered Humira last month, after I had already decided to find another rheumatologist (too late). New rheumatologist told me that I have been “undertreated and poorly managed”. He increased my MTX and changed steroid to prednisolone. He said if no improvement by next month, then we start biologics. Unfortunately, I have had ocular involvement with histoplasmosis in 1995;long before RA. Treatment that I received was oral antibiotics, ophth. steroids and oral steroids. Unfortunately, NIH states that ocular histoplasmosis is only effectively treated with laser.
I am not sure what this means for me as far as Biologics go, and I guess I’ll cross that bridge in a few weeks at my next appointment. I am fortunate. Every time I have reported my pain and the frequency of my flares, I am told that I have no erosions. Though I have only had one dexa scan and one set of hand xrays in the 8 years since diagnosis, so who would know?
Kim was diagnosed in October of 2011 and within a few months we knew she needed to be on a biologic. It wasn’t an easy decision, what with the potential side effects and all, but we knew it was the right one. She declined so rapidly from October of 2011 through March of this year that we knew a biologic was the next step. She had been on DMARD’s MTX and Plaquenil (and still is), but they were not helping to slow the disease down. So she has been on Humira since March of this year.
We did see a noticeable improvement with the Humira. Many of her symptoms went away and she actually regained function with certain tasks. However, due to shingles and now a herpetic outbreak in her mouth her Humira usage has been limited over the last several months. All this to say that for us the next question to ask is not about using a biologic, but rather about what do we do next. Her pain levels continue to increase, more and more joints are being affected, stiffness and range of motion continue to be problems, numbness of toes, etc. So we are planning on serious talks next week with her rheumatologist to discuss our next steps. Injectable MTX? Up her level of Humira? (doesn’t seem likely due to her battles with infections recently.) Switch to Enbrel? Decisions, decisions.
Hello,
When I started Sulfasalizine, in February, I got Shingles within 4 weeks. My Rheumatologist and Hematologist recommended I start Immunoglobulin Infusions so I could continue RA treatment. I have been receiving the infusions every 8 weeks since June and have tried two more DMARDS. I started Cimzia (a biologic) last week. The Immunoglobulin Infusions are very expensive ($13,000-$15,000 per treatment) of which I pay $300-$500 after my insurance. I have not had any more infections or shingles since going on the infusions.
Hope this helps,
Erica
My symptoms seem to be well-treated with methotrexate and planquenil.
However, these seem to be causing liver damage.
My rheumatologist is recommending that I switch from current therapy to a biologic (Humira).
However, the new guidelines in the article do not indicate that liver issues (with the exception of hepatitis) warrant the switch.
Should I query the doctor on this point? She often takes questions to be a challenge to her authority, but it is MY body…
Hi Michael. Hope you are keeping well. Just wondering if you are still happy with your decision not to start on the biologic in view of your dual OA and RA diagnosis and the confusion that causes with treatment options and pain sources.
I have questioned the use of a biologic in my care for a number of years now. In fact, it is the reason I have not seen my rheumy since May 2012. It was desired that I should start Humira. I take plaquenil, and 4mg of prednisone daily. I also take an anti-inflammatory twice a day and a weak, non-opiate pain medicine. I was on Methotrexate for 3 years, but went off in May 2012. Had incredible stomach pain, nausea, bloat. I was treated one time for the H. Pylori bacterial infection. I believe I still have it, and the mtx was helping it to proliferate. I now have an appointment with a gastroenterologist this week. We will see what is in there. In the meantime, my RA symptoms have diminished(!?!). Why? Who knows? I went to see a chiropractor because I could no longer stand the pain in my neck and back. I have always been told that you don’t get RA of the spine. So, know one checked. Now I know I have extensive damage from osteoarthritis in my spine. I have both types of arthritis living side by side of each other, confusing everything. So, I am glad I haven’t done the biologic, yet. I may still have too. But if half of my pain will not be helped by the medicine, why should I try it? It can cause serious side effects that I don’t have to worry about now. I may not have helped any of you, but I know I am glad I didn’t jump into the Humira thing without thought. I am happy with my decision, so far.
Ah this is an easy question to answer. Though not easy to get to an answer. I started biologics when the prospect of life with current and worsening disease activity was worse than potential negative side effects of the biologic.
Certainly there can be some serious negative side effects, but I’ve been lucky and the biologics I’ve tried caused me little problem. I’m on my third biologic now. The first one wasn’t effective enough and I would continue to flare and have worsening disease activity. The second one started off working fairly well, but stopped working after a few months. I just started my third. I’ve not finished my loading doses yet so it is really too early to judge. I have hope that this new medicine works.
Has anyone started Pfizer’s recently approved JAK inhibitor?
Rarap-
Your post really really scares me!! I have been on three DMARDS without sucess. I started Cimzia (a biologic) last week and I’ve had two good days in a row (which is rare). What scares me is the thought of this biologic failing and having to switch to other biologics. Do you know if it is common that a biologic eventually fails then you have to try another? Also, what happens when you run out of biologics? Is there anything else?
Yikes! I’m only 46
Thanks
Erica
Erica, I’m sure RaRAP will respond later, but here’s a link to one of the articles on this site that discusses that topic in case it helps. http://www.rawarrior.com/antibodies-lessen-effectiveness-of-adalimumab-humira/ It can’t be predicted, but it does happen often. There’s no way to know if that will happen to you, so please don’t expect the worst. But you are right that we need more options! There are many of us who’ve tried many things with no help. That’s exactly our message to the FDA and industry: we need more options; this box has not been checked…
Thanks for the information Kelly. Your site has been my only reliable reference since my diagnosis. Thank You – Erica
Kelly, do u take a biologic ?
Hi Erica,
It has been a while since I posted on this site. I used to post a fair amount. RaRAP stands for Researcher and Rheumatoid Arthritis Patient. I’m a scientist that works in drug discovery at a major pharma company. Most of my work has been focused on oncology, but I’ve worked on a few autoimmune projects. Surprisingly there is a fair amount of crossover between the two. Just look at methotrexate. It started as a cancer drug to replace aminopterin (the first oncolytic). The latest in the line of autoimmune/cancer crossovers are the new batch of JAK inhibiors working their way through clinical testing. Pfizer just got their JAK inhibitor approved by the FDA.
Before I go on, I just want it known that this information is my own and is in no way the view of my company. It should also not be used as medical advise. Rely on your doctors for that.
Ok, now back to your question. The link that Kelly provided was right on the money. One reason for a biologic to stop working is because of something called immunogenicity. Immunogenicity occurrs when the body recognizes the antibody (drug) as something foreign and it creates anti-drug antibodies to attack the drug. This can result in faster clearance of the drug from the body and lower drug concentrations. It is my opinion that the newer antibody drugs are a bit cleaner that the older antibody drugs. Scientists know a lot more now about what types of things can increase the immunogenetic potential for new antibody drugs, and they try to eliminate or minimize this when they’re engineering them. They’ve also gotten better at making fully human and humanized antibodies. It is thought that these should be less immunogenetic than those that are chimeric or murine in origin.
Don’t be scared about a drug losing effectivness. Right now we have several other anti-TNF drugs you could switch to if your doctor thinks it appropriate to do so. There are also new medicines being developed right now. There is no way to know if you’ll lose effectiveness of a biologic. Everyone is different. I know several RA patients that have been on Enbrel for 10 years and it still works well for them. I was on Enbrel first, but I don’t think it did enough for me. I’m now on Cimzia. While Enbrel and Cimzia are both anti-TNF drugs, they are very different. Enbrel is a TNF receptor attached to the Fc region of an antibody. It basically acts as a molecular smart sponge that sucks up excess free TNF. Cimzia is a pegylated FAB and it binds to both free and bound TNF. In my opinion Cimzia should be more effective and less prone to immunogenicity since it is a FAB. A FAB is basically the business end of an antibody without the Fc region. The pegylation of the FAB is necessary to help keep the drug around longer in the body. PEG stands for polyethylene glycol. Basically a polymer they stick to the FAB. There is a school of thought that thinks the Fc region is a potential source for developing immunogenicity. So without it you may have less immunogenetic potential.
Now immunogenicity is a big subject in and of itself. You can develop anti-drug antibodies that don’t do anything to the drug. You can also develop them that can really chew it up. You’ll just have to wait and see and keep up the communication with your doctor and let him/her know if the medicine is working or not or is not working as it once did. Your doctor will know what to do next. If you do end up running out of options, take heart in the fact that there are a lot of new medicines working their way through clinical trials for RA right now. Perhaps one of these will be the breakthrough we’ve all be hoping for. Stay strong and don’t worry.
Sincerely,
RaRAP
Hello Erica,
Don’t be scared, I was diagnosed at around age 35 and went quickly through just about every med they had and finally got on biologics and a few of those did quit working so well for me then they put me on the infusion IV of Orencia at 1000 mg. dosage. Then my Medicaid decided they would not pay for that dose and had to change to another cimzia and that one didn’t work so well for me then finally they came out with the self injections of Orencia that Medicaid will pay for and they are only 125 mg. a shot and you get four shots a month. They don’t work as well as the IV did but they help more than any other biologic I have tried. Hope that helps maybe ease your mind a little bit.
The only problem I am having now is the injections not working quite as well as the IV’s did at the higher dosage and now I can’t find a Rheumatologist that will accept Medicaid anywhere in about 100 miles from my house. Mine retired on me!
I was diagnosed in April 2012, after about 6 months of symptoms. Seronegative, positive anti-CCP (85)and x-rays showing mild erosion in my wrist. I am currently on triple DMARD therapy (mtx, plaquenil, sulfasalazine)and luckily I’m almost symptom-free except for fatigue. Does triple DMARD therapy eventually stop working? At that point would biologics be the next step? I’m still so new to this that any advice/info would be appreciated. Thanks Kelly, for all of your efforts to spread awareness of RD.
I’m conflicted on this at the moment. I have been having intermittent flares all summer after being in total remission on mtx for 6 months last winter. The flare is not constant, and 3-4 days it is only minor, but when it is the ankle or knee and it’s swollen to the point of being unable to walk, that’s a real problem. For example, today I feel fine, but if I did some real physical work (like my job requires) I would be far from fine. Thats a problem. I’m still awaiting Enbrel assistance approval. I had a rheum appt last week, and I see a fellow at a teaching university along with whatever attending dr is on at the time. It always seems when I have my 3 month appt, there is no major swelling at the time. At this appt the attending dr came in with the consult with the fellow dr, and asked her “well, if she has no swelling right now, how will you measure the progress of the biologic” I thought that was an interesting question. That means that they have to rely solely upon my reported symptoms. It’s very hard to coincide an appt with visible swelling. I just hope the risk of going on Enbrel is the right decision. Often I feel that the rheumatologist are swinging a stick blindfolded. Especially since my drs also have only done one set of xrays. Last year I asked about it, and they said that my hand x rays done 3 years ago were fine. I said “great, but the majority of pain has been in knees and shoulders” he said, “good point, but xrays of those would be inconclusive” I don’t know what to do, except just try it out, and see what happens. Seems to be a gamble. The only thing in my favor is a definitive anti ccp test of 250 and greater. It’s hard to argue with that.
I just talked to my RA doc last week about going on a biologic. My husband went with me (it’s good to have an advocate with you at appointments)and he asked tons of questions that frankly, my brain would not have thought of.
I was on Plaquenil with Keterolac shots for about 3 years. With several times of taper off Prednisone. I was doing great and then BOOM! I am beginning to understand that nothing is forever with RA.
I then went on Methotrexate injections and my body could not tolerate it. I was only on it for 3 months and my liver enzymes skyrocketed and I had chronic headache/migraine and was incompasitated with lethargy and weakness, plus I developed a chronic cough. All that plus major, major flare ups. Go figure that I would be one of the few that couldn’t do the “foundation” drug of RA treatment.
So now I am back on Plaquenil, Prednisone, and Keterolac until my insurance authorizes a prescription for Humira. I also tested negative for TB (IT IS A MUST TO BE TESTED!!!) I had xrays of hands and feet and a bone density scan. Waiting to hear about all that. My RA doc also had a Vectra D test done. It is new. Has anyone ever heard of it? It is supposed to be much better for diagnosing the stage of the disease and help in determining treatment.
Anyway, my heart goes out to all of you. I’ll let you know how my time on a biologic goes.
It was a tough decision, but I need to do something!
By the way I am getting a second opinion on Jan 8th. I am very curious to see what their take on everything is.
Cathy
Spokane, WA
I would also like to add that a person whom I’ve known for many years (older customer at my business and aunt to a friend) came over to vist this summer as we both, through friends, realized we had RA. She told me her story of 40 years of living with RA. 10 years ago she started on enbrel, and it was her miracle drug for 5 years, untill she got cancer. She had a clean screening before going on it, and developed it within the 5 years. I did not need to hear that, it’s made me more nervous than ever. I know it’s not a side effect often talked about, but it is listed, pretty predominantly on the side effect list right below infections etc. It truly IS a hard decision to make…
There is two newer JAK’s in the pipeline. One by Abbott I think only addesses 2 f the 3 JAK’s. Then there is a Belgium version in Phase 2 trials and is best of all without many side effect – it only addreses 1 JAK.
I’m in the process of changing over from methotrexate and plaquenil to Humira. The biggest reason is side effects, although my rheum md and I disagree on the cause. He thinks my problems may be due to the mtx, while I find them listed on the side effect list for plaquenil (hair loss and irregular heart beat). While I have been fortunate (and yes, I just knocked on wood) and my symptoms seem pretty well under control*, I have been having problems with fatigue, and starting once again to have some joint pain, so I really felt ready for the change.
I know that overall, I have been luckier than most with my disease progression. Still, I remember seeing my great-grandmother who was crippled and deformed by this disease, so I have an incentive to be pretty aggressive in treating it.
*What I mean by ‘well under control’ is this – little to no pain or joint swelling.
My route to biologics has been much faster. I first saw a rheumatologist in March after some chronic joint problems became acute. All my labs were normal, but x-rays showed bone loss around the joints in both hands, I had noticed substantial fatigue for months, and the Frankenstein walk in the morning had cropped up. I had NO idea what that was about. I was put on methotrexate and prednisone right away. By late September my improvement was so-so, so I started Humira. It made a lot of difference, but the side effects were no fun, so I was off it for six weeks and have just started Enbrel.
I’m keeping my fingers crossed that I can tolerate Enbrel. (Actually, I’m keeping them crossed all the time, as my index and middle finger now overlap.) The Humira lifted the fatigue, the joint pain was better, a bad elbow was getting closer to opening fully, the fire in the knuckles was damped down, and Frankenstein was leaving sooner in the morning.
I haven’t agonized much over the decision. The list of side effects is indeed scary, but the risks of untreated inflammatory arthritis are scary, too. The biggest risk of leukemia & lymphoma seems to be in young men with Crohn’s, which is not my demographic, and a recent study implied that biologics do not raise the risk of cancer, although I’m sure another study will find just the opposite next week. I feel lucky that my doctor is willing to proceed with aggressive treatment in the absence of positive blood tests.
I get hair loss too on Metho. Just gone back on it after a long break. Had to as the RA was eating me alive and has got to my spine. The nodules near my elbows have come alive tho on both elbows and twice size of a thumb nail.
I see Rheumy 27 Feb. next year and no doubt he will discuss Biologics with me – could be Orencia and I have been doing ‘research’ results/side effects. Hope I can eliminate the Metho then.
Saw some article on biologics that after say 6 months if it is working you can then miss the next month’s injection. They work longer with less for some people ?
My best friend nearly died on Enbrel – great stuff and stopped her pain but after 1yr. it got to her nervous system and shut her down Ambos. flew her to city hospital unconscious but she did make it.
Anyone on Orencia.?
I’m on Orencia (been on it for 7 months). Other than a slight injection site reaction, I am tolerating it well and it has helped my RA symptoms (it’s my third biologic, I tried two anti-TNF drugs and neither worked very well for me). So don’t be afraid to give it a try. Good luck.
Aussie2′ I have been on Orencia for over a year. I started after having some bad experiences with Enbrel , Remicade,and Humira, they worked but I had bad allergic reactions. Also had a pneumonia with Cimza. I had never had any problems with any meds prior to RA. Anyway, I began with infusions and now take weekly injections. It takes awhile to get on board and I get the best relief from RA when I combine with Medrol and, Methotrexate but, my liver started to protest. So now I am still on Orencia ,Medrol, with Limbrel,Tramadol, and ibuprofen with some relief and waiting to see where I go next. I haven’t had any big reaction to Orencia just tired after taking and sometimes a headache. I hope this helps and feel free to ask me any questions. Best wishes, Ann
My rheum-doc has been trying to get the infusion center to take me on for Remicade for over a year, now. The infusion center has 1) contacted my pharmacy and told them to deliver the med to me – twice [this should NOT to be done!], 2) not called me, 3) not returned my calls [several times], and 4) not called me back when I could not come to the phone [the day after MTX I spend in the bathroom and cannot get on the phone].
At this point, his office will try to locate another infusion center that will administer Remicade elsewhere in my geographic area and try to get an appointment with them. I have such a good relationship with my rheum-doc, and this has been the only bad experience I’ve had – other than having RA that is slowly and relentlessly progressing.
I’ve had one knee replaced and I’m negotiating with my orthopedic surgeon to get the hip on the same side replaced [just HAS to “try” cortisone injections first – never work, but he has to try them]. This indicates to me that my disease IS progressing and is not responding very well to the “standard” treatments I’ve been put on. [MTX, hydrochloroquine, off MTX and onto Arava b/c of side effects of MTX, off Arava b/c of inadequate response and back to MTX. I’m having some response to MTX, but not adequate.]
I’m very discouraged about the infusion center’s lack of response. I asked one of the assistants on Monday when I had my appointment if I were the only one this happened to. She shook her head and said, “I’m sorry to say, but no. Nearly everyone has this kind of problem.” My rheum-doc wanted me to use this infusion center because it is near his office and if I have a reaction or poor response, I can be brought directly to his office or to the ER across the street. BUT, we’ll be looking for another one. Frankly, I’m ready to see about getting a job in administration at the first center. Maybe I could straighten it out. Realistically, however, I couldn’t hold a “real” job under any circumstances anymore.
And so it goes. Just another day of Paradise with RA…
Elizabeth
After 25 yrs of RA, i have been on about every RA drug available. i am currently taking MTX by injection & 10 mg of prednisone. I have tried 5 different biologics. Three did not work at all, and 2 gave me tooth infections. I lost a tooth over 1 infection. So, a word to you all, please do not think these will always work. In fact, if you read the biologic insert, most of them will only work well for approx. 50% of patients. I wish they would look for a different kind of medication, or a cure. Because right now there is nothing else left for me to try.
Nikki
Awful isn’t it ? I’ve had signs of RA 30 yrs.
Hereditary from Grandma,
They absolutely need NEW drugs – not immuno suppressants but drug that turn off the Rheumatoid process/gene.
I am going to push for Orencia. Here in Australia I think I can go straight on it not go thru the older bio’s beforehand.
Look at GLPG0634 in Phase 2 trials now looks better that all the rest so far.
Almost 10 years ago (when I was 19) I had my first ‘baby flare’ of joint pain. My doctors concluded that I had fibromyalgia and put me on Celebrex. I took it for a few weeks and when the pain went away and the vomiting started so I quit the Celebrex. Every few months after that I would have another little ‘flare’ and I would suffer my way through it. When I was almost 23 the space between flares changed and I ended up being in pain most of the winter and every few weeks in the summer – again my doctors thought it was fibromyalgia.
That all changed after February 2011. I went into a massive full-body flare that I have not been able to get out of. I am slowly realizing that things will never be the same for me. My doctors (finally realizing this was not fibromyalgia) sent me to my rheumatologist and he has been heaven-sent. He started me on Plaquenil (400mg), MTX (25 injected /week split in 2 doses), Celebrex (400mg), Nexium, Methadone (5mg) and Lortab (7.5/500) (the last 2 to be used in rotation with each other). I don’t tolerate steroids (at all) so within two months he added in Simponi since those samples were readily available in his office.
The question – “when do you start biologics” is an easy one for me. You start a biologic before you become like me. I think when you get to where you cannot breathe, sleep, eat, or move from a bed to a chair without agony so great it moves you to weep you have waited too long. No one should have to suffer like this – no one deserves this. Thankfully, Simponi works for me. The 4-week dose only lasts 2 weeks in me. It doesn’t make me like I was before (Gosh – how I would give anything to be like the “before” me) but I can stand it. I am tough and I can stand it. Even if I stand it sitting down with my shoes off hands curled – I can stand it.
Eva
I’m a fan of biologics even though there are some risks. Without them I would be bedridden. I am now on my fourth biologic. I was on Remicade for 5 years. It was amazing! I had relief after my first treatment. It stopped working and they tried Orencia. I had severe migraines. A couple of weeks ago I had my first Rituxan infusion. Within 30 minutes, my throat started to close up and I couldn’t breathe. Yesterday I had my first infusion of Actmera. No side effects. I’m hoping this will be the one. If you have to go on biologics, I recommend you get to know your infusion nurse and develop a long and healthy relationship with her. The infusion nurses see more of the side effects, get to talk to their patients longer and have some awesome advice! I have the best nurse, ever. Patty at the University of Arizona Rheumatology clinic is my main source of information.
I had posted on 12/11 and said that I would relay any information on my xrays and bone density scans.
I am amazed that they said my feet were okay. They obviously are not trying to walk on my feet. I’m just floored! My hands have damage and thus my RA Doc. feels justified in trying a more agressive RX, I am going to be trying Humira.
What I am really shocked about is that I have low bone density in my spine and hips. Is this a common thing with RA? So now my doc is talking about another RX with my RA meds, called Evitra.
Please someone. If you know about all this, please reply. I am very concerned.
Cathy
Spokane, WA
Cathy- You may not show damage, even on x-rays. Mine looked A-OK, then my rheumy ran contrast MRI’s and the erosion is extensive. So you may want to push for MRI.
*hugs*
Mikaela,
Thanks for your reply. I will ask about those scans.
Yes my Rheumy makes me have X-Ray, CT & MRI.
6 months ago I started Strontium Citrate only one capsule a day to try and repair my bones & joints.
Hi Aussie2 and Mikaela,
Thank you for your reply. I have another appointment in a week with a different Doc for a second opinion and will be sure to ask about MRI and CT scans. Also, I will check out the Stontium Citrate and see if that’s an option for my bone loss.
Still wondering if anyone has heard of those Vectra D tests. I am still waiting for the results from mine. Hopefully will hear something before my appointment with this new Doc.
My Rheumatologist is preparing me for Biologics while I am recovering from surgery to repair a severed Achilles Tendon. He seems to be covering all the bases as far as TB Tests etc. are concerned….. but I am concerned about making the decision. How do I know if I am a suitable candidate. Methotraexate worked fairly well for nearly 18 years but now it has failed to protect me and for the past few months I have been having trouble with hot joints and swelling. I also have A Fib, I am a 68 year old female and I do have a number of Nodules on wrists elllbow and ankles.. The shortened tendon happened recently after the talk of Biologics happened.. and then it snapped in two about six weeks ago..It was misdiagnosed as tendenosis but an ultra sound found the extent of damage and surgery was done two weeks ago. for me to begin this type of treatment? What would be some of the criteria that would be a problem beginning treatment. I don’t know which one he has in mind starting me on. I would appreciate it if someone could help answer my question. Thanks
I’ve been on sulfasalazine, Plaquenil, indomethicin and methotrexate for a number of years now, and for a long time it worked well. Now my rheumy is encouraging me to go to a biologic, and I need to – the disease has rapidly progressed the last 9 months and I have a LOT of pain and stiffness all the time.
Trouble is, my insurance will not pay for it, and no way will I spend $30,000 a year.
So…I wait. Just 5 more years ’til Medicare! (if it’s still there)
I’ve had RA since 2004, noticed symptoms as I was pregnant with my youngest. I had a one year remission. I’ve been on Plaquinel for years, started MTX pills and Folic acid pills about 3 years ago. Then over time I just couldn’t function with the MTX pills, so went to MTX injections last September and it worked like a dream. But the flares were still smoldering, so we tried to add sulfasalzine in December, but that was a crash and burn. I just moved up to Enbrel this week. So now I’m on Enbrel, MTX, and Folic Acid, along with calcium and omega 3. We hope in a couple months I can lose plaquinel and MTX. My concern tonight is Enbrel injections. I do good with MTX injections, but tonight Enbrel just about did me in, and I can usually handle shots pretty well, but this one I almost didn’t even want to finish, it was so painful. I even took it out of fridge 15 minutes prior, and iced the area as well. It just about did me in… Do you have any tips or what has worked to make it easier?
Yes they can be painful – the preservatives used in some of the biologic injection pens stings. if the medication works for you, I guess it’s worth it.
My idea would be to use ice to numb the area for a few seconds before and after the shot.
You start a biologic when you decide that your fear of the side effects start to become incidental to your fear of the potential damage from not taking a biologic and when Methotrexate is clearly not working. I got there just 3 months ago and my doctor spent a lot of time and effort arguing with my insurance company. When I was finally approved, I thought we were ready to go but he did a T.B. skin test and it was POSITIVE. I totally and completely flipped out. Further testing (chest x-rays, etc.) indicated that I have what is sometimes called “latent” t.b. I never had an active case but at some time in my life, I was exposed to the fairly hearty airborne bacteria from someone who did have t.b. I will never know who had it (it could have been a stranger) or where and when I got it but THAT took me a long time (until 2 weeks ago!) to get over-that I will never know. And had I not considered a biologic (Humira) and been tested, my doctor says I’d probably go to my grave “in 50 years” (really? I’m 56!) and never know I had an inactive case. But biologics can “wake” up an inactive case of t.b. so now I’m on a 6-month regimen of Rifampin (a super strong antibiotic with it’s own not-so-fun side effects). But at least my doctor tested me. I looked at the message boards on another Arthritis website and was shocked at how many people either started without getting tested or tested positive for the latent form I have but were started on the biologic without first treating the latent t.b. or stopped taking the antibiotic because they couldn’t tolerate the side effects. No one went into great detail about the decision to stop. Rifampin can cause liver damage but I will get tested every 2 weeks (just had my first blood work done and all is ok). Please get tested and don’t stop the antibiotic unless your doctor decides that the risk from liver damage outweighs the benefit of treating the latent t.b.
I started a biologic five weeks ago and I am terrified of it. I was diagnosed with RA by my doctor, despite not having any bloodwork to confirm it. Now I’m on this serious medication and scared to death of it. I spent almost a year on MTX first. I experienced such a relief in my symptoms that I actually was able to start jogging again but I lost close to a third of my hair. It was awful. So she took me off of it and started me on enbrel. No relief yet and I’m scared that it’s going to cause some crazy side effect.
I was also told that my thyroid isn’t functioning this week. Tired of bad news…
my rheum decided after treating me for fibromyalgia for 17 months , based on my level of pain and symptoms , despite a negative ccp and negative rf, CAD stent placed in 2012, hypertension, high cholesterol, norvasc, crestor, plavix and low dose aspirin and now an MRI that shows an achilles tendon tear and symptoms are symetrical that I may or may not have RA. My quality of life is rapidly declining. Predison taper in december x2 gave some relief. so now he says it is time to treat with Methotrexate and Remicade – he believes I am seronegative. Does that make sense ? to start treatment with a diagnosis based on symptoms vs labs. I have had a chronically elevated CRP and ESR for the past 18 months
You start after you educate yourself. I have GI bleeds with unknown cause. So mtx was out after just six weeks of use. Sad it was working.But humira has helped me.
hi chris how are u going now on embrel?
i am on mtx and i have the problem like of hair loss and the other think is that i like to drink some beer somthimes thats why i am trying to go on enbrel instead of mtx.
Great post.