Depression with RA

When I was younger I noticed a correlation with my depression and flares.  In the early years I was okay between flares.  Would have no pain, and no damage.  Well I noticed after a while that anytime I had a flare "coming on" I would go through a bout of depression.  It would get to the point where I didn't have the motivation to do anything at all.  I would get very weepy and just wanna stay in bed for days at a time.  Sure enough within a couple of days of feeling like that I would start flaring.  The flare would usually be as intense as the bout of depression was.  So if I had only been a bit blue, then I would actually have a relatively easy flare.  Well if you could call any flare easy.  It is amazing to me the things we learn to live with when we have this disease.

So I had a tell so to speak.  I thought well if I can tell when a flare is coming on then maybe I can prepare myself for it.  Oh boy was I wrong.  Whenever I thought, well this was the worst flare ever, it can't get any worse, the next one would be worse.  The other day over on RA Chicks I noticed a  lot of the women talking about something I used to do.  Whenever my hands would get "stuck" in a claw I would force them out of that claw.  So today I YES have hands that our no claws, but that is not to say I didn't do any damage by doing that.  I won't go into how I made them unstick, because personally I think it is probably a really bad idea to actually do it.  Today there are times when my hands are basically useless.  There are days that I can't hold onto a cup to save my life.

I think most if not all of the women I have met online with RA have dealt with some kind of depression.  The problem is that it is not spoken about.  There is such a stigma about the depression and going on medications, that people want to ignore it.

Below is an article from the Arthritis Foundation about depression with RA.

Depression in People with rheumatoid arthritis are twice as likely to experience depression but are unlikely to talk to a doctor about it, according to researchers at the University of North Carolina at Chapel Hill and published in the February issue of Arthritis Care & Research.

Betsy Sleath, PhD, the study’s chief investigator, said that although depression in primary care settings has been well examined, no previous studies have looked at whether rheumatologists and RA patients discuss depression during medical visits.

In the study, researchers found that almost 11 percent of people with RA had moderately severe to severe symptoms of depression. Those who were rated as being more restricted in their normal activities were significantly more likely to have these symptoms.

The study also found that only one in five of the patients who showed symptoms of depression discussed it with their rheumatologists. Those who did were always the ones to bring up the topic, not the physician. When depression was brought up, it was often not discussed at any length.

“Chronic diseases can greatly affect a patient’s psychosocial well-being, and depression can also affect a patient’s adherence to treatment regimens,” Sleath said. “Since many arthritis patients see their rheumatologist more often then their primary-care physician, we recommend that rheumatologists take steps to screen patients for signs of depression.”

In addition to screening for depression, Sleath said it is important for patients to have access to appropriate treatment. Rheumatologists can treat the depression themselves, refer patients to a mental health professional or communicate with the patient’s primary-care physician to coordinate a treatment plan.

This article was adapted from a press release issued by University of North Carolina at Chapel Hill.

Sleath B, Chewning B, de Vellis BM, et al. Communication about depression during rheumatoid arthritis patient visits. Arthritis Rheum (Arthritis Care Res) 2008;59:186-91.

http://www.arthritis.org/depression-ra.php

I want everyone to know that I have had a huge battle with depression my whole life.  I was raised in such a way that anti-depressants were considered evil.  When I was 19 and told by a GP that I needed to go on them, my mother threw my prescription away.  She was not going to ALLOW me to be labeled as needing THOSE pills.  So from that day on, until the end of 2006, I suffered with bouts of depression.  I was SUPPOSED to be able to PRAY through it all.  Now don't get me wrong. I am a Christian and I have been since I was 5.  I love the Lord with all my heart.  No I don't go to Church, have been seriously hurt emotionally and mentally in Church, all because of my RA.  I DO LOVE GOD THOUGH.  I do count myself as a Christian.  I also take anti-depressants, and I won't apologise for that.  I need them, they help me.  They not only help me to feel things more normally, but they help me sleep and help with my pain.  Before I went on my current anti-depressants I had not had a good nights sleep in months.  Just being able to actually sleep helped so much with my mood.  It made a huge difference in how I viewed the world.  If you are suffering from depression please talk to your doctor, please get help.

My Acceptance of My RA

It took me a very long time to come to any kind of acceptance of this disease.  I have "had" RA since is was at least 19.  I don't think I ever truly accepted it until 2010 when I was 35.  Now there are many times over those years where "I thought" I had accepted my fate, so to speak.  Truth be told though I hadn't and that was holding me back.

I can remember being in my early 20's and living at home.  My parents had decided that because I had RA I should never leave home and never get a real job.  At the time I thought that was so very sweet.  In reality it was the polar opposite of what I should have been doing.  I should have been learning to live with my "new reality".  I should have been learning to cope.  What I didn't realise at the time, is that my parents and I both allowed me to become mired in my own sorrow.  I was able to think about all the things that I probably wouldn't be able to do, instead of focusing on the things I should still be doing.

I can remember one day.  I don't remember how old I was at the time, or what specific day it was.  What I do remember is sitting in the middle of the floor of our bathroom/laundry room.  I was totally surrounded by dirty clothes, and I was crying.  I couldn't quit crying.  My mom walked into the room and asked me what was wrong.  The next words out of my mouth would be something I repeated to myself so many times over the next 16 years.  While crying I looked at her as said "I feel like my body has betrayed me."  Truth be told, that was how I felt.  It was to be my credo so to speak for a long time.  Let's think about it, if my body betrayed me, then did I really have to work?  I gave myself the permission to be stuck, and stay stuck.  Over the years things did change, and I got "unstuck" but I never moved passed that feeling.

I would say, "Oh I can't lose that weight cause I have RA.  Oh no I can't take care of myself, I have RA.  For so many years I let myself not care about my own health, because what did it matter, I had RA and that would always be first.  What I didn't realise is that it didn't have to be first, never should have been first.

In 2002 I got married and the next year had my first child.  It was such a wonderful experience, but my parents weren't ready for me to move forward.  At this time my emotions were in a total uproar.  My husband and I ended up having to move from TN to Australia, where he is from.  I had never been out of the US and never really been away from my family.  At the time we felt we had no choice, and truly we probably didn't.  My mother in particular was adamant about getting my husband out of my life and raising our daughter on her own.  She had gotten her way with my older sister and raised my two nephews.  I wasn't about to let it happen.  I wanted my marriage and my family.  She threatened repeatedly to have my husband deported.  Finally we took my FIL up on his offer to move to OZ.  It was the absolute best thing I could have done for my family, and myself.  For one I could actually finally get medical treatment.  Well it did wait until 2007 after we were finished with our family.  So I went from 1994 to 2007 with no treatment for my RA.  During that time I also started suffering with depression, but that is another blog entry all together.

So in 2005 I went to my first ever Rheumatologist appt.  My second child was 6 months at the time and still breastfeeding.  The Rheumy told me that if I was done having kids I could go on medication as soon as my daughter weaned.  He also told me that if we did want to have a third child we needed to get on the ball and do it.  He was of the opinion that if I waited I would end up in a wheel chair.  He also said at the time that no one really needed three kids.  Basically he said if you weren't satisfied with two you wouldn't be satisfied with any number ever.  I had always dreamt of having three.    At the time though, thinking it was going to be simple to get our daughter to wean I gave up that dream.  So yet again, I was like, well I can't have my third baby, and it is all because of my RA.  What more did I have to give up for this damn disease?  Well God had a different plan for us.  At least that is how I look at it.  Our daughter refused to wean, and I got pregnant again.  So my RA would go a bit longer being untreated.  I arranged during the last pregnancy to go on Celebrex that day after I delivered.  I had to make arrangements for bottle feeding, it is not the norm in Australia.  So after all that was worked out and I had all the doctors notes I needed and the referral for my Rheumy, I was ready to get my RA under control.  Now at the time my Rheumy promised me a pain free life.  In hindsight I would have questioned that, but didn't.  So I got my hopes up.  Once I started medications, it was one upset after another.

I was started out on Plaquanil.  I was dosed according to my weight and took 2 pills four days a week, and 3 pills three days a week.  I was told to try this for 6 months.  I started it and had a headache for 6 weeks.  I pushed through that though.  I had read that headaches could be a side effect.  At the end of the 6 months there was no improvement in my RA.

At this stage Sulfasalazine EC 500 mg was added.  I was to take 2 pills twice a day.  I had to again try this for six months.  Over that time I was increased to 3 pills twice a day.  Then again at the end of the six months there was no improvement yet again.

Then after that we had MTX added to the cocktail.  After taking the first dose of MTX I was asleep for a little over 24 hours.  Could not for the life of me open my eyes.  After the second dose I started having hallucinations.  After this my Rheumy decided that the med wasn't worth it.  So I was switched to Arava to try for 6 months.  Now there was a delay here, but that was my fault.  It took me a good six months to fully decide to take Arava.  After I finally decided to take the med I had to wait a further six months.  SO at the end of this time, I was still in a huge amount of pain.  I felt like I had wasted about 2 years trying med after med without any positive results.

After I failed or decided I hated MTX I was put on Arava.  It took me a good year to come to the conclusion that I should and WOULD take this particular drug.  I can't even really begin to tell you why on this.  I for some reason gave myself a mental block against it, and couldn't for the life of me work through it.  I think it had something to do with the fact that it can take up to 3 years for it to be totally cleaned out of your system.  I guess for the first time, this whole battle was very real.  Yes it took me a while to get there.

After actually starting the Arava and it not working like everything else I had to start my biologicals.  This was a particularly hard time pain and emotions wise.  My Rheumy was retiring and I kinda slipped into the cracks.  He didn't want to start me on Enbrel until my CRP and ESR were fairly high.  I was suffering and he kept putting me off.  I mentally understood what he was doing, but physically I had, had enough.  When my CRP finally got to 26 I was READY.  Although he apparently wasn't.  In Australia once you have a blood test done the results are good for a month.  Medicare wants them done fairly regularly when you start and continue on Biologicals.  So 3 weeks went by and my Rheumy just didn't call me.  Finally I broke down and some how got through to him.  He finally agreed to let me start.  Within a month I was starting Enbrel, but had a whole new Rheumy to deal with.  My old one had not even informed me he was retiring.  So I failed Enbrel, and was asked to start something else.  The list just goes on and on and on.  My new Rheumy was ready to tell me there was no hope for my RA.  She would mumble about it being uncontrollable.  SO she gave me 2 choices.  I could either start Rituximab, or Actemra.  She wanted me to start Rituximab, but with having 3 young children, I didn't want to totally destroy my immune system. I understood shutting part of it down needed to happen, but the whole thing.  I didn't want that, so I decided to go with Actemra.

I can remember so clearly how terrified I was to start infusions.  The week leading up to it I decided, "You know what my RA isn't really that bad.  I can live with this no problem.  I think I'll just not take this step."  I have some wonderful friends and support on facebook though, and a very good beautiful friend Wende McBride talked me down from that brilliant idea.  She introduced me to another wonderful lady and they convinced me I should start the Actemra.  So I went in for my infusion, was given medication for nausea and everything was good.  I can home after and was totally exhausted.  So I went to sleep early and woke up the next day feeling better than I had in years.  I was dancing through the house, and hopping around.  I got down on the floor first thing in the morning and scrubbed a stain out of the carpet.  My oldest child looked at me like I had gone totally insane overnight.  SO for the next month I had energy, the only pain I had was from previous RA damage, and I was on cloud 9.  Then on the 21st of October 2010 I went in for my second infusion.  It all started out well and then it all went bad.  About 30 minutes in I started to have an allergic reaction to the medication.  Now this in not all that unusual.  Most allergic reactions to this particular drug happen between the 2nd of 5th infusions.  So as I sat in the infusion room I had 2 departments arguing over me.  Cardiology was convinced I was having an allergic reaction, Rheumatology was convinced I had an underlying heart condition.  Then just to add more fun to the mix Accident and Emergency refused to admit me cause I was an outpatient of Hospital in the Home.  So it took a few hours and several calls to my old Rheumy my new Rheumy and General Medicine before I got admitted to the hospital.  See no one wanted to send me home, but no one wanted to take responsibility for me either.  Eventually my old Rheumy had me admitted under his name.  Funny thing is he didn't actually retire, he partly retired, and only from private practice.  He started working solely for the Rheumatology Clinic at the local Hospital.  Now during the allergic reaction I had been given and injection of Phenergen (Anti-histamine).  Once that injection wore off the next day I started to get a rash, on the arm the infusion had been given in.  Now this cemented the fact that it was an allergic reaction for me and General Medicine.  My new Rheumy, God love her, was also convinced.  SO finally I was released from the hospital over the weekend.

Now here I am thinking okay so do I try again, and just get pre-medicated for a reaction or do I give up. I was very concerned and worried, and could not come up with a decision.  Thankfully it was made for me.  My old Rheumy wanted me to continue on since the Actemra worked so well.  My new one though had done her research.  She found out that a woman in the US who did have another infusion after her first allergic reaction then had a fatal second reaction.  She told me she just didn't want to risk it, and I was fine with that decision.  She did though have me go ahead and get new bloods done.  So as we sat there I started asking some questions.  Like why was it that I still had to deal with some pain.  Not the pain from damage but a lot of muscle pain.  I asked about Fibro, and she said Yea you probably do have it.  I was already on all the meds for it though so it didn't really matter.  At this stage though she decided to be totally honest with me.  She looked me in the eye and said "You will probably never be pain free."  I have to say at that point, that is what I needed to hear.  At that moment I realised that yes I would have to deal with not only RA but pain for the rest of my life, and you know what, it was Okay. Finally I had someone being honest with me. Someone who knew my whole medical history, knew hoe difficult my RA was to treat, and was willing to work with me.  Not so that I could try to achieve an unattainable goal, but so that I could live a life as normal as possible.  It felt so freeing to be told, lets work on your quality of life now.  Lets try to stop any more damage but also deal with the current damage.  I think at that stage for the first time I felt like she and I were a team working on this.  Not just her saying on you do this, but what do you think about working it this way.  It was the moment that I accepted my RA, but also KNEW that I was going to be okay despite having it.

Exercise in my daily life

2 in 5 Rheumatoid Arthritis Patients Sedentary

Many RA Patients Who Avoid Exercise Unaware That Physical Activity Can Ease Symptoms

By Matt McMillen 
WebMD Health News

Reviewed by Louise Chang, MD

RA, which affects 1.3 million adults, is a painful condition that causes joints to be swollen, stiff, and damaged. Inactivity puts RA patients at risk of increased pain, weakened muscles, poor balance, and stiffened joints. But many people with RA lack the motivation to exercise -- or don’t know that exercise may help them feel better.










I will be completely honest with myself here.  I find it very hard to exercise.  Most people think that I have an aversion to the work of exercise.  It is very hard to explain that, that is so not the case at all.  It is not that I am unmotivated.  I also do know that a regular workout would be good for me.  ALthough I also know that my body has different limits to others.  In fact we are all different.  When I work out, I love it.  Although I am for the most part unable to.  I find it very insulting that people with RA are deemed "lazy" or "unmotivated".  The truth of the matter for me, and I believe many others, is that we have to pay close attention to our joints.


Work through the pain, it will get easier




     This is a phrase that works for so many people.  Although I have been told it by a personal trainer.  When I explained to her that no, that doesn't work for me, she told me I was wrong.  Pain for a person with RA can indicate we are doing ourselves more harm than good.  It is a very thin line.  We don't want to work so hard that we further damage joints that are already in danger.  That in the end will hurt us more than help.  I drew lines with my PT at the time, and she constantly tried to push them.  Like trying to get me to do pushups.  I can't do pushups.  My wrists are damaged and in need of replacement, but the pain from the damage has not gotten to the point that I qualify for a replacement.  So do I stick to my guns and not push myself or do I push.  I stuck to my guns.  In my opinion it wasn't worth putting myself into surgery sooner rather than later.  And, you know what, that was OKAY.  It is after all my body.
     Each one of us has to find our line.  What I mean to say is, yes we can work through a certain amount of pain, and yes that may get better, but it may not.  I think we can all learn our bodies and joints though.  I think there is a distinct difference between a normal workout pain, and a this is hurting my joint pain.  Once we learn that, we can work with it and to it.  Never should we allow ourselves to be put into a position that we are pretty certain will hurt our joints.  If you have a PT that won't listen to the limits you know you have find a new one.

Rheumatologist Cong-Qiu Chu, MD, PhD, agrees that patient education is essential because many patients are afraid to exercise. They believe that the strain may make them feel worse. In his practice, however, Chu has found that patients who are informed about the benefits of exercise become motivated to get active.

“Most patients are motivated to be functional  -- they just don’t have the knowledge that it is good for them,” says Chu, who directs the Early Arthritis Clinic at Oregon Health and Science University in Portland.

How much exercise a person is capable of must be determined on an individual basis, but Lee advises following the latest federal guidelines, which recommend 150 minutes of moderately intense activity each week for adults.

“We’re not encouraging our patients to do anything overly vigorous,” she says. “Water aerobics or 10 minutes of walking briskly, as if late for a meeting, are good exercises.”

Just get over it

     Honestly if I could I would.  Truth be told, I have permanent spinal damage.  With that comes issues. Issues like not being able to stand or walk for extended periods of time.  The facet joints in my lower back are damaged.  That means that simple things like twisting at my waist is painful, and dangerous for my back.  This is something I just can't GET OVER.  It is something I have to, and am learning to work with.

I think in a lot of ways we are unfairly labeled.  Even in the article I have been quoting.  What I would like to know is how many of the participants were in a flare.  I don't know about anyone else but during the middle of a flare I can't get up and work out.  Sometimes in a flare I can barely even get up to go to the toilet.  Forget about things like feeding myself, let alone working out.

http://www.netdoctor.co.uk/ate/musclesjoints/203553.html

Exercise for someone with rheumatoid arthritis

As a general rule try not to work through the pain regardless. Your body is telling you, when it hurts, that you are doing too much and if the discomfort lasts for more than an hour after exercise, you have overdone it.

http://www.uptodate.com/contents/patient-information-arthritis-and-exercise

I have posted a few articles that I have found helpful.

Alternative Therapies VS Medication

We are all in the same boat so to speak.  We are all living with our bodies and the things they do to us.  I have on many occasions said, my body has betrayed me.  Should we really attack, badger, and belittle each other for the decisions we make.  I have never told anyone they should not do something or that I think they are making a mistake.  I have asked friends to be careful and keep a close eye on themselves.  That was merely out of concern though.  Never would I  degrade a person for the decisions they make.  Don't we all deserve that same curtesy.  I do understand how excited people are when they "FIND" a new regime.  Could we all just maybe sit back and think before speaking.  You never know how a person may react to what you say on any given day.  There are times I take things to heart.  I feel attacked and belittled or degraded by things that are said.  Not necessarily because that is how the person meant it, but because that is where I am.  It is hard to always be up when you are always in pain.  I am trying to monitor my interactions with everyone, simply so I can help instead of hurt.  I would hope and pray that we can all support each other in this journey.


How a person with Rheumatoid Arthritis decides to treat their disease is a very personal and soul searching one.  For most of us it is anyway.  Personally I sit down and actually research a medication before I start it. Usually I am given a choice and I make an informed decision on which to go with.  That being said, I don't delve so deeply that I scare the crap out of myself.  I have done that before and it is too stressful.  Stress isn't good for a person who has any kind of illness, ours feeds off of it though.  Too much stress = flares = having to up pain medication = being miserable and or the inability to function.  Unless I am starting a new biological I do a cursory look at things like, what side effects do I need to go to Accident and Emergency, if I experience.  I also check to see if any red flag articles have been published, that will keep me from trying the medication.  I have only found those types of articles with biological medications though.

After I start the new med I pay close attention to my body for a few days.  If I experience something that I think may be a side effect I will again look the med up.  If it is but falls into an acceptable category, then I continue on.  The thing I have found out about ALL the medications I have been put on is that the side effects I have experienced are self regulating in the body.  SO once my body grows accustomed to taking the med the side effect usually lessens and go away after a short period of time.  Like when I started plaquanil, I had a fairly bad headache for about six weeks.  Yes in the life of a person living with RA 6 weeks to adjust to a medication is considered a short time.  Now even I have to admit there have been some drugs, take Enbrel for example that I almost quit because of the side effects.  I had such horrible migraines after starting it, that the relief I got from my RA Symptoms didn't matter, while I had the headache.  Some of those headaches lasted for days as well.  I did continue on though, and the headaches lessened.

I will never say that the path of taking medications for our disease is an easy one.  It isn't, we have to consider it carefully.  The thing is that even if we did decide to go and change our diet, and limit our intake of certain foods and substances, we could still be suffering damage.  If you aren't paying attention to what your blood markers are saying, you aren't paying attention to your disease.  My disease despite being on a biological that is lessening my pain, is still active.  I am still suffering damage and swelling despite the drugs.  Before you say, well then you should cut out certain foods.  I have tried that, in fact currently I have cut out all the added sugar in my diet.  Being a Southern Gal from Tx and Tn I love my sweet tea.  I cut it out though, and it has made NO DIFFERENCE what so ever on my inflammation.  I have made a huge change in my diet and calorie intake, in fact on top of the sugar I have also cut out caffeine.  I didn't do these things for my RA I did them to be healthier overall.  Is that happening YES, but again it is not making a difference with the RA itself.  What I find so interesting is that the research I have done on diets for RA, they all say, it's proven, it's tested, but I have not found any actual proof.

“There are different theories behind certain diets,” said Kare Hagen, the lead review author. “There are some reports showing that food allergy or intolerance is present or even common in RA patents.” However, she said, “No body of evidence exists for dietary intervention for RA.”

Read more:No Proven Role for Diet in Treating Rheumatoid Arthritis - Arthritis -Dieting -http://www.health.am/ab/more/diet-in-treating-rheumatoid-arthritis/#ixzz1kurrm6ts




I have found no proof that a gluten free, sugar free, or any other diet improves the symptoms of RA... Also I have found no proof that alternative therapies improve symptoms of RA.

Rheumatoid Arthritis has no known cause and no known cure.  One thing to consider is that if and when we are put on immune suppressants it is in order to stop or slow down our immune system.  Why is that important you might ask?  Well because our immune systems are the very thing that is causing our problem.  If you are going the alternative approach and improving the way your immune system acts, then are you really helping your case?

I am glad that so many people take in upon themselves to try and improve the condition they are living in.  I also think that alternative therapies and medications are great, but not at the risk of your health and mobility.  If you want to try an all natural approach to your RA that is fine great even.  Although I would behoove anyone to take a measured approach.  If you want to do this, get together with your medical team.  Let everyone know what you are doing and KEEP AN EYE on ALL your blood levels.  From experience I know that damage can be done without pain.  I have an entire wrist that is basically useless, and never once before the damage was done did I have pain or noticeable inflammation of any kind in that particular joint.  Our bloods let us know if there is inflammation we can't see.  Our Rheumatologists do more than write scripts for us.  They do joint counts and they keep track of how active we think our RA is,  and how active our bodies tell them it is.  No good Rheumy goes by bloods alone, just like no good Rheumy goes by what we say alone.  That is how it should be.  If we have pain, and our RA appears to be in control it is time to start looking at other possible scenarios.  Autoimmune disorders tend to run in packs.  Personally I have 3 known disorders and migraines to boot.  NEVER should you discontinue the use of your medications because you are fed up with them, or because you think you know better than your doctor.  I think many times we just don't feel that our doctors are "hearing" us.  If that is the case then it is time to have a frank conversation with said doctor.  Never should you leave the office feeling emotionally like you have not been listened to.  If your doctor does not like the idea of what you want to do, see if you can compromise.  If they really just don't want to listen then it might be time to change doctors.  The thing is that quite a few of the all natural treatments can do good, but if implemented in the wrong way they can be bad as well.  As a young adult I went to a church once where a man who was in remission from cancer started supplements.  He did really well for a while, but in the end when he stopped the supplements he had no immune system to speak of.  He ended up in a worse position because instead of consulting a professional he did it all himself.

I have to say I have fallen prey to the "miracle cure" fads.  I heard that so and so stops it in it's tracks.  yes it seemed to, but ultimately didn't.  There is a reason we are told to wait 6 months before we decide a medication has failed.  That is because things take time.  It takes medications a while to get into the system and work.  If you aren't willing to give it time, you won't get any results.  It also takes time to see if an immediate improvement from an alternative therapy will continue.

It bothers me beyond belief when people tell an RA patient what they think that patient should be doing. If they don't have it, they don't have a clue what we go through on a daily basis.  It is our disease, our pain, and our decision.

The thing is the same thing applies to our daily lives and interactions with our friends and families as with our medical teams.  We should never leave a conversation with a friend or family member thinking sheesh they just don't get it.  We should put up boundaries, and make the family and friends adhere to those boundaries, because they are important for our health.  We need to find our ways to cope with our conditions.  It is important that we are okay with the decisions we make.  That is why I think the online support groups are so great.  Anytime we have one of those, "You should be doing this" conversations with anyone you can at the click of a mouse be with friends.

I think what I am trying to say is that you should feel empowered by the decisions you make.  We should never question ourselves.  We make the decision that is best for us at the time.  We can only make decision based on the information available to us at the time.  Don't question yourselves, yes you may make a decision that does not ultimately work out, but you made that decision because it was best for you at the time.  Never let anyone make you question yourself.  You are your own best advocate and that will never change.  No one will ever be as invested in your health as you are.  Learn what you need to know and stick to your guns.

Orencia

My experience with Orencia is ongoing.  SO far I have had a good response.  At my first review appointment my numbers were through the roof, but I was sick at the time and was expecting that.  So after my last blood draw, my numbers are currently pretty good.  My last CRP was 17, and my ESR was back within normal range.  Those are the only two I will mention because here in Australia they are the two that are tracked by Medicare for the government to provide my medication for free or at a heavily discounted price.  Currently since I will be going back to the hospital to get my infusions it will be free.

I have had few if any side effects from Orencia.  Sometimes it is hard to tell if something is a side effect or an actual symptom of my RA, Fibro, or Meniere's, oh lets not forget the Migraines and the medication induces Hyper Tension.  SO yes there are times I have been nauseated or felt a bit yucky or dizzy, but I can never be sure why.


One thing I can say without a shadow of a doubt.  If in Australia and in NSW I would NEVER recommend the Orencia Home Infusion Service.  I signed up with it back in May.  It took them several weeks/months to find me a nurse.  When they did my first infusion with them was still over 3 weeks late.  I had requested that my infusions be done on Mondays.  My Husband has worked out a special schedule at work where he has every Monday off.  Since I never know how I am going to be doing after an infusion I try and always schedule them on Mondays.  Well the first nurse this program got for me did my first infusion on Monday, but refused to do anymore on Mondays.  She said she worked.  That is all well and good, but I didn't request this. So she told me that she would do all my infusions after 3:30.  That way if I wasn't feeling well afterwards I wouldn't need to go anywhere, cause the kids would already be home from school.  I agreed but not happily.  SO my second infusion with her was 3 days late because she refused to come on any day but Thursday.  After that they found me a new local nurse.  Still with my third infusion it was again a week late.  I was told "You have to be patient, it is the holidays."  I explained that, that was all well and good, but my health was my priority, and my husband would very likely have to take a week off of work because I would be flaring badly that extra week I was waiting.  I was more than a little unimpressed with my second nurse.  First she wouldn't wear gloves to do my infusion.  Most people probably wouldn't have a problem with this,  but I did.  Second she was just rude.  Third, after my daughter accidentally yanked my IV out of my arm, she tried to shove it back in.  Lets just say that infusion was not a very fun experience.


My Rheumy was more than happy to let me return to the hospital to have my infusions after I explained to her everything that happened.  I was doing some research and discovered that if you go up to 56 days between infusions then your body can start to build up antibodies which will render the medicine ineffective.  Thankfully I never went that long.


 I added a few pics of my second hospital infusion.

 

  

   

Cimzia

My experience on Cimzia was a bit forgetable.  I really don't mean that in a bad way though.  As it turns out after I was told I couldn't take Actemra anymore we were at a bit of an impasse.  According to the rules of Medicare for biological drugs in Australia I was only going to get 2 more chances that the government was willing to pay for.  It just so happened that at the time I came off the Actemra and was looking for a new drug Cimzia started a program in Australia.  The makers of Cimzia were fully expecting the drug to be put on the PBS within 6 months.  So anyone who signed up before a certain time would get to trial the drug while waiting for it to make the PBS.  The advantage of this trial was that the manufacturer was going to provide all the shots.  Then if you responded well enough Medicare would take over paying for the injections. It was a fortnightly injection and was to be honest packaged in a much more RA friendly way than either Enbrel or Humira. I put photos of the actual kit Cimzia sent to me for the injections.  The pic of the syringe is how it actually looks.  I was able to get the top off of the injection and inject with my RA riddled hands.

I can't remember any overly apparent side effects from Cimzia.  I got headaches and muscle aches.  Basically all the things I already had because I have RA and Fibro, oh and the migraines and other stuff as well.

Kit sent out by Cimzia

I did respond to Cimzia, better even than Enbrel.  It hurt less than the other self injections I have done.  It is a good drug that did show positive signs for me.  I remember that after 6 months my CRP dropped down to 15.  For me that is a really good response.  Especially considering we weren't thinking a TNF Blocker would work at all.

 My Rheumy though now has her sights set on remission.  She had started to think that was impossible in my case, but since the Actemra did put me into remission she knows it is possible now.  At the same time that she ordered the Cimzia she started petitioning Medicare to get Actemra removes as one of my 5 choices.  I never actually failed it, and because of that she felt I should not be disadvantaged by having it remain as one of the 5 fails.

So I don't have much to say about Cimzia overall, but I didn't have a bad reaction and experience with it either.
http://www.cimzia.com/

Actemra

In September of 2010 I started on Actemra.  My Rheumatologist gave me a choice between Rituximab, or Actemra.  After researching both I thought that Actemra was a better fit for me.  In order to go onto Rituximab under the PBS in Australia you have to be on Methotrexate to take Actemra.  I had, had a bad reaction to the MTX in the past so was not in a big hurry to go on it again.  I figured what the hell, I am going to put off taking that crap for as long as possible. SO against her better judgement my Rheumy put me on Actemra.

I have to say that I was very nervous starting it.  A good Facebook friend of mine helped me through the nerves of starting yet another new medication.  Actemra was my first go with an infusion medication.  During my first infusion I felt a bit nauseated and was given medication for it.  So after the infusion I was tired and crashed after I got home.  I was just really exhausted and wanted to sleep for a week.  The next morning when I woke up I felt better than I had in years.  In fact there was a stain that one of the kids had made on the carpet in my sons room.  I got down on my hand sand knees and scrubbed that stain til it came up.  Then I went dancing through the halls just so happy that not only did I have energy I felt fantastic.  Over the next month the only pain I had was from damage that has been done from over 15 years with RA.  I kept just waiting for the good feelings to wear off, and they didn't.  I felt good for an entire month.  SO when I went in, in October for my second infusion I was very excited.

I was started on the infusion and for the first 15 minutes everything was fine.  Then I started feeling a tightness in my chest.  I didn't worry about it too much but thought I should tell the doc so did.  Well I told a nurse who told the doc, who then started panicking.  Nothing worse to watch a doctor who is in charge of your care panic about something happening to you is NOT FUN.  SO the doc in charge of the infusion room decided I had to be admitted.  Then started a fight between 3 departments about what was wrong with me and why.  Cardiology decided that I had a simple allergic reaction, I agreed with cardiology.  Rheumatology decided that I had a heart condition. and General Medicine decided to just ignore me all together.  Well during the infusion I was given an injection of Phenergen.  After a fight between those departments and the Emergency Department, who refused to admit me, cause I had already been admitted through day surgery I FINALLY got a bed in the Cardiac department.  Finally  my old rheumy who was on the board of the hospital admitted me.  On the day after the infusion I broke out in a rash on the arm that was getting the infusion.  I had been pretty convinced from the day of the infusion that I had, had an allergic reaction.  After I was discharged from the hospital and saw my current Rheumatologist we decided that I wouldn't try and continue on the Actemra.  My Rheumatologist  had looked through the research on Actemra and had found that when a woman in the US had continued on the medication after an allergic reaction and it had been fatal.  I was really glad that she did the research and told me that.  My old Rheumy while I was in the hospital had wanted me to continue on the medication.

We decided to do some blood work to see where my levels were.  As it turned out I was feeling so good because I had gone into clinical remission while on Actemra.  It was so depressing to find that out after I had been told I could no longer stay on the stuff.