The truth about living with Rheumatoid Arthritis

#arava

Rheumatoid arthritis – do you drink alcohol on methotrexate and arava?

all medsI have a confession to make.  I drink.

This is probably more of a ‘confession’ for me than for most, for two reasons.

One, I take medications that you should not drink alcohol with.  Namely methotrexate and arava.

And two, one of the reasons I separated from my husband was because of his heavy drinking.  There are those that call me a hypocrite.  I disagree, of course. There is a big difference between an alcoholic and a drinker. Even a heavy drinker is not necessarily an alcoholic.

I have always enjoyed a glass of red wine.  But recently my drinking has increased.

I drink because it eases the pain.  A glass of wine makes my oxycodone more effective, even though I am well aware that combining alcohol with oxycodone is not recommended.  But there are days when I will do anything to relieve some pain.  It helps me sleep through the pain.

When my pain levels are low, I don’t drink much.  But my pain levels are not low very often lately.  I usually have at least one glass of red wine every night.

When my pain levels are high, I drink considerably more.  They are high right now.  They have been high, with a few days of respite, for weeks now.  So I am drinking more. 2-3 drinks per night.  On the weekend just gone by, I was in a lot of pain.  So I drank most of a bottle.

I want to be completely clear. I am honest with my GP and my rheumatologist about my drinking habits.  And why I drink.  Both would prefer that I abstain.  But when the pain is ramping up, and the oxycodone is not cutting it, and my whole body is on fire, a glass of red wine is my crutch.  It has a physical effect on the pain, as well as an emotional one.

As I’ve said before, I’m not a big crier.  Sometimes though, I need to cry. But I’m such a hard-faced ice queen that I don’t like to cry in front of people. I tend to hold it together and paste a smile on.

I’m so used to holding it together, that sometimes I need a little help to let the emotions out.  A glass or two of red wine facilitates that process as well.

I have my liver function tests on time every month, and so far they have always been fine.  My rheumatologist admitted, considering my blood work, I appear to be handling alcohol and medication just fine.

Why am I confessing?  Because today started out not so bad.  As the day went on, the familiar itch in my bones started.  A wave of terrible fatigue washed over me, and I knew that a knock down flare was on its way.

And I realised that I didn’t have any wine in the house.

I sat and thought about it.  There was no other item that I needed from the shops.  Walking was very painful.  I had already taken my usual daily dose of oxycodone by 2pm.   I knew it was going to be a rough night.  And I asked myself if I could get through the night without a glass of wine.

I knew that a trip to the shop would be painful and slow.  And I got in the car and went and bought wine.

Am I becoming an alcoholic? Have already become one?

I don’t believe so.  But it’s a habit to watch.

I often get asked how I cope.  I have severe RA, Lupus, Sjogren’s, and a few other lesser autoimmunes.  I am a single mother. I have two children, one with special needs – Asperger’s Syndrome.  I live on a disability support pension. I try to supplement my income with freelance writing work.  Life is not easy.

So how do I cope?  I’d love to say I have a supportive partner who has big strong arms and is generous with his hugs.  But I don’t.  I have a vice.  A crutch.  An escape.

My glass (or three) of red wine.

Rheumatoid Arthritis and losing hope

enbrel2For the last month I have been very quiet, mostly because I found myself getting to a point where I was losing hope.  Depression was starting to sink in.  I believe almost everyone who suffers moderate to severe Rheumatoid Arthritis will suffer some depression at some point.  For me, it happens when I lose hope.

Admittedly, it’s been a rough few weeks.

I had to drop my dose of Arava, because my liver function tests came back bad.  Then I developed an incredibly itchy rash on my arms.  Cause unknown.

Adverse reaction to Arava?  Allergic reaction to something else entirely?  Lupus symptom?

Whatever the cause of the rash, because of my prednisone use, my skin is very thin and breaks easily.  Everywhere I scratched (even though I tried hard not to!) I would bleed.  Also because of the prednisone, I heal very slowly.  After a few days my arms and legs were covered in itchy, bloody sores. My general practitioner advised me to start tapering down off prednisone, so my skin could heal.   So I started a fairly quick taper…1mg every 3 days.

By the time I got to 11mg the joint pain was enough to make walking difficult.  The fatigue came back with a vengeance, forcing me to rest more, and achieve far, far less.

And the unbearable itch just capped everything off.

Next my skin started developing nasty, infected looking pustules, which turned into open sores, like boils.  The steroid cream wasn’t helping.  I got to see rheumy for another one of the ‘emergency’ appointments I love so much.

She suspected a staph infection.  And told me to up my prednisone back to 15mg right away. And so ended another painful prednisolone taper!  She also apologised, there had been a mistake with my Enbrel application, and it had only been sent in the week before.  She told me it would be another two weeks until we had an answer.  I had already been waiting five weeks…I almost cried then and there.

Pain, fatigue, unbearable itch…and human error…all conspired to reef my positive attitude right out from under me and sent me limping to my couch, with my heated throw and my teddy bear!

I lost hope.

Staph was confirmed by a skin scrape test.  I started antibiotics.

The best part of all was that even if Enbrel were approved, I couldn’t take it.  You cannot take a biological with an active infection.  And I still didn’t know IF Enbrel would be approved.  My rheumy just didn’t sound confident to me.

I lost hope.

I knew what I needed to do to pick myself up again.  But truthfully, I was just so tired, I didn’t have the energy to do it.  And I didn’t think I had anyone in my life who would help me.

Feeling utterly and totally alone didn’t improve my mood.  So I took a chance and called a friend.  And she listened.  She gave support.  She understood some.  She didn’t change the subject to her problems.  She didn’t hang up the phone.  I’m grateful.  I felt a little better.

And then Rheumy called to tell me that Enbrel has been approved.  The script is in the mail.  At the end of this course of antibiotics, I can start treatment.

I was stunned.  Hope came flooding back. I could instantly feel the black cloud start to lift.  I hadn’t even realised that the main cause of my depression was not knowing whether Enbrel would be approved.  That phone call changed everything.  I started to laugh.  And then I cried.

And then I danced around the room, knowing that there’s a very good chance that once Enbrel has a chance to take effect, I could be dancing with much less pain.

I have hope.

Rheumatoid Arthritis and Arava update

arava (leflunomide)I haven’t been posting much because so much has been happening. I’ve even written posts, and not published them.  Just forgot.  Must catch up on those…

Anyway. Where am I now?

Arava (leflunomide) is not my friend.  My rheumy rang on Friday to tell me my liver function was not good and I need reduce my dose of Arava back to 10mg.

Now, I don’t feel that 20mg is helping much.  I really doubt that 10mg is going to help much!

So I’m wondering, why bother?

I’m still experiencing some very unpleasant side effects from Arava…diarrhea, nausea, dizziness, fatigue, weakness, mouth ulcers, hair loss…have I forgotten anything?

It’s not a nice drug.  But it has to be tried.  Rheumy tells me I need to be on it for 6 months before I ‘fail’ it.

My question is why?  Now that it’s affecting my liver, after being on it for almost 4 months, I think it’s a safe bet to say this drug is not for me.  I think it’s safe to say that I have ‘failed’ Arava.

So while I agreed while rheumy was on the phone, I thought about it over the weekend and came to the conclusion that Arava is not for me.  So I called her back.  The gatekeepers put my message through.

Two days later, hearing nothing, I called again.  The gatekeepers promised that she would get to me.

The next day I suffered a full body mega flare that completely broke me. Physically, mentally and emotionally.

I called rheumy in tears and the gatekeepers made an emergency appointment for me.  On Monday. (Ok, so you need tears to understand that it’s really bad?  Why is it that me *saying* that it’s really bad doesn’t have the same effect? )

Five days away.

Better than nothing.  So when I see rheumy I am going to ask her why she can’t just go ahead and fail me.  And ask her point blank if she intends to try and get me on a biological.

She has said she will try to get them for me.  I have been patient.  Admittedly I have been undertreated for five years by a different rheumy and this is not my new rheumy’s fault.

I have been in daily pain for five years.  My window of opportunity closed many years ago.  They aren’t even trying for remission anymore.  Low disease activity is the best I can hope for.

Or take my chances with prednisone. Which hasn’t been my friend either lately.  But that’s another post…

Onwards to Arava (leflunomide) to treat my Rheumatoid Arthritis

I went to my new rheumatologist yesterday.   And I survived!

I always get very stressed before seeing a new doctor.  Starting from the beginning, explaining everything, terrified I’ll forget something important, or say something wrong that gives the wrong impression…once a doc has formed an opinion, it’s very hard to shift.

And many, many docs come with the pre-existing opinion that unless your CRP is through the roof, its minor pain that can be cured with an anti-depressant.

My new rheumy is not like that at all.  She looked at my blood work.  She felt my joints.   She looked at my scans.

She said it was quite obvious that I have severe and active Rheumatoid Arthritis.  She seemed quite surprised that anyone could possibly come to any other conclusion…the scans say it all, even if the blood work doesn’t.

She listened to my stories, and I could tell she believed me.  She understood that I am the kind of person that hides my pain, and that I am far too proud to use my walking stick at places where I might run into people I know.  She understood when I explained to her that I was an exercise junkie before I got sick, and I have always worked out my problems in the gym.  So that’s what I still try to do now.  It does NOT mean I am not in pain, or that my rheumatoid arthritis is mild.

She understood that when you live with pain every day, you will endure a little more to be able to do the things that you love…the things that bring you some happiness.

It was quite cathartic to talk it through.  And to have someone listen.  And to have someone care.

So when she prescribed Arava (leflunomide) I agreed to take it.  She explained it was no more likely than any biological to cause the intense emotional side effects that methotrexate caused.  She also explained that there is a washout procedure that can remove the drug from your body quickly, if side effects are severe.

She told me if I take Arava for six months, and it doesn’t help, then she’ll have no problem putting me on a TNF blocker.  But Arava needs to be tried first.

She was so reasonable, so logical, and yet still very empathic, that I agreed, where I have refused to take that drug before.

She allayed my fears, and I trust that she will be there if things go badly.  Its amazing what an empathic approach can achieve.

So I filled the prescription and took my first dose last night.

And now?  Now we wait…

Alternative Treatment Options for Rheumatoid Arthritis

I stopped taking methotrexate two weeks ago, and I feel no different, pain wise. I feel much more clear headed, much less nauseous and a bit less fatigued. So I’m clear about what effects the drugs were having, but unfortunately it didn’t improve my pain or inflammation levels.

So now what?

I am still taking plaquenil and naprosyn. But neither of these prevents flares. Infact, my day to day pain used to be a four or a five at best. Not hideous but a long way from pain free. Since Christmas, however, I have been living at sixes and sevens and eights. Quite a lot of eights. Infact every evening through to morning is at least an eight. 2am is often an eight and a half. Sleep is difficult and interrupted. I am still trying to exercise, but I’m finding that the exercise, is also making me feel worse, not better. I need nanna naps to get through the day and work is looking shakey. I only work 15 hours per week as it is!

So things are not good. Not good at all. And the really cool thing is that there are no more treatment options. I have tried all the standard treatments, with the exception of Arava (leflunomide), and even my rheumy doesn’t think Arava is a good choice for me. So all I can do is try sulfasalzine (salazopyrin) again, which I have taken before, and it didn’t help.

Apparently I am not eligible for biologic drugs, because my blood work is ‘too good’. My CRP is not high enough. My ESR is only barely elevated. It’s often completely normal. These are the only measures that count in Australia. Four years of pain and suffering is clearly not enough to qualify me. I have a positive anti-CCP, but negative RF. I have had a nuclear bone scan that clearly shows inflammation in my hands, feet, hips and shoulders. I have also had an MRI on my shoulder, and ultrasounds of my hips and shoulders. All show clear signs of RA. But according to ‘the rules’ someone like me should respond to one of the other agents (methotrexate, leflunomide, sulfasalazine).

I didn’t.

So where does that leave me? I don’t know! I don’t see Rheumy again until May. I can’t even call him – the gatekeepers won’t put my call through. I swear they hire reception staff based on their ability to say ‘NO’ and rudely hang up the phone!

I’ve decided to try some diet interventions…gluten free. If anyone out there has tried it, please tell me what you found. Obviously I’m staying on all my current meds. I’m pretty sure I wouldn’t be able to move at all without those! But maybe I can get some improvement on some alternative therapies, like diet. Every little bit helps. We’ll see…