The truth about living with Rheumatoid Arthritis

#side effects

Rheumatoid Arthritis – what do you do when you can’t take the medications

rheumatoid arthritis medications

What if you can’t take Rheumatoid Arthritis medications?

I haven’t been online for nearly a week because I’ve been very unwell.  Only it hasn’t been RA that has knocked me down this time – it was an adverse reaction to my meds….methotrexate and prednisone.

As a result I’m going off all my meds.  (Doctor approved).  Except maybe plaquenil…it’s so innocuous it hasn’t done any harm.  Don’t think it’s helped at all either though.

Anyway, today is meth day and I’m not taking it.  I am never taking methotrexate again.  I was so determined to tolerate this drug this time.  But after my fourth attempt – and managing for six weeks – it’s over.   Some people can’t tolerate methotrexate.  I am one of them.

The really sad thing is I think it was helping my joint pain.  That’s one of the reasons I was trying so hard to persevere.  The other reason is that, being in Australia, if I can’t tolerate methotrexate or officially ‘fail’ methotrexate (3months at 20mg or more) there are no other treatment options.

Or that’s what my rheumatologist told me.  I know that some rheumatologists ‘fudge’ things so that their patients can get the expensive biologics.  Maybe I will try to find one of those.

Or maybe I am now so afraid of drugs and their adverse effects that I don’t even want to go there.

I am tapering off prednisone as quickly as is safe.  I’m at 6mg right now.  I’ll taper down by a 1mg every five days.  I’ve been on prednisone about 16 weeks now, so I can’t taper any faster.  Even though everyone agrees I need to get off this drug now and forever.

So in about 4 weeks I will be drug free.  I have stopped my Naprosyn.  I might still take plaquenil.  I haven’t fully decided.

As I have been tapering off prednisone, the pain has been increasing.  You will remember that the reason I went back onto prednisone, even though I swore I would never take it again, was because the pain got so bad, 24/7, excruciating, unable to function, that I needed some relief.  I was looking at walking sticks and not able to drive safely.

That was also why I agreed to try methotrexate one more time.  It was the only option. Or face a lifetime of pain.

My own determination to beat this drug was my undoing – I knew it wasn’t doing me any good, and I continued to take it.  I should not have.

It’s a week since I last took it, and I am starting to feel better.  I should take it tonight.  I will not.

I am going to find out what my baseline is now.  After five years of trying every medication under the sun and feeling a bit better, and then a whole lot worse, then a bit better, then a whole lot worse…rinse and repeat…I am now going to see what ‘normal’ for me is.  How much pain I truly have to live with.

As I’ve said before, I don’t have a lot of joint damage.  Or not visible on x-ray, anyway.  My fingers only swell sometimes, and there’s only a very little deviation.  My feet are the same.  I can see the changes in them, but they are definitely not severe.  My knees swell sometimes.  The pain in my hips, shoulders, elbows and ribs is completely invisible.  My bones pop and crack…but that’s not damage.  That’s just noise.

So I am now going to see what day to day life is like unmedicated.  I may have no option but to look at alternative therapies, diet, herbs, I don’t know what else.

I don’t recommend this.  My doctors agree that I need to go off all medications.  I am not saying anyone else should.  I am actually a bit scared of what’s going to happen over the coming weeks. I know I need medication.  But I also know that my body is not tolerating the heavy duty drugs.  So I need to ‘detox’ for a while.  And then, in consultation with my doctors, decide what to do next.  I see my rheumatologist in six weeks.  By then I will have been prednisone free for 2 weeks, and methotrexate free for 6 weeks.  I stopped taking Naprosyn six weeks ago, because my pain levels had improved so much I thought I would try to go without it.

So no more meds.  I don’t have a choice and I’ll document how bad “bad” gets here.  If you have any non-conventional medicine treatments that have helped you, please comment and let me know.

I am already taking fish oil and vitamin D.  I am going to exercise as much as is possible.  I can already feel that there are many exercises in the gym that are off limits from here on in.  The pain is increasing.  My grip strength is decreasing.  The distance I can walk is decreasing.

Wish me luck.

Methotrexate side effects – the never ending story

It is post methotrexate day.  I took my second dose of 10mg last night.  And this morning, I know all about it.

I am unbelievably nauseous.  I ate some dry toast washed down with water, just so that I have something in my stomach to take my other meds with.  You need to take NSAIDs with food, no matter how much you don’t feel like any food!

Prednisone I think goes down better with food also.  To tell the truth, I am not sure.  But I also take metformin which must be taken with food, so something as plain and inoffensive as possible is required.

My head is spinning and aching.  I feel dizzy every time I try to move, and my stomach feels like someone kicked me.  Hard.

This is normal for me on methotrexate.

Worse than all of this is that I am feeling very down.  Admitedly, all of the above is enough to get anyone down.  All of the above combined with the pain of rheumatoid arthritis is MORE than enough to get anyone down.

But usually I am able to paste a smile on my face, think of all the people who have worse autoimmune arthritis, or worse diseases than RA, and focus on the good things in my life.

Methotrexate saps that ability.  Methotrexate makes life seem bleak.  Methotrexate turns me into someone else, someone that I don’t like so much.

I have been tapering up slowly…and the last dose increase made me feel this way also.  Then it passed.  7.5mg is where the depression usually starts.  10mg is where the depression previously became unbearable.

It’s feeling that way right now, but I have to believe it will pass.  It will improve.  It is very hard to tell myself this, but I have to persevere.  Last Wednesday, when I took my 10mg, I felt OK the day after.  Then the side effects kicked in with a vengeance on the Friday.

Yesterday I was just starting to feel a bit normal again.  But yesterday was Wednesday, which is methotrexate night, so I had to take my dose and start the process again.

I actually stood there for a full five minutes with the pills in one hand, huge glass of water in the other and argued with myself about whether I was going to take them.  It is extremely hard to put something in your body that you know is going to make you feel appallingly awful, in the *hope* that in a few weeks it will start to make you feel better.

It is a testament to how appallingly awful Rheumatoid Arthritis is, that I will put myself through this in the hope of beating this disease into remission.  Ultimately, there is no choice.  Down the hatch!

I can only hope that each week, the side effects will get milder, and their duration will get shorter.  After six weeks of 7.5mg I was no longer feeling any side effects.  How long will it take with 10mg?  I don’t know.

I see my rheumy tomorrow, which is fantastic – I have a lot of venting to do, and he is wonderful.  I know he will be happy that I am taking methotrexate  – it is essential that I take it, if I am to have any further treatment options and for him to be able ot help me.

He wants me to get to 15mg, but he said if I could get to 10mg, he would be happy.  At this point, I am going to tell him I am going to stay at 10mg for quite a while.  Probably a solid three months to see if 10mg will have any effect on my joint pain, fatigue, eye issues, raynauds…it may just be enough to make life liveable again.

If I can just get passed these side effects….

Methotrexate for Rheumatoid Arthritis and the side effects

Today is post methotrexate day.  The day after I take my methotrexate dose, to treat my rheumatoid arthritis.

I take it just before bed, as advised by many who know the effects only too well, so that I can sleep through the initial side effects.

Unfortunately the side effects are severe, and they persist well beyond the 8 hours after popping the little yellow pills.  They include nausea, headache, dizziness and a delightful ‘I’ve just been kicked in the guts by a black belt’ feeling.

And they have mood altering effects. I have been tapering up on methotrexate very slowly.  I have tried to tolerate this drug four times before.  Each time the side effects have dropped me.  The worst side effect?  Depression. Not mild depression.  Major depression.  At times, suicidal depression.  A complete hijack of my mind and feelings.  Total deadening of every positive emotion,  leaving nothing but a void of despair and misery.  A complete inability to see anything light, to see anything changing, so see a way out of this life of constant pain and disability. This is not me.  This is methotrexate.  This is what it can do.  This is what it does do to me.

So why am I taking it again?  I am in Australia, and here access to newer, TNF blockers and biological treatments is very tightly regulated.  If you’ve read other posts you’ll know I have seronegative rheumatoid arthritis, and my acute phase reactants and inflammation markers are seldom raised.  So I don’t quality for these drugs.

I have tried all the other options open to me, except Arava.  My rheumy thinks Arava (leflunomide) would be A Very Bad Idea, based on his experience.  I tend to agree.  I have tried Salazopyrin (sulfasalazine) twice and failed.  I have tried Imuran – the mood symptoms were worse than methotrexate.  So those are all the drugs available to me for moderate to severe RA.

I take plaquenil, but it’s only for mild RA, so no surprises that it doesn’t control my symptoms.

Methotrexate is the gold standard treatment for rheumatoid arthritis.  It is cheap.  Many people respond very well to it, and have few side effects.  And from all I’ve been told, the side effects lessen with time. I have been back on methotrexate for 9 weeks.  It’s a pill you take once per week.  My rheumy wants to get me to 15mg per week.  He will be happy if I can get to 10mg per week.  The lowest possible therapeutic dose is 7.5 mg per week.  Again, this is usually for people with mild disease.  Or children and teenagers with JIA. I can tolerate 5mg with few problems.  At 7.5 mgs I start to feel the depression kick in.  At 10mg I start to feel like life is not worth living.

So to combat this, I have been tapering up the dose very, very slowly.  I started on 2.5 mg for two weeks.  Then 5mg for five weeks.  I have just taken my second dose of 7.5mg. Side effects?  They are what you would expect.  For the last few weeks I have been plagued with negative emotions.  Thoughts come into my head and get lodged there.  Not nice thoughts.  Stupid thoughts.  Nasty thoughts.  Sad thoughts.  I try to push these away, and remind myself they are just thoughts, but the methotrexate is amplifying them. Everyone has these kinds of thoughts hundreds of times a day, but somehow the methotrexate makes me hold onto them.  So I have to make a concerted effort to let them go.  Don’t give them a place to dwell.  Do not allow them to grow.

This is not easy.  I am already fighting my body every day.  Now I am fighting my mind as well. I am also still taking prednisone – tapering down.  I am at 12.5mg per day now.  As I taper down, the pain is increasing, the fatigue is returning.  I have always fought depression with hard exercise…as the prednisone decreases, my ability to exercise hard also decreases.  The constant catch-22 of rheumatoid arthritis, and its treatments.

But I need to persevere.  Thank the gods no one can read the thoughts stomping around in my head!  I will continue to paste a smile on my face, and force myself to go to the gym, get some design work done, work on my blog, care for my children.  All the day to day mechanics, that will keep the cogs of my life turning. I must never let them stop. I must not fall in a hole.  Because it is so much harder to climb back up once you have fallen down.

I have been there before, and learned this the hard way.  Even if I am only going through the motions right now, my life appears to be travelling as normal to everyone else.  A few friends might notice I am not as social as usual.  That’s fine. Because if I persevere with methotrexate, at least I have hope.  It may help my symptoms, reduce my pain, in time.  I am cheered by others’ assertions that the side effects will fade.  I just need to stick it out.  And it if doesn’t help, failing methotrexate for once and for all will at least open more treatment options to me.  I can then try the next drug. And maybe the next one.  Until the day I find my magic bullet, my combination of drugs that will return my life to my control, and no longer the control of Rheumatoid Arthritis.

Prednisone – when the side effects start to outweigh the benefits

Prednisone is like that sweet talking bad boy that you keep going back to even though you know he is going to break your heart.

I’ve been on 25mg of prednisone for a week now.  So for the last five days I’ve been on a pain holiday.  Let me be clear though  – I haven’t been pain free.  The pain has been mild. It has still been constant – particularly in my hands and feet – but mild.  A ”4” on my pain scale.  Which, for me, is awesome!

I have been sleeping at night.  All night.  Pain has not woken me once.  I have not walked around and around the kitchen trying to loosen up my stiff aching joints while I heat up my wheat bags.  The microwave has been quiet after 9pm.

This is what it was like in the very beginning.  The first few weeks… Before it hit with a vengeance and knocked me down hard.  Back when I had mild RA.     I found it hard then, but it is blissful to me now.  Five years of perspective in action.

But back to the point.  I have been feeling pretty darn good, comparatively.  From not being able to walk to the bathroom, to back in the gym jogging on the treadmill.  This is the power of prednisone, its seductive charm.

But like all bad boys, there’s a catch.  The side effects are kicking in.

Today my head is aching.  There is pressure behind my eyes, and my vision is blurred around the periphery.  I have heart palpitations, and my blood pressure is right up.  Lying here on the couch, my resting heart rate is around 95 beats per minute.  It’s usually about 65.

Prednisone is starting to mess me up.  Again.  And here’s the cool thing.  I can’t just stop taking it.  Even though it has only been a week, that’s  long enough for my body’s ability to make its own cortisol to have become impaired.  I need to taper off slowly to allow my adrenal glands to recover.

Which means these side effects will now continue for a while.  As I lower the dose, they should lessen.  I don’t know at what dosage the headache will fade.  The pressure in my eyes is probably more of a problem.  My vision is not so good right now.  Not a lot of point visiting my GP – I know what he will say.

Something along the lines of ‘the prednisone is messing you up’ only in medical words with more syllables.

So tomorrow I will drop down to 20mg.  What will that do to my pain levels?  You wouldn’t think much.  But past experience says I will be feeling considerably more pain, and still have a whole bunch of side effects.

I could do a fast taper, but the last time i did that, the quick reduction brought on a bipolar episode.  A few days of mania, followed by a few days of the darkest depression I have ever experienced.  I will not risk that again.  This taper will be slow.  A slow farewell to my seductive bad boy.  Until we meet again…

Rheumatoid arthritis treatments – adverse drug reactions

Drugs can be amazing, life restoring, magical things.  With rheumatoid arthritis, and similar diseases, drug treatments can give people their lives back.  The right combination of DMARDS can put them in remission and allow them to do the things they used to do.  Return them to whole.

And then sometimes drugs can kill you.  Or almost.

Serious drug reactions are rare, we’re told.  But they do happen.  And when they happen to you, they feel much more than serious.

Recently I tried a new drug.  Fairly innocuous compared to some of the other drugs I’ve been on…and here’s the rub – I’d taken it before.  But not along with the other four rheumatoid arthritis drugs I was taking this time.  However it’s really common for us inflammatory arthritis types to be on several DMARDS, an anti-inflammatory, some pain meds, maybe even an anti-depressant.

So sometimes maybe it’s the combination that does the damage.  It’s just not possible to study every possible combination of drugs…so adverse reactions can and do happen.  Sometimes they are very serious.  Sometimes very serious indeed.  I am purposefully not saying which drugs or combination of drugs I was taking.  Truth be told, no one knows whether it was the new drug, or the combination that caused the reaction.  I don’t want to scare people off a drug that may be the lifesaver for them.  The drug risk/benefit equation is one we all have to weigh up for ourselves, as best we can.

With me, whatever it was, it was scary.  I became very, very sick.  I couldn’t eat.  Couldn’t keep water down.  I developed a chest infection, and started coughing up blood.  I was so tired I literally couldn’t get out of bed.  Everything stopped.  My stomach ached, my head was exploding…on the upside my joints hurt less.  Or maybe too much else was hurting for me to notice the joint pain.

The worst thing was the chest pain.  The scariest part.  Is it my heart?  Or is it just my ribs are so inflamed that they are squeezing the breath out of me?  Who knows?  I’ll need an ECG to find out if my heart is OK.  Great!  Another expensive test.  But I have to check…I know I’m not having a heart attack, but pericarditis?  Pleurisy?  Or costochodritis?  All are pretty common for people like me.  All present with these symptoms.

Anyway, since I stopped that drug, I am improving.  Nausea improved, dizziness improved, I am eating solids, and getting out of bed. Of course my kids were terrified, and my husband is sick and tired of this too.  How much longer will he tolerate it?  We are already separated.  In one respect it’s fair for me to call on him when I need help with the kids.  In another, its not.  Not at all.

But things are *improving*.  And I’m feeling like it’s time to try some alternative treatments.  As I look back over my long history of trialling different drugs, I’ m not sure that any have helped that much, and I’m very, very sure that some have made things considerably worse.

So I’m going to see what else is out there.  Try a gluten free diet again.  Force myself to do yoga and lift light weights and take fish oil supplements.  I’ve recently read some studies on curcumin that are promising.

Ofcourse ‘natural’ or ‘alternative’ doesn’t mean ‘harmless’.  Sometimes adverse reactions are caused by the supplements we take.  Or the supplements combined with the medications.  The way I see it, anything that can have a beneficial effect (that isn’t a placebo) can also have an adverse effect.  It’s a crap shoot.  We do our research.  We weigh up the potential benefits versus the potential side effects.

And then we cross our fingers and hope that this treatment will help, not hurt.