At the end of the road with conventional Rheumatoid Arthritis treatments…now what?

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Right so here we are then.  Back in full body mega flare land.  What have I proven?  That without drugs I am unable to live any sort of reasonable life and I have constant, severe pain.   Good to know.

I have started taking  my Naprosyn again.  Sadly it doesn’t work immediately.  It got to the point where it didn’t work much at all, but I’m not going to dwell on that.  The idea that it may not work doesn’t please me, so I’m going to take the mature approach and ignore it.

So I’m taking Naprosyn…it’s doing Sweet FA.  I’m down to 3mg of prednisolone…it’s doing Sweet FA.  I’m still on plaquenil…it’s been doing Sweet FA for several years now.

As far as I’m concerned I have failed methotrexate convincingly…the doctors see it differently.  I have also failed sulfasalazine.  The doctors see it differently.  We all agree that I have failed plaquenil.  All agree that it is just too mild a drug, and my RA is not mild.

But my RA is not *typical* and so I don’t qualify for any other treatments.

I also tried Imuran (azathioprine), but the side effects meant I didn’t last long on that either.

The doctors feel I haven’t given these drugs a long enough trial.  They are slow acting and you need to be on them for several weeks to see any improvement.  The side effects, however, kick in right away.

Methotrexate, sulfasalazine and azathioprine all cause major depression.  They all also cause nausea, diarreah, headaches, stomach aches, fatigue…but all this is bearable.  Spending your entire life being severely depressed is no better a life than spending it in severe pain.  It’s just a different kind of pain.

And I know that RA, in and of itself, can cause depression.  Or rather the pain and disability that goes along with it causes depression.  Who wouldn’t be depressed when every joint in your body aches all the time?

But this is different.  Medication induced depression is different.  And it doesn’t respond to anti-depressants.  I tried that too.  Several of them.  No effect.

Anyway, the point is I have tried every treatment option available to me.  I don’t meet the qualifying criteria for biologics in Australia.

So now all that is left to me is alternative therapies.

Diet.

Acupuncture.

Supplements.

In the past I have tried all of these.  Some have no effect, some seem to help a little bit.  I think something that helps, even a bit, is worth doing when things are as severe as they are now.  And for me, following a ‘clean’ diet is pretty easy.  I have always been a health nut and ‘indulged’ in sweets and processed foods only occasionally.  So diet is easy.

Acupuncture seems to help with stress.  It is expensive, but right now its worth it.

Supplements are very expensive.  And I don’t know if they help at all.  Again, they might help for milder versions of RA.  But I have a month’s supply and I will start taking them today and see what happens.

I’m also looking at other alternative therapies.  Antibiotic protocol.  Helminthic therapy.  I will research and blog on those later.

I finally got through the gatekeepers and spoke to my rheumatologist No.2.  She told me to get back on methotrexate, sulfasalazine and up my prednisone again.  I won’t take methotrexate.  I won’t take sulfasalazine.  Prednisone is just kicking the can down the road a bit further.  But I might have to do that.

I don’t have another choice.

10 COMMENTS

  1. Is it worth trying a different Nsaid. Naprosyn didn’t do much for me, but Voltaren helps. I take the slow release type. Still with the Nsaid you need to take something to protecy your stomach.

    If the RA gets worse will it start to look more typical? Can you look for a clinical trial? Or maybe try to see the top guy in Australia?

    Sorry I can’t help much. I have a friend in Australia with RA. I’ll get Jody to read your blog

    Annette

    • Thanks Annette, I apprecaite your comments. I have tried all the nsaids, and naprosyn is the best…followed by voltaren. Glad it helps you too :). I have recently applied for a clinical trial – funny you should mention it! But it required comcommitant methotrexate so I didn’t qualify. I’ll keep looking tho. Tell Jody I’d love to hear her story 🙂

      cheers

      Arthritic chick signature

  2. Hi its Annette’s friend Michelle here. Annette passed your blog along to me as I live in Australia.

    Is there a reason that you can’t take Methotrexate? I’m currently on MTX injections and have been for several years. I was on the tablets at first but eventually changed to MTX intra-muscular injections. After a couple of years of that I threw a hissy fit because they hurt and I was just fed up with all things RA. Eventually I went back to the injections as they were then available as subQ injections. I tried Sulfasalazine and had a severe allergic reaction called Drug Fever which ended up with me spending 3 days in hospital.

    I’ve tried Plaquenil twice and am no longer on it. The first time I was on it for about 8 years and then it lost its efficacy so I went off it. I went back on it about a year ago but it wasn’t working well and my rheumy wanted to try another biologic and I couldn’t be on Plaquenil if I wanted to try a biologic.

    I’ve tried Arava which gave me chronic, severe diarrohea which wasn’t diagnosed for a year because I had trouble with my gall bladder at the same time. It wasn’t until I had my gall bladder removed and still have the diarrohea that my GP realised it was the Arava so I stopped that immediately.

    I’ve been on Humira (biologic) but that only made me a lot worse. I’ve been on Enbrel which I was allergic to. I was then in a clinical trial for a biologic but even though the doctors thought I was getting better I actually didn’t feel like I was so I withdrew from the trial. I’m not doing Orencia subQ injections. At first they were monthly infusions but then they changed over to weekly injections.

    So as you can see I’ve had similar issues to you with medications either not working or I’m allergic to them and some of them the side effects have been so severe I haven’t been able to continue. The rheumatologist gets frustrated sometimes but I just tell him that if he’s frustrated then I sure as hell am just as frustrated.

    I’ve only been on Prednisolone for a very short period of time and that was quite recently. I’ve also had quite a few cortisone injections in my joints.

    Have they told you why you don’t qualify for biologics? I know that they are hard to get approved for and my rheumy did have to work hard to get me on them. I also think its absurd that we are restricted to a certain amount of biologics in our lifetime. I know that the cost is an issue but still…..a persons health and ability to live and function should come into it as well.

    If you want to chat more you can email me privately if you want.

    • Thanks Michelle, its great that your rheumy put in the effort to get you on biologics. Very sad that they haven’t helped you either. That’s the irony of it all – we fight hard to get drugs that get steadily more dangerous with risky side effects…in the hope that we can live something close to a normal life. I’ve had lots of cortisone injections too – now I’ve just given up and gone back on the prednisone. Its the only thing that really works. And maybe its safer than biologics? I guess that’s what I’m researching now. Maybe I am better off just accepting that I need to be on prednisone and deal with the long term problems it causes when they arise.

      I also think trying five biologics is ridiculous! Australia is a fairly wealthy country – how many people could access biologics on one year of an MPs travel allowance??? So you’ve had three…I hope the Orencia is working, and keeps working. You have definately had a long, rough journey and frustrated is not the word I would use! Good luck and take care.

      Arthritic chick signature

      • I can’t take prednisolone as it gives me back headaches and nausea. I felt miserable for the whole ten days that I was on it.

        I couldn’t agree with you more about the MP’s travel allowance. If they would only give up some of their perks they may be able to help their citizens a little bit more.

  3. Have you tried Curcumin? It helps with my inflammation. It is a supplement that is relatively inexpensive. I had to stop Sulfasalazine. Awful headaches, insomnia. I just stopped the Methotrexate because I no longer have insurance and I’m in need of blood work. The side effects just seem to be getting worse from it. I hope you find a “cocktail” that works for you.

    • Hi Lee Anne,
      So you are on no treatment at all? I understand the side effects outweighing the benefits. I have tried curcumin…maybe it helps a little? Hard to say. I take several supplements…I figure lots of ‘helps a little’ add up. The only thing that really helps is prednisone though. Still looking for that cocktail. Good luck – I hope you find yours soon.

      Arthritic chick signature

  4. Hi there, I happen to know Michelle, Annette and Jody and I agree it may be worth speaking with Michelle (she’s going to look over your post). I just don’t get this ‘typical’ RA, what exactly does that mean??!?! You hurt like heck right? Fatigue? Stiffness etc etc. Do they mean that you’re RA is harder to treat? Everyone that I know with RA, myself included, respond to different meds in different ways. What works for 10 people may not work for the next. I failed on sulphasalazine also, but have now been on mtx for 18 years (bleaugh), I’m also now on plaquinil which does help some, not a huge amount but some. I’ve also been on Voltarol for 20 years and it does work well for me.
    I also don’t get how they can say you’ve not failed on the other meds, but yet keep you on the drug that they do agree isn’t working??!
    But nothing makes me more angry that seeing someone who’s failed on all the dmards and yet still doesn’t qualify for the biologics. We have all these amazing new drugs, yet those most in need are denied a shot at them working.
    I would also like to add, if you’re trying alternative stuff that I’ve personally found yoga to be very helpful to me.
    Good luck in your journey, remember you are not alone.

    • Hi Gillian,
      Thanks for the yoga tip – I do a class that is a fusion of yoga and pilates to uplifting music. It is amazing and keeps me more limber. Plus it lifts my mood! Its great therapy!
      I know there have to be rules, but they do seem ridiculous to me. You’re so right about ‘typical RA’. I think that’s just what they say when you’re not responding they way they’d like. I understand their frustration, but as Michelle said “You’re frustrated??? How do you think WE feel?”

      It helps to talk with others in the same boat. I’m sorry that we’re all suffering, but I guess we just have to fight to get the rules changed!

      Arthritic chick signature

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