Rheumatoid Arthritis, Enbrel and the next set of choices, part 2

by admin on June 25, 2013 · 19 comments

what does a rheumatoid arthritis flare feel like

Image source: http://www.anesthesia.org/images/pain3.jpg

Ok, so down to the choices.

They suck.

Anyone who has been dealing with Rheumatoid Arthritis for a while, and hasn’t found their magic combination of drugs yet, and HAS had to deal with all the pretty side effects, will know exactly what I mean.

In Australia, to access some biological drugs – bDMARDs – you need to take methotrexate concurrently.

Last time I took methotrexate, I had a reaction to it that nearly killed me.  Put me in hospital.  Scared the crap out of everyone around me.  Scared the crap out of me, most of all.

I had this reaction after six weeks at 10mg of methotrexate.

To access medicare subsidised treatment of Abatacept (Orencia), Golimumab (Simponi), Infliximab (Remicade), or Rituximab( Mabthera) you need to be taking at least 7.5mg of methotrexate weekly.

Out of the eight biological DMARDs available, four require methotrexate.  You can only try five biological drugs over the course of your life, under a medicare subsidy.

I have tried one.  That leaves four.  If I don’t take methotrexate, that leaves three.  My rheumatologist has already said Humira is not a good choice for me.  It’s likely that Cimzia will cause me problems also, going by previous experience.  That leaves Actemra.  I believe I need to try another TNF blocker before I try Actemra, though the literature isn’t completely clear.

So that means methotrexate.

The drug that almost killed me.

But…I only need to take it at a lower dose.  I didn’t have problems at 7.5mg.  Worth the risk?

Tough call.  Very.  Tough. Call.

The other option?

Prednisone.

Prednisolone is loaded with side effects.  BUT it keeps the inflammation at bay.  It gives me maybe 60% of normal?  Some days are awesome on prednisone.  Some days are still hell.

It doesn’t stop flares completely.  It doesn’t take all of the pain away.  But it makes it ‘moderate’ pain, rather than knock-down pain.  And NO I do NOT have a low pain tolerance.  If I hear that one more time I WILL slap you J.

Prednisone gives me a life.  A Reumatoid Arthritis impaired life, admittedly.  But on most days, I can walk. I can work. I can go to the gym.  Two days a week are still a write off.  But five are OK.  That might sound suck-worthy to non-RA sufferers. But I think any long term sufferers of severe RA will understand.  Prednisone gives me a life.

Without prednisone, I am couch-bound.  I am doped out on morphine and endone and red wine.  I am doing the bare minimum.  I am keeping my kids alive, but I am not wholy present. And there isn’t a whole lot of fun.

My doctors (two rheumatologists, and and general practitioner) tell me I must get off prednisone.  But it’s the only thing that helps.

Methotrexate is the door to other treatment options.  One of which might give me more improvement than prednisone has.  Might J

Anyway, I thought and thought and researched and read.  And I finally decided.

And once I made my decision, much of my stress left me.  So much misery is bound up in indecision.  So I try not to stay there too long.

Last Thursday I took 5mg of methotrexate.  Just the usual side effects…nausea, that ‘kicked in the stomach’ feeling and headache. And fatigue. It passed after a day.  It’s fine.  Compared to RA, it’s not a problem.

So tomorrow I see Rheumy.  I have to tell her I have started taking a drug I swore I would *never* take.  (Credibility issues…).  I need to explain my reasoning to her.  Then I need to see if she agrees.  Having been in severe pain for a few weeks now, its just possible that I’m not making the best choices.  I don’t have a partner I can talk to, bounce my logic off.  I just have me.  And my reasons.

And what’s my reasoning really?

I have a friend who recently started Simponi.  He hasn’t had a flare since he took his first shot, three months ago.  I want what he’s having.

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{ 19 comments… read them below or add one }

Sarah June 25, 2013 at 10:48 pm

Oh, my darling I feel so bad for you, having too choose between hell or vegitating. That’s what I often feel like, for the last 4 years I have not lived, just vegitating. The Cimzia did not work, just had my first dose of Enbrel, so waiting to see. I do tolerate 10 Mgs of methotrexate but I can only take 10 mg of prednisone, as I get really weird side effects. I have been house bound for nearly a year now, and have put on 40 kgs, so the weight on my joints is not helping. I have decided to have gastric surgery to make me lose weight, as I feel I am at risk of heart attack and stroke. I think of you every day, and hope that you get that magic formula. You need to do what ever you need to do to get your life back, even agreeing to take methotrexate. There is nothing more valuable that LIVING LIFE, especially for our kids. I look forward to the day I can take my kids out to play, or sit at the movies. Today I have no funny antidote for you, sorry but my pain has worn me away. I hope you get well soon, and mayby can come up to the Gold Coast some time, so we can hire a couple of mobility scooters and paint the town red! Keep well. Xxxxxxxx

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admin June 26, 2013 at 9:12 am

Sarah you are a lovely lady! I will get up there one day – then just watch us!!! I truly hope that Enbrel works for you. It has helped me some…just not enough. But maybe with the addition of the methotrexate. Live in hope. For me, for you and for all of us that have had our lives decimated by this disease. Good luck with the gastric surgery – that’s a big move. But if that’s the best thing, then I wish you a speedy recovery. My prednisone weight is only 10 kilos, so its manageable. Would be great to lose it, but I have bigger issues…lol. I used to be 20 kilos heavier tho…and losing weight did make me feel a lot better. Not so much with the joint pain, but just feeling more positive on the whole. Stay in touch and tell me how you go – I think of you often too. School holidays coming up…I hope we can both enjoy some time with the kids :) Take care xxx

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Sarah September 14, 2013 at 7:56 pm

Great news Enbrel seems to be working, I have been cooking every night, cleaning in very small amounts. The dr even decreased my prednisone, dropping 1mg per month. Ye.ah I may have a life after all!

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Megan June 26, 2013 at 12:54 am

I also swore to never take methotrexate again as it was the worst time of my life on the injections of methotrexate. I got a horrible lung infection that no one knew what it was and they wanted to do lung biopsies and my throat was so bad I cried every time I ate or drank anything. I was throwing up everyday and could barely breathe because of the lung infection combined with a throat that was so swollen I should have been in the hospital. I’m still not sure how I lived through that and it took me 6 months to recover after I forced my RA doctor to take me off methotrexate. So, although I have not had to take it since then, I am pretty terrified of ever taking another injected medicine and have told my doctor I refuse to do it until after I try to have kids. I just turned 30 and I’m engaged to be married and I have no children yet. I’m lucky though that my pain is not incapacitating yet, probably because I am younger and only have had RA for 5 years so my joints haven’t had such bad damage yet. Hope the next biologic injection you take works for you!

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admin June 26, 2013 at 9:30 am

Megan that sounds terrifying! I can understand your hesitation. Just remember that biologics are an entirely different class of drugs…(with entirely different side effects LOL). But you may well be able to tolerate them. I have horrible meth side effects, very few side effects with Enbrel. I think you’re wise to want to focus on having your family. I hope your RA stays in check enough so that you can do that. Lots of drugs can’t be taken during pregnancy. All the best to you!

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Maria June 26, 2013 at 2:22 am

You know what you need to do, so go for what you need to do to feel human. I also agree you need to come off Pred. I’ve stayed away from it as much as I could. Every once in a very long while I’ll do a pred pack …small 6 day dosing. I truly feel like Pred is like a narcotic. in the short term your Pain spikes and then after being completely off it awhile either you get used to the pain or your receptors turn back to normal not hyper pain receptors. It’s take this devil or that devil with this disease. I’m behind you…do your thing!

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admin June 26, 2013 at 9:26 am

Thanks Maria. Pred is certainly seductive….why does it have to be so effective??? LOL. Or rather, why does it have to have such terrible side effects? I’m leaning towards upping my dose…but I see rheumy in two hours and we’ll see what her opinion is. Its hard to live with this level of pain, when I know there’s something that will cut it in half. But its a double edged sword!

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Sue June 26, 2013 at 2:36 am

The one thing I hate most about Mx is that I had to give up wine…geesh, I miss wine!! That said, I hear ya on the side effects, BUT, they do go away after a while…as long as you survive that “while”. I take 5mg of folate every day which makes a ha-uge difference. I’ve also gone gluten/corn free vegan, which helps too and yoga has become my fix…from a psychological perspective. Lastly, marijuana helps with the Mx induced aggression/depression/anxiety and the RA pain. I never used it unitl I was Dx with RA and started Mx. I don’t use it often – only on the rough days (maybe two or three days a week in the evening).

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admin June 26, 2013 at 9:24 am

Hi Sue, I must admit I still drink my wine. I try to keep it to one glass. But being on such a small dose of mtx, I still have it. I just keep an eye on my bloodwork. So far its been OK. I hear a lot about marijuana…positive things. How it helps with pain and side effects. I have had major problems with depression induced by methotrexate. The marijuana helps that? I would absolutely try it, if so. If I could keep the mental side effects of mtx at bay, then I could increase my dose…which would be awesome, because I do believe methotrexate did help my symptoms. Thanks for the tip!

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Pat Coxhead June 26, 2013 at 8:43 am

Hi there…keep on keeping on and good luck with you choices. My life has been turned around since following the Paddison program for RA…there is information on facebook. Believe me I am only telling you this because of how it has canged my life which I can now live almost normally. This program has been made by Clint Paddison who has cured his RA. Well worth a read:-) Feel free to ask me any questions about this, Pat NZ

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admin June 26, 2013 at 9:07 am

Hi Pat. I have the book “Clint’s Cure”. I believe he’s expanded on it now, or rebranded it. I’m so happy that it works for you! Perhaps I need to revisit it and try again. Unfortunately I didn’t get good results when I followed his diet ideas before. But we’re all different. Diet change is definately something I think everyone should try. So many people get spectacular results. Its a tough program, so well done for sticking it out. Do you mind if I ask how long it took you to see improvement?

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Rhonda June 26, 2013 at 10:48 pm

It’s too bad those with the disease can’t be in charge of how the disease is managed in government. I bet many things would be different.

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R.A. Cellist June 26, 2013 at 10:54 pm

I’ve been fortunate to have no negative effects from the Methotrexate. When I went from 10 to 15mgs I noticed slightly thinning hair and change in the way red wine tastes (*sigh*). However at one point my Rheumy mentioned that Xeljanz is a possible swap for the Metho, in the event I felt like I wanted to try something different. They’ve started advertising it here in the US as possible med to take alongside a biologic (i.e. a replacement for the Metho). Good luck with everything!

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admin June 27, 2013 at 9:57 am

Do you get a ‘metalic’ taste from meth? I love my red wine :). Xeljanz isn’t available here yet…I didn’t realise it was a potential meth replacement? That’s great!

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Kaylene June 26, 2013 at 10:55 pm

I have only ever been on one biologic, Actemra. I didn’t have to try others although at the time mtx was still mandatory. I am up to dose 30 something as I decided when it was approved in Australia that’s what I was having!! Did my research, marched into rheumy’s office and demanded it. Two plus years later he commends me on the research saying it is still proving to be among the best results. Bloods have been normal for me since first dose however I can not give up my prednisone. I can so relate to the 5 days out of 7 functionality and it reminds me how good it is that we can share with other battlers.

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admin June 27, 2013 at 9:54 am

I’ve been reading a lot about actemra. Good for you for being so proactive and assertive about your treatment! Being informed is key. How much prednsisone are you taking?

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Sandra June 27, 2013 at 1:56 am

Just because your prescribed a medication doesn’t mean you have to take it. If you can’t get one unless your on methotrexate, get the script, fill it but don’t take it. Good luck

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admin June 27, 2013 at 9:50 am

Sandra, you’re not the first to suggest that…and I agree, its a valid strategy :)

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Megan Cooper July 16, 2013 at 2:50 am

I’m on Embrel and I don’t take methotrexate. I live in the US so maybe that makes a difference. I don’t know why you’ve all waited so long to start biologics. They’ve have saved my damage the arthritis is doing is irreversible. Also, some studdies have shown that early, aggressive treatment is the best and gives the biologic the best chance of working. I tired methotrexate at first and I was sleeping 16 hours a day. The side effects couldn’t be stopped, but there are ways of minimizing them. Increase folic acid and split the dosage over 24hrs. Also, slowly increasing the doseage. I now take sulfazine instead. Still with some nausea, but better than methotrexate! Life still sucks 1/2 the time, however, I’m learning to cope. Good luck to you.

Amen to Sandra! And yes Prednisone is a double edged sword. The damage it is doing to your bones over an extended period of time is far worse than the temporary gain. As little as possible, even though it feels so good.

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