Trying something new

After 12 years of living with palindromic rheumatism and experimenting with various lifestyle and dietary changes I’ve made the decision to start taking new medication in addition to the hydroxychloraquine that I already take.

Doing yoga and avoiding gluten and eating healthily has served me pretty well. But it has not cured me. I am still flaring. I am still fatigued. And I am still none the wiser as to what triggers a flare, or what will make it go away once it’s there.

I’ve resisted taking methotrexate for a long time. The side effects looked too scary, and I kept reasoning that as I was generally coping with my arthritis, there was little point in putting these scary drugs into my body.

But sometime over the last twelve months, my perspective has shifted a little. I experienced a three month wrist flare in the winter which led to a lot of stress and worry that permanent damage was likely. I’ve had scans and x-rays and luckily, that’s not the case. But even so, living with that constant flare for three months really did interfere with my quality of life and ability to do some of the simplest tasks. My yoga practise suffered too.

On top of that, the unpredictability of flares, and an extremely severe shoulder flare a couple of months ago made me think “You know what – you don’t have to live like this” and decide that it was time to try something new. I felt like a failure at first and had to work through a few feelings around that, and the fear that comes with starting something new and potentially as damaging to my health as the arthritis itself. But I reasoned – if there’s a problem, I come off it. If the side effects are horrible, I come off it. If there’s no change. I come off it. I’ll be no worse off than I am now.

As well as the fear, there’s positive emotions as well. The fact that methotrexate DOES work for a lot of people gives me some hope. I know people taking it with no side effects at all. And the idea of being pain and flare free, even if it only works for twelve months, is extremely appealing.

I started my first dose on Sunday, and will be taking folic acid four days later. I will be closely monitored at first (blood tests every two weeks) and will be careful to stay away from people with horrible infectious diseases as I will be more likely to catch infections and illnesses as a result of the drug.

I’ve been told that it will take around three months to know if it’s working, so for now, it’s a waiting game. I wait to see if there’ll be side effects and I wait to see if it’s going to work. In the meantime, I continue with the lifestyle changes that I know help me, even if they don’t cure me.

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22 responses to “Trying something new

  1. I am sorry you are going thru this.
    I suffered almost 2 years with Palindromic Arthritis. I ended up trying low dose antibiotic therapy (Minocycline 100mg 3 times a week for three months and then once a week for three months).
    It worked…..in the beginning it felt like it wasn’t but I never gave up.
    My Rheumatologist wanted me on Methotrexate as well and I requested that we try this first and I am so happy I did.
    Take care!

    • Thanks for your comment Penny. I did try low dose antibiotic therapy (doxycycline) – there’s a couple of posts about it. It didn’t really work well enough for me. But I’m really glad it works for you. That’s the trouble with PR. What works for one person, does not work for everyone.

  2. I’ve also got the same as you,
    I’ve took up swimming , and found it very helpful on the joints ,
    I also take The same medication with you.
    Try the pool it do help , regards Jean

    • Thank you. I do love swimming, but at the moment I prefer doing my yoga and zumba classes. They don’t seem to cause problems for my joints and they really lift my mood. 🙂 I should swim more often though, but it’s finding the time.

  3. fingers crossed it works Ruth. as you know i have been struggling with those horrible migraines and recently they became too frequent and unbearably severe, i am trying a new diet which i had never heard of before: a low Tyramine one… i must say my digestive system is happier an and i have more energy, whether it will solve the migraines is another question…i am waiting to see

  4. This is the roller coaster- I’ve been on it for close to twenty years. I’m writing now to make you aware of one thing- something I didn’t know. A couple of years ago I had genetics testing done. As it turns out, I have a gene mutation that is quite common- called MTHFR. Basically, those of us with the mutations (both C677T and A1298C) are unable to process Folic Acid/Folate properly. It builds up in our systems, leading to health issues. I have wondered what role this has played in PR and my subsequent development of RA and Lupus. All of which I manage pretty well on the gluten free, wheat free, dairy free diet and 3 mg of Prednisone daily now. When I tried Methotrexate many years ago, it wiped out my white blood cells, so, even though I felt pretty good on it, I came off pretty quickly. Anyway, before you begin taking Folic Acid, it might be worth investing in genetic testing to see if you have the same MTHFR mutation(s). Taking Folic Acid would not be good for you if you do.

    • Thanks for your comment Nancy and for making me aware of this. There seems to be so many things to consider. I haven’t had that genetic testing or even heard of it. I will be monitored very closely with blood tests, so I will mention it at the next opportunity and do a little bit more investigating. Good to hear that you are managing things by following your diet. I wish that’s all I needed to do.

      • Nancy Cardone

        It is not easy- over the years I have been on all the medications- from Plaquenil to Enbrel and Humira- and everything in between. I made a decision to go off every medication I could, as the side effects were getting worse than the problems. So far I’m hanging in there, but who knows for how long. Hence, the roller coaster. I had the genetics testing through “23 and me” – it’s mail in and relatively inexpensive and it is fascinating to read through the results, as a side note. But, the main thing is, because I know I have that mutation, I am taking a different form of folate that I can absorb- in Vitamin B12 (Cobalamin), Folate Methyltetrahydrofolate and I am almost a new person. Leading me to wonder about the connection- we are all looking for answers, right? I wish I could see how many of us with PR have this mutation. Anyway- best of luck- keep us posted.

  5. Good to hear from you! Hope all goes well. I have tried Methatrexate before and had good results. The side effects can be bad I the beginning but the folic acid helps and in time they decrease. Hang in
    there and keep us posted💐

  6. Good luck Ruth! I’ve been on MTX for years for RA with few side effects and good results. I hope you’re the same! 😀

  7. I’ve just been diagnosed pr waiting results on naproxen at the moment , as I’m writing this I’m missing another day from work xx

    • I hope naproxen brings you some relief. It did nothing for me. None of the anti-inflammatories have worked for me in fact. Naproxen is a painkiller, so it might work on the flares, but it won’t stop them from occurring – your rheumatologist will need to prescribe what’s known as disease modifying drugs for that.

  8. I saw my rheumatologist the other day and he suggested I go on Methotrexate as well as hydroxychloroquine. I too have resisted and managed reasonably well with diet and energy management regimes but lately have become a bit worn down by never having pain-free days and almost constantly having shoulder pain but my light bulb moment was the other week when my right foot flared for a week and my toes were double the size. I couldn’t put weight on my foot or put shoes on so I was pretty much chair-bound and I too wondered why I was struggling on resisting medication that may give me pain-free periods. I was also given the option of Sulphasalazine instead and given leaflets on both. He said he would tell the GP that the choice was mine and she could start me on either after appropriate bloods/xray if I went to see her – which is much quicker than trying to get to see him again once I decide. Its funny how we all seem to resist increased meds – for me, I wonder if there is an element of not being willing to admit to myself that it is as bad as it is sometimes.

    • Fiona Did you go on Methotrexate and Hydroxy? I am on Hydroxy and they want me on Methotrexate as well. I have fairly manageable pain, but they are saying that it should slow it down and as I have RA as well it is preventative – ie should reduce the amount of damage and as I said slow down the progression. Current practice is to start treatment early.

      I think there’s a lot of truth in your last sentence – I am not sure I want to believe it’s bad enough to have to take such toxic sounding drugs. Maybe I am exaggerating (even to myself). Maybe if I could just mentally toughen up a bit the pain isn’t really that bad – it’s just a bit in my head. I just don’t know. I don’t want to be an ill person….

      I am ok on the Hydroxychoroquine – the initial side effects are improved, but I am frightened of Methotrexate

  9. I think I may be in the early stages of this diagnosis…reading about palindromic rheumatism has been a revelation, these are exactly my symptoms! I’m suffering from extreme pain on and off, but it seems by the time I get to the doc I’m symptom free and feel like they think I’m crazy as they examine me to find nothing. Blood work and X-rays normal, but for almost two months debilitating pain migrating through all of my joints. Do you have any advice for me as I start this journey? I’m seeing a rheumatologist (only had one appt so far, she’s ordered more tests). should I be asking for her to look for something specific, or is this really a diagnosis based on a process of elimination? Thank you for sharing your story!

  10. I just learned that I have PR and am trying to learn as much as possible about it.

    I am looking for a rheumatologist and don’t even k ow where to start with my questions. I am going to start keeping a log to share. Do you have any other suggestions?

    Thank you for sharing your story and bringing thing to light. It is very frustrating and painful during the flare ups.

  11. Thank you for your quick response! I have officially been diagnosed with PR…just at the beginning of this journey! I’m so glad I found your blog. I will follow closely!

  12. I have had the diagnosis of PR for almost 5 years. It seems to be the same as it has been from the beginning, Flare up, pain, then no pain, then it starts all over again. I have read a lot on going Veg, but not seeing any difference. I did Gluten free for 1 year, no difference. Now I am thinking about just pulling Red meat and Dairy out to see if that works. I have read the research, and maybe we are not supposed to be eating mammals..
    Anyone with some good advice that worked for them?

    • I am finding that limiting dairy has made a difference. I never ate meat anyway. I think it’s just trial and error for everyone really to see what the triggers might be. and sometimes, I think it’s just random and there is no rhyme or reason for it.

  13. claudia cerrato

    Oh my goodness I am so glad that I found this blog! I was diagnosed this past January with PR and the rheumatologist that I saw wants me on methatrexate. I have two friends that took that for chrone’s disease and said it severely compromised their immune systems which is what I keep reading about. So since January I have been off gluten, dairy, sugar, all grains, etc…and have seen a naturopath who gave me curcumin and collagen supplements. Sadly it doesn’t seem to be working…Maybe once a week I’ll have a pain free day but for the most part I’m in constant pain whether it be my shoulder, knees, hips, wrist, fingers, even my jaw at times. And the fatigue…I’m just wiped out all the time. So now I have an appointment with a new rheumotologist next month because I think I have to cave and go for the drugs. Going to try a few more diet things in between now and then so we’ll see. Anyhow, just sharing my story and excited to read more of your blog when I have time and don’t have to run to pick up the kid!

    • thanks for taking the time to comment on the blog. I have not posted for a while – but will make an effort to update sometime in June. Worth experimenting with diet as a lot of people do feel there is something in it – though not always the same triggers for everyone. and yes, the fatigue is really debilitating at time. mine definitely improved when I gave up gluten. Good luck. Ruth

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