RA Guy Adventures of RA Guy 18 Comments

DoubtRheumatoid Arthritis Guy has recently started having doubts about the change of medication (from Arava to Plaquenil) that his rheumatologist recommended last week. On one hand, this has nothing to do with anything that is going on in the present, but is instead related to a really bad period I had in the past while I was on Methotrexate. (My rheumatologist at that time refused to take me off MTX, even though I begged to be taken off this medicine…ultimately I took myself off MTX.)

So, the thought of taking any medication that I have not taken before scares me to some extent. I was scared when I started taking Arava almost half a year ago – but with the support of others, I reminded myself that I had created a rheumatoid arthritis support team that would be responsive to me needs and to my feedback. (I also reminded myself that taking a medicine which I was mentally/emotionally struggling against did not seem to make much sense.)

Other than my hair loss, I have not experienced any other side-effect (that I know of) with Arava. Compared to the side effects that I experienced while on Methotrexate (nausea, dizziness, heat-sensitivity, diarrhea, headaches, etc.), I would hoose my current hair loss over the previous list, any day.

But as with any medicine, there is a cost and a benefit that differs with each individual…so maybe it is indeed time for me to try another medicine, to see if it provides me improved benefits compared to the one that I am currently on. As with any other aspect of living with rheumatoid arthritis, my thoughts continue to go up and down.

On days when I am feeling relatively well, I ask myself why change and risk the unknown? Is it not better to stay on my current medicine?

On days when I am not feeling well, I tell myself start the change immediately! What harm can come from trying a new medicine?

Since last week, I have continued to jump back and forth between the above two responses. Luckily, I have a session with my psychologist this coming week, so I plan on addressing this issue more in order to come up with a firm answer.

Is it just me, or do others face similar issues when it comes to deciding which drugs to take and not to take?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 18

  1. Lana

    I can totally understand those feelings. I am about to start Humira injections in addition to my current Planquenil, Sulfazine, and Lyrica medications. I am scared, there is not question. I want to feel better, but I am so tired of the side effects of medications that we have to get used to. I have also never done my own injections. When I used to take Zolair for asthma that apprently don’t have anymore (another misdiagnosis), I used to go into the doctor’s office once a month.

    I have no advice to offer other than that life goes on. Whatever choice you decide, you have to live with it. I am survivor, I always move on despite how tough things get. Maybe, it’s because I am a mother, but I just do what I have to do and never look back. I always have doubts, but most of the time, I am too busy to doubt myself. To me, my diagnoses are just another stepping stone in my life, like anything else. I have seen and dealt with far worse. Perhaps if you focus on your conidtion being a minor obstacle in the whole scheme of things, then it will be easier to decide.

  2. Kelly

    I have been taking plaquenil for 9 years. I have to be honest….it is the one drug that I have refused to be taken off of. I feel it has made the most difference in making me feel good. I did take Arava and began having serious headaches and high blood pressure. Everyone is different. I understand your hesitancy to switch. I begged to come off of methotrexate, too. That medication didn’t do anything but make me lost a full day a week. Medication is a double edged sword. I know the serious side effects for plaquenil are rare but I still get my eyes checked every 9 months to be safe.

    I would ask your doctor to explain why the switch is being recommended now. Weigh his reasons with your gut instincts. Good luck to you!

  3. sara

    I agree with Kelly’s advice- ask your doctor more questions about why he’s recommending a switch, and then listen to your gut instinct. I’ve been on plaquenil since my diagnosis, so about two years and (knock on wood) haven’t noticed any side effects from it. I get my eyes checked once a year as well, but so far, have not noticed any changes or problems. It does make my skin a little more sensitive to the sun, but I’m also about as fair as you can get, so I have to be careful about that anyway.

    Good luck with your decision… and remember, nothing is written in stone either way.

  4. Tortoiselvr

    YES! I just began Humira last night (previously on MTX then switched to Arava – am still taking it). After two weeks of trying to get the medication approved through insurance, etc. it arrived. That was the day I decided two things: 1. I should let the Arava do its job alone and not add anything else (although I’ve recently just had a bad few weeks so obviously it may need some “help”) and 2. I really don’t have RA and I don’t need to take any medication at all (denial in its purest form :))
    Once I got past the two of those thoughts, I then began worrying about side effects, etc.

    I think it is completely normal for us to question these things – for me it has a lot to do with denial – because logically I understand why we’ve added the Humira and what the risks are taking it/not taking it.

    Best of luck as you wrestle with this one – and good luck whatever your choice may be 🙂 (you could always try it and if you don’t like it, switch back to Arava)

    – Tort

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    RA Guy

    Thank you everyone, for all of your comments.

    The reason for the change is because even though I have been on Arava for six months and it has helped, I continue to have very frequent and severe flares. I agreed with my doctor’s assessment that while it is working, it would be ideal to find another medicine or combination that works better.

    I think this is just once again a case of allowing myself to be scared of side-effects which may or may not present themselves; it is also related to my first traumatic experience taking methotrexate.

    As people suggested, I can always return to Arava should the Planquenil prove not be as effective, or should it present some strong side-effects. I think I need to remind myself of this more, when the doubt begins to enter my mind.

    Thank again for all of your support, I really appreciate it!

  6. Rachael

    I completely understand where you are coming from. When my Rheumy started me on Arava I had a lot of worries about taking it. But decided to give it a try. Three months later I was in the ER and had to be taken off of it. I am now on Plaquenil and the only side effects I have noticed are my hair and I am a little more sensitive to the sun.
    It’s always a tough choice to make when we have to switch or start a new medication. I hope that you can find the one that works for you and that you feel comfortable with it!

  7. Mallen

    I always get nervous with a medication change. I am taking methotrexate, Arava and Plaquenil. I think right now, I am doing the best I have been doing in my almost five years of RA.

  8. chelsea

    I haven’t taken plaquenil, although have considered adding it on top of methotrexate. I don’t have side effects from methotrexate the way some do, although it’s very important to take lots of folic acid with methotrexate to ward off some of the side effects, preferably prescription strength, but skip it on the day you take mtx. I was always under the impression that plaquenil is a much milder drug and so assumed it wouldn’t do much for moderate to severe RA if you’re taking it by itself. It is often added to mtx and sulfasalazine though. Lana, do you have RA lung?

  9. Lois Kelley

    I have had a dx for 18 yrs, but like many I know its been longer. My family doctor immediately believed it was RA though it took 8 months for test to be positive. He put me on Plaquenil right away. I did that and tried I think every NSAID out there with Prednisone when needed. The one draw back of Plaquenil is you have to get your eyes checked every 6 months. Which may actually be a good thing, since RA can affect your eyes. I did Plaquenil for 10 years and refused to take methotrexate for the first 10 yrs because of fear. I have alot of permanent damage, too much to get into I often question if I took Methotrexate sooner if I would be better off? But then I tell myself at least I was on the plaqeunil and not just NSAIDS. Who knows? I’ve been on Methotrexate since April 2001 it helped some at first but I really do not feel it does too much. Every time I try a new drug, When I did Humira and now Rituxan I have asked to stop the Methotrexate. The Rheumy keeps saying it is the gold standard and that these other drugs work better in combination with it. I have not really had any bad issues with the methotrexate, only a few times were my liver enzymes up. I just feel like why take it if it does not help much? I would like to have a drink every once in a while, not get falling down drunk, just enjoy a drink with dinner and friends now and then. Maybe I will just do like you and take myself off it. I weaned myself off of antidpressants. When I was having bad flares and feeling bad I think they made me worse. I started having thoughts like I wonder how many of this pill and that pill would do me in? I belive the warnings that they can increase the risk of suicide, Because I do not have those thoughts now that I no longer take them! I wish you the best of luck with your decision and thank you for all of you inspiring blogs! XO

  10. Marianne Hoynes

    My understanding of Placquenil is that it can work as an immune booster for any one with autoimmune. It might work, after a few months, but it does not exactly treat RA, in the same way that Arava, MTX, the biologics or other drugs treat RA. My impression is that you can take it, and other RA meds at the same time. I was on placquenil for a few months in the beginning of my autoimmune road, and unfortunately I was allergic – it gave me rashes. The hope was that it would boost my poor immune system in general. Dont forget to go to the eye doc every 6 months – the side affect with vision is rare and can be reversed if seen in time.
    I, like you, have had bad episodes with MTX. I lost my hair, and generally felt worse. Actually, I felt as if I accidentally threw myself off the top of a 5 story building every day, and landed on concrete. Finally I went off of it. I do not want to influence your decisions, or suggest something that you are not comfortable with, but have you tried the biologic drugs? I know they are a big decision – side affects are many and major. My understanding is that men experience RA worse than women, and you seem to be suffering as of late. The biologics (for me) reverse damage that has been done, and can really improve the frequency and intensity of flares. The bony growths on my finger joints went away on Enbrel, as did a bad autoimmune skin rash (granuloma anulare) that lays across my joints and torso. I had a lot more energy – I loved it.
    When I am in pain, I am desperate for medicine, and will try anything the doc suggests. When I am not, I question how much poison I want to put into my system. What i have concluded after the last 5 years with two auto immune diseases and fibromyalgia is, that if medication shortens my life, but improves the quality of my life, I will take medication. That does not mean I will stop questioning what I want to put in my body. I pray for peace for you, as you make these decisions. I am with you in spirit – I think we are all together with you in spirit.

  11. Remicade Dream

    My impression has been that plaquenil is a milder drug that usually has fewer side effects than Arava. Of course, everyone is different, and any med change carries risks, so I do understand your worry. But I was started on plaquenil and later “stepped up” to Arava, which made me very sick (and made me lose my hair), and then switched to MTX, which also makes me sick. I continued to take the plaquenil while taking the others – still taking it. Not that this part is relevant to you, but it’s one of the few RA drugs that women can take while pregnant – Arava and MTX are out of the question. Plaquenil is also used as an antimalarial drug and is very common in countries where that is an issue.

    Personally, I never noticed any problems with the plaquenil, and I’ve had lots of side effects from the other meds. You already know about the need to see an eye doctor – but the eye issues are also very rare, and reversable if caught early. I hope that if you decide to go ahead with the change, it goes smoothly for you. I know it’s always a struggle to change meds – they all seem so scary sometimes!

  12. Jeanette

    Can you stay on the Arava and add the placquenil? I just started arava a couple of months ago and my doctor added it on top on my methotrexate (and remicade and prednisone to bridge the gap while the arava kicked in). It is so tough to make these decisions and I wish you all the luck!

  13. CRK

    I can understand your quandry. I had been on Humira a while and was still having flares. My doc switched me to Simponi. Humira clearly wasn’t working, but I didn’t want to switch. I knew Humira. I knew how I felt — better than MTX. I had the injection sequence down pat. So why did I want (like you) to stay on something that clearly wasn’t working? Because it was comfortable and safe and when you have RA, every day has a bit of fear in it — fear of pain, fear of drug side effects, fear of getting worse — so anything that makes you comfortable and safe is a good thing.

    But I switched because I trusted my doctor and it was the best decision I’ve made. Simponi is very similar to Humira but has been shown to help people like me that weren’t responding to Humira. I’ve had my second shot and it’s amazing.

    You might not want to switch to Plaquenel, but what you’re on clearly isn’t working like it should, so you need to try something different. Beside you’re a [my] super hero. New adventures await.

  14. Jules

    It is so funny, you and I have gone the exact opposite in our medication order. I started on Plaquenil, when that did no good, went to Sulfasalazine with no results, then to Arava- which I had an allergic reaction to, and finally to MTX. For me-I will fight tooth an nail if they ever want to take me off MTX- it has been my lifesaver. Each of my switches(except Arava) have been after over a year and with no results. Each time I have been cranky about it since nothing worked. My terror when they said I would be going to MTX AND I would be injecting it was almost tangible. After I finally got results- I realized it was all worth it.

    I hope the plaquenil works for you. You deserve longer pain free stretches my friend!

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  16. Lynn Rivers

    I was on Arava, Plaquenil (hyroxycholoquine) and Sulfazalazine in combination for over 1 year with practically no side effects. Unlike methotrexate… which made me violently ill. I don’t think you need to fear the Plaquenil. However I might question the choice to go off the Arava. Combination therapy is the best approach. I found the Arava alot more effective in combination than by itself. Ask your Rhuemy… why not both drugs?

  17. Christie

    It’s been a few days now… so how’s the Plaquenil going for you? I hope you’re doing well on it. They say it can take several weeks to notice any significant affects though. I was on it for less than a month but had to stop taking it due to some unusual side effects. I must say though that even in just the few weeks I was on it… and even in light of the adverse effects I experienced… I do believe it helped my RA symptoms. I hope it will help yours as well. You’re in my thoughts as you take on this new adventure!

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