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Kelly,
Had Rheumy check up yesterday. He started telling me how RA couldn’t effect the 1st joint in my fingers – I thought of you…I thought of arguing, but I knew it wouldn’t do any good. After all, he IS the doctor not me! So many times I feel like I’m a hypochondriac b/c of all the doctors I see! When I read the posts that you write when you are sharing your heart, I feel like you are speaking for me. I wanted to be that Enbrel commercial. I want to have my life back – just little things like opening zip lock bags or jars and walking normally. I don’t have a handicap sticker yet for my car but, often ponder getting one. I feel like I will be surrendering to this disease if I get one – isn’t that silly!
Krista!!
When the doctor said that to me, I felt like he did not even believe what he was saying. It was a ridiculous statement. There were 2 others with me in the room. I did not argue aloud either, but the awkward silences showed we were all uncomfortable. Was he saying I was lying when I said those were my worst finger joints?
That night, I spent hours online finding case studies in reputable journals which confirmed RA in the DIP joints. Several articles said that it is “more common than believed.” I wanted to wake everyone up and scream: LOOK!
This is just one example. There are several issues like this DIP one. I am still trying to figure out: WHY does a dr. say something that is so wrong & so easily disproven? With all the resources & education he has? He must have heard of this, but discounts it. & Why?
Just a funny coincidence I guess, but while you were mentioning “hypochondriac” just now, I was discussing this with someone on another post. -click here.
Finally: If I were to see that same doc today, I hope that I’d have the confidence to tell him that I know he’s wrong. Hopefully.
I have had RA for 3 yrs now. I finally have an RA doc who seems to care about me and my pain. I am on Methotrexate and Humira. At first it was such a relief from my horrendous pain. I’ve been using these since march/april. Im finding that im quite ready for my next Humira injection 3-4 days before its due. Guess i may need to use Humira once a week? These 2 meds dont seem to help my fingers or the top of my foot, sadly. I still have the burning feeling on my spine as i also have Ankylosing Spondylitis. Burning feeling on my right hip if i lay on it too long 🙁 im thankful there are sites like this. Love and hugs to my fellow RA er’s!
Talking about Medicine and the like – has anyone found sam-e supplement to be helpful with RA? I know people use it for regular Arthritis just wondering if it works for RA.
I think they claim to help OA, but most of these have been disproven. Even last month, I heard on the news that the claims about glucosamine were proven to be false for OA.
Minerals and supplements cannot do anything to help RA. Science just doesn’t support it. I’ve done a lot of reading about how RA works & what scientists are working on. This product is not related to any of that.
RA symptoms do fluctuate in most people so that makes it hard for us to tell. This post talks about why this makes it so hard.
I know it’s not the same product, but did you read this? There are some helpful ideas in this guest post by a doc here.
We have a lot in common with our RA. A crummy first rheumatlolgist, MTX and Enbrel, then switching from Enbrel to Orencia. I have now been on Orencia for 5 months and can tell a big difference from last year after the Enbrel quit working. I am probably feeling about as good as I ever will with RA (still screwed up when compared to normal people). It is frustrating when you hear of other people doing so well on drugs that you are taking, but one person’s version of “well” may be different than my version. I would love to be able to put some running shoes on and go for a run before heading to work, or hop on my Trek road bike and ride 25-50 mile rides again. But I’m like you, I know thats not going to happen, so I just don’t think about it anymore. I hear a lot of people talking about remission from RA, I am not convinced it exists. I hate the numbness, sometimes I am so numb that I forget to be happy, I’m just going through the motions of life. I really hate that RA takes such a vital part of our life away from us, that we have to emotionally shut ourselves off sometimes just to survive day to day. I hope the Orencia will start working for you you soon.
Hi,
I too would like to know about the adult facts of RA remission. We hear of complaints of RA but where are the blogs of the lucky ones in remission ?
Love
Inez
I love this: “adult facts”! I guess we have to put this together for ourselves.
The obvious answer is that when someone is feeling great, he/she does not spend time blogging about his illness. He plays tennis. :chic:
Kelly, read this if you haven’t already. Great analogy on living with an auto-immune disease. The girl that wrote it has Lupus but, you know where Lupus fall in w/RA so I will just stop there…:-)
Kelly, thank you for writing this blog and being so honest about how hideous RA is. I have had RA for 8 years going on 9 in March and my experiences have been very similar to yours. It’s nice to read about your experiences to know that others are not feeling like the ones you see in those commercials of happy RA people. I started on plaquenil and MTX and prednisone, went off prednisone after 40 lb weight gain…didn’t care at that point if it was helping me, switched to enbrel and mtx, increased my dosage of enbrel to 2 shots a week, after 4 years on enbrel, switched to humira and increased my dosage of mtx, and currently I have increased my humira to once a week with a high dose of mtx. I keep hoping to feel better, but like you I would say I only feel about 50% relief and some days, not that much. I was a Physical Education teacher when I was diagnosed and just this past December was approved for a disability retirement as I couldn’t keep up with the demands of such a physical job. I absolutely loved teaching PE and did it for 24 years…sometimes I think how unfair this disease is….can make you really angry at times, ya know? Luckily I’m on facebook and can keep in touch that way, but it’s just not the same! I am trying hard to stay positive, but can be hard at times. I got my handicapped placard 7 years ago and everyone should get one who has trouble walking…it’s a lifesaver! Everyone stay strong and find the best rheumy you can…I’m lucky in that regard, my doc is great! Thanks again for all of your information.
Thank you, Lori. I really appreciate that.
I’m sorry you were forced to stop such a cool career. I love teaching. I did a week as a PE teacher once when I was a substitute teacher during college.
I guess you are another example showing you don’t get RA from being physically inactive… It seems like so many RA people I meet are quite tough physically, but our reputation is so much opposite. One more odd question…
Thanks for the post Kelly. It’s what should be posted in response to that ABC article. Only a few seem to get close to what their former life used to be. Although I still work, it gets harder and harder and I’ve had no social life for some time. There isn’t the energy. What little I have gets used up just to get through work and to do the most basic home chores – laundry and dishes. House cleaning, personal grooming, etc – what are those? I think I used to do those. I may still work, but at a huge cost. I move at one slow speed and that dwindles by the end of the day and takes a while to revvv up to in the morning. Should we be happy with a 50% response? Sure. But not content.
I hope the Orencia helps, but sounds like you may need to do two biologicals (say Humira and Rituxan). Maybe have to throw in some plaquenil and/or sulfasalazine too. But that is a really scary thought, isn’t it? I’ll keep my toes crossed you don’t have to do that!
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My journey is so similar, so familiar. I was diagnosed 8 years ago this March (yikes….that’s scary). Went on pred and methotrexate (low dose, about 12 mg/week) immediately to get the raging diagnosis flare under control. Pred is such, such a demon in angel’s clothes. The joints felt GREAT. I, however, was a raving lunatic. Talk about ‘roid rage, I’d be laughing hysterically one second, and crying just as hysterically the next. Pred threw me immediately into all the symptoms of menopause, 5 years after my last period. *THAT* was fun. The facial hair, the weight gain, all of it came to stay. But my joints felt great.
Luckily, because I am very anti-pred, the RD started weaning me off of it after about 3 months. Not so luckily, the joints went bananas again. 1st finger joints, cervical spine, collar bones, ribs, all of them have been on fire at various times. As you said, I never knew I had so many joints until they started to hurt so badly.
Tried to up the MTX dose, and couldn’t tolerate it. I went onto Remicade within 6 months from the diagnosis. It never worked 100% for me, mainly because I could never get up to therapeutic levels with the MTX. The most I could tolerate was 12.5 mg/week, and even at that had mouth sores, hair loss, violent headaches, violent gastic problems, the whole book of potential side-effects were mine. Didn’t matter if it was oral or injectable, it truely was a poison to me.
Off MTX and onto Arava. Same deal….couldn’t tolerate it. Onto the baby DMARD, plaquenil. A little more than 4 years ago started with the next greatest hope, Orencia. It’s marginally better than the Remicade was, but now, after more than 4 years, I seem to becoming tolerant to it, and it’s not so good any longer. Next stop, once my insurance will recognize it, is tocilizumab, which was just approved by FDA last month.
And yes. I too look at the TV ads, and the testimonials and happy, smiley people who achieve remission, and while I’m happy for them, I am honestly p*ssed-off it isn’t me, and I can’t achieve that. My sed rate’s down, my CRP and rheumatoid factor are down, but my joints are out of control, and my fatigue is off the charts.
Yes, I too was happy when I got the happy little blue placard. I was not so happy when I had to go to part-time (3 days/week) work, but had to get over it, because I simply cannot handle more hours than that.
And I was absolutely floored when about 6 months ago, I asked my RD “realistically, how much longer do I have before I have to go out on permanent disability?” And his response was “I’ll sign the paperwork today if you want it.”
Yikes again. I’m only 54, and I used to be a Type-A power-player. Now, I’m a signature and a claim form away from SSDI.
Roberta, Thank you for painting such a clear picture of what is probably much more “typical” than either the commercials or the textbooks. I wish every rheumatologist could read this.
My hope is that even if there is not a cure during our lifetime, treatment is improved by both medicine & better understanding.
I’m glad it was a hopeful comment.
I do think it’s hard for people to understand a disease they cannot see. My husband is a very logical person who bases his approach to life on physical observations. If I walk more slowly than he does, well, I always did! (He’s 6’4″ and I am 5′ tall.) I’ve learned I need to be very specific when I tell him about things that are bothering me. It’s good practice for the times I see my doctor. I looked good on exam last fall, for instance, but I described ongoing night pain in a shoulder and knee that interfered with sleep. I went home with a different anti-inflammatory and new information that there are lots of them and some work better than others for different individuals, and the only way to find out is to try them. World.of.difference. Also confirmed that ongoing stomach upset was not due to Methotrexate but to Nabumetone. Who knew?
It’s hard for me to understand a rheumatologist who doesn’t listen. I don’t know how they can treat RA or other complex diseases without a receptive ear.
Song,
“It’s hard for me to understand a rheumatologist who doesn’t listen. I don’t know how they can treat RA or other complex diseases without a receptive ear.”
You can’t. That is the problem for so many.
Professional patients….that we are! I hope the increased Orencia helps. You describe so well the waiting. When I tried my first Enbrel, I sat there waiting “well…well”. Wasn’t the right drug for me either. Looks like Actemra is. Thank you for your blogs. They are so helpful.
Kelly, thank you so very much for sharing your RA journey with us. I continue to pray that you will find the medication that works for you and that your RA will go into remission never to be felt or heard from again!
Thank you, dear girl. I still hope!! :heart:
It’s frustrating that each trial of a new biologic takes so long. I keep trying to tell myself that fighting RA is like running a marathon, not a sprint. (which is kinda funny because I never was a runner; and would be really happy if I could just handle a walk outside in the beautiful sunshine!)LOL
Julie, like a marathon, but we are actually being chased so we are trying to outrun RA!! Haha. :silly:
Kelly, I saw this regarding fever. Wonder if it would be worth checking out?
J Clin Rheumatol. 2010 Mar;16(2):88-9.
Subacute thyroiditis presenting as Fever of unknown origin in a patient with rheumatoid arthritis under etanercept treatment.
Vassilopoulos D, Sialevris K, Malahtari S, Deutsch M, Manolakopoulos S, Archimandritis AJ.
From the Second Department of Medicine, Hippokration General Hospital, Athens University School of Medicine, Athens, Greece.
PMID: 20216130 [PubMed – in process]
Hi Kelly,
Thank You for sharing your story with us. My husband has RA and I’m constantly researching for him and myself. He recently just stopped taking Orencia, he had been on it for about 6-8months and didn’t get any relief. They say it could take up to 6 months but he was anxious for some kind of help he switched to a new one that’s out. (the name is escaping me, starts with an A-infusion) Anyways, he has been on Prednisone also, and I had been bothering him to get off of it. I’m in Nursing school and have learned all the problems it can cause. Plus he had gained 20 pounds or more. So finally after a long time on it, he has cut the Prednisone and his pain has increased dramatically obviously. I saw that you said your Grandpa had problems and was hoping you can let me know specifically what he thought was from the Prednisone. I would appreciate some insight. Feel free to email me if you don’t want to comment here. I pray that you and all the other people suffering from this horrible fight will get some relief. Be blessed! 🙂 Linda
I have been refusing methotrexate for 5 yrs, my pain and fatigue are increasing thought time to reconsider but with all the warnings of the severe side effects I still can’t convince myself to ingest the poison (in my opinion)
Would like to hear from others