This month, to the embarrassment of my children, I have decided to record a series of online educational video’s online. I have decided to start with rheumatoid arthritis.
Whereas I have an idea of the sorts of questions that people who live with Rheumatoid arthritis want answered (as I get asked them every day), I would really value the input from patients who have RA or those caring for them at home.
I have decided that the video’s are to be short (1-2 minutes in length) and to break topics down in to small bite size chunks eg. ‘What re the side effects of methotrexate’ rather than ‘Here’s eveything you need to know about Methotrexate’.
Please ask anything you’d like answered and I’ll do my best to put together some decent answers. I’ll be giving emphasis to the those questions which I think will benefit the group as a whole.
Thanks for your input and support.
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Hi, thanks for doing this :)
I’m on Infliximab infusions, every 8 weeks, and am doing really well. I’m thrilled with how much I have improved, literally overnight. My main worry is the long term effects of being on this drug though, have you any thoughts?
Also, prior to the infusions my hands were v painful and quite distorted, can I continue to do damage to the joints, even though they feel good at the moment?
Regards
Shirley
Good question. Many people are concerned about log term side effects on these drugs and I will be addressing that question and also how we ensure that patients don’t get damage despite treatment. Thanks Shirley – 2 good questions. It will take me a few weeks to do all of the video’s but I will post info here so you’re in the loop.
Is it common to have a little swelling the day after Methotrexate injections? My hands swell slightly the next day. I am also taking Hydroxacloqine (?) and Humira.
I will be doing a piece on Methotrexate side effects and on all of the drugs we commonly use in the treatment for RA. Thanks for your suggestion.
I have a question regarding how to best convey the level of pain one is experiencing to his or her rheumatologist. My doctor simply asks what my pain level is on a 1 to 10 basis, with 1 being little to no pain, and 10 being worst pain imaginable. Yet without any further guidance, I find this way of measuring to be completely useless. My 4 or 5 may be another patient’s 8 or 9, or vice versa. I have also heard from other RA patients that they are told by their rheumatologists that their pain cannot possibly be X or Y because there are no visible signs of swelling or inflammation. I have gotten the same vibe from my own rheumatologist. It seems that my pain is not always commensurate with the amount of warmth or swelling in the joints, and when I tell my rheumatologist my pain is on the high side when she can’t see any obvious signs of RA in my joints, she doesn’t say anything to me, but her look says it all — she thinks I am being histrionic. On the flip side, sometimes my finger joints are terribly swollen, yet don’t hurt much at all. So it seems as though this method of measuring pain via a “pain scale” is far too subjective and therefore unhelpful. And yet observations of swelling and inflammation don’t appear to be good objective measures of pain, either. How can rheumatologists and patients get on the same page when it comes to pain measurement (and, by extension, pain management)?
Good point. This is one of the difficulties of trying to measure something as subjective as pain objectively. I agree that outcome measures don’t capture all of the nuances patient experience of their disease but these are the tools that best predict joint damage. Although there is wide variation between patients on a VAS scale it can be helpful in the same patient over time. Most rheumatologists understand that RA pts can have pain without swelling, swelling without pain though and sometimes you need to adapt your assessment accordingly. Many patients express your frustration with these tools.I might do a Q&A on how we assess disease and why we do it that way. Can you think of a better reproducible measurable way of assessing pain? I’d love to hear your perspective. Its a tricky one though….
Not completely sure, because I agree that it is very tricky to measure pain. But one thing I was thinking might help with regard to the pain scale was if the patient and the doctor collectively assigned a pain “value” to each number on the pain scale. In other words, a description of the type of pain they would associate as being a 1, 2, 3, 4, etc. This would help to individualize the pain scale for each patient. I think in that way, the doctor would have a better understanding as to what that particular patient means when they say their pain is an X or Y.
For example, my idea of worst pain imaginable is what I saw my mother go through when she was dying of cancer and no amount of medication seemed to put a dent in her pain. She had an untreatable tumor in her chest that constricted her lungs and heart as it grew. So to me, my RA pain is often very bad at times, but in my opinion it could never reach an 8, 9, or 10 (at least, I hope that I will never experience that level of pain). But that doesn’t mean I’m not hurting pretty badly if I say my pain is “only” a 5 or 6. At a 5 or 6, I’m hurting, all right. It just means that I am being honest with myself and admitting that the pain could also be much, much worse.
A friend of mine suggested that when I’m at a 5 or 6, I tell my rheumatologist that I’m actually at a 7 or 8 since the rheumatologist doesn’t seem to “get” that I am in a lot of pain. I understand my friend’s point, but I feel like then I’m exaggerating my pain level, and I am not comfortable doing that.
The only REAL answer we should need to convey to our MD when asked about our pain level is how it is affecting us-mood,ADL’s,activity level at work or play and if we can tolerate it or not. The 1-10 scale sucks. The smiling to crying face scale sucks,too. I’ve even told MD’s I can tolerate maybe 1-2 more years. But,most just ignore me so there may be no good answers. One actually said I need to find something other than opiates for chronic pain,at my age. As if I hadn’t exhausted every option.Heh, that was WHY I was consulting him but he offered nothing,at all. So,I told him it was going to be a bullet,though hopefully not for years. He closed up my chart&left the room without a glance. Nice. Thanks that you are out there really trying to help.
Hi Ronan,
I have AS not RA but i’m also very interested in the research regarding the side affects of anti tnf.
Thanks for helping us. I have only mild symptoms but night muscle stiffness a real problem & not alleviated by exercise. Could be more fibromyalgia related I guess than just RA. Also v interested in risks of Methotrexate & plaquenil. Thank you!
Great work! Great approach! Both for your patients, and your presence!
Kudos
Howard
I’d like to know more about “nearing remission” and having RA that is “under control”, please. Google talks about DAS scores and minimal disease activity. What exactly does it mean?
How consistent does the “lack of symptoms” have to be in order to meet the criteria?
Does it count if a patient is “drugged” up on DMARD’s and biologics?
How do I apply the definitions to an immune system seems to “test” me all the time? Some days I’ll feel fine with few symptoms. Then, all of a sudden I feel achy and sore all over for a day or two or even only for a couple of hours. Swelling and stiffness is very minimal. It seems to attack, retreat and move around joints for no apparent reason. I have had no major “flares” yet in the year that I’ve been ill.
However, I also cannot go without 200mg celebrex for more than one day (along with 20mg Methotrexate once a week and 5mg Folic Acid daily), then my knees, ankles, feet, hands and wrists feel quite achy and sore.
My rheumatologist says that my disease is under control and that he believes I am nearing remission. I am concerned that he does not take above into account when he examines me(obviously, I never have any symptoms when I visit him!).
Thanks for all of these. There teerms (remission / under control) confuse everyone and I will do something on this. I’ll do my best to answer all of the questions you pose in some shape or form in the video’s. Thanks for your input Diane.
I was wondering how much of an emergency a ruptured tendon in a figure would be? On a scale where 10 is OMG go to emergency and 1 is take your time it’s no big rush. Especially in view of the fact that hand surgeons are not easy to get to.
I will try to think of a more global question next time
Thanks
Annette
Thanks Annette. Thats a good question and I’ll add it to the list
I’m definitely interested in the risks/side effects of plaquenil. Also, when you finish the RA series, I’d love to see one on CREST Syndrome and Mixed Connective Tissue Disease. Love your blog. Thanks so much!
I’m doing one on plaquenil side effects. Very commonly used so very commony asked. Thanks