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The line “oh it’s arthritis” makes me want to scream, but at the same time I remember what I thought (before my RA) about my Aunt who has had RA for 30+ years. I knew she had it, but I thought that just meant that her hands ached a bit now and then and her knuckles got a bit knobby. I never realized how serious this disease is until I got it. I think this is the root of a lot of RAers difficulties with insurance, depression, and on and on that could be helped by awareness.
I think a name change is a biggie. Get the word ‘arthritis’ out of the name of this disease then get some awareness through the media. We can’t be shy on this!
Just the other day my neighbor was talking about his wife’s cousin’s RA. This is what he said: “we were at the car show and she was having one of those….bouts?” I said “flares?”, “yeah that’s it”, he said, “well she just sat in a chair and wouldn’t move…we kind of think she is a little bit of a hypochondriac”.
This person is a very kind man. I explained to him that his wife’s cousin is NOT a hypochondriac. I told him that I had never known until I experienced it myself that there was pain like the pain of RA. I told him that I always thought a person would just pass out if the pain got that bad. I explained how people that don’t have RA don’t get our pain because we don’t have a leg mangled and bleeding or an arm ripped half off to show our pain but that’s what it can feel like.
I think it is important for us all to speak up when it hurts. Make others aware. Remember, the squeaky wheel gets the grease.
Hi Lisa. I’m so glad for that wife you were there. Do you know whether it has made a difference yet? Some men are just like that – and women – but others can learn. I hope for her sake he does. Imagine how much harder that makes her life.
Hi Kelly,
Just read your reply as I’ve been away. Small correction though, it is our neighbor’s wife’s cousin (not his wife). So actually the poor woman had not only her cousin, but her cousin’s spouse thinking she was a hypochondriac. As I said in my first post, he (our neighbor) is a very kind man. He and his wife simply didn’t REALIZE that RA pain is so horrible and so invisible. This is a perfect case of people not having awareness. These are good people, they just didn’t know….THEY JUST DIDN’T KNOW.
I think the general population would be in shock if they knew what this disease was really like. I will be commenting on your latest topic very soon.
Love your site Kelly, it’s the beginning of real awareness for a lot of people!
We have a long way to go, but I am hopeful with great friends like you here!
“o you ever feel really alone about the RA, but you don’t want to tell everyone how bad it is? I feel like no one will understand anyway.”
This. So much. And so alone and sad that I sit and cry wondering if I will ever feel really good again, if I’ll ever be able to do the things I love, will I become a terrible burden to my family, and if there are really more years behind than ahead at this point.
Mary, I had a few of those tears this week. I just want the pain to stop & live my life & it does feel lonely that no one can see it. I try to remember I’m not alone because of each of us going through it also.
Mary K, keep reading the blogs. You are not alone. We can all understand what you are experiencing. God Bless you.
Kelly,
Sorry to hear about all your struggles! I understand them completely. I too have problems with getting things approved in a timely manor. My employer is a self-insured company with BC/BS as the underwriter. My Dr wants me to do hydro therapy. BC/BS says no can do. And this comes from someone internally at BC/BS. Not even someone with a medical background. They said I could join the Y and swim. I didn’t need therapy in a heated pool! How do you deal with that?
Don’t you think if they knew what RA is the same way that they know what diabetes is that it could make a difference? I wonder whether we could train medical personnel who do tests or make decisions about the basics of RA or have an information brief that is circulated regarding RA. Think of the time they refused methotrexate and told me to find “an alternative” – would that ever happen with insulin? There is no “substitute” drug.
Went to the hospital yesterday to get my monthly bloodwork before my Actemra infusion and noticed that there was a large table with people and a huge sign “National Auto-Immune Disease Week”. So after my bloodwork I stop over to ask a few questions. The representative told me that they were showing the staff what it is like to have a disability and be in a wheelchair. So I said, but the sign says “National Auto-Immune Disease Week”, that does not mean that a person with a disabililty has to be in a wheelchair, a person could appear to look ok–but that doesn’t mean that the person is not suffering from a debilitating disease. She just looked at me and said “well we are just focusing on what it’s like to have to be in a wheelchair”. So I told her she should change the sign then cause she is giving the general population the wrong impression of having an auto immune disease. Thank you. I felt quite happy when I left there!!!!! In fact it felt damn good!!!!
Good for you, Sheila. That whole thing sounds ridiculous. The worse thing is it didn’t sound like she was open to learning either.
Kel, I’m sorry to hear about the pain! I know about the bumping thing, only I don’t always have that. The insurance situation sounds like a nightmare! Fishy to say the least. Is it an individually purchased policy?
me? I don’t say anything. It’s always the same – always getting a little worse. There will be a big noise if that ever changes. 😀
Insurance companies need guidance about RA. I heard from a patient today that had the same problem I went thru last spring – her ins. company (different on from mine) wants her to find an alternative to methotrexate. I went through that for 2 months, paying cash for mine, until they had it sufficiently docurmented that there was not an alternative. What if that were in the RA Brief? I know I’m thinking out the box, but I believe we can change this some day.
Here’s an interesting abstract I came across about Vitamin D and autoimmunity. I don’t know how reputable the Autoimmunity Research Foundation of Thousand Oaks, California is though.
http://www.ncbi.nlm.nih.gov/pubmed/19758226
My dearest Kelly,
You make my heart sing. I hope you know how much it means to have someone who knows exactly what we’re going through. After a year and a half since diagnosis, I now refer to my condition as “an autoimmune disease” to others when they ask. And I mention the Methotrexate as a “chemotherapy drug”. RA is not arthritis. It is a whole ‘nother ball game. I am a fellow Little Red Hen, and to admit to others (even many family members) where and how much I hurt sounds a bit ridiculous, even to me sometimes. How could it even be possible to hurt in so many joints? It’s no wonder that others who have not experienced it don’t ever really get it.
You are my heroine.
Thank you Noelle. I feel understood reading your comments. That helps me too. I know I can do so more w/ you all holding me up this way.
None of us have to be the Little Red Hen with RA. Maybe we can be the Little Engine that Could all together and make this different for the next generation.
I’m with you Noelle. Since reading so much of what Wonderful Kelly has put on the site and many reader responses, I have changed some of my lingo” Rituxan is ‘chemotherapy’. RA is ‘systemic disease’. I think it helps.
Hi Kelly,
I had an experience with a cardiologist this morning that was encouraging. When he interviewed me I told him I was an ePatient. He didn’t know what that was, so I informed him. I explained that with having RA, running a very high CRP, history of arrhythmias, and family history of coronary artery disease I wanted a complete check up. He said he’d like to do a treadmill……”UNLESS THAT WOULD MAKE YOUR RA FLARE UP AND MAKE YOU SUFFER THE NEXT DAY…..I WOULDN’T WANT TO DO THAT”! I almost faux-fainted, but knew I’d hurt later so I bypassed the drama (darn…love drama..). As I scheduled the treadmill test the receptionist said, “I’ve noted on your test order that you have RA, but be sure to remind the technician so we don’t hurt you”. Someone who works in their office has RA, I just know it. Where did their awareness and empathy come from? The heart doc was quite familiar with Rituxan and methotrexate, also. Warriors, there is hope.
WOWee! Thank you Phyllis! You made my day. Now, take good care of your heart. :heart:
You know, I’m sure Phyllis is right and the people in that office know someone up close and personal with RA. Which says something to me. It means we cannot allow ourselves to “fake it” or suffer in silence. People need to know what RA means, and they will only learn if people who have it are loud about their symptoms. I’m not saying that we should constantly be Debbie Downers, but that when people ask us how we are, we should be honest. And we should be open to being vulnerable about our pain. Of course there will be people who roll their eyes and think we’re exaggerating, but there will also be people who are teachable and open to us. And that’s where RA awareness is going to come from, I think.
Excellent points, Erin. I agree, but also it will be a combination of things because we cannot put the burden completely on the patients. One of the 1st blogs I ever wrote was Transparency & the Wall – I was saying we can’t all climb the wall in addition to managing our disability.
And I just thought of something else, Erin. I’ll leave a link here for you to look at and you can get back to me on it. Once I wrote another post about some of the reasons that we don’t always “share” our suffering (I know I don’t) although I DO agree with your points. Someone were upset at me for that post – we are all different in what we are able to do. I know that breast cancer has not gotten to this success by patients’ transparency alone. I just want to take the burden off those who aren’t able – but as we begin to get stronger as a movement, they might feel more able to share. Link to a comment thread – click here. I’d like to hear opinions on that whole post & the comments.
Well I’ll be, never even wondered if that was a different joint other than my ankle! Thanks for finding this information.
Doctors and pain management specialists, really do need to listen carefully and fully to their new patients on the first visit. If this fails to happen we can feel like we’ve never been heard, and therefore never understood. We want our doctors to have a good grasp at our reality, otherwise how can they treat us effectively. Kelly,you should print out your post today and bring it to your pain specialist.
On my foot, the ones on the side are about 3 inches from the ankle. But the ones on top are closer – only an inch from the ankle. I paid not attention to whether there were joints there – or lots of other places – until this RA um, nightmare. Not a fun way to learn anatomy. :O
Interesting idea, Ronda – I’ll have to read over what I wrote & think whether he’d get it – most of my docs do not read my blog – except the Good GP.
Do all your doctors know you have a blog?
The joints that are affected on my foot are about an inch away from the ankle on top of the foot. Just found it fascinating there were joints there. The biggest point in my comment probably was not very clear. Lets put it this way, if I were a doctor, on the patients very first visit, I would listen carefully to how their disease affects their daily life and how their pain levels are. I would record it to refer back to when I see them again. If they felt listened to on the very first visit, I feel it would greatly improve treatment, subsequent visits, trust and confidence in me as the doc. Besides knowing how I need to treat their pain physically, I think it would actually improve the patients pain level on a psychological level just to know the doc listened and understood. I know this sounds so basic and obvious, yet it is missing so often. I have walked out of a doctors office, having had my first appt with him/her, feeling like this didn’t happen. It makes you feel helpless. I think my car gets better treatment than I do sometimes. My mechanic listens carefully and address all my car’s problems and finds a solution. We demand that and we get it, otherwise they’d be out of business. Why is this not so with health care?
Kelly I so enjoy reading your blog. You hit so close to home on many topics. I grow weary of trying to educate the public only to have them say “oh, is that all you have, a little arthritis/” It seems once they hear the magic word “arthritis” their ears and minds close to any other information. They do not hear the whole body affected, the possible organ damage, the chance of going blind or dieing early. I guess if they pretend not to hear it than it is not too scary for them in their little bubble worlds.
Kelly what do you think it would take for the US to have an organization similar to the one in the UK? (NRAS) Do you have any thoughts on what is in the way ?
Has anyone ever had good interaction with an insurance company? Why do they have to hire the most obtuse people in the world to handle claims? Argh!
How can we ever hope to change the public’s mind? I have such a hard time convincing my own wife of my tribulations with this disease. Be it my need for rest or the fact that I just can’t do the things I used to all the time. Sometimes I get indifference. Sometimes I get resentment. Rarely do I get understanding and caring.
Today I’m having a tough time with my fingers. All my knuckles are inflammed. I was showing her my hands because one of my fingers is beginning to twist. She commented that my fingers look so pale between the knuckles and that my fingers were shaking. I said no, my knuckles are inflamed, stiff and painful. They’re shaking because I’m straining to straighten them because of the pain and stiffness. This might’ve been one of the first times I pointed this out to her. I don’t think it sunk in though. She always seems to point out her minor discomforts and I just chuckle to myself. If I told you all of what my discomfort was I’d probably never shut up.
I’d really like to hear from some fellow RAers how their spouses react to them. If they have a very understanding spouse, how were they able to achieve this? Stories like these would really help me out. I read the couple posts you’ve had about spouses, but more would be appreciated.
Are those rhetorical? I do have some awareness ideas to discuss more soon. But, that is for our society at large. You sound frustrated with your wife. I do hear this a lot – but mostly from women of course. Their doctors and husbands are mostly men & discount the suffering of the ladies, calling them hysterical females or hypochondriacs. There are some posts on those words. On this site, I’ve been careful to include men in the stories. It actually improves our case to have a few guys around – makes it harder to just attribute our “invisible disease” to our cycle.
Did you see the comment above by lglavish about the husband who described his wife? I have heard this countless times. Women ask about how to get through to guys. I’m not sure. It seems to me if there is a high level of trust and communication, then it would extend to RA as well. I’ve heard of some wonderful spouses too. What I assume about them is that they were already wonderful and their response to RA just grew from that. My best friend has always listened and believed me about other things, so while there was a learning curve with RA, she is a rock & advocate for me. But, others who are more wrapped up in themselves or psychologically unable to express much empathy, have continued that w/ my RA and I don’t waste time trying to convince them. It is sad because some of them are very close.
There is something else I call RA atheism. This is an extreme denial. Most spouses don’t go that far, but for whatever reason, some cannot accept that we are really as sick as we are or that it really hurts “that much.” They actually insist we don’t.
Yes, I’ll work on getting some more material about how to deal with spouses. One thing I recommend is to use the “email this post” tool under the posts & send some now and then w/ an FYI.
I saw this episode of House where in order to prove a point he injected himself with something that gave him migraine-like pain. Don’t you wish we had something like that for RA? Just to give to people who don’t believe us, just for a few hours, so they maybe would start to get it? Like those sympathy bellies they make for men to wear when their wives are pregnant. LOL
I’ve heard of lots of suggestions about this, Erin. Like duct tape for stiffness & heavy clothes to induce a fever feeling. I did write a post for non-RA’ers breaking down our symptoms so they could be easily translated. For example, every one has had a sprained ankle or tennis elbow or the flu or a broken arm or a fever or a backache— just imagine those, only all at once and that helps imagine RA.
I think it can be imagined. Problem is whether it can be believed. I would have had a hard time w/ it.
Yeah, me too. And I think a lot of people just don’t WANT to believe it. No one wants to think someone else is in that much pain. I sure don’t, especially when it’s ME we’re imagining. 🙂
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Yes, yes, a thousand times yes!
We need RAD awareness desperately! I was watching tv today (too tired to even move, and pain everywhere)——————and I was thinking about this very same issue.
I saw ad after ad after ad promoting breast cancer awareness, and was blinded by all the pink. Avon, yogurt, Susan Komen foundation—-all noble and good, but WE NEED TO BE HEARD.
Maybe if we lost all of our hair, and not just most of it——-people would notice?
How about purple polka dot ribbon to represent all the joints (dots) that are affected by our autoimmune disease.
I too have started telling folks that I am on chemotherapy for my autoimmune disorder. I’ve noticed a very different reaction, and have had many ?’s asked in the past month.
I ALWAYS refer them to this site Kelly, and tell them that this is where they will LEARN about this disease.
Thank you and God Bless you courageous Kelly. You are admired, respected, loved, and a light in the darkness for so many! DITTO to all the KUDOS for you from my fellow RADers.
Maybe we could print up a batch of calling/business type cards with your website address and give them to people that ask what is wrong and leave some with our physicians.
That way they can’t say, I couldn’t remember where to look. HA! You know what they say about curiosity?
OK team, all you wonderful creative minds out there———-I know you have brilliant ideas. Please share : )
Very gentle hugs to my RA sisters and brothers.
I’m working on something, Connie. You are right, we have so many good creative people here we will come up with some great ideas.
It won’t let me reply to your reply to my reply above Kelly (LOL), so I’m just adding a new comment. I’m with you that we can’t expect patients to bear all the burden. And I know it’s uncomfortable to talk about it. Trust me. I caught myself at church today telling someone I was “just fine, thanks!” Sigh. I’m a huge hypocrite.
I guess what I’m saying is that the people in that heart doctor’s office knew someone who has been affected by this disease, so those people would be the prime candidates to help out with raising awareness. The people who see us struggle, see us hurt, and realize we’re not just hypochondriacs or wimps– our families and our friends and even our doctors (the good ones).
I think the reason diabetes has had such a great response to their awareness campaigns is b/c it’s KIDS fighting it and it’s their parents saying “this isn’t okay!” I worked with a girl with diabetes and participate in the JDRF walk every year, because it’s something I saw daily when I worked with her– what it was like for her, how scary, how sad that she had to poke herself so often. I saw and I wanted to do something to help. So I do.
I fear that if we allow ourselves to be marginalized, if we don’t let people know what it’s like– especially those close to us– people will never see the need for something to be done. And if they don’t know the need, they can’t act. And again, I’m a huge hypocrite for saying these things. I don’t want to talk about it; I don’t want someone to offer me the latest herb they heard about that will make me all better; I don’t want people to think I’m complaining because I have a bad knee or something. But if I want to see things change, I have to do what I can– we all do.
You’re doing a wonderful thing to raise awareness and bring change, Kelly, with this blog. So much of this I had never even thought about before. This is a good place. Keep fighting.
Erin, it’s hard for me too. I’d never call you a hypocrite. (We are the “victims” here & never blame the victim.)
You have some great points here. Reading your words “I fear that if we allow ourselves to be marginalized …. But if I want to see things change, I have to do what I can– we all do. “ inspires me.
I wonder if we can all stand on the same day on our blogs and Facebook pages and say, “HEAR ME.” What do you think? Could we get every single person we know w/ RA to do it? We would have to organize some kind of result we’d be asking of the readers so it would have an effect.
I have seronegative RA, and probably Lupus, but my doctor will only commit to saying that I’m on “Lupus watch” whatever that means. My insurance code says “Polyarthalgia”, which basically means joint pain in more than 5 joints. A good friend of mine, who is a nurse and gets it, finally just suggested that I tell everyone that I have “autoimmune dysfunction”. No one really knows what that means, so they actually let me explain what it means to me.
May, sometimes different doctors use different terms. If you feel unsure you have a clear answer, you could get another opinion.
May, perhaps it’s “Rhupus”. Let’s not forget there are some who fall under “mixed connective tissue disease” (MCTD) and Undifferentied Connective Tissue Disease (UCTD) which may or may not finally morph into one of the more defined categories, RA, Lupus, PM or DM, but not always. In which case, “autoimmune dysfunction” IS probably a good term to use! 🙂
Chelsea, are you clairvoyant? I went to the doctor’s today, and explained while I am managing most of my symptoms pretty well, it is hard to ask for help when you don’t even know what to say when people ask why. I also said that I would really like to attend a support group, but found that while I have some overlap with other RA patients, I identified more with the Lupies, but don’t really fit in there either… He said, “Well, if I had to classify you at this stage, I would feel comfortable saying you have Mixed Connective Tissue Disease.”
So I am medical mutt!
May, nope I don’t have ESP! But I am a little aware of some of the even more rare autoimmune diseases. I haven’t searched for blogs on MCTD, but I know of a few patients with it from a lung-problem related site. Don’t let that scare you, however I do hope your doc is checking for some of the more rare autoantibodies and has or will screen you for potential lung related problems. Though the lung problems related to autoimmune diseases are typically treated with the same type of drugs as the autoimmune disease itself b/c the general thinking is that getting the autoimmunce disease under control should help with the lung problems if you have one. The site is http://www.huff-n-puff.net/newforum/index.php.
You can do a post over there and ask the MCTD’ers to pipe up and then either email or private message them and I’m sure they’ll be glad to share their experiences and treatments with you. It can be othewise hard to find patients with similar diseases.
I got diagnosed with MCTD when I was 8 because I didnt fit in anywhere else!
I just wanted to clarify the recommendations for lipid testing during Actemra treatment. The protocol is to do a test at 4 to 8 weeks after starting therapy and then every 6 months thereafter. I am both a pharmacist and an Actemra patient so I think my sources on this should be accurate.
I know it gets frustrating dealing with our insurance companies. I feel that way some days too, but then I am so thankful to have insurance or Actemra would not even be an option.
Joy, all I can do is report what my doc told me. Their practice participated in the trials. They were required to test lipids monthly during trials. I’ve also had someone else confirm that to me. I have been on Actemra over 3 months now and I have not been tested once “offically” because doc says insurance will not pay. Doc says once every 4 months is the only option. So, I’m doing mine “under the table” on a cash basis. There was a “pre-Actemra” lipid screening which was required 2 weeks before the 1st infusion.
I think the reason you may have heard differently may be that there are such differences in opinion & practice. This is one of the biggest things I’ve been surprised to learn having contact with thousands of patients – that their docs do not do things the same or believe the same. It was a great shock to me how much variance there is. Examples: folic acid use, what kind of needle for mtx, & many others.
Kelly
I got a new record book for next year from medical representative. Do you have this kind of book? It
is free and can get anyone who is taking treatment of
ACTEMRA in Japan. I post it on my blog.
http://thitomi.wordpress.com/2010/12/15/record-book-of-physical-condition/
LOVE Hitomi
I totally hear you…I am having pain in that same joint in my foot. Just recently dx. So much to learn. Bless you
Kelly,
I sincerely hope that awareness makes a difference. Since telling my employer of my limits last month, I’ve had a lot of discussions with our folks in HR. Thankfully, your very well written articles and page content on this website have helped me try to get the point across of how this illness has effected me. I still don’t know what the outcome of this will be for me. It’s a new year, so my vacation rolled over as well as 2 new weeks of sick leave. Last year I came very close to running out. Last winter I was not taking Actemra and the wet cold we have in the south was not my friend.
Actemra’s side effects such as anemia, add to the disease fatigue. While at home during the Holidays, I have slept until 10-11 every day. Gone to bed most nights by 8:30pm. Could even have used a nap during the day sometimes. The closer it gets to my next infusion date, the more I can tell that my disease is stronger than Actemera. But, the fact is, I have received more “help” from this medication. I do now actually have good days. Mostly they occur during the 2nd week after my treatment. It goes down hill from there.
The more I read of other’s experiences with this disease and new things that occur for me, the more I realize how little the medical community knows about this disease. If our medical community is that uninformed, how do we expect the average citizen to know any different?
I wish that med students would have to include rheumatology on their rotations with the same emphasis as cardiology, orthopedics and pediatrics have.
And of course the FDA should come down on the drug manufacturers for their advertising. The perception that Phil Meckel’s commercial that Enbrel has is that when I take Enbrel I will be able to get back to my “normal” physical activities. Haven’t they recently pushed the vitamin supplements, diet aids etc. to put some sort of warning that these claims have not been demonstarted by the manufacturerto the FDA? What about the fact that most clinical trials have only 20% of patients helped by these different meds. The fact that they keep developing new meds, that can only be used after so many failures of other meds, says that these don’t work for every body doesn’t it?
Thanks for the opportunity to vent and please keep writing as you are able to so that we all can use the material to fight our own battles!
Thanks Kelly!
Amy
Dear Amy!
We definitely agree that awareness among the medical profession is key to improving our lives! We have to address the public and doctors and employers and insurance…
It’s good to hear that Actemra is helping you a little bit. Not enough my friend, but at least a little relief.
Oh, I just want to shout, “Me to, Me two!” about wanting to scream when someone says <oh, you just have arthritis! How unfair, as if having the stupid disease was fair to any of us! I loved the Auto-immune, chemo answer! I am using it from now on. I too, am seronegative, and thank goodness, my Doc. just put RA on my charts! He said insurance companies just don't get it, and it just makes things easier for everyone. Bless his heart for that kind act!
And the feet! Oh my, the feet! Everyone looks at the hands. Sorry, it's the FEET! there are bones in the feet I didn't know God made!
Thanks all for all the good stuff that's been written! It's good to know we aren't out there by ourselves!
from my hurting feet to yours: Yes there are. Who knew?
Ugh…hate how the lady glossed over your situation as just “arthritis.” I agree with a particular point you made – “Do you ever feel really alone about the RA, but you don’t want to tell everyone how bad it is? I feel like no one will understand anyway.”
I’ve had RA since childhood and am now in my 20s. My bones and joints are very damaged and I am going to be starting Actemra soon…I hope it will give me some relief. My bones have gotten very damaged due to long use of prednisolone. This disease teaches us so many lessons and I find myself constantly learning about life and myself through this disease. When I was younger I would downplay my pain just so I could fit in with all the other kids. Now that I’m older and better able to understand my disease, I’m able to communicate my situation better. But it is difficult to make persons understand and I usually get tired trying… I’m finding it especially hard communicating with persons my own age, who believe this disease is only for older persons.
It’s always great to read posts like these, as well as the comments and realize I am not alone.
Are you still on Actemra? Hope it has alleviated your pain.
All the best everyone x