I may have to face the fact that my infusions are wearing out and I need to get ahead of the pain rather than treat it as it happens. I can hardly walk at the moment due to weirdness. I think it’s a mix of nerve pinching and muscle wasting after that nasty nasty bug.


I’m wearing heavy boots, it’s true but that’s also to try and build up strength again. I tried going for a walk and got to the end of the street and wanted to go back home :/ And today it was just the length of the drive! I’ve been standing and doing things but actually walking- my legs feels half numb like I’ve been sitting on my knees for a while!


But my wrists are also really acting up (note- hand surgeon appointment next month) and I’m sore all over like with the flu. So that’s usually the start of a big flare. But I don’t want to take steroids. I may try upping my Leflunomide again. Right yes. It’ll take longer but will last longer.


 

I have tenosynovitis right across both hands, a result of Rheumatoid Disease. My ulnar has shifted to sit on top of my carpal bones as well. This is obviously fairly catastrophic over time but with splinting and therapy I should be able to get more use before limiting surgery. I need to take care of my fingers too as the smaller bones in my hands and fingers are eroding and recycled to be used in the disease process.


I use a regular keyboard and type sideways. I have tried other keyboards but the learning curve is very steep. In this way I balance speed of typing, lightness of pressure and can prevent my very fragile little and ring fingers from hitting keys they shouldn’t!



Here my ideal key press approach is on the left, on the right shows a key press that I need to avoid. But this is quite often what is needed in my ring finger of my left hand if I use WASD to move. I rotate the keyboard further when I am able to totally separate keyboard use from my mousing hand.


An ideal setup would be to have an angled desk and keyboard set in. So I am looking into keyboards with some slope and rest areas. But typing sideways means I am using my shoulders to move my hands over the keys as much as the distal parts of my hands.


I use a very light weight traditional mouse (usb) as I can rest my entire fingers over the clicking area and avoid direct pressure on the tips of my fingers.



This is how I try to use the mouse, so I depress the full finger. It can be a bit slow. But the mouse is more responsive than my keyboard.



Here you can see how my palm is fairly well supported.


My hope with my Xbox controller is to be able to get my hands off the desktop entirely and be able to avoid the rotation of my hands and wrists that happen with a mouse and keyboard.


But I am also going to invest in a vertical mouse have now tried one. I’m concerned about the weight and surface requirements for it to work.


 


These help, a lot. But they aren’t total solutions as there are no total solutions to my disease. It changes the bones and tendons in my hand but also those muscles and tendons that control the hand to originate in the forearm.


 


So I have to be selective in non vital activities. I also rely a heck of a lot on spellcheck to do posts like these due to difficulty depressing some keys.


 

 


The media hypes up medical advances as much as anything, in fact often even more. And those of us with chronic illness are often caught between the hype and people who care about us as well as people wanting to be the first to share. It is exhausting. Because I am indeed always searching for information about therapies and I often have to divert focus from that to try to not just say that the media has hyped something beyond any real help but to also prove it. And to do that I often have to source the original papers and read very dry very long papers and hunt down reviews. None of which is all that easy to appreciate outside the field.


 


So what can you do as someone who cares? Take five minutes to do a bit of research. It’s a sign of respect to us that you will put that little bit of extra thought rather than just throwing a link at us. That’s it. Give us the same level of respect you might do when hearing the latest news about a film franchise.


PubMed is a really easy to search tool that lets you find at the very least the abstracts of a vast number of papers, it is compiled by the United States National Library of Medicine. It may not tell you about the quality of the research but it is by far a better source of information than the media. 


If you are feeling bold you can even look through the journals these papers are published to. Annals of the Rheumatic Diseases is a great source. I also am subscribed to several Nature alerts including immunology, Medicine, and genes and immunology. So I am very well covered for getting the latest news!


 


 


Regardless of the therapies we are on, please do trust that we are being proactive, that we are trying everything we have access to.


We are also the ones who have lived with our disease and our therapies, so we probably are more informed about a treatment than someone who doesn’t in fact need it.


I am proactive. But I can only be proactive so far. All the medication I have been on has had a tremendous delay between trials, approval, and my access.


 


 


Therapies pass through many levels of testing before being offered to patients. Even clinical testing trials are often limited to specific gender or a combination of age and gender. Many of us simply cannot participate in trials, and sometimes that comes down to disease that is too active to halt current therapy to trial.


 


Rituximab was trialed in the mid to late 1990s. It’s an antibody that targets a specific type of B cell that is very active in several cancers as well as several autoimmune diseases. This makes it both effective and relatively safe compared to most other treatments. It doesn’t obliterate the immune system, nor does it slow down fast replicating cells (methotrexate is used for autoimune disease as well as cancer treatments as in both cases cancer cells and immune cells include very fast self replicating cells!)


It was trialed in 2004 on Rheumatoid patients, and recommended in the USA in 2006.


My first access was in 2014.


My third yearly dose is in two weeks. Four months from this I will get my final evaluation to decide if I’m allowed this treatment again and at a therapeutic rate. This is because I have refractive disease and it pretty mush resists all treatment. But this therapy works for me, in a limited fashion and for only about 6-8 months at a time. But I have to fit a very specific criteria to still have access after this round.


Continuation – rheumatoid arthritis – re-treatment in ‘partial responders’ to rituximab – rheumatologist

Re-assessment required after 2 doses

All of the following:

1 Either:

1.1 At 4 months following the initial course of rituximab infusions the patient had between a 30% and 50% decrease in active joint count from baseline and a clinically significant response to treatment in the opinion of the physician; or

1.2 At 4 months following the second course of rituximab infusions the patient had at least a 50% decrease in active joint count from baseline and a clinically significant response to treatment in the opinion of the

physician; or

1.3 At 4 months following the third and subsequent courses of rituximab infusions, the patient demonstrates at least a continuing 30% improvement in active joint count from baseline and a clinically significant response to treatment in the opinion of the physician; and

2 Rituximab re-treatment not to be given within 6 months of the previous course of treatment; and

3 Rituximab to be used as an adjunct to MTX therapy; and

4 Maximum of two 1,000 mg infusions of rituximab given two weeks apart.


So let’s hope I meet this as imperfect a solution as it is it is the only solution right now and for the forseeable future.


I can keep an eye on trials but they all have this same delay between trials and approval and approval and acess.


 


 


 


 

I am pretty open about what conventional and alternative therapies I use and how they impact my life- sorry in repairing my blog this year I have also lost a number of tags so will go back and tag all my health posts in the near future.


But I do also make daily care decisions so thought I’d sahre some.


Shower: Regardless of the time of day this is my first real therapy. The heat from the shower is so important to me moving I cannot even begin to express how lucky I feel to have this nearly every day. We are on a low rate so we get a lot of days where our cyclinder is disconnected during peak peariods and that has a pretty profound impact on how I can manage for the day.


For my disease and how it works in me applied heat offers immediate benefit. I am not sure why, you’d think it was too similar to inflammation to work, but I suspect it opens up the tiniest blood vessels to help with circulating the build up of immune debris. Many find ice helps, and I suspect it’s because it slows down migration of immune cells into the area, so that is a really interesting contrast in physiological reactions!


My shower is the time where I can brush my teeth and wash my face very easily, and I do both towards the end of my shower- it takes a while for my hands to warm up enough to do this and yes, laws of physics apply and there is a fairly rapid cooling off of extremities once the shower is over!


But it’s also a chance for my spine and ribs to also get mobile and that helps make breathing easier.


Food: Ah. Most people offer a lot of advice on diet, for me there is no difference in my disease activity based on diet. I have no real allergies or intolerances except some annoying reactions to acidic food or sticky starches.


I have friends with both allergies and intolerances and I do not share any overlap of symptoms. I am very lucky to have lactase persistance as milk is amazing for helping with the possible/maybe Sjogrens that often accompanies RA. I can start the day with a milky drink and not you know, choke on my medication or food 😉


I do try to stick to food that has not been heavily processed. I am though very lucky to live where I do that I can have this option.


I do also try to get protein- B12 is a big issue for me it gets depleted very quickly, totally disease related as well as medication. I used to be vegetarian (zero iron or B12 issues at the time) and last year started reintroducing meat. I cannot tolerate red meat- I notice health issues fairly rapidly, so I have found a balance. I have a lot of salmon, and I occasionally have sardines. I am not sure if it is benefiting my joints but I haven’t really had an issues with iron or B12 so there is a very definite health benefit there. I try and find the options with least environmental impact and I am very lucky again that this option is there.


Ergonomic factors: I have a super lightweight mouse for my computer. It’s a cheapie and I have cleaned it out a few times but it only has an impact in terms of clicking. I have my desk as a height where I can rest my arms on it and I generally type sideways and with frequent breaks even while in the middle of a sentence. I rely on error detecting in different apps and am really happy that Chrome offers spelling options. I prefer that to auto correct so I can learn what errors I regularly do so I can try and avoid them.


I like to sit with my knees pressure free so this means I will put cushions on seats and I rarely sit on the sofa. This means I’m usually sitting upright or in bed or standing so it can be a bit of a challenge energy wise. I find myself having to switch righ on or right off. So that is an area I’d like to explore.


There are more, so I may try and think of a few.


Oh mugs! Ugh, I have a lot of trouble holding mugs so I really love my tiny little plastic tumbler that works for hot and cold drinks. On the flipside the heat from hot drinks in ceramic mugs on my fingers is wonderful!

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