Hi everyone. Sorry I’ve not been on much again lately - it feels like I’m only ever here asking for help rather than giving it but unfortunately life just seems to keep getting in the way and I just run out of energy I’m afraid.
Sooo - apologies in advance as this is a long one. I had an appointment with the photo dermatology unit at Guys this week and they are now of the very firm opinion that my photosensitivity is totally lupus related and that my rheumy needs to change my meds to get this under control. I’m seeing her in a couple of weeks so trying to get the options clear in my own head so I can better discuss it with her.
At the moment I am on 20mg metoject injections once a week. I’ve been told they can be increased to see if it helps but I’m not keen as I lose 2 days a week with headaches and feeling horrible on them as it is and I’m not keen on making that worse. I haven’t injected for the last 6 weeks for various reasons (winter stomach flu which still has me laid up being the latest reason to be told to hold off for a couple of weeks) and I am finding myself dreading starting again as I know how generally bad I feel on it. But it is the only thing I’ve used so far that my stomach can tolerate. As far as it’s effectiveness my crp hasn’t really gone down over the last 2 years on it but I have stabilised at around 8 so I’m not going up and down all the time like I was. I’ve had a few 10s lately and started flaring again and my RBC count has been high more than once with me getting very out of breath so my warning flags are starting to raise though. Last time this came up it was me that chose to stay on the MTX as I took the view that I was kind of coping where I am and not to rock the boat. But as Guys have pointed out my version of coping wouldn’t be acceptable to anyone else and involves me hardly going out, avoiding the light like a vampire and really struggling whenever I’m anywhere that I can’t totally control now and they do have a point. Medically I am viewed as low level as it mainly affects my tendons/joints and making day to day life challenging but never anything that is particularly damaging. At the moment I think my neck may be causing problems as I keep getting dizzy spells and constant headaches for example but when it’s gets too severe I’m guessing it’ll be the same as the frozen shoulder where we throw in yet another steroid injection and it moves on to the next spot. This isn’t happening as often on MTX as it used to but that pattern is starting again and constant low level pain is exhausting.
So that leaves me with where to go from here. My love affair with MTX is rapidly decreasing but of the other options I can’t take NSAIDs after a stomach bleed on both voltarol and arthrotec (the 5 days on arthrotec before we had to stop I felt awesome though but that was long before I was this bad) and we’ve tried plaquenil, azathioprine, mepacrine and now methotrexate - I’m sure there have been other varieties of these as well but I can’t remember them now. All of them have made me so sick that I’ve been unable to take them and I get hideous acid which unfortunately we can’t treat with either the omeprazole family or ranitidine as both made my eyes swell up.
So I’m not sure what else that leaves. The consultant at Guys mentioned mycophenelate which we haven’t tried yet and I know there are the new biological treatments which I know little about. I have always responded very well to depomedrone injections, I even lose weight on them which confuses everyone, and Guys did wonder if it might be time to try a low dose of prednisone. I’ve always resisted this strongly due to the possible side effects and I know that once on it it’s very hard to come back off even where it isn’t working well but I’m now in two minds - my hips are horrendously bad and I’m walking with crutches again so I’m wary about damaging them further but then they are so bad that I’m going to need injections again soon anyway and is that any better? My shoulders are both beginning to cause pain again at the moment as well and possibly my neck which may all need needles stuck in them too when I reach my enough is enough limit.
So I guess my question is what experiences have others had both good and bad on the various options once they’ve reached this kind of crossroads? I’ve got no organ involvement yet as far as I know, although there is always blood and protein in my samples which nobody understands, and it’s mainly tendon/nerve swelling and the photosensitivity that are the issue.
And don’t worry I do know that we all react differently and answers won’t be taken as medical advice it’s more me trying to sort in my head which route I’m more comfortable with and whether I stop fighting the one that may now be looking most obvious.
Any help greatly appreciated as always and sorry for using here as a sounding board but it is incredibly helpful to be able to bounce the options off of people who actually understand what I’m talking about x