A late night update

It’s quite late here so I am only going to write a quick update… At this rate I am only going to get 5 hours of sleep.

So the other week I had my review with my asthma nurse to see whether Singulair has worked for me… It had not, and in my opinion it was a waste of money. The only effect it had was to give me wacky dreams and to keep me awake, and was generally something that I didn’t feel comfortable taking anymore. My peak flow was in the green zone and I felt well controlled, but yet exercise was still an issue. My asthma nurse decided to grab another nurse in to help with the consultation and her advice was to see the chest consultants up at the hospital. I was not too keen on this idea though. I’m not going to go into details but unless you know me well, you probably wouldn’t know that I have quite a lot of stuff going on in my personal life right now and I do not need another consultant, that I don’t feel I need, complicating that right now. I managed to convince the two nurses to let me have a trial of Seretide again. For those of you who are new to my blog, I tried Seretide as a DPI for about 2 months back in 2012/2013 and found that it actually exacerbated my asthma, so this time we have decided to try the MDI [aerosol version] of Seretide and see what happens. The problem with Seretide is that you don’t get the dosage flexibility that you do with combination inhalers containing formoterol as the LABA component [AKA Symbicort, Flutiform, etc]. I used to take Flutiform 125/5 2 puffs twice a day on a normal day and 3-4 puffs on a day that my asthma was bad or on days I was exercising. However, I was prescribed Seretide 125/25 2 puffs twice a day so there is some mismatch in dosage that I was worried would mess with the control that I already had. But my breathing has been really good since starting it (with the exception of one attack which was due to me completely ignoring my triggers on a night out… so basically I caused myself to have an attack, not something I would advise!). I am still worried about what might happen if I get a cold, which is when I would normally increase my dose of Flutiform but right now things are looking up!

I also wanted to update you all on my joints, they have actually been feeling pretty good recently. Not much pain or morning stiffness at all. I am still getting swelling in my ankle, but we are now querying whether that is due to this autoimmune condition or whether it is due to a mechanical problem… I have a MRI in May to try and work out what is causing the pain and swelling there. However, this past week I have seen a massive increase in pain, and stiffness, and fatigue. In fact my joint pain was so bad at one point that I as seriously considering going to A&E… while you are sitting on the floor in your bathroom, trying not to vomit your anti-inflammatories up from the pain, A&E seems really, really inviting. But I got through it, the meds kicked in and I was mobile again surprisingly. I honestly thought that day was going to be a day from hell, completely spent in bed but I actually managed to go out for a run that evening. I spoke to Britt [AKA The Hurt Blogger] about this as I have read about similar experiences she has had, and she has found that exercise can reduce her symptoms, of course without meds exercise wouldn’t really be a viable option but together… they help. And that is what I have found too, the meds [and heat packs, and hot showers, and ice packs] help to get me moving, and once I am moving comfortably enough to do exercise, that helps to reduce my pain and reduce any stiffness that I still have. Don’t get me wrong I am still sore, I do still struggle but exercise helps to make my struggles easier…

I have also been experiencing some newer symptoms… or maybe they aren’t that new and I am only just recognising them as symptoms now. I have been having experiencing hair loss, literally I loose a handful of hair every time I wash my hair. I am so thankful that I have thick hair, I don’t know how I would look otherwise. I am pretty sure it’s not the meds because I don’t really take anything that can cause hair loss, and I have been on all of my meds [except from Seretide] for long enough now to discount that as a symptom. A friend of mine [who deals with autoimmune arthritis, among other autoimmune conditions] has suggested that it could be the inflammation from my condition causing the hair loss, which is a distinct possibility. I have also been getting nose ulcers… for those who don’t know what these are they are essentially the same as mouth ulcers but in your nose, and mine are incredibly painful! I asked a pharmacist about them and she suggested trying vaseline on them to try and soothe them a bit, and it helps to a certain extent. Since the end of February I have had about 5 or 6 and they are definitely not pleasant. These are two symptoms that suggest that my condition is not as controlled as I had thought and will definitely be brought up to my rheumatologist when I see her next… These may also help with narrowing down my actual diagnosis rather than just being labelled with an autoimmune disease.

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5 thoughts on “A late night update

  1. The nasal blisters, joint pain, swelling, fatigue, and hair loss are symptoms of lupus. I have RA, fibromyalgia, and asthma and experience many of those symptoms myself. It sounds suspiciously autoimmune. Ask for a sed rate and an anti-nuclear antibody test. That will determine your level of inflammation and screen you for common autoimmune diseases.

    Sometimes my nasal blisters clear up after a round of antibiotics. That may also be something to suggest to your doctor because nasal blisters are a painful nuisance. I’ve resorted to dabbing the blisters with a small amount of Preparation H in the past. Not sure this is pharmacy recommended, but it did help with the pain and swelling.

    Best of luck!

    1. My actual diagnosis is “Autoimmune disease (doesn’t quite fit criteria for lupus), secondary Raynauds and ANA positivity”. My ANA has been positive since we first tested it about 5 years ago, except from the other month after taking Plaquenil/hydroxychloroquine since November…
      Mind if I ask what Preparation H is?

      1. That is quite the diagnosis. I firmly believe that there are autoimmune diseases yet to be named. I don’t quite have RA. I have autoimmune disease affecting joints similar to RA without positive rheumatoid factor.

        Did they not find anything on your extractable nuclear antibody reflex? That’s typically the test performed after a positive ANA.

        Preparation H is an OTC anti-inflammatory cream developed for treating hemorrhoids. It also helps with swollen pimples, random nasal blisters, and under eye bags.

      2. If they did find anything about my retractable nuclear antibody reflex they haven’t told me… It took my a while to find out it was my ANA that was positive, I was under the impression for years it was my IgM- RF that was positive but I don’t think that is the case.
        I totally agree with you! Some people have symptoms of autoimmune conditions that don’t really match the criteria for most autoimmune conditions…

  2. It is possible to have a positive ANA without a positive extractable nuclear antibody (ENA). The ENA would indicate which autoimmune disease you have – for example Sjorgen’s disease.

    IgM is short for immunoglobulin M. Everyone is IgM positive since immunoglobulin M is a type of antibody produced by the body. Unless the doc did some sort of IgM test specific to an autoimmune antibody or allergy antibody. But it wouldn’t be generically positive.

    Also, rheumatoid factor (RF) can be positive or negative in RA patients and non-patients. You can be RF positive and never develop RA or RF negative and develop RA. A positive RF just indicates you’re more likely to potentially have RA.

    Isn’t medical stuff weird? You can ask for print outs of your lab results when you get tests. Sometimes you do have to pay a fee to get the print outs tho. The lab results will only tell you the result of the test and not how to properly interpret the result, however.

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