Just a quick post. I have posted a poll on the blog’s Facebook Page asking what current Biologic Treatment people with Stills are currently taking, so that I can try and see which drugs are the most widely used in the treatment of Still’s Disease.
The poll here is slightly different, in that you can vote for more than one option, to give you the opportunity to record each Biologic drug you have tried, since I figured this might give us a broader spectrum to base results on.
You can take part in both if you wish!
NB. Please only vote on the poll if you do have a diagnosis of Still’s Disease, Adult Onset Still’s Disease or Systemic Juvenile Arthritis, thanks.
Just a quick post to create another poll on something I’m yet to get to the bottom of after all these years: What is the best form of relief for a swollen, painful joint? You would think, that since most swollen joints are also hot thanks to the underlying inflammation, a cold compress or icepack would settle things down. But, at the same time, joint pain can often increase in cold weather, so heat seems like a reasonable option too.
Personally, I think that cold may help with the swelling if I gave it chance, but I really can’t bear cold on my joints as it increases my pain. At the same time, heat is quite soothing on the joints and can ease or at least disguise the pain, but it does nothing to take down the swelling.
I know at times I am, and never more so than when I started to look into things more for writing the Still’s Disease section of this blog. It seems that I’m not the only one either, as a brief exchange between tweeters proved earlier today, prompting me to write this.
The main issue seems to be a confusion around its relationship to other conditions. Questions that arose were:
Is Still’s disease the same as JIA?
If you are diagnosed with Still’s Disease as a child, does this diagnosis change to RA in adulthood?
Is there a difference between Still’s Disease in adults and children?
I can try and answer, but as always I am using only my own knowledge / resources and obviously, I’m not a doctor.
Still’s Disease seems to be interchangeable with the term Systemic Juvenile Idiopathic Arthritis and it’s true that it was first described in children. However, it is not simply a juvenile form of RA, the systemic features can often be more apparent than the joint issues. I know this is often the case for me – Mainly, I have fevers that peak at various times of the day, a rash that thankfully comes and goes (I’ve posted a couple of pictures here), enlarged glands, enlarged spleen and liver, tachycardia, the dreaded sore throat and swallowing problems, episodes of Pericarditis and then the funky bloodwork. I’ve also experienced degrees of Liver and Kidney damage in the past, although thankfully it has all been reversible.
These things usually appear first in each flare-up and then the joint issues follow alongside, often quite acutely, but not everyone is the same. There have been times when I’ve had to be admitted into hospital purely for the systemic symptoms, without any obvious joint involvement; on the other hand, I had surgery on my right shoulder when I was otherwise well.
So if a child presents with such striking systemic symptoms alongside joint pain and swelling, they are likely to be given a diagnosis of Still’s Disease or Systemic Juvenile Idiopathic Arthritis. If an adult were to present with these symptoms, they would receive a diagnosis of Adult-Onset Still’s Disease; this is where the term sJIA becomes redundant (Adult-Onset Systemic Juvenile Idiopathic Athritis anyone?) and why I think we should stick to the term Still’s Disease.
Similarly, a child with Still’s Disease can grow into an adult with Still’s Disease, with the symptoms remaining the same. Perhaps for some, the systemic symptoms subside and their diagnosis is changed to Rheumatoid Arthritis, but in my own experience the diagnosis has stuck. My Rheumatologist also makes a distinction between Still’s Disease and Rheumatoid Arthritis and their similar, but separate, treatment. For example, Anakinra is a drug no longer prescribed for RA but has proven to be particularly successful in the treatment of Still’s Disease, and, when recently discussing the success rate of my current treatment Orencia (73% improvement for people with RA), I was reminded that this did not apply to me directly as a Still’s patient.
Although part of the same family of disease and sharing many symptoms, the two are separate – the best way I can describe it is similar to the difference between Lupus and RA. Unfortunately (for us at least), Still’s Disease is not widely known like Lupus and even people who recognise terms such as JIA, RA, sJRA and so forth, may not understand the distinction and/or similarities between those and Still’s Disease. This makes it very hard to try and get information and support as someone who is newly diagnosed, and for the rest of us to try and raise a bit of awareness.
Perhaps we need to stop the interchangeable name and stick to one recognisable term to clarify things and reduce confusion?
Home from my Rheumy visit and feeling a bit tender; ended up needing my shoulder injected too as there was quite a bit of fluid there. Steroids always seem to do the trick for me and it usually only takes a few days for things to settle down after having a joint injected so I’m confident I will see some improvement soon. If only there weren’t so many side effects, treatment would really be that simple.
I was prompted to discuss this with my rheumy earlier, when a certain conversation got me thinking about the pros and cons of steroid therapy as it stands. I hate the stuff, but I have to say it works when I need it to and when things get tough, a temporary increase is usually the first thing we try to settle things down. I have been on various doses over the past fifteen years and that is with just one break, which happens to coincide with my most serious flare up. When I am well I tend to hover around the 2.5mg – 5mg dose and the highest I’ve been on is 80mg when I was very first diagnosed; the rest of the time I’m somewhere in between.
I hadn’t been overly concerned about this until recently, taking the view that it was important to feel as well as possible and to reduce symptoms and any possible joint damage. Then I happened to see my consultant’s registrar in clinic and he said that one day I/we would regret all the steroids I have had to have over the years in various forms (Oral, IV, Joint Injections). Of course this worried me; I have already experienced a lot of effects already, including an increased susceptibility to infection, and persistant tachycardia. Then there are things like heartburn, stretchmarks (ugh) and weight gain (double ugh), which aren’t pleasant but are bearable in comparison to the pain of a flare or joint damage.
The most worrying ones for me are those that are possible in the future, such as adrenal failure, Glaucoma, Diabetes and Osteoporosis. I know that my bone density is already below the normal range and I am at risk of developing diabetes anyway since it runs it my family. As for adrenal failure, the possibility of this was already mentioned when I last tried to wean myself off Prednisolone altogether four or five years ago; I could never get past the 2.5mg mark without showing some signs of this. Perhaps it’s about time that I do start to think about how these and other possible contraindications could effect me in the long-run.
I guess what surprised me was that two rheumatology practitioners, working together, could have such different opinions on my treatment with steroids: The consultant, who increased my Prednisolone dose and gave me two cortisone shots to ease the flare and the registrar, who was extremely reluctant and in fact wanted me to reduce the dose, despite the flare. I know one has more experience than the other and perhaps that is the best factor to base a decision on… but how do you know for sure which approach is right?
On top of weighing the risks with the benefits it also becomes a matter of weighing the present with the future; we are always being told to live for the moment and of course we all want to feel as well as possible now. And is it really worth putting present health on hold to protect the health of a future, in which anything could happen – for better or for worse?
Perhaps it’s simply trying to find a balance between the two? Weighing the risks and benefits of all sorts of things becomes part of life with Still’s Disease after all.
My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.
I have tried numerous drugs to treat my Still's over the years, including:
Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.
Happy reading :)
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Toughness is in the soul and spirit, not in muscles.
The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong
~ Thomas Carlyle
Strength does not come from physical capacity. It comes from an indomitable will.
~ Mahatma Gandhi
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'