Paldromic rheumatism

Thanks Eileen. This makes the fourth (possibly fifth) autoimmune disease I have then: Hashimoto's hypothyroidism, thrombocytapenia (TCP), Lupus, palindromic rheumatoid arthritis, and they have recently found that macular degeneration has an immune system link. And do I count allergies and intolerances? If so, sixth. I had better make sure I keep my sugar intake down!

My own belief is that autoimmune disease is autoimmune disease - and some people have a small selection of expressions - others have a wider range. In the past there was a "need" to give things a name and many doctors attained fame by describing a few patients with similar selections and giving it a name. Now they are able to look for laboratory evidence and see things aren't as simple as they thought back then. They can't do much, just manage it, but they have to accept that and not dismiss the patient just because they don't fit their preconceptions.

Good luck!

I was researching this until 2:30am last night (this morning I wish I hadn't!)

There's a couple of good websites 'arthritis research UK' and 'arthritis'. There is value in getting a diagnosis as some types of arthritis damage the joints and there are medications that can be prescribed that help. There is a risk of it developing into rheumatoid arthritis - which definitely needs treatment. The two websites differ in what the risk is. One says 20-30% the other 50%. So at least now the doctors know what to look out for. There is a blood test for 'rheumatoid factor' that gives a good indication whether one is going to develop rheumatoid arthritis.

What was interesting was the research trail...

Palindromic rheumatoid arthritis has symptoms that include gastrointestinal problems...and is 'frequently the presentation for Whipple disease' (which if not treated can be fatal). Source = Wikipedia and needs further verification - I usually try to find 2-3 different sources.

Another cause of palindromic rheumatoid arthritis (the names seem to be used interchangeably) is a gut parasite.

After the destruction of the gut bacteria by all the antibiotics i get given for the frequent infections that arise as I have hypothyroidism, this doesn't come as a surprise.

Oh yes and there's an autoimmune link too..

Apparently palindromic rheumatism/Palindromic rheumatoid arthritis is very rare. Though as I've now been told that a number of times for other medical conditions I have, disbelief has set in..I just tend to think they haven't yet got good at identifying all the people that have it.

I can't have hydroxychloroquine as one of the possible side effects is damage to the macular at the back of the eye (this is the area which is used for one's central vision). As I have already been diagnosed with macular degeneration it is contra-indicated for me. I would strongly suggest you use an Amsler Grid on a weekly basis (preferably daily) to check your eyesight is OK. You won't notice a problem - as our brains are very clever and if there ia a problem with one eye the brain makes up a complete picture by using the information it is getting from the other eye. If you notice gaps in the lines of the Amsler Grid, or the lines are wavy, it is imperative you see an optician/doctor immediately. In UK the recommendation is that, if necessary, treatment for macular damage is started within 2 weeks. There are two types of macular degeneration: wet, and dry. It is the wet sort that needs prompt treatment as it is caused by blood vessels leaking at the back of the eye that permanently damage the light sensitive cells in the macular.

This may not ever apply to you but I wanted you to be forewarned.

By the way, there might also be a food link to palindromic rheumatoid arthritis. It seems to get worse when I eat certain foods. My current ideas are red meat, alcohol, and kale.

I'm really glad you have only had one flare up recently. Which joints are affected for you? It's mostly my knuckles, but may also be my knees and ankles. I say 'may' because I hadn't connected the pains in these areas until I read that it affects the soft tissues surrounding the joints as well.

Good luck with your battle too,

Hi Paula, thank you for replying - I'm sorry to hear that its progressed to RA for you. I too find my flares are mild and don't cause too many problems, particularly as I seem to be better if I don't eat flapjack (homemade). It's likely to be either the oats (gluten) or the sugar in it. I was going that mild flare up would mean I was unlikely to develop RA but your experience suggests otherwise. What are you on for the RA? All the best to you too.

Hi Barb, I have been put on 200mg plaquenil once a day to begin with hoping to get it into remission, it is what they would class a mild RA , if this is mild then I'm sorry for people with severe disease.😬😬 rhumatologist said it could take 3 months before any effect from the drugs are seen. Fingers crossed I really would like to stay away from the other stuff. I think stress plays a huge role in flare ups with both of them.i am thankful that I have had 26 years of reasonable health to date, I will just deal with it as it comes best of luck to you, autoimmune disease stinks.

Hi Paula, hopefully you won't have to wait the full 3 months before you see some benefit. All the best Barbara