Autoimmune and Parkinson’s

[Smartdoc2]

Hello,I have had Parkinson’s for roughly 17 years,recently I developed multiple symptoms including dry eye and mouth.Also found Parkinson’s much worse.Diagnosed autoimmune seronegative arthritis,on prednisolone initially imprybut symptoms getting worse,transferred to grain free / ketogenic diet some improvements but convinced that I won’t make much more progress until I wean myself off steroids. I am due to see rheumatologist but I am very keen to avoid taking the treatments because rather than improving matters I think that the toxic drugs they prescribe will make me worse- especially my Parkinson’s.Anyone else with experience of an autoimmune illness and Parkinson’s? I would be interested to hear your story

[Fatsiajaponica]

Hi there, noticed that you have had no replies and I am afraid I will be no use but wondered if you are posting on the wrong site and that is why? This is PMR/GCA for which many of us have been prescribed prednisolone and are cognisant with the side effects of that medication. Hope you manage to get off at some point and feel better. There are people on here who have PMR/GCA and Parkinsons, maybe they will find you post and reply. My partner also was diagnosed with early onset, it's a bugger isn't it?So, between us we cover it but that is of little help. Go well and have a bunch of flowers💐and a hug🫂

[HeronNS]

I don't know much about Parkinsons, but several years ago I read this book, and you may find it interesting. (I have PMR and osteoarthritis and learned about low level light therapy in this book, which I found helpful) :

theguardian.com/science/201...

[DorsetLady PMRGCAuk volunteer]

Hi

There are a few patients on here with Parkinson’s and PMR - but not sure you will get a lot of replies . You might get more responses if you tried a couple of others forums as well -have linked a Parkinsons one znc NRAS

healthunlocked.com/cure-par...

healthunlocked.com/nras

[Nuts25]

Hi Smartdoc, not sure if this will help but I suffer with PMR and have been taking Prednisolone for many years. About a year ago I found that my mouth was very dry to the extent that the inside of it was sticking to my teeth, particularly overnight. I ended up going to the doc who thought it was fungal, 2 more trips and 2 more different tablets later, I was told to go to my dentist. He told me that I had Sjoegrens Syndrome - dry eyes, dry mouth and dry vagina. It is another autoimmune disease and , apparently, when you have one, you're vulnerable to developing others. I now have to use 5000 ppm fluoride toothpaste to reduce the chance of infection. Only the dentist can issue a prescription for this and they're convinced that 3 tubes will last 6 months! They won't. I am sourcing them on line. Also, Doc can issue a prescription for a mouth gel which moisturises. I drink a lot which is important. My biggest problem is my dry eyes, really struggling to get a really effective moisturiser - any recommendations would be much appreciated.

Hope there's something in this tome which helps 😊

[PMRpro Ambassador in reply to Nuts25]

Were you tested for antibodies to Sjoegrens? There is a similar syndrome called sicca syndrome that often accompanies autoimmune disorders, same effects but no antibodies.

Have you tried Xylimelts for overnight?

xylimelts.co.uk/

They contain xylitol - keep them well away from dogs as it is toxic to them, like chocolate.

[Nuts25 in reply to PMRpro]

Thank you so much PMRpro, what a star you are and what a resource this forum is, so glad I finally found it. No, I haven't been tested for antibodies but will definitely be pursuing this. Is it the Doc I need to speak to? Do you know if there's any treatment for it? I haven't heard of Xylimelts but will definitely try it, it's unpleasant when your eyelids stick to your eyeballs! We no longer have dogs so no problem there. Thank you so much again. 😊

[Nuts25 in reply to Nuts25]

Just checked the Xylimelts and now realise they're for the mouth! I won't put them on my eyes then 🤣😂

[PMRpro Ambassador in reply to Nuts25]

No, not for eyes!!! No, not really any treatments for the underlying problem though there are some that suppress the immune system that work to some extent. Hydroxychloroquine and methotrexate are both used if it affects other body systems. But mostly it is a case of managing the symptoms.

There are gels for the eyes - they are a bit of a pest during the day as they can blur your vision but are more useful at night. I think it is a case of trying what is available - I have dry eyes and get told off if I don't use eye drops but it's been a struggle to find ones that suit me. The pharmacy sold me a new one recently that was a disaster!! General eye care is important - as the article says, meibomian gland problems make things worse.

aao.org/eye-health/diseases...

[Nuts25 in reply to PMRpro]

I rather thought that that might be the case, need good viscosity which I haven't found yet, all pretty watery. I find the squeezy bottles tricky to use too. I am trying to remember to put hot compresses on and then squeezing where the oils are supposed to come out. It works but only for a very short period.

[PMRpro Ambassador in reply to Nuts25]

Are you asking for the right stuff at the pharmacy/optician? There are night time versions, thicker versions - but I suspect not easy to find in a supermarket.

By squeezy, do you mean the ones with a press top dispenser? I don't like them - more likely to miss I find! I like the sort you apply as a spray onto closed eyes - liposomic sprays I think,

[Nuts25 in reply to PMRpro]

I didn't ask, just browsed in Boots. I would very much prefer to have a spray on eyelids one but didn't see that option. Maybe I'll search online. My current one has a nozzle on the top which you upturn and squeeze the bottle, nigh on impossible to get a drop out, need to be Hercules to do it hard enough 😊

[Smartdoc2 in reply to Nuts25]

have u tried heat mask

[Nuts25 in reply to Smartdoc2]

Thank you, yes but I'm bad at remembering. Have now set my alarm to do it daily at 5 pm!

[PMRpro Ambassador in reply to Nuts25]

Google liposomal eyesprays. My optician in Scotland recommended one - there were a few and some are better than others. I used Clarymist, the one he said was best, but they changed the name to Eye logic eye spray. I found the Optrex one was rubbish!!

eyecarepartners.co.uk/eye-d...

[Nuts25 in reply to PMRpro]

Once again PMRpro very helpful, I will go down that route. Very happy to say we're off on holiday shortly and I shall need extra protection against sunshine 🌞 😎😂

[Smartdoc2 in reply to Nuts25]

thanks x

[Smartdoc2 in reply to Smartdoc2]

Re eye drops,yes hard to get drops out