Sjogren's Syndrome

[Bothan]

Was diagnosed with PMR 3 years ago. Under control at moment and injections down to monthly. Has anyone on this site gone on to develop Sjogren's Syndrone with PMR?

[PMRpro Ambassador]

It isn't uncommon to develop sicca syndrome alongside PMR - that is the identical symptoms to Sjogrens but no antibody can be found in the blood. Rheumies don't often test for the antibody.

[Bothan in reply to PMRpro]

This is going on 8 months with very sore dry eyes, left one worst that right, no amount of drops, heat pads etc make any improvement. Headaches are very bad and have 'white noise' constantly in my ears. Very tired all the time. All my Rheumy wants to do every 3 months is inject me. Feel getting no answers or relief.

[PMRpro Ambassador in reply to Bothan]

Inject you with what? There is no cure, as is the case for most autoimmune disorders - it is symptom managememt.

[Bothan in reply to PMRpro]

Steriod injections for the inflammation from my PMR

[PMRpro Ambassador in reply to Bothan]

Three monthly injections isn't the way to manage PMR. It is generally managed with oral steroids although injections CAN be used - but are usually required monthly or thereabouts in order to manage the inflammation continously.

[Bothan in reply to PMRpro]

I was on steriods for a no of years and slowly weaned off. On monthly self administered Amgevita (Adalimumab).

[PMRpro Ambassador in reply to Bothan]

Why a Humira biosimilar/adalimubab? That is an anti-TNF drug and they aren't recommended for PMR since they are rarely effective enough to justify the cost.

[Bothan in reply to PMRpro]

Coz Rheumy prescribed

[PMRpro Ambassador in reply to Bothan]

I assumed that - did they not explain why they chose that? Or do they think the PMR symptoms are due to the Sjoegrens? Though that isn't a usual approach there either.

[Bothan in reply to PMRpro]

My Rheumy is not the most pleasant man. When I question him, after doing my research he is quite dismissive. I am now after 3 years of being unhappy with treatment trying to get 2nd opinion. Difficult to get appts due to shortage of Rheumys.

[PMRpro Ambassador in reply to Bothan]

Well done sticking it for 3 years. Yes - 2nd opinions are a major problem if you can't afford a private audience with someone recommended.

[Den73 in reply to Bothan]

Hi Bothan yes I developed Sjorgens syndrome diagnosed in AugustSept 2023, suffering similar symptoms very sore eyes especially the left one. Castor oil was suggested on the site I tried it and did get some relief. You dont put it in your eyes just a litle on your finger and massage it gently on your eyelid careful not to get in your eye, didnt do me any harm just stung, but it has helped easing the inflammation, hasnt taken it away completely but definitely feel some relelief I do it i the morning and evening maybe should do it more?It is the most unpleasant condition, cant even explain he fatigue🤱 i too am battling to receive any sort of treatment for the symptoms as it cannot be cured, havent seen rheumatologist since he diagnosed it, I am on Pred, after throwing all my toys out my cot 2 weeks ago I finally have another appointment with him next week Thursday, I feel like I have been put in a rowing boat oars taken away and pushed out on a stormy sea no advice GP admitted he doesnt know anything about Sjorgens! Very disheartening when its such distressing symptoms. I have received such support from this site, the heat pads also give relief on low and only for around 8 minutes twice a day.

Click on Sjorgens on the search bar and update your profile it will take you to the site, I also received some advice from the dear ones there. All have been my lifeline on desoerate days. My thoughts are with you hope you find some relief.💕

[Bothan in reply to Den73]

Hi Den73, sorry to hear about ypir diagnosis but very glad to meet fellow sufferer. Though I was going crazy and think my family did as well but for nasty looking eye. I also suffer bad headaches, gastrontritis and imflamed esophasus. After a gastroscopy my specialists says it is due to SS, popping meds for that as well. All these meds are having a detrimental effect on my liver. The tiredness is a killer and feel quality of life impacted big time

[Den73]

I am also so sorry you have this diagnosis...its a very difficult one to get a handle on ...my PMS is easier to handle because of the steroids.I am very much a believer in alternative homeopathic meds, and the reason I have been reluctant and to be fair to my rheumy he also feels the same, my liver enzymes are already high so he has been reluctant to add further harming meds.

I take milk thistle A.Vogels, dandelion and celery tincture protects the liver and my enzymes bloods have come down of no alcohol. The dandelion protects the liver from the affects of the meds on the liver. I am also under the csre of a homeopath, but because of the hugh doseage of dteroids I am still on, not so sure it will work as well as it should I am on 45mg a day of Predsnisolone in the process of decreasing another story!! I have just discovered a homeopathic remedy for the fatigue abd the sore eyes, just dtarted taking it ...but if its a way you think you may choose, you provably need to discuss with your consultant is very happy for me to go down that road. The homeopathic meds will do you no harm. The new remefy I am taking now is Weleda brand called Arsen.alb dosage and use on the bottle... Boots used to sell it but due to slow sales no longer do, I get mine on Amazon, its a bit soon to say if its going to help, just started on the weekend.......due to your reaction on your liver you have made me rethink further drugs🫣 .........tricky.

[Bothan in reply to Den73]

My consultant took me off all vitamins and alternative but ignoring him and gome back on the milkthistle and omega. Will try Dandelion, hadn't heard of that. My optician also suggested some who does light therapy for my eyes, researching tnis at the moment. Thank you for your suggestions. I feel far too young to be this debilated 🤦‍♀️😜

[Den73 in reply to Bothan]

I so hear you!!! VItamins and Omega 3 and I also take Magnesium, I sleep like a baby since taking Magnesium.....can not do without.....I have realised that I have to be proactive for myself and have found this forum invaluable, the discussions I have had and the advice given I trust completely as these are real people who have suffered for long periods you can almost say its tried and tested, the lowering of steroids I have taken advice staggered the lowered dose over a period of 3 weeks and not by 5mg by 2.5mg instead and so much better, before I kept a flare up of GCA so I would rather ask the ladies and gents here......really got me through the days when I was at a loss. So again thank you all💓for the sound advice. Take care