Sjogrens etc

[puffyface]

I would be very grateful for advice...it's probably something I should know already.

I have Sjogrens, probably Lupus (or some sort of overlap) and Hashimoto's. I feel pretty rubbish quite a lot of the time...but know that I need to really think about what I can do to look after myself to try to avert flares.

I take various meds, but am really trying to think about the things that I can do/take to help myself.. My eye doctor provides Cyclosporine, but tells me that I should take 2g of Omega 3 daily and a high dose of Vitamin D. He seems to think I know how much vitamin D that is. Can anyone advise? I have never been brave enough to ask him. Also, I have been using Bare Biology for the fish oils...but it means taking 4 capsules a day to provide that dose. Can anyone help with a stronger brand?

Thank you.

[ATVMWF]

Hi Puffyface,Sjogrens and Hashimotos absolutely suck don't they?

I suffer from both of these terrible autoimmune conditions plus Raynauds and Vitiligo thrown in for good measure...🙃 so can really sympathise what you are going through. Often feel like we are the forgotten about in research and treatment options so we have to look after ourselves as best we can.

In reply to your questions about vitamins. I take 4000IU of Vit D and 100ug K2 (combined tablet) daily. The K2 is important to take alongside D3 to assist with absorption into your bones. and not into your arteries. I also take 4400mg Sea Buckthorn oil and Omega 7 combined tablet (recommended by the Sjogrens specialist nurse) for joints etc daily and a L-Methylfolate1000mcg tablet once per week, although, initially I did take this daily as my folate levels were very low. I did a private blood test through Medichecks before embarking on any of the above to check where I was and I do periodic tests to check my levels and adjust vitamins accordingly.

Like you I am also on Cyclosporin (Ikervis) for my extremely dry eyes, alongside Celluvisc (recently replacing Viscotears which is out of manufacture), Clinitas and Hylo Night. I find I need to have steroid eye drops every so often from the eye dept to assist my dry eyes as well.

I found going gluten free 4 years ago helped with the stomach issues caused by Hashimotos and a year ago I began self treating with T3 as Levo just wasn't doing it for me. I feel better then I did 5 years ago but it is hard to work out whether the SS, or the thyroid problems cause the up and downs and continual feeling that you are a battery that has run of off charge. Currently not feeling great and think I am in a SS flare as eyes very bad.

Hope this info helps and that you start to feel a bit better soon.

ATVMWF

[Xxxxxxx in reply to ATVMWF]

Where do you buy T3 in Australia please?

[ATVMWF in reply to Xxxxxxx]

Hi Xxxxxxx, I don't buy it in Australia as I am based in U.K. and source through private prescription.

[SusieW2 in reply to Xxxxxxx]

I purchase a lot of supplements on the Puritan's Pride website. It has a good reputation and several friends also use it. I don't take T3 as I am having OK results with a prescribed thyroid medication. I had to search for "thyroid" rather than T3 to find it on the site. Their prices are very good as well.

[puffyface in reply to ATVMWF]

Thank you so much. I think I’m in a flare too as eyes so bad. Do you use cyclosporine ointment. I find it irritates my eyes a lot and have had to stop for a few days to use some steroid drops and lots of Hylo. I’m hoping there is a drop alternative I can start the next time I see eye doctor. Do you put a heat pack on your eyes every day? He thinks that’s really helpful…and to lie down with it on for at least 7 minutes. I have just woken up (11.30 🙈😂…how awful!…)….maybe on the mend…but body feels like it’s been in a car crusher so will lie here for a bit. I am going to order vitamin d3 and k2 as you said today…and get started on that asap.

I take 50mcg of t3 daily for hashis. That helps me so much. I am incredibly lucky as my gp prescribes it….although I have a call booked for next week to go through my meds…and a bit concerned.

I think I’ve worked out that hormones…particularly oestrogen affects my symptoms. I don’t know why or how…but am taking hrt just now and by mistake (completely forgot) I double dosed one day (I think) about 3 weeks ago and am still feeling the repercussions.

I also take hydroxy and am going to start either methotrexate, Sulfa ….or mycophenate in the Autumn. Rheumy has left me to choose…but how would I know!?!

I hope you feel a bit better today. Thank you for your kind reply. It’s so nice to talk to someone who gets it.

Best wishes 😊

[ATVMWF in reply to puffyface]

Hi puffyface,Yes, I try to lie down very day with a heat pack on my eyes and put some Celluvisc, or Clinitas in just as pop the warm mask on. It's not always practical though as you have things to do...

I have Cyclosporin drops with are liquid, they can sting a bit and make your eyes water, which is the point of them I think. My eye consultant is a bit tardy prescribing steroid eye drops as they can cause cataracts in the long term so will only give them to me when my eyes are really, really bad. My GP can,t prescribe them.

I have to pay privately for my T3 as my CCG will not pay for Lio and endo refused GP referral, even though I have faulty DIO2 gene. Said it was a myth...😬 Endo's are not high up in my Xmas card list.

Find we have to do our own research and where possible, treat ourselves.

How do you find HCQ? I have heard it can cause stomach issues.

ATVMWF

[Heritage1961 in reply to ATVMWF]

Fresh Tumeric, Ginger & Lemon drinks are good for the eyes, inflammation, brain & and gut.

I avoid too much chemicals on my eyes as it ascerbates issues....stays on eyelashes etc.

I take Lutein Defence. Eye Health tablets when vision etc gets worse. Systain Ultra UD Lubricant Eye Drops to Flush gunk out...but always wash my face after as chemical irritates the eyes. I use Chlorsig Gel to get rid of infection and faster long term relief. Warm salt water or even when cold is a far kinder option if at home. I learnt from research I actually had Blepharitis...I had this horrible black scale build up down from my eyes "like a poodle"....Doctor just shrugged and said it was going to be a part of me...not!

I slowly moved the scale over several days...just using hand gel to fight the bacteria.

I found out that your eyelashes & eyebrows harbour minute parasites which infect your eyes...always have hair tied back from face at night as well....so use that hand gel as a healthy option over all of my face...as a presentative.

Google foods like eggs etc that have natural lutein in them.

Eyes and Mouth do seem to Flare together...SS definitely "runs your battery flat"......Fybromyalgia does not help either...it comes in many forms the longer you have SS....nightmare after those ### immunisations.

[Heritage1961]

Good luck on the Rheumatologist....My first one who diagnosed me re overwhelming attack....anti DNA matter and multiple organ issues...decides I know longer have Sjogrens as I self manage and lets have expensive weekly meetings and talk about your stress.

Sjogrens is a life commitment....it does not go away.'

I have recently changed surgeries re minimisation over overwhelming symptons which they do not wish to connect or understand. Tests were redone...duh! Yep Sjogrens/Rheumatoid Arthritis. COPD...limited Oxygen etc etc...Kidney disease evident. I did have a Hair Analyse Test and a Lucy Rose Thyroid test....so Doctors had medical proof....still a challenge...and very draining on the confidence and life in general. I came across a Worksheet with Sjogrens after someone posted live on U Tube....they have since passed away. I wish I had this worksheet with all the multiple organ, neuropathy..eyes/nose/mouth/ears.....might as well say your whole body....most doctors dont want to know in Australia. 3rd highest mortality illness in America. Keep it natural wherever possible!!!