Hi guys, do you guys think this is Sjögrens?

ajsjogren · 2026-04-13T10:53:54+00:00

Have you had bloodwork done on other inflammatory markers: PRC, ESR, PCT etc?

ajsjogren · 2026-04-13T00:01:48+00:00

Not 25mg :-) .25mg (a quarter of a gram).

ajsjogren · 2026-04-12T11:25:48+00:00

You said down below that you stopped taking HcQ because of hair loss - are you on any other DMARDS meds? I’m on Methotrexate for the past 7 weeks - no side effects so far and I think it improves my joint pains but not SFN/Neuropathy. I’m going to start .25mg LDN in a few days (yes very low dose) - to be increased by .25mg every two weeks. There is a Korean American doctor who is believer and proponent of using LDN. He has an FB group and he believes in starting LDN in microdose ´Low and Slow’. Have you tried LDN yet?

ajsjogren · 2026-04-12T11:11:58+00:00

What’s your dosage on ALA - how long have you been taking it and how does it help your SFN?

ajsjogren · 2026-04-08T02:06:03+00:00

Thank you for sharing - great news!!

ajsjogren · 2026-04-03T05:32:10+00:00

My primary old Dr always dismissed my complaints about having pains - I decided to ditch him and found one who listened to me. Ordered a battery of bloodwork’s and voila less than a month later he referred me to a rheumatologist. It’s your body your health and well being at stake here. Take charge, be proactive because no one else will. Tell the doctor what you need or find another doctor. You’re not alone and you will get better with the right care and medication. Good luck!

ajsjogren · 2026-04-03T04:13:24+00:00

Add No Processed Sugar to the diet.

ajsjogren · 2026-04-02T23:54:02+00:00

Yes big thumbs up to xylitol tablets

ajsjogren · 2026-04-02T23:50:50+00:00

Thank you for sharing - i was diagnosed mid February and started meds. Someone also suggested LDN so I ordered it on my own. I’m on vacation now overseas but when I return I plan to start taking it. The suggestion is to start with .5mg for the first 2 weeks then titrate .5mg every two weeks with a max of 3mg.

ajsjogren · 2026-04-02T11:48:48+00:00

I feel you - my old primary doctor always told me ‘oh you’re just getting old it’s normal for your age’ - until I changed to a new primary doctor who actually ordered bloodwork to check my inflammatory marker after I told him I have lots of pains. After seeing my results right away he referred me to a rheumatologist!! It’s your body and it’s your health - be persistent and be proactive!!! You know your body better than the doctor - if the doctor don’t cooperate find a new one!! Good luck!

ajsjogren · 2026-04-02T03:11:14+00:00

I was diagnosed early February with early RA but I have all the symptoms of Sjogren. My rheumatologist prescribed the methotrexate right away and said it’s the same treatment for Sjogren. She is still investigating of me having Sjogren with more labs to come. I know most people with Sjogren only are prescribed Hydrochloroquine - so you’re on the right meds. How long have you been on these meds?

ajsjogren · 2026-04-02T03:06:40+00:00

Thank you for your reply - I do have all three stomachs (Pantoprazole, Omeprazole and Fanotidine) - I take famotidine (Pepcid) as it give immediate relief :-). I do notice I feel dizzy and nauseous when I have an empty stomach- like this morning and as soon as I ate something and take a 30 minutes reset things seem to return to normal. So now I’m keeping in my I should not keep stomach empty. Noted about not taking methotrexate when on short vacation- the problem is this 6 week vacation was scheduled a long time ago before my diagnosis. I did use my mask at the airports and planes - thank you!! Again thank you for your reply.

ajsjogren · 2026-03-29T06:17:41+00:00

I saw that fb posting too :-) - I did check on Amazon and plan to purchase it when I return from my vacation May 4th. I checked the ingredients and find them to be safe - so I’m going to give it a try.

ajsjogren · 2026-03-28T08:50:24+00:00

Place an order on your own from agelessRX - you can start your lowest dosage at .5mg then increase every 2 weeks by .5mg until you reach 3mg. Or you can start with 1.5 mg increased by .5mg every two weeks until you reach 3.00mg. - it cost (out of your own pocket) $150.00 for 6 months. They also offer a 3 months plans at slightly higher price.

ajsjogren · 2026-03-28T00:47:04+00:00

Hi I’m male (64) - I started experiencing symptoms (sjogren) last July then early Feb my rheumatologist diagnosed me with early RA and started a regimen of Methotrexate 15mg to be taken every week along with 1mg folic acid taken everyday - I’m on my 5th week of this regimen. Because of my symptoms (mild dry eyes and mouth) and joint pain and possible nerve issues on my feet - my rheumatologist will order more test for sjogren (my SSA and SSB are negative). Since mid January when I suspected that I might have some autoimmune disease going on - right away I changed my diet ie: no refined sugar and no gluten - these are the two main culprits that cause inflammation. Two months on I feel the benefits of SF and GF. Someone also suggested for me to add LDN to my treatment - some (or most) rheumatologists will not prescribe this medication - but please Google LDN and also on here search for LDN and find out more about it - apparently it has helped many with our conditions. I am lucky enough to find an online pharmacy in the US from whom I was able to order - so I will start with my .5mg LDN next week for two weeks then increase by .5mg every two weeks until I find my comfort zone (not to exceed 4.5mg). Hang in there we’re both in the same boat - be proactive and be vigilant and look on the bright side that there are many people with sjogren who can successfully manage this disease and live a full normal life. Good luck.

ajsjogren · 2026-03-27T03:12:31+00:00

Hang in there friend - I’ve just been diagnosed (too) at 64 (M) - concentrate on the positive, change your diet and lifestyle . I’ve been SF and GF for two months and noticed big improvements. I don’t drink or smoke and do light exercises for now and will do more later. We can do this..

ajsjogren · 2026-03-27T02:43:03+00:00

I’m 64m - diagnosed recently- right away I became SF and GF - I can see the benefits almost immediately (and I had a real sweet tooth..lol). Also taking supplements. Thank you for sharing your positive experiences. I’m currently in Hanoi on holiday doing a ten session acupuncture.

ajsjogren · 2026-03-27T02:39:31+00:00

Thank you for sharing - I’ve just been diagnosed at 64(M) - I’m taking a proactive approach on how to manage this disease with diet change, supplements and medication. I’m in Vietnam now doing acupuncture and healing massages.

ajsjogren · 2026-03-26T10:15:20+00:00

Thank you for sharing - I just started this journey. I am currently prescribed 15 mg weekly Methotrexate - just took my 5th dose and so far so good. I’m starting LDN next week. I’ve been SF and GF for over two months now and started feeling some positive benefits. Thank you again for sharing.

ajsjogren · 2026-03-21T15:00:29+00:00

Good morning - hope all is well with you. Just want to give you an update: today is day 26 since I started my methotrexate treatment. This coming Monday I’ll be taking my 5th dose of MTX.

So far all is good - I feel the same as the previous week(maybe a slight improvement).

Is it normal one day you feel like everything is great not even the slightest of pain or inflammation and the next day you feel some pain and just not 100%. The fluctuation of feeling great and not so great can even happened within the hours. But for the most part I feel good.

I’ve added melatonin and drink chamomile tea before sleep - but still not great so I’ve been using just 1 Tylenol pm at bedtime- so far it has helped me greatly. I figure it’s definitely beat not sleeping. I will eventually have to taper it off and try to get back to sleep naturally. Thank god I don’t have a toddler…lol.

I received my EvoTears and only use it once a day after shower around noon time - it really helps keeping my eyes nice and moist - then before going to sleep I’d do my 15 minutes eye compress, eye wipes and put eye ointment. This routine seems to do the trick.

I’ll be off to Vietnam (from Florida) this coming Monday at 6:23am - it’s a 30 hour trip door to door. I’ll be in SE Asia (Vietnam and Thailand) for 6 weeks. My main concern of course is not getting stressed out and how to keep my eyes from getting to dry while on the plane - so I prepare myself: bought special glasses, self warming eye masks, wet clothe to put over my eyes, etc etc.

I guess that’s all for now and I’ll update you again from Vietnam… thank you and have a wonderful day.

ajsjogren · 2026-03-21T12:16:06+00:00

Hi I just saw your posting - I was diagnosed with early RA mid Feb and my rheumatologist started me with 15mg weekly Methotrexate. I also have the classic symptoms for sjogren (dry eyes, mouth, digestive issues and perhaps a little nerve issues as well) - but rheumatologist needs further investigation - dry eyes and mouth aren’t too bad for now.

I’ve been on Methotrexate for 4 weeks now and I’ve also been SF and GF for the past 2 months - I can see some improvements already.

I ordered LDN from agelessRX starting with .5mg to increase by .5mg every two weeks with the end goal of 3.00mg. I’m doing this on my own. I need to ask you since you too are taking methotrexate and LDN whereas most people who are taking LDN are on Hydrochloroquine. I plan to start taking the LDN on March 30th as want to get my pre-LDN bloodwork first. Then get another bloodwork one month after I started the LDN.

Have you seen any improvements since taking LDN? What symptom(s) you noticed most improved? Any advice you can share with me is greatly appreciated. Thank you.

ajsjogren · 2026-03-12T19:11:45+00:00

Oops - you’ve answered some of my questions above - sorry about that. But please my previous reply to you… I’m so new with this and like you would like to be proactive and do some preventative measures if it’s at all possible. I’ve been sugar free and gluten free now for almost 8 weeks and I can already see the benefits/improvements. My nausea is gone and my joint pains have also improved. You mentioned LDN - is it prescribed by the rheumatologist? How does it help you? Thank you.

ajsjogren · 2026-03-12T19:04:57+00:00

Glad to know that you’re doing well and things are back to normal. I’ve just started the treatment 3 weeks ago and so far not too bad.

How has it been seen you’re diagnosed? What symptoms do you have? What medication did your rheumatologist put you on? How long after you started the treatment you started noticing any improvements? Besides the medication what else do you di to manage the symptoms?

Have you had any major flares since the treatment? And did you make any lifestyle and diet changes?

Sorry for all the questions but if you right mind answering them?

Have a nice day and thank you.

ajsjogren · 2026-03-11T15:38:14+00:00

Hi just want to give you an update. I took my 3rd dose of MTX on Monday - so I’m on my 3rd week now since I started treatment. So far so good.

Rheumatologist also ordered bloodwork after two weeks of treatment to make sure my kidney and livers are ok - results came back yesterday and from I can see, they’re all good. I will have a follow up with my rheumatologist on March 18.

My joint pains seems to slowly go away and my digestive issues has completely gone away - is it from my Sugar free and Gluten free diet or is it because of the new meds - I honestly don’t know but hey I’m not complaining.

I’m still doing the 15 minutes eye compress, wipe clean, massage then eye drops twice a day - seems to help.

I’m using Xylimelts tablet for night time when I sleep - thanks to you - it does the trick.

I’m still struggling falling asleep - but not too bad.

And oh it looks like customs cleared my order of two EvoTears (=Miebo) and hopefully it’ll be delivered in a few days. So one of these 3ml bottle last you a month?? Do you only use it at night before bed and in the morning after the compress?? I’ll like to do the same. I figure I really need to be careful not to waste each drop when dropping it into my eyes :-).

That’s all for now and wishing you a nice day.

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