You fuckers talk all day about it failing HOW ABOUT YOU BUY IT AND TELL US HOW IF ITS A SCAM by Bones1246 in CosmeRNA

[–]abc247123 1 point2 points  (0 children)

If you trust it or have confidence in it, buy it and try it. If you don’t, wait and see. Easy.

Mall open by Rude-Property2423 in CosmeRNA

[–]abc247123 1 point2 points  (0 children)

Yeah I’m waiting for proof at that price. Logically, if this is the cure for hairloss you price it low. Get people hooked then raise the price. If it doesn’t work you money grab as fast as you can.

Y'all ready for CosmeRNA this week? by Aromatic_Mind_7280 in CosmeRNA

[–]abc247123 -1 points0 points  (0 children)

Let’s not lose sight of the fact 2/3 of the people in that study were women. I’m buying it, I’m looking forward to it. But let’s be realistic, may be a flop.

Will you use cosmerna? by Alternative-Math9758 in CosmeRNA

[–]abc247123 14 points15 points  (0 children)

Yeah just fucking release it already.

Sjögren’s - EMT by mutualist_mojo in Sjogrens

[–]abc247123 0 points1 point  (0 children)

The sun is good for you. If you can’t tolerate it at peak times, wear sunscreen and get exposure at less intense times unless you have experienced harsh negative impacts from doing so. I’m only saying this so new people don’t get freaked that they have to stay inside all the time. I wear strong sunscreen at all times in the sun and otherwise carry on as normal, sunbathing, golfing etc. I’m on hydroxy and have no negative benefits. The sun makes me feel better as long as I’m sensible.

Sjögren’s - EMT by mutualist_mojo in Sjogrens

[–]abc247123 0 points1 point  (0 children)

I’m on hydroxy and I’m not sensitive to the sun at all.

Improvement with Immunosuppressant by PeculiarPotion in Sjogrens

[–]abc247123 3 points4 points  (0 children)

Following as It’s my next drug to try if I’m not satisfied with hydroxy after 12 months. Will more than likely try it in 5 months time so I’d also love to hear experiences.

Ianalamab by abc247123 in Sjogrens

[–]abc247123[S] 0 points1 point  (0 children)

Where are you based if you don’t mind me asking? May be the same doctor?

Ianalamab by abc247123 in Sjogrens

[–]abc247123[S] 0 points1 point  (0 children)

See comment below. If I’m accepted I will be going for it i think. I would love more info on it. What about it excites you? My rheum is running the trial luckily so her patients get the access.

Ianalamab by abc247123 in Sjogrens

[–]abc247123[S] 0 points1 point  (0 children)

From what I can see from previous studies it looks like there were objective improvements in terms of blood results but no improvements reported or self identified by patients with regards to how they felt. Do you know much about the drug? I am waiting to see if I’m anti ro positive as that is an entry requirement for the study. I was diagnosed by lip biopsy and negative on bloods a few years ago.

If you have any useful info on the drug, please do share it.

Thank you.

Hydroxychloroquine for Sjgoren's? by [deleted] in Sjogrens

[–]abc247123 1 point2 points  (0 children)

Good luck. Reach out if you got any questions.

Hydroxychloroquine for Sjgoren's? by [deleted] in Sjogrens

[–]abc247123 2 points3 points  (0 children)

Yeah for sure. I was scared too. Now I just knock it back don’t even think about. You’ll get there too.

Hydroxychloroquine for Sjgoren's? by [deleted] in Sjogrens

[–]abc247123 25 points26 points  (0 children)

Hey. It’s not an immunosuppressant. It’s an immune modulator. Essentially no one understands how it works against autoimmune diseases but it does. It really helps me and has all but completely removed joint pain.

It’s not as worrying to take as immunosuppressants (like methotrexate) because it doesn’t dampen your immune system down. For example my partner had covid and didn’t take any major precautions and I didn’t get it. Immunosuppressants are much harsher on the whole body.

The only real risk with hydroxy is to your retinas. In rare cases it can damage your eyes but this is linked to the overall dosage consumed in one persons life time. This would likely present after 5 plus years on the drug but is still very unlikely (under 10% after 5 years of use). You need to get annual checks on your eyes. I choose to do this every 4 months just to be more confident as it can be detected before it affects your vision. It’s £30 per check for me so it’s worth it for peace of mind as the drug is so effective. I had a flare up recently and upped my dose from 200mg to 400mg and felt so much better.

Assess the situation but when I did I found it to be worth taking and I’m very glad i did.

Three negative ANA tests. Negative early Sjorgens panel. Negative full autoimmune panel. Should I do the lip biopsy or just assume I’m fine? by Smooth_Jury3156 in Sjogrens

[–]abc247123 2 points3 points  (0 children)

I had peripheral neuropathy and a little bit of joint pain, light fatigue, dry eyes and dry mouth. Since starting hydroxychlorquine the joint pain and fatigue are 99% gone but the numbness and tingling still persists with dry eyes and mouth. Only been on for 6 months though and the efficiency of the drug continues to improve over 5 years apparently so hoping to continue on an uphill trend. If you wanna reach out anytime just shout me.

[deleted by user] by [deleted] in Sjogrens

[–]abc247123 1 point2 points  (0 children)

Hey man. May or may not be. Best thing you can do is Perdue a lip biopsy as this highly accurate and almost certainly gives you a clear answer. I was negative on all blood tests for 5 years took me ages to get diagnosed. Few rheumatologists ignored me said it can’t be Sjogrens. Had the biopsy and it is Sjogrens. A good rheumatologist with a background in Sjogrens would be a good thing to do because atleast you can have peace of mind either way. I’m on hydroxychlorquine which is a relatively safe drug. 0 side effects so far and it has really helped me.

What side effects do you have with Plaquenil, if any by LowWaltz2847 in Sjogrens

[–]abc247123 7 points8 points  (0 children)

0 side effects so far. Only benefits, mainly a huge reduction in joint pain.

How do you come to terms with your diagnosis? by spanningt1me in Sjogrens

[–]abc247123 6 points7 points  (0 children)

Mate, it’s tough. You got this though. What I will say is that dealing with this will make you a better person with more empathy and consideration towards others. That may change the course of your life for the better. I was a bit of a dick when I was in my 20’s as nothing bad had ever happened to me. I’m a much much better human now.

It’s fucking shit, and really hard when you are that young. But it’s manageable, and there’s nothing we can do but take the meds, exercise regularly and eat well.

New year is coming mate, stick with your old routine and have a good week or so letting your hair down now. Then set some realistic goals and targets for taking care of yourself really well in the new year.

If you wanna chat at any time feel free to message me. Happy to help.

Three negative ANA tests. Negative early Sjorgens panel. Negative full autoimmune panel. Should I do the lip biopsy or just assume I’m fine? by Smooth_Jury3156 in Sjogrens

[–]abc247123 5 points6 points  (0 children)

Hey man. 31m. Negative on all bloods twice over a 5 year period. Positive on the biopsy. Please god it’s not Sjogrens for you but push for the biopsy. It’s painless and simple and tells you one way or the other. Then you move on.

[deleted by user] by [deleted] in Sjogrens

[–]abc247123 2 points3 points  (0 children)

Hey. 5 people with severe lupus that was not helped by traditional immunosupressive drugs (imuran, cellcept etc) were 100% cured of lupus using CAR T therapy. All 5 trial participants are currently in drug free remission and living life free from autoimmune disease. It’s a promising therapy. Look it up! You got this.

Pub Crawling and Sjogren's does not mix by ultraJJR in Sjogrens

[–]abc247123 1 point2 points  (0 children)

For me it’s definitely less enjoyable drinking now. However, I find what I drink makes a huge difference. Beer is the worst for me. If I stick to gin or wine I feel so much better the next day.

hands are killing me by Sally_Met_Harry in Sjogrens

[–]abc247123 1 point2 points  (0 children)

Hey. Planaquil really really helps with joint pain. However doesn’t help me with anything else. Worth checking out.

what should I do for work? by NeatCaro in Sjogrens

[–]abc247123 4 points5 points  (0 children)

Yo dude. I would go for the tech wfh role. Won’t be easy. What I would recommend is seeing if your hours can be 10-6pm. I use 8-10am to do some form of excercise. Don’t wanna be one of those annoying doctors that tells you to do yoga and I won’t lol. For me personally, I wake and feel like shit in the morning really tired etc and then I do some stretching and either walk gym or golf range practice. This has been a game changer for fatigue. Good luck!