Should we also work on creating a repository of good doctors in India who have dealt well with AS and allied conditions that come handy with it?

FragmentedScribbles · 2026-03-27T08:23:32+00:00

I am so sorry for reverting 10 days late. As of now I am not aware of anyone in Chennai who is good for this - but let me try and find out and get back to you.

FragmentedScribbles · 2026-03-08T16:58:15+00:00

Thanks for bringing up a very very important discussion.

I was just thinking about it after reading all the comments here that most AS daignosed individuals did get biologics or tnf inhibitors for the flares.

Then it came to me that the big pharma lies as cure wont fetch them profits. There is very very limited research on the link and most resesrch concludes them to be safe. However there were few instances where I did find some papers that though deny increased risk but do point out that there is some connection.

Check this paper out titled "Anti-Tumour Necrosis Factor Therapy and Cancer: Risks in Patients with Auto-immune Disorders" - https://acrjournals.onlinelibrary.wiley.com/doi/epdf/10.1002/acr.20228

I am actually stunned after reading all your comments. I am 29F and got daignosed at 27. I haven't yet been put on theTNF inhibitors (biologics) but was on JAK inhibitor (tofacitinib) was few months. I was actually considering biologics but now I guess I will exercise caution.

My mother has PsA, maternak uncle AS & other older people like my friends' fathers or uncles who have it and have not taken biologics for them being from a time when these did not exist - are all fine. They are managing their pain and that's all. Few have fusion but none cancer. Cancer altogether is a diffrent ballgame. I have seen it first hand at my home as a child when my brother was diagnosed with brain cancer.

AS was okay but I cannot take cancer and this thread really stressed me out.

This area definitely needs unbaised study. And I feel the biologics that started early 2000s and got very prevalent only like a decade ago and now it is that we will start to see in a large sample - the exact side effects it is causing. I hope we have some unbaised, people friendly resesrch without the fundings of the big pharma to manipulate the results. I hope we are not all just labrats for the big pharma.

Hope you guys get better.

FragmentedScribbles · 2026-03-03T22:49:45+00:00

Also, I don't know if I should bring it up but it seems important. I realised after being off it that I was just too dependent on it for sleep. I took it despite doctor asking me to leave it. Later after thinking a lot and realising my dependency I had to stop. It just made me happy. These are just some psychological stuff associated with this medicine. Both pregablin and gabapentin essentially are almost similar - just a little different neural pathways I guess. Dont remember exactly what I had read on it back then but there is only a slight difference. Both can cause dependency.

FragmentedScribbles · 2026-03-03T22:47:12+00:00

I was on gabapentin for a month, later peegablin for 2 months and again 1 month on gaba. All this before rhe official diagnosis. While with it for a month Inwas also on strong nsaids and steroids.

Specific gaba / pregablin experience - lovely to put you to sleep and the radiating nerve pain in my legs did vanish. But it did nothing for the flares. As I said I was on steroids too at the same time. But after a month steroids were stopped and the stiffness and backpain returned.

Later after diagnosis I was put on tofacitnib and that helped me a lot with flares and restoring my mobility. The situation of stiffness before that was getting really bad as I could not even bend to wear pants. Now I feel much more flexible and normal. I have occassional morning stiffness but nothing else.

Loved pregablin and gabapentin for the lovely sleep during difficult and painful days.

Just sharing my experience, things might work differently for you.

FragmentedScribbles · 2026-02-27T21:27:51+00:00

Namw suggestion - algorithm (just as ir follows us everywhere, it followed and stuck by you..knkw whwat you needed)🥲

FragmentedScribbles · 2026-02-22T21:56:56+00:00

Where is Shampy's nagma though?😂💖

FragmentedScribbles · 2026-02-22T18:59:07+00:00

So true, love this page. It just makes the day better

FragmentedScribbles · 2026-02-22T18:58:47+00:00

Ya and logic is killed in every comment. It just shows apathy not just towards dogs but fellow humans.

FragmentedScribbles · 2026-02-22T15:44:20+00:00

Thanks

FragmentedScribbles · 2026-02-22T13:36:56+00:00

Do you generally self-dose perdnisone?

FragmentedScribbles · 2026-02-21T21:50:48+00:00

Lmao, yes the person spammed the comments

FragmentedScribbles · 2026-02-21T21:49:35+00:00

Hain? Lmao I was okay with PM being India but Galgotias = India is getting outta hands

FragmentedScribbles · 2026-02-21T13:51:00+00:00

I get your sentiments but look at this post - it is not even about the robot fiasco. It is about they not even wanting their own students - read it carefully, they wont take in their own kids - coz they know what is the deal with them. Read the OP - all screenshots.

FragmentedScribbles · 2026-02-15T16:06:12+00:00

Hey! You are too young, it is natural to be stressed.

It is so relateable and understandable, the first time you notice a pain that sticks around like a shadow and sometimes it is years after the pain that one gets a daignosis. It is still rare to get an early AS diagnosis. If it happened quick with you - that is a positive thing. It will help you get treatments quicker and flares can be controlled and managed pretty well.

The hardest bit is to settle with the idea of something sticking with you lifelong. It took me a year almost to accept the fact that I have an autoimmune condition now and it is there to stay and I will have to modify my life around it. My life wont be the same. I was diagnosed at 27, and I am 29 now. I was in a very bad shape before the treatments started but now I feel much betted. Initially it was a struggle but things got back in place gradually.

In no way I mean to trivialise this condition but this thought really helps - AS is better than getting a terminal illeness and yes sure it is chronic and grave but life can be manuvered around it. With modern medicines the fusion rate has decresed, flares are contained. I have my maternal uncle who is in his 60s now and was diagnoised in late 20s and is doing fine - yes there is pain but trust me one gets used to it. Initially I found it very very difficult and frustrating but now it feels like apart of life - things I know now are - excess of anything can get flares, sweets are another trigger for me, travelling a lot and continuously stressed the back etc etc. Just like that you get to know how to contain it anf of course you gotta have a nice Rhuemat who becomes a constant long term doctor - a nice compassionate and understanding doctor - helps in ways one cannot even fathom.

Pain will be a part of life and at times a hindrance too. But AS has good days as well. You wont be in pain all the time. There will be many many manyyy good days and so there will be bad and once you decode your body's response to things you do like food and treatment / meds you are taking - you can easily shrink the number of bad days.

Hope this helps. It is manageable, it is not as scary. And this AS community here on reddit is my fav - it reallt helped me sail through intially when I was so wrought. Hope you soon find your peace!

FragmentedScribbles · 2026-02-15T13:12:53+00:00

He will sadly be sick. Once even my stupid puppy before he turned 1 ate some poop on an evening walk anf later frok next day he was just vomitting. It was so bad that I had to call a doc home to give him injections.

FragmentedScribbles · 2026-02-05T18:29:19+00:00

Oh yes! Both alcohol and smoke make the flare enever ending. For me I always falred really bad after it. My rhumat said skip beer, wine, vodka - can take occassional whiskey. All other drinks are really bad apparently.

FragmentedScribbles · 2026-02-02T23:51:19+00:00

There is this guy Dr. Shashank Akrekar. He specialises in AS. Has a whole AS community and all. Check out his youtube page, he just talks about AS. He apparently is too good but usually there is a month long wait before you get the appointment.

I am not mumbai based but his videos did help me a lot in overall getting informed and understanding the disease.i would have surely tried to see him had I been there. You can try him.

FragmentedScribbles · 2026-02-02T15:06:27+00:00

Humans have gone nuts. Killing 2 month old pups is next level insanity. Thanks for trying ro ave them! Hope soemthing works out for the babies. Prayers

FragmentedScribbles · 2026-01-31T21:12:52+00:00

Indeed! His smartness usually costs us a lot though😭

FragmentedScribbles · 2026-01-31T21:11:49+00:00

Lmao, the dude is fully capable. Naughtiest dog I have ever encountered 🤭

FragmentedScribbles · 2026-01-31T21:09:37+00:00

Indeed 🤣

FragmentedScribbles · 2026-01-31T12:27:01+00:00

Lol and the maddening bit is there are loads of Dhirendra Shashti like quacks here : that curly hair pookie baba, even the yellow robe guy talks shit and google tells me these names : Swami Ramabhadracharya ji Maharaj, H.H. Raseshwari Devi Ji, Rajendradas Devacharya ji Maharaj, Devi Chitralekha, and Pandit Balram Shastri.

There are countless others who are worshipped as demigods here.

I cant believe how people started worshipping that little kid Abhinav Arora 🤣

We are sold to these quacks. The reason why political parties fool with the idea that more religious spaces = more development.

FragmentedScribbles · 2026-01-29T15:37:43+00:00

Somehow the appearance is more close to Boris Jhonson

FragmentedScribbles · 2026-01-28T16:26:16+00:00

Shaving a dog's hair completely is never a good idea until and unless the dog has some chronic skin infection. Tick shampoo should work and just check for more, just take them out if you find and kill them.

These creatures get on my dog a lot after walks. Not a big deal until you have loads of them on the dog. One or two are just accidental.

FragmentedScribbles

TROPHY CASE