I had my loading yesterday. I've had double cataract surgery after TSW.. already in dry eye meds.
I'm just a bit anxious about eye side effects... There's a lot of posts on this.
But I'm curious ... Did anyone have zero side effects? Or no eye side effects?
I have been in a bad flare since downing my dose of cyclosporine from 200 to 150 in 8 weeks. I became stiff again and got a mini comeback version of the TSW month 1 greatest hits. Luckily no bleeding / general weeping or return of the bandages.
My dermatologist won the bet that I would flare without any back up options and I've accepted dupixent as the next best step.
I was watching some stuff about MCAS on Instagram and how someone managed their symptoms with glutamine. I have been taking quercitin regularly alongside D / other vitamins including magnesium taurate.
I had a bag of glutamine I barely used. I had ten grams / two scoops about two hours after my evening meal.
Within half hour the hot feeling in my skin disappeared. I've rapidly entered into flakey phase , healing first time in 4 wks. I thought it was placebo but read other people on Reddit saying that rapid shifts can happen if you take high doses.
I read about glutamine and how it helps right junctions in the gut and heal the lining, shifting from th2 to more th1 state.
I'm now on day 2 on oh my third dose. I have felt more mobile and comfortable in my skin...
Tl:Dr , have tsw 13 months, tapering off cyclo had a bad flare, getting Dupixent on Sunday but thought I'd try glutamine now trying to figure out if progress is placebo or not in such a short amount of time .
I'll make it brief.
1.
Find an aloe Vera leaf at a reputable Asian grocers frozen or fresh.
Learn how to process it (drain, cut, harvest the gel. Wash it again and freeze into small cubes... Melt the cube in your hands and use it repeatedly on your skin). I also add it to smoothies and drink it!
2.
The more interesting one. Arugula (Eruca sativa) seed oil. Found in Asian stores referred to in Indopak as Taramira oil. Now, when I was given this by the gentleman who gave it to me optimistically, I put it aside for a few days.
It's a very warm oil and can be stringent. After 15 minutes of a very light application.. my itchy areas are no longer itchy. The oil is apparently also antibacterial and antifungal... And it has fatty acids and all sorts of other goodness. It has a strong rocket leaf like scent but this doesn't bother me. I think it is more effective on healing skin rather than really bad flared up open skin.
I couldn't stretch my arms out because of my eczema.. since using this oil I have found my mobility has improved!
Use it sparingly and test it. Some discomfort and heat is expected. Dilute it if you prefer to start small.
Well... The title says it all. My dermatologist didn't share my optimism when I said I wanted to go cold turkey without a plan for dupixent.
1 month I am at 150mg (25mg taper every 3 wks...)
What else is there to expect?
Can I get your thoughts on this and your experience please??
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This was basically my choice. My dermatologist wanted to phase me on to dupixent but I want to come off from 200mg to 100 by September.
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My dermatologist is apprehensive but we're going in with positive minds.
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If we fail hard then I switch to methotrexate or accept dupixent after temporary ramp up of cyclosporine to 250mg.
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Important thing I learned today is that creatine / blood tests do not show kidney damage caused by cyclosporine... Only if it is in crisis. People who took cyclosporine in the 80s / 90s and ended up with kidney damage apparently didn't show any blood abnormalities until they were in crisis.
I had my left eye done about 7 days ago. Before I go further it's important to say I was very lucky to have an experienced corneal transplant surgeon perform my surgery. I was told this was a plus for me because of my astigmatism and the combined approach to correct my left eye with both incision and toric lens to get the best result.
Going by a few weeks ago when I only had my right eye done I had the following experience:
- 80% of the result was gotten by day 3. First day was full of double vision and halos.
- excellent distance and intermediate vision with a sort of natural feel. Near vision (less than 60cm... Blurred without readers. Only could see maybe 16-18pt font. Phone use and laptop use was also not comfortable without readers.
- right eye was optimised for distance
- mild astigmatism was corrected with incision
- mild hemorrhaging in the eye probably due to the block / blunt cannula anesthetic procedure.
My experience after doing my left eye which was optimised for near vision:
- the block failed with blunt cannula. As I'm atopic they couldn't snip the conjunctiva I believe they used a sharp cannula eventually but it was more painful unfortunately during anesthetic procedure. My nurse was exceptionally reassuring and kept me calm
- this resulted in more red spots in my eye after surgery... Healing with my 3 drops regime 4 / day
- day 7 post op check up: distance vision still 20/20 in left eye.. near vision one line better than the right even touching 12pt with some discomfort and squinting.
- combined effect for both eyes in the test was excellent with improvements yet to be experienced post 3+ months.
I was confused by the fact that covering my right eye did not yield great near distance capability but I'm reassured that this is not how it works. That the manufacturers for the puresee are well aware of the outcome being a combined effect especially when both eyes are done.
When I am using both my eyes to read text I can go a little bit further down to 10pts at around 30-40cm. Distance vision shoots beyond 20/20
I'm told my outcome is fantastic for being only around 30 days after my right eye and 7 days after my left.
One downside Is floaters in my right eye are much more visible if not evolved. One on particular looks like a little black fly which follows my vision. I'm told this is because of lens clarity and possibly surgery disturbing the vitreous fluid. That this may subside in a few months after my brain learns to filter it out and also as the larger chunks (fly) breaks down into smaller fragments.
Overall I'm really happy with the result. It's a massive milestone for me after running blind for 4 months. I have my independence back... I have a long upward battle with my skin and mental health but i couldn't be more grateful to my surgeon and his team for this life changing treatment .
I hope this helps someone to build confidence with the PureSee. I'm ultimately glad as a complex patient - to have not gone with multifocals and to go with my surgeons recommendations.
Few reports on news sites that as of Feb 26 hajj and Umrah visas to Saudi mandate coverage for health and it's included in the visa.
Is this correct and did you or anyone you know but health insurance? So people going for hajj have access to public health facilities in case of emergencies?
I've been recovering from TSW for 9 months+. I developed a small cataract 6 months ago during the end of the peak of the most vicious symptoms. As I came of bandages my right eye had a blip. It grew to full cataract in the centre of my eye in a matter of a few weeks. My left eye followed.
I was pretty much running blind for 4-6 months. Surgery could not be done quickly because I had ongoing flares and also dry eyes.
My surgeon and care coordinator were extremely understanding about my apprehensions. I'm 34 years old... Married, and had plenty of responsibilities before all of this happened over the use of topical steroids twice a week over just a year and a half total.
My surgeon recommended the PureSee lens given my dry eyes and complicated medical situation.
I had my surgery last Thursday for my right eye. I wanted to quickly share my experience of the lens so it might help others.
- I had a lot of double vision on day one when I snuck a peak from under the eye patch. This worried me
- day 2 I had an amazing experience seeing my family again. Being able to see intermediate and distance vision amazingly clear
- I have a small astigmatism in my right eye which was fixed using the incision method.
- I have blood shot inner eyes because a block was used to put my eye to sleep and immobilize it.
- I bought cheap readers for a few days to help me with phone use.
- day 7 is today. My vision is improving .Near vision is improving. My phone is useable at around 50-60cm distance from my face. Laptops are more useable too. I am less reliant on readers.
- I'm told that my left eye will be done with a toric lens and attuned for slightly more near vision in about a month
- weirdly enough I've not experienced dry eyes like I used to with my right eye. I'm not sure why? It might be the 3/drop/4/day routine with after care
- my floaters are far less prominent. I've obviously lost some near vision clarity but dare I say, my vision wasn't this good to begin with prior to my tsw maybe because I had astigmatism.
- I started driving again on one eye after 6 months of not being able to drive. I can read a car reg from quite a way away.
- I don't regret this lens so far and hope things will continue to get better!
The most uncomfortable part of surgery was the block and anesthetic which I know a lot of people don't get. I was given it because I was told I am young / bit anxious and more prone to eye movement during surgery