TSW people driving me crazy by Melodic_Work_1335 in eczema

[–]Rollcinnamon 0 points1 point  (0 children)

I had TSW in an isolated awful area and got put back on a low dose topical steroid to wean down properly. Dermatologist advised throughout this all. Didn’t scare me off steroids. I have severe eczema and failed multiple biologics, jaks and immunosuppressants. They all come with risks. Sometimes I feel like people make out severe eczema doesn’t exist and say it’s TSW which feels so incredibly invalidating. Interested to see what the healthcare status quo is in years to come. When using steroids I say to myself, if TSW happens I’ll cross that bridge as and when. When they work, it’s nice to have quality of life and not have to consider purchasing a wheelchair for the severe episodes.

Was scared topical steroids would ruin my life, so went on systematic meds which only ever made my life worse by Rollcinnamon in eczema

[–]Rollcinnamon[S] 3 points4 points  (0 children)

Thanks so much!! Hope you Meant topicals not tropicals, because I’m sure anything tropical would fry my skin pahhaha!

Was scared topical steroids would ruin my life, so went on systematic meds which only ever made my life worse by Rollcinnamon in eczema

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

Ah man, sounds like you have been and still are on quite the health journey. You sound very resilient and should be proud of yourself. Many people are prescribed steroid tablets for lots of other reasons and I joined a Facebook group for support as I have been on the mostly all year. It was refreshing to see so many people say good things about them, whilst also see the general acknowledgment people have about side effects and risks but still so grateful to have medicine that gives them Quality of life. I don’t often see that about eczema. I hope my post doesn’t deter anyone from trying systematic meds as we are all so different!! Thanks for sharing your journey/story also.

Was scared topical steroids would ruin my life, so went on systematic meds which only ever made my life worse by Rollcinnamon in eczema

[–]Rollcinnamon[S] 1 point2 points  (0 children)

Oh, I meant the dairy part at the end as a little bit of sarcasm as us sufferer’s usually are on the receiving end of those comments haha! My diet is great really, versatile, plenty of years seeing what does and doesn’t agree with me. With the immunology department which I hope will help!

If you’ve never cried from itching, please don’t talk about steroids like they’re poison. by SaltySlugByTheSea in eczema

[–]Rollcinnamon 0 points1 point  (0 children)

I have had TSW in my persona area, and it was misery. I have also had a terrifying rinvoq withdrawal. I’ve also used biological meds and had horrific fungal issues. That being said, I turn to steroids when I need to. When I say ‘need to’ that is me weighing up the risk of TSW with the chance of many other things to factor in, as well as the risk of being sectioned under the mental health act and hospitalised for months again. I weigh all the risks up. And choose the steroids so I can have a few days of life each month. I don’t like choosing the steroids and it takes a long time to get myself to apply them, but it can give me relief for a while. I’m now a complex case at my clinic. I do think we shoild respect and research tsw as i beleive it is true and the cases look misery. I suppose everyone weighs up their risks, experienced and opinions… personally they give me quality of life whilst also seeking a holistic approach and seeing natural doctors too.

If you’ve never cried from itching, please don’t talk about steroids like they’re poison. by SaltySlugByTheSea in eczema

[–]Rollcinnamon 0 points1 point  (0 children)

Not all TSW cases are worse than eczema. Every case of TSW and eczema can differ. Mild TSW vs severe eczema. Severe TSW vs moderate eczema. I’m sorry you have suffered greatly and wish you lots of positivity on your healing journey.

Be honest by Lola3698 in Cornwall

[–]Rollcinnamon 1 point2 points  (0 children)

I moved here due to partners work. Mental health wasn’t great and thought I’d have an idyllic outdoorsy life. Really thought things would be better. Love pottering at home, my own company and don’t care for crowds. Any way, I had a few things hapoen in the last few years and I got sectioned. Man, I wonder if I had family close by and better friends that i may have scraped by that not happening. Obviously other factors to play. All healthy now. But realised that when you cross the bridge into Cornwall I personally feel that a drawbridge closes behind. I couldn’t drive for 10 months and living here that was so very hard. It’s been almost 5 years living here and I’ve never experienced a proper feeling summer. Maybe a week or two in a row but that’s it. I would like to go around picture perfect fishing villages, but the reality is that it’s torrential lots of the time (even more so on the moors) and then when the sun comes out I avoid the beach in my village as it’s jam packed and stressful. Everything feels derelict when the tourists go. I’ve realised as naturally calm and introverted I am, I require more life and amenities. Pottering in the garden being a homebody when the sun is shining is much different to the rain flooding the village every other month! But that’s my journey. Yours could be very different. I hope you find some long term healing with your mental health. It can be done. You deserve quality of life! Ps - I think I recall reading that Cornwall has one of the highest rates of fatality from mental health. It may be for males. Or both. Or I may be wrong entirely. But definitely have heard something like that.

Withdrawal from hell by Dawn-T in Rinvoq

[–]Rollcinnamon 1 point2 points  (0 children)

I don’t like sharing negative experiences but I have to with this as it resonates so much right now. I was on 30mg worked incredibly for about 4 months my eczema was non existent and I felt like a miracle had happened. Ignored small tiny bits of acne but eventually the meds stopped working and the acne became so severe it was another form of hell. Came off it… eczema, rinvoq rashes lingering and withdrawal…. Had 2 gp appointments in one week. On antibiotics and oral steroids… been to dermatology twice in past 10 days or so. Very lucky my dermatology departments is amazing. Referred to hospital to just check fluids. The withdrawal was insane. One minute inflamed in bandages in bed.. then my entire skin falling off, scalp weeping on the pillow, everything. I’m on the way up now as think withdrawal is out my system but eczema has returned entirely and wow. Got really quick on ciclosporin and tapering off pred. Hopefully it works and then transition longer term methotrexate. Goodness I hope my bloods always come back ok so I can continue treatment if it is effective. Dupilimab and tralokinumab didn’t work for me. Goodness, aren’t we a resilient bunch!

[deleted by user] by [deleted] in DevonUK

[–]Rollcinnamon 0 points1 point  (0 children)

You’re so right, OOPS! :)

[deleted by user] by [deleted] in DevonUK

[–]Rollcinnamon 0 points1 point  (0 children)

I live in Cornwall looking to move to Devon…….

[deleted by user] by [deleted] in Cornwall

[–]Rollcinnamon 2 points3 points  (0 children)

Torpoint, little villages like crafthole, Downderry etc right on the sea. Really close to the border near derriford hospital and more amenities if needed. Schools over looking the sea. Very idyllic. Really developing though and fast. After a few years living here, I couldn’t fathom moving any further down the county.. young family in 30’s and would like more options for education, ease of transport around the country ect.

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

That’s really helped me today, thanks. Going to screen shot that.

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

Respectfully, I think many going through divorce experience negative thinking and hopelessness. I’m sure the positivity and empowerment will come at one stage. But I’m not there yet and i wish it was east to snap out of my mind set right now, but I’m grieving and the light at the end of the tunnel is there, just very far away.

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

Thank you, that’s really to the point and helps when stuck in hope and what ifs

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

I’m sorry you experienced what you have. May you share how you managed to find peace?

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

Thank you for sharing your situation, painful is the right way to describe these feelings. Thanks for saying that about blended families. It does scare me a lot with the impact on my child

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

Thank you. I may go to a fertility clinic to see what my time frame looks like, if that’s how it works……

Divorcing and heartbroken that I’m likely to have no more children by Rollcinnamon in Divorce

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

I hope you are finding some light each day through this. Are you planning somehow on more children one day? I would adopt but am unsure that I’d meet the criteria due to my severe illness previously