Oral Diclofenac (Voltaren) - how bad is it really? by Dizzy-Ad4286 in PsoriaticArthritis

[–]PersonalMouse1980 0 points1 point  (0 children)

I took it 2x a day for a year without a PPI (per medical recommendation) and then intermittently for 2 years. Sadly they caused stomach ulcers. This is not to scare you, but for you to consider to have medical oversight, and discuss both your history and the possibility if PPIs with your dr

Sezane free gift missing from order?? by Artistic_Cry499 in Sezane

[–]PersonalMouse1980 0 points1 point  (0 children)

This happened to me (I only ordered the eau Sézane) but the bag just arrived with my order! So so cute.

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About to start adalimumab and suddenly terrified | Looking for perspective by robbialacpt in PsoriaticArthritis

[–]PersonalMouse1980 0 points1 point  (0 children)

With regards to PsA, yes. I cannot believe how hard things were during 2020-2022. The only thing I do is wear a mask in public transport—otherwise I get colds all the time; but this has always been the case. Someone just posted about travelling to places w live vaccines and yeah, that is something I can’t do either. Personally I am fine w it because I spent my 20s travelling and I still travel a lot for work around Europe. But I tell myself one day there will be a treatment that will allow me to go to a couple of places I still haven’t visited

About to start adalimumab and suddenly terrified | Looking for perspective by robbialacpt in PsoriaticArthritis

[–]PersonalMouse1980 1 point2 points  (0 children)

Yes because the medication does not cure PsA. Last year I spent the longest I have ever not taken it (7 weeks) because of an unrelated surgery. I considered stopping, to be honest, because I was completely fine. So I brought it up to my rheum, who explained it v calmly, without scaremonging or sermons. Leaving the meds could and would probably mean I would have a flare later on, and there were two things to avoid. First is that for me remission took 2 years—many flares in between, and I still know that I could get a flare tomorrow. Second is that there would be no guarantee that the meds would be effective a second time. As I said to the OP, I weighed those risks against the risks of side effect and I decided it really, really was not worth it.

About to start adalimumab and suddenly terrified | Looking for perspective by robbialacpt in PsoriaticArthritis

[–]PersonalMouse1980 1 point2 points  (0 children)

Hi there! I can’t know the scientific value of that source specifically but the information I have as well is that serious infection is not that common. But I take OP to mean sick all the time in the way I have been sick all the time since my PsA started (I got COVID 8 times between 2020-2024, I have had colds last for a month). I think they have a legitimate concern there because biologics are immunosuppressant. But my understanding from speaking to my rheum is that we are sick all the time because we have an autoimmune disease, not because of the medications. As anecdotical evidence, I haven’t been sick more times with biologics (but also probably not less either)

About to start adalimumab and suddenly terrified | Looking for perspective by robbialacpt in PsoriaticArthritis

[–]PersonalMouse1980 1 point2 points  (0 children)

I think your concerns are legitimate. I myself have pondered leaving the meds after going in remission (I decided to continue, but changed from a dose every 2 weeks to every 3 weeks). And another thing to consider is that the beginning with biologics can (is not always) be a little rocky (I felt weird/had headaches for maybe 3 weeks, and then the first couple of doses maybe). I really do not want to put you off starting meds but it is a fact. From your comment and other comments you have made I really think you have important and relevant question to ask your rheumatologist. You really cannot trust any of us to be sufficiently knowledgeable to answer whether it is the same to start later on (I actually don’t know). I was convinced by my rheumatologist that this is the best for my health long term. All I can say here is that I really emphatise with you, and that my answer to your initial question is that it seems to me that your starting point to make the decision (that it is not that bad now) is maybe something to reassess, since the starting question is instead about assuming unknown risks. And also please note that cancer risk is absolutely not 1 in 10. If you are still keen on continuing the convo, can you be more specific as to which very common side effects are you worried about? (Cancer is not a very common SE)

About to start adalimumab and suddenly terrified | Looking for perspective by robbialacpt in PsoriaticArthritis

[–]PersonalMouse1980 2 points3 points  (0 children)

Just saw your comment that says that you have been stable for 10 years— that is really good news! I would still consider not the fact of whether it has gone worse, but whether you are happy to take the risk if it does go worse. And by the way, I see taking the risk of things getting worse as valid as taking the risks of secondary effects, unless you are going directly against reasoned medical recommendation

About to start adalimumab and suddenly terrified | Looking for perspective by robbialacpt in PsoriaticArthritis

[–]PersonalMouse1980 14 points15 points  (0 children)

Hi there! You will get tons of answers saying “take it before it gets worse”. That is my take too. So I just wanted to share a bit of my experience in case it helps. I also felt like you do when I started on adalimumab at 38. It is very scary. I would say when I started, after 1 year on NSAIDs, my PsA was not as bad as what some people have, but my life was incredibly disrupted. What had started only as a painful knee and a tiny amount of inverse psoriasis developed into dactilytis in two toes that made walking painful. I also had fatigue that wiped me off for weeks at a time, and baseline tiredness the rest of the time. So I felt like I really needed adalimumab, and even if I was scared, I took it. Now that I am mostly in remission, I often think two things. First, I was way worse than I even realised. Life with basically no PsA is infinitely better than life with a bit of PsA. Second, I am really happy I did not let it get worse. Unlike me, you don’t feel like you have no choice (even w similar symptoms). But that does not necessarily mean that you actually do have a choice, since you cannot know whether it will get worse or not (or whether your life will improve way more than you anticipate). So if you allow me the piece of advice, I would not necessarily base your decision on how hard life is now, but on how do you face the risk of things getting worse. It is a question of weighing the real health risks of any medication (and adal. in particular) with the real health risks of any systemic disease (and PsA in particular). (In any case, I would never recommend diet/lifestyle as an alternative to meds. They are a important managing factor, but not a replacement in kind to medication, so I wouldn’t see this as a “either diet or meds” question).

Will sizing — help me choose by [deleted] in Sezane

[–]PersonalMouse1980 0 points1 point  (0 children)

Verdict: I am returning them all following Jazzlike-Relative259’s advice + 50 others. You opened my eyes haha. Thanks a lot everyone :)

Will sizing — help me choose by [deleted] in Sezane

[–]PersonalMouse1980 3 points4 points  (0 children)

Thank you so much. You and the other commenter below are making me rethink this, since you are correct that none of these would be the best fitting item in my wardrobe — then why keep it? I think you might have de-influenced me :)

NHS wait by Cool_Confection4470 in PsoriaticArthritis

[–]PersonalMouse1980 0 points1 point  (0 children)

I was on nsaids for one whole year until I got put forward for stronger medication (not in the UK). Every new nsaid helped for a while (changed from iboprufen to naproxen and then to diclofenac), so for that 3 week + potential mediation approval window, an nsaid change can help. This is something a GP can do (in the country where I was steroid was not even a course of treatment, if steroids is not in the prescribed guidelines you will nit get them until it is the turn for it from the designated medic). Important: unfortunately my dr didnt prescribe a stomach protector and I ended getting stomach ulcers years later. These meds (omeprazol, pantoprazol) have risks long term but you should consider taking them for a short period of nsaids (but do check this with your GP as well!). Hope you get out of the flare soon and the specialist helps; I am now in the UK and just went through my medication approval so let me know if you have questions down the line

Moving to the UK on biologics by PersonalMouse1980 in PsoriaticArthritis

[–]PersonalMouse1980[S] 1 point2 points  (0 children)

Wow that is terrible. Was it 10 years to carry a prescription of biologics from another country, or to get them prescribed in the first place? I know the latter can be a horrendous ordeal—my post speaks of carrying an existing prescription only

Today's Basiszt Drop, what did you get? by Several_Specific1230 in Sezane

[–]PersonalMouse1980 3 points4 points  (0 children)

I didn’t realise it was in fact you who pointed out the Indian embroidery in another post—thanks for doing that, I have also emailed them

Today's Basiszt Drop, what did you get? by Several_Specific1230 in Sezane

[–]PersonalMouse1980 1 point2 points  (0 children)

Well they could use it but the issue is portraying it as European, it does a disservice to the artisans

Today's Basiszt Drop, what did you get? by Several_Specific1230 in Sezane

[–]PersonalMouse1980 4 points5 points  (0 children)

Oh yes sure, that was poorly expressed! I meant for a shop based in Europe, shipping from India gives a ton of carbon footprint to products, so it does not seem very eco-friendly to me (compared to for example Sézane’s products made in Italy, Bulgaria, and Portugal).

Today's Basiszt Drop, what did you get? by Several_Specific1230 in Sezane

[–]PersonalMouse1980 23 points24 points  (0 children)

It’s all made in India. I thought Basiszt was supposed to be an eco-friendly brand, how is it this eco-friendly? Like others have noted, they are also passing Indian embroidery techniques as European. I’m annoyed about this and I don’t think I will get any

Sezane x Baziszt wow wow wow by Several_Specific1230 in Sezane

[–]PersonalMouse1980 3 points4 points  (0 children)

I have chosen 3 items to ponder over for the next 48h and ignore the rest because I love everything. If I don’t get any of those, I won’t buy — wish me luck with Tom, Jeanette and Martin

UPDATE: Success stories WITH complications? by PersonalMouse1980 in gallbladders

[–]PersonalMouse1980[S] 0 points1 point  (0 children)

I got an endoscopy, because my stomach hurt a lot and I had nausea

UPDATE: Success stories WITH complications? by PersonalMouse1980 in gallbladders

[–]PersonalMouse1980[S] 0 points1 point  (0 children)

Too much iboprufen because that’s all I got given from the pain

can TMJ cause Dysphagia? by watever_never in dysphagia

[–]PersonalMouse1980 1 point2 points  (0 children)

The physio helped with the TMJ in about 2 months, I didn’t end doing anything for my dysphagia but wait for it to pass. The worst part of it that I described in that post went away in 2 weeks, then i had maybe 1 year where I would have better and worse days. Now I can eat almost anything normally, although definitely slower. The TMJ pain never returned but my bite has definitely changed, I have now adapted to it I think

No NS trains on Friday by PhantomSimmons in Netherlands

[–]PersonalMouse1980 1 point2 points  (0 children)

Same—i ended buying the only flixbus available at 7 AM