Do you have an(other) autoimmune disease?

[gll]

I will look in to the QV products. I'm currently using a generic of Doublebase and it's okay but probably not the best for the winter months.

Was recommended the QV wash and creams on the psoriasis (uk) forums, picked up the smallest bottles that I could from boots (was still around £7-8 each ish and had to ask at the pharmacy counter) and gave it a go for a month.

Armed with visible proof that it helped (ie my calmer face), asked the doctor for it on script which was given without issues. The GP was genuinely interested as its not something she jumps to for prescribing but said she has some other patients it might help when other things haven't really.

Speaking of, need to go do my skincare routine before I rip my face to shreds 😉

 

[TwilightMidna]

Was recommended the QV wash and creams on the psoriasis (uk) forums, picked up the smallest bottles that I could from boots (was still around £7-8 each ish and had to ask at the pharmacy counter) and gave it a go for a month.

Armed with visible proof that it helped (ie my calmer face), asked the doctor for it on script which was given without issues. The GP was genuinely interested as its not something she jumps to for prescribing but said she has some other patients it might help when other things haven't really.

Speaking of, need to go do my skincare routine before I rip my face to shreds 😉

Sounds like you have a good doctor there! I love it when they take our experiences into account. I’ll let you know if I give the QV stuff a go! I have seen ads for them online but not sure I’ve ever seen them in store (I guess them being at the pharmacy counter explains that one). Hope your face is feeling a bit more comfortable now!

 

[nonethewiser]

Have EPI which is linked to type 1 diabetes.

 

[SimonP]

Thank you so much for sharing, both your experiences and the photo. The alopecia must have been such a shock! I have heard a few people with alopecia say that they wish they had just shaved their head sooner. It's a big deal though and I'm sure there's lots of emotions involved.

Yeah, not much fun (though nothing like as hard as it would be for a woman I imagine), but once it was all gone it was much better, though still took some getting used to looking in the mirror, etc.

Also hats, lots of hats, cold head, sun burned head, hitting head on things (like under the car) - amazing how useful hair is.

On the plus side, I don't need shampoo nor do I need a barber/hairdresser (though annoyingly I'd just got the hang of DIY hair cutting during lockdown, and now my skill is withering on the vine - my two little girls still don't think I should be trusted attacking their hair with clippers..... 😉)

 

[kellie01]

Gosh don't we all cope with a lot! Is there any treatment for vitiligo? I remember reading your posts here after you had just been in the hospital with your LADA. You have been through so much x

HI, no treatment for vitiligo, had one doctor say to me " you can't see it in the winter so what you worried about ? " yeah just what you want to hear. It isn't too bad if u stay out of the sun as is only noticeable when you have a suntan x

 

[MrPixels]

I have had several bouts of psoriasis since I was a child, ie it would flare up, hang around for a few weeks, then clear up. I would then be clear for 3 or 4 years before the same thing happened again. This cycle repeated itself right up until my 30s but while I still always have patches on my elbows and on one knee, and in my scalp (I hate that one because people think it's dandruff) I haven't had another bout of full-blown psoriasis since 1982. I still get prescriptions for Betnovate. So far, thankfully, no signs of psoriatic arthritis.

A GP i saw prescribed Dovonex on one occasion, and I found that much better than Betnovate, so much so that I have less flare ups than I used to have, but that may also be weight related. I found when i was swimming & exercising regularly my psoriasis reduces somewhat..

 

[PattiEvans]

Yeah, not much fun (though nothing like as hard as it would be for a woman I imagine), but once it was all gone it was much better, though still took some getting used to looking

We apparently have something else in common Simon. I clip mine very very short and wear a wig. Most people don’t realise, though my friends know. I have no eyebrows and minimal lashes... and really no body hair. When we met I didn’t realise you had it, so many chaps have shaved heads.

 

[Mumpie_olgran]

I was diagnosed with Hashimoto's in 2021 (underactive thyroid) and then type 1 in Jan this year. While being treated for DKA my liver also showed up some pretty funny outputs (ALT in the 900s) so they weren't and frankly still aren't sure about whether there could be something autoimmune on the liver. Current best guess is that the liver was reacting to the DKA but they're still exploring to see whether something with the liver could have tripped me into the T1

Keep you posted as I learn more

 

[Martin.A]

I found when i was swimming & exercising regularly my psoriasis reduces somewhat..

That's interesting. Mine's better than it used to be and it was just over a year ago, after our new leisure centre and swimming pool opened, that I started swimming twice a week.

 

[Martin.A]

HI, no treatment for vitiligo, had one doctor say to me " you can't see it in the winter so what you worried about ? " yeah just what you want to hear. It isn't too bad if u stay out of the sun as is only noticeable when you have a suntan x

I developed vitiligo in my early 20s and after a few years the patches around my chin were so obvious that I grew a beard to cover them up. I shaved that off in 2001 because it had gradually become a mix of grey and white whilst my hair was still dark. To my surprise the vitiligo on my chin was nowhere to be seen and still isn't.

I still have some patches on the back of my hands and one forearm but even they are not as widespread or as glaringly obvious as in the past. Pleased to see, but since there's no treatment or cure, a complete mystery.

 

[TwilightMidna]

Have EPI which is linked to type 1 diabetes.

I had not heard of EPI either! Do you have to take that Creon that I see mentioned here sometimes?

 

[TwilightMidna]

HI, no treatment for vitiligo, had one doctor say to me " you can't see it in the winter so what you worried about ? " yeah just what you want to hear. It isn't too bad if u stay out of the sun as is only noticeable when you have a suntan x

So many doctors seem to have missed the empathise with your patient lecture during their training ugh. Hugs!! X

 

[TwilightMidna]

I was diagnosed with Hashimoto's in 2021 (underactive thyroid) and then type 1 in Jan this year. While being treated for DKA my liver also showed up some pretty funny outputs (ALT in the 900s) so they weren't and frankly still aren't sure about whether there could be something autoimmune on the liver. Current best guess is that the liver was reacting to the DKA but they're still exploring to see whether something with the liver could have tripped me into the T1

Keep you posted as I learn more

That’s a lot to go through in a pretty short space of time. I’m one of the lucky ones who was diagnosed before I got to DKA territory. It sounds so scary. I hope you can get whatever’s going on with your liver figured out. Please do keep us updated and thank you for sharing!

 

[nonethewiser]

I had not heard of EPI either! Do you have to take that Creon that I see mentioned here sometimes?

That's right I do, with each meal or snacks, admittedly don't always take Creon for snacks but seem to get away with it.

Got diagnosed with EPI about 6 years back, it's sometimes referred to as PEI but it's all same condition.

 

[MrPixels]

That's interesting. Mine's better than it used to be and it was just over a year ago, after our new leisure centre and swimming pool opened, that I started swimming twice a week.

Yes, when I first noticed it several years back it was because I was losing weight around my middle, often wondered whether being at risk Fatty Liver disease may be implicated in any way... Regular exercise has definitely reduced issues my GP was higtlighting with regard to my liver function after my blood tests.

 

[SimonP]

We apparently have something else in common Simon. I clip mine very very short and wear a wig. Most people don’t realise, though my friends know. I have no eyebrows and minimal lashes... and really no body hair. When we met I didn’t realise you had it, so many chaps have shaved heads.

And I didn't realise either! 🙂

 

[100cas]

Oh I can so relate to that fear of going back to the days of really bad symptoms. I think it's a good idea to chat with your GP about your knee, even if it's just for some peace of mind. Hoping the call goes well today and that your knee calms down soon. It's horrible knowing how bad these things can get. My arthritis is actually pretty good at the moment. The methotrexate has made such a difference for me, but this year the arthritis has been particularly (and abnormally) well-behaved. I have a theory that my immune system got distracted by my pancreas and more or less forgot about my joints/tendons for a while. My fingers have started swelling a bit again with the weather chopping and changing, but my pain and fatigue levels have been really good. I've probably jinxed them now haha! If you don't mind, let me know how your call goes? Only if you want to, of course. You can message me if you would rather not write here x

That’s great to hear that the methotrexate it working so well work you, long may it continue! I found methotrexate very good overall, I stopped taking it to try a new medication (hydroxychloroquine) as you can’t try for a family on methotrexate (which id like to do in the next few years) but when I stopped taking it my symptoms did come back! Until now (ish)

Call with the GP went ok, they ultimately asked me what I wanted them to do, so they are referring me back to rheumatology and also doing bloods next week (will get all my diabetes bloods tests re done too which is good) so I was happy with the outcome.

 

[TwilightMidna]

That’s great to hear that the methotrexate it working so well work you, long may it continue! I found methotrexate very good overall, I stopped taking it to try a new medication (hydroxychloroquine) as you can’t try for a family on methotrexate (which id like to do in the next few years) but when I stopped taking it my symptoms did come back! Until now (ish)

Call with the GP went ok, they ultimately asked me what I wanted them to do, so they are referring me back to rheumatology and also doing bloods next week (will get all my diabetes bloods tests re done too which is good) so I was happy with the outcome.

Ah yes I think lots of people stop the mtx due to wanting children. I should make my mind up about that sometime soon as the biological clock is ticking haha. I’m glad you mostly had a good experience whilst you were on it though. You hear some horror stories don’t you. That does sound like the best outcome from the GP call - it’ll be good to get evaluated by rheumatology and if it is a flare hopefully you’ll have caught it early. Keep me posted if you can x