Health advice

Campervanannie

Full Member

Messages
6,023
Health advice

I'm not one for coming on forums and discussing ill health but I was diagnosed with Rhumatoid Arthritisin 2002 after 4/5 of problems with joints now 15 years later after lots of knee draining and steroid injections and 4/5 different drugs self injections and the rest I finally am on a drug called retuximab it's given introvienously every 6 months which is great and made a massive difference to my life. I have now been diagnosed with psoriatic arthritis and psoriasis the latter is the one I am struggling with I have just had a course of penicillin as one of the scaly things on my an le split and I got an infection that is now cleared up but I cannot seem to keep the scaley things under control I have been prescribed betnovate cream and something called Dovobet gel I am not a depressive type person and am usually very upbeat about my ongoing illnesses but this psoriasis is really getting to me at the moment they want to send me for some sort of light treatment every 4 days for 6 weeks and the side effects on your skin and body do not make for great reading.
So my question is to fellow psoriasis sufferers what do you use has anyone had this light treatment have you found something out of the ordinary that helps your I don't fancy the light treatment it says going out in the sun whe having this treatment can make you red and burn very easily and can have a lasting effect on how your skin reacts to the sun. Hope this doesn't come across as whining because I'm not I'm just a little fed up and frustrated.
 
You're never the least bit whiney Annie... someone might just have some useful tips. I sorry I can't help but hope others come up with good ideas.
I did have a quick Google and found one tip again and again that you won't want to hear... it's recommended to avoid alcohol. I'll duck and run now... :Flushed_Face_Emoji:
 
Sorry to hear about your health problems. I googled about a bit and of course there is conflicting advice about, hope that someone in here can help with some advice from personal experience. It does seem that Jenny's advice is good though ?
 
3A46DC86-9DDA-4C96-A5A8-2E9361284E22.jpeg

This is is part of what I am dealing with it’s scary and it’s embarrasing and it’s depressing but I’ll just have to cope with it.
 

Attachments

  • B511C727-1D06-4335-BC27-D529CCCFE7FA.jpeg
    B511C727-1D06-4335-BC27-D529CCCFE7FA.jpeg
    2.1 MB · Views: 0
  • CAC5507A-5F7D-4C1D-8933-20665E094E9B.jpeg
    CAC5507A-5F7D-4C1D-8933-20665E094E9B.jpeg
    242.7 KB · Views: 0
Looks like Rot to me :Tears_of_Joy_Emoji:
On the positive side there won't be a lot of you left to dispose of when the time comes so you should get it cheaper :Waving_Hand_Sign_Em
 
Banned member;n25509 said:
Looks like Rot to me :Tears_of_Joy_Emoji:
On the positive side there won't be a lot of you left to dispose of when the time comes so you should get it cheaper :Waving_Hand_Sign_Em

That cheered me up no end Charlie do you think it's that Alabama rot thing and I've caught it off Princess Taya lol.
 
Campervanannie;n25504 said:
This is is part of what I am dealing with it’s scary and it’s embarrasing and it’s depressing but I’ll just have to cope with it.

I know it must be scary but no need to be embarrassed. Psoriasis can happen to anyone and it's not you, it's something that's happening to you. People can shy away from visible things like this but it's not catching and it's most definitely not your fault. I wish I had a magic wand...

To be honest Annie, it's the last thing anyone would notice about you anyway... that big, brash, bright and funny personality would get in the way for sure :Hugging_Face_Emoji:
 
Hi Annie, this is from my wife.

Speaking from experience, and looking at the photos, my psoriasis was worse so can sympathise.

The light treatment worked very well and went about normally taking care not to sit about in the sun.

The actual treatment is 30 seconds initially then two or three days increased to 1 minute eventually up to 10 minutes over the course.

This involves standing in exactly the same position in the box scuddy bare and parts that have been missed before can get burned but Eumovate and moisturiser keeps it OK.

No results for 3-4 weeks but at end of treatment Psoriasis is gone except under scalp hair but still use Dovobet on head.

Relief at end of treatment was immense and only small patches on elbows which are tolerable.

Treatment was over 4 years ago

As the course was over a six week period, it was a bit of a pain to go back and forth to hospital involving a 30mile round trip but well worth while.

Cheers,
Alan



 
exmusso;n25522 said:
Hi Annie, this is from my wife.

Speaking from experience, and looking at the photos, my psoriasis was worse so can sympathise.

The light treatment worked very well and went about normally taking care not to sit about in the sun.

The actual treatment is 30 seconds initially then two or three days increased to 1 minute eventually up to 10 minutes over the course.

This involves standing in exactly the same position in the box scuddy bare and parts that have been missed before can get burned but Eumovate and moisturiser keeps it OK.

No results for 3-4 weeks but at end of treatment Psoriasis is gone except under scalp hair but still use Dovobet on head.

Relief at end of treatment was immense and only small patches on elbows which are tolerable.

Treatment was over 4 years ago

As the course was over a six week period, it was a bit of a pain to go back and forth to hospital involving a 30mile round trip but well worth while.

Cheers,
Alan

Thanyou for that information I will look into it more as they have made me an appointment to at the department that deals with it
 
Last edited:
I have been reading about your problem and can't help in any way other than hope you find something which helps.
I know you'll manage to find something which will help best of luck.
 
Lee;n25543 said:
I have been reading about your problem and can't help in any way other than hope you find something which helps.
I know you'll manage to find something which will help best of luck.

Cheers Lee I am sure I will get on top of it I going to paddle in the sea when I get to Scotland that will help the psoriasis on my ankles hopefully.
 
Campervanannie;n25550 said:
Cheers Lee I am sure I will get on top of it I going to paddle in the sea when I get to Scotland that will help the psoriasis on my ankles hopefully.

Annie try taking fish oil vitamin D milk thistle aloe Vera Oregon grape,and evening primrose oil is supposed to help ease psoriasis. Use a humidifier and avoid fragrance ie soap perfume, eat healthy eliminating red meat and fatty snacks,cold water fish,seeds nuts and omega-3 fatty acids are known for their ability to reduce inflammation, olive oil may soothe when applied to your skin,soak in a lukewarm bath with Epsom salts, mineral oil milk or olive oil can soothe itching and moisturise immediately after your bath,and reduce stress avoid alcohol, also try turmeric 1.5 to 3.0 grams a day, avoid smoking, I’m sure you’ll find something that eases your psoriasis and they also say the light treatment works too.
 
Campervanannie;n25550 said:
Cheers Lee I am sure I will get on top of it I going to paddle in the sea when I get to Scotland that will help the psoriasis on my ankles hopefully.

I'm glad you're going to Scotland, I would have been surprised if you didn't. Perhaps try some of the diet suggestions along side you're medication and see how it goes.
BUT most of all keep Phil under supervision with his diet.
Have a great trip.
 
Lee;n25611 said:
I'm glad you're going to Scotland, I would have been surprised if you didn't. Perhaps try some of the diet suggestions along side you're medication and see how it goes.
BUT most of all keep Phil under supervision with his diet.
Have a great trip.

Yes I think a daily carb check in Heidi the Hymer lol , yes just me, Phil, Tez, Keeley and Chalkie for the first week then Tez and Keeley are going home so it will just be 3 of us although Hipster may join us looking forward to it.
 
Sounds great as long as Phil can put up with living under the microscope.
Make sure you've got plenty of gas it may fall below -4c.
 
Turmeric and black pepper tablets are supposed to be good to help the immune system but allow at least 8 weeks before giving up on them if nothing happens. Another thing my friend suggested is one a day of those little pots that help boost the immune system via gut bacteria, Actimel etc - some supermarkets do their own.
Hope you soon see an improvement.
 
Caz;n25885 said:
Turmeric and black pepper tablets are supposed to be good to help the immune system but allow at least 8 weeks before giving up on them if nothing happens. Another thing my friend suggested is one a day of those little pots that help boost the immune system via gut bacteria, Actimel etc - some supermarkets do their own.
Hope you soon see an improvement.

I do have to be careful with immune system as I am on Retuximab which is an immune supresant so no point in me taking something to boost my immune system which is probably why I have suddenly developed psoriasis as my system cannot fight it.
 

Users who viewed this discussion (Total:0)

Back
Top