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Psoriasis agony

27 replies

Trampire · 15/11/2018 08:49

I've had psoriasis for 35 years. Both plaque and guttate.

Over the years it flares and abates. Some plaque patches last years. I cope with intensive moisturising. I had used steroids but not often,

Following a recent bout of terrible sore throat alongside lots of stress and anxiety my psoriasis has flared hugely and I'm in agony.

I have guttate all over my tummy, boobs and back. Plus larger patches of guttate.
The guttate feels like I have red ants biting me all over my body.

I wondering if anyone has tried anything I haven't. Is there anything new on the market, on prescription? Before I bother my GP.

I moisturise with a strong cream like Diprobase 2 a day. I'm taking anti-histemes that don't help the itch I'm using a spray on anti-itch cream which helps a bit.
I have old tubes of dithrocream is various strengths which have worked well in plaque patches before and I trying that (but that hurts but I'm prepared to put up with a bit of pain for gain)

I also dug up and old UV scalp lamp I used years ago this morning and have timed myself for 30 secs on each guttate section this morning (my dd had UV light treatment for guttate when she was 6 at the hospital and it worked wonders)

I'm utterly miserable and not sleeping and can't concentrate at work.

I've just ordered a moisturiser with calamine lotion and a back cream applicator.

Is there nothing I haven't thought of?

Is it worth the GP or will I just get more massive tubs of moisturiser?

Miserable.

OP posts:
Trampire · 15/11/2018 08:50

Oh and I'm also learning to meditate but I'm only 9 days I to the course.

OP posts:
Trampire · 15/11/2018 08:50

*into the course.

OP posts:
IAmcuriousyellow · 15/11/2018 08:57

You poor thing, it sounds awful. Apparently psoriasis can flare after throat infection, i think Strep is the trigger? I’m sure after 35 years youve tried everything. When I was making goats milk kefir (which really did help) i would put extra kefir into a bath and it took away the burning, and i think that just putting some goat milk into your bath would help, whether it was fermented into kefir or not. Glad youve started meditating. There’s a school of thought that says these auto immune disorders come from the gut so if you havent got into fermented foods yet you might look at that? And i am certain that stress affects what goes on in the gut too. I hope you get some relief soon, bless you.

Trampire · 15/11/2018 09:01

Thanks IAMcuriousyellow. Yes, I feel like I've tried everything but I've never tried fermented foods so thanks! I'll give anything a go.

OP posts:
Trampire · 15/11/2018 09:02

My only hope right now, is from experience the guttate will subside eventually and I'll cope. However right now I'm sooooooo desperate for some itch relief.

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MissConductUS · 15/11/2018 09:05

Have you asked your doctor about trying Humira?

www.humira.com/psoriasis/how-humira-treats-psoriasis

IAmcuriousyellow · 15/11/2018 09:07

Have a read about it, there’s loads of info online about the connections between mind and gut. Your immune system is working way too hard, thinks it needs to attack and repair, and making patches of skin cell growth where they are not necessary apparently. If you cant be bothered with home fermenting you could consider pro and pre biotics but i found kefir to work fast so i didnt need to go for the capsules, and also as I said a pint or so of kefir in your bath is very soothing. Also in desperation i have dabbed very sore patches with vinegar for instant cooling relief! Keep up with the meditation wont you because a whirling mind is not going to help you calm your system. Good luck.

Delilah1234 · 15/11/2018 09:09

Have you ever tried dovobet? Prescription only, it does contain a steroid, but also calcipotriol, which is supposed to work better than just a steroid. THe gel is quite easy to apply. Honestly if it is that bad, I would go and see your GP, and I say that as a GP.

TeddyIsaHe · 15/11/2018 09:13

Dovobet! It’ll clear it to a reasonable level within a week and only get better from there. I have horrendous psoriasis and this is the only thing that works. Not Dovonex which is similar but did nothing.

Anonanon18 · 15/11/2018 09:20

I was just coming on to say dovobet as well. From my wrist to elbow on both arms has been covered for nearly a year, it’s been sore, itchy and bleeding. I went to the docs last Tuesday and she prescribed me the dovobet gel and just over a week later there is no soreness or bleeding. It’s still a little itchy but the transformation has been amazing.

Trampire · 15/11/2018 09:25

Thanks everyone. I really appreciate the replies. I feel quite in the edge.

I haven't seen my GP about it in years because I just manage the plaques patches normally. It's the guttate that sends me over the edge!

I think I will make an appt though as I can't carry on like this.

I definitely will try the kefir.

I will ask about Humira

Dovebet gel - my Dd had this for her guttate and it's works well. She hadn't needed it in a long time do I think I'd forgotten about it! I will def ask.

Thanks.

OP posts:
Trampire · 15/11/2018 09:26

Hadn't heard about vinegar either!

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Zorayda · 15/11/2018 09:40

Another vote for Dovobet, and if you can, a long weekend with some down time.

Porridge oats in a soup muslin in the bath I found really soothing for the itch.

Antihistamines have antipruritic qualities, but you want a topical antipruritic with hydrocortisone and to ask about prescription tablets; I can't remember the name of what I was given as an in patient but it saved me from duct taping kitchen gloves to my hands to stop scratching!

Best of luck. It's a bugger Flowers

brillopants · 15/11/2018 18:52

My sister used humira, you can only use it half the year ( she chose summer so she was clear by the time shorts came around)
You can only use it for a number of years and that's your lot. But it really gave her a holiday from psoriasis which was so bad her sheets would be covered with blood.

MissConductUS · 15/11/2018 19:01

you can only use it half the year

There's no medical reason to limit its use to half the year or a certain number of years, so that's a restriction to control cost. Like other biologics it's not cheap, but when it works it really works.

www.psoriasis.org/advance/ten-year-humira-study-halfway-point

Bettertobehealthy · 16/11/2018 17:36

Hi Trampire ,

                              I wonder if you have considered the following, it may be an avenue to explore. I'm so sorry to hear of your predicament. 

                               Your mention of dovobet, the calcipotriol it contains, as well as its' effectiveness in a close genetic relative may mean that you yourself may very well respond to the Vitamin D hormone (1.25 dihydroxyD3). You may not know ,  but   calcipotriol works by triggering the vit d receptor in skin cells. It is a very close  chemical analogue.    
                A number of years ago ,  a vitamin D researcher,   Prof. Holick found that vit d hormone , when applied to the skin dramatically reduced psoriasis ,  this discovery enabled the pharma companies to develop  calcipotriol.   A great deal of investigation has been done on the relationship between Vit D , and psoriasis. It seems that Vit D can often prove to be helpful for many people.  Here is  a site which collates those researchers findings . you may find it interesting to view.    <a class="break-all" href="https://vitamindwiki.com/Psoriasis" rel="nofollow" target="_blank">vitamindwiki.com/Psoriasis</a>  

          It may be useful for you,  to enable your body , to make that hormone , naturally, so allowing your skin cells to take it up from the Vitamin D3 that diffuses through your body.  

         Most people in this country,  UK,  are  low in their vitamin D levels.  It is an essential micronutrient. It up and down regulates about 2000 of our genes. Almost every cell in our body , has a Vitamin D receptor, including skin cells. Inflammation and immune system function are known to be responsive to Vit D hormone.   It may well be advantageous for you to ensure you have enough, i.e. a sufficient level. In the UK ,we are likely to have levels around  30  to  70. these blood levels are much below  those that prevailed , throughout our evolutionary history. That would be  120  - 140  nmol/L   

     Human physiology is such that whenever our blood levels are below 100 , then Vit D3 ,  from sunlight on our skin or from our food is rapidly converted to a form ( 25hydroxyD3) that is not so readily available to most of our cells. However when our blood level exceeds 100 , then  Vit D3 is much more available to be converted to Vit D hormone ( 1,25 dihydroxyD3) for other cells , including skin cells. 

    Perhaps   this may be a rather convoluted way of saying that if you had a "good"  level of vitamin D3  , then you may well improve your situation.   The "good" level that you require will be over 100 ,  preferably at least 120 - 140  nmol/L . 

   If you maintain that blood level, then your skin cells will have it available to them, if they require it. i.e. if an individual skin cell needs vit D to switch a gene on or off , it will be there.  Vitamin D  becomes a nuclear seco-steroid hormone .   

   The levels I am suggesting  are to be found in humans , living an old fashioned lifestyle, i.e. outdoors in sunshine quite a bit. Here in the UK,   we can't manage that ,   its too cold .. !  Also sunlight is too weak for 6 months of the year to make vitamin D in our skin.  Our  only real option is to supplement ,  or  use a sunbed with some UVB  .   Not as powerful as the UV treatment lamps that are used in  hospitals for psoriasis etc. 

  IF  you were considering this Vitamin D enhancement option , as I am suggesting,  then you could either ask your doctor to measure your vitamin D level,   OR you could get a  home test from this  NHS lab. It is probably the biggest Vit D lab in the country. IF the test is not doctor ordered they do charge £29 unfortunately.  <a class="break-all" href="http://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>
When you have obtained a figure from the test ,  lets say  50 ,   then in order to raise your vitamin D level,  you most likely will need ongoing daily supplementation of  1000 IU  in order to raise your blood level by  each 25 nmol/L  .    If your level was 50 ,  then by taking  3000 IU  per day , ongoing , as a daily supplementation , you  could raise your level to roughly 120 -125.   we all  have different responses. You may be more , you may be less...       have a further vitamin D  blood test  after approximately 3 months , when your blood level will have stabilised , on any particular daily dose.  Then adjust your dose , if necessary to keep it around the 120 - 140 mark.    After quite a few months , your body will have the parent compound Vit  D3 available to your psoriatic cells , you may very well find things improve.    Whilst there is no guarantee...  it is probably worth trying and may very well do what you want. 
                  Vitamin D is very cheap to buy , and is generally a very safe supplement.    Try and get a pure form of Vitamin D3 , preferably in an oil based capsule. Often available online,  or indeed from your doctor ...if he is supportive.  Daily supplementation is much the most  preferable, weekly high doses or even monthly bolus doses , are not as useful.         

                  I have posted quite a bit about vit D on here on Mumsnet,   have a look at those threads for a lot more information . OR , get back to me if you need any other info.  

      Phew...   a long post ...  

                                     maybe it will be helpful to you. 

Best of luck
BTBH

PS. 120 to 140 is considered to be within the normal band of vitamin D levels by our NHS. Commonly they will say that from 50 to 180 is acceptable. To be around 50 or even below , is not a good place to be.

jenthehen · 16/11/2018 17:47

watching with interest as mine has flared up too. I don't even know if it is guttate or plaque, how can you tell the difference? (My gp has never said). I'm also curious if any of you suffer with vitiligo as I have now developed vitiligo in the patches where I have psoriasis so can't benefit from sun exposure :( its a horrid thing.

Randomname28 · 16/11/2018 17:51

You would not be given Humira as you need to try lower treatments first. Go to your gp and ask for an urgent referral to dermatology and they can describe different treatments with you. Depending on the severity, you will most likely try an immunosuppressant first for eg methotrexate or cyclosporine.

Op Flowers I’ve had guttae and plaque psoriasis for years it’s absokurelt agony. Keep going with the creams and cling film up as well to keep your skin well moisturised

mrsdolittle · 16/11/2018 19:13

You poor thing. I had dreadful psoriasis from infancy until my mid twenties. Was treated as an inpatient in dermatology wards on several occasions - pretty grim (particularly as I was a child on adult wards - don't think that would happen nowadays). Finally I had a course of PUVA (psoralen plus UVA). About three times a week over several months. It completely cleared my skin (and I had a cracking tan!) and 25 years on the psoriasis has never come back. I still have scalp psoriasis but that is manageable. I'm not sure PUVA is suitable for everyone but might be worth pursuing.

Trampire · 19/11/2018 08:23

Thank you again for all the responses. There's lots to think about and plenty to try that I haven't as yet.

Bettertobehealthy thanks for all the info on Vit D, I will certainly bring this up with my GP when I have an appointment.

Mrs Doolittle my dd had UV light treatment three times a week for 4 months when she was 6. It worked a treat on her for guttate. She's 13 now and apart from one or two small spots she's not had another flare up yet.
The hospital were great - it took nearly 12 months to access though. From GP, to dermatology nurse to eventually seeing a senior dermatologist. Dermatologist took one look at her and ordered the treatment immediately. So quick!

I'm not feeling in quite so much agony today. I've been moisturising intensely with emollient. I've also been using an old UV 'scalp' comb of my dd's for 30 seconds on each area affected by guttate for the last 4 days.
At night I've been smothering myself in a calamine cream. This seems to have taken a bit of the 'sting' away.
Yesterday I noticed that some of the smaller spots on my boobs are a less red and a tiny bit smoother.

I have an appointment with the GP next week.

Out of interest I'm attaching a pic I took of my back (that's hard to see myself!). To me, this looks less 'red' than spots in the front.

OP posts:
Trampire · 19/11/2018 08:32

Sorry pics didn't attach properly

I had to take new ones. The flash has washed out a lot of the spots. It does actually look better than it did a few days ago! (It won't let me upload an old pic).

Psoriasis agony
Psoriasis agony
OP posts:
PurpleWithRed · 19/11/2018 08:37

Another suggestion of Chuckling Goat Kefir products www.chucklinggoat.co.uk - they do wonders for my husband's guts which leads me to believe the whole biome thing may be worth pursuing.

Trampire · 19/11/2018 08:42

Thanks purple. Yes, I came across that site when Kafir was mentioned earlier. I keep meaning to call them for advice before I buy a 28 day course - just to make sure I'm ordering the right thing.

OP posts:
sollyfromsurrey · 19/11/2018 15:00

A 'potent' topical steroid like Dovobet is much better than weaker ones like Eumovate. i have some guttate post strep. It's been around 3 months. Some of the patches disappeared with the use of patent steroid cream but some are still there. Last time the only thing that finally got rid of it was a Series of treatment in the hospital UV booth. I've had Bowen's disease since then so I can't do it this time. It's much better than the domestic lamps.

timeisnotaline · 19/11/2018 15:09

I agree with daivobet and consider asking for a course of uv. I’m not sure your scalp lamp is ideal , I have had numerous narrow band uvb courses, getting a suitably restricted wave length is much safer skin cancer wise and more effective per energy applied. (I have had chronic plaque which manifests like guttate over my whole body for 25 years)

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