Got So Much to Do, but...

[SarzWix]

I'm SO tired
Sorry chaps, don't usually dump, but I'm feeling so rubbish, I could really do with a Virtual Hug

I've had really bad psoriasis on my hands for about 12 months now, and nothing the docs have prescribed have really touched it. So a few weeks ago they prescribed some tablets which are fairly new (I think) - they needed 2 consultants to prescribe them! - called Acitretin, which are a retinoid (?). They are obviously fairly powerful stuff as you aren't allowed to get pregnant while taking them, or for 2 years after stopping them. Not a problem as I don't have 'baby equipment' anymore anyway. And they do seem to be working - my hands have improved loads already.
But, they do seem to be having a weird side effect of triggering all my HMS symptoms, big-stylie I'm really tired all the time, my ankles have become really unstable again and I've got knee, hip & back pain again, my head doesn't seem to know where my feet are (proprioception) and I've fallen over 5 times in the last 2 weeks... So fed up.

Been back to the docs, but they have no idea why it's setting off the HMS, the only relevant side effect mentioned in the trials data is "joint pain", but they don't know why it causes joint-pain So it seems like my choice is putting up with my hands falling apart, or put up with my body falling apart! Rock/hard place. I'm just desperately hoping that the 'side-effects' wear off soon....

[shirlthegirl43]

Lots of virtual hugs being sent as I type. Hope it all balances out soon. Olive oil is a wonderful natural medicine - have you tried rubbing that on your skin to see if it helps?

[SarzWix]

Thanks Shirley
Yeah, Olive Oil, Mango Butter, Cocoa Butter, Shea Butter, Comfrey, Lavender, Chamomile... Tried loads o stuff!

[zazen999]

What about your diet? I couldn't have dairy for 10 years [a long long time], because I'd come out red all over.

[piskieinboots]

gawd blimey hun - you poor babe (((((hugs)))))

[Headfry]

What about aloe vera? though best ask Doc first perhaps.

A huge hug and lots of kind wishes for you from me, I just wish so hard that I could magic it all better, sadly I lack the skill of magical powers!

HF
x

[jackie j]

Hope you start to feel better soon. Hugs

[SarzWix]

What about your diet? I couldn't have dairy for 10 years [a long long time], because I'd come out red all over.

Tried eliminating stuff, but they're pretty sure it was triggered by stress - it came on after my mum died and Dad had to have major op for cancer. It's a type of psoriasis notoriously difficult to shift anyway. Apparently a type of UV treatment is often used, but I'd have to drive 20 miles twice a week to get the treatment

Thanks Piskie hun, I really need em

[markinessex]

I used to have psoriasis, tried everything, all the smelly stuff too. But I found a product called M-Folia, and after about 5-6 months of using it, it cleared about 90% of it, and now (fingers crossed, touch wood) I am 100% clear.

Not sure if I am allowed to put a link to the website I got it from, I will drop you a Private message, if you are interested, let me know.

Big hug from someone who knows how rotten it can be.
Mark

[di]

I'd say try taking it easy..but as you have a family I know too well that's easier said than done!!How long have you been on the tabs?Some side effects only last for the initial few weeks?Fingers crossed for you it all works out.(a friend of mine used to really suffer~moving to a sunny country cured hers!!!~maybe a couple of weeks somewhere hot could be in order!!Call it therapy!!)
Anyway,Fairy hugs to you((()))& hope you're feeling better soon!

[moggssue]

Ooo Sarz, so sorry to hear you're suffering hon. Cant offer any suggestions, just lots of virtual (((((((((((hugs)))))))))))).

Hope the side effects wear off soon, or you find an alternative solution.

[FionaH]

My friend had psoriasis and almost totally cleared it by eating walnuts, Honest! Apparently it works well for excsma too.

[Flummery]

Oooh poor lass. No wonder you're feeling rubbish. Big hugs for MOM.

[Seahorse]

Really sorry to hear you're having such a rough time Sarah. It does seem very unfair that something that makes one thing better, makes another thing worse!

Sending lots of hugs and hoping things are brighter soon.

[smallblueplanet]

I do hope you sort out your treatment soon, it does seem pointless to 'cure' one thing whilst causing another! The list of side-effects from acitretin on the psoriasis help site list quite a few of your symptoms...

Psoriasis Help Organisation - Online Psoriasis Forum - ACITRETIN

What are the side effects and contra-indications?

As with all systemics, there is a long list of possible side effects Similarly, some people suffer no effects, others a few on the list and a few unlucky people cannot tolerate it at all

Common side effects include:

· Peeling, dry, itchy, scaling, cracked, blistered, sticky or infected skin
· brittle or weak fingernails and toenails
· dandruff
· sunburn
· abnormal skin odour
· excessive sweating
· hair loss
· changes in hair texture
· dry eyes
· loss of eyebrows or eyelashes
· hot flashes or flushing
· weak nails
· chapped or swollen lips
· swollen or bleeding gums
· excessive saliva
· tongue pain, swelling, or blistering
· mouth swelling or blisters
· stomach pain
· diarrhea
· increased appetite
· difficulty falling or staying asleep
· sinus infection
· runny nose
· dry nose
· nosebleed
· joint pain

Acitretin can cause low blood sugar (hypoglycemia) even in patients who are not diabetic.....Acitretin can also cause high blood sugar (hyperglycemia)....

What level dosage are you on? Maybe its too high? Have you joined or searched any self-help groups? I always think that they often have a greater 'total' of knowledge about their own specifics than certainly GPs, and often consultants, do - but then I'm no great believer in western/nhs medicine.

Sounds like you hit the jackpot?!

Take good care of yourself.