Psoriasis

don corleone

Hi all
Long time sufferer here. Only thing that ever worked for me is UV treatment only to be back to square 1 as soon as I stopped it.  Can anyone shed some info on how I might go for biological injection treatment? What are the issues involved? Is the cost high? what are the different options?

Thanks in advance

mighty magpie

Hi Guys

I have rented a standup sun bed for 5 weeks with a view to an extension before my wedding.

My history is that i've had 2 sessions of UVB treatment in hospital over the last 6 year. The first time i reacted quite well to the treatment and the psoriasis stayed away for a long time. 2nd time wasn't as good but it helped.

I do tan but if I don't moisturise enough I can itch quite a bit.

Just looking for some help on what I can use to help me make the most out of the sunbed rental. Should i be using indoor tanning oil for when i use the bed or will a post tanning mosituriser or aloe vera be sufficient?

Thanks,
MM

will56

My wife suffers from Psoriasis and always found sun holidays cleared it up nicely.

With the lack of of a sunny climate in the midlands we looked at alternatives including sunbeds for her.

Last year she started taking Vit d Capsules and within a couple weeks it cleared completely and stayed gone.

One capsule per day and her psoriasis is well under control

LegacyUser

Sorion cream works wonders for all my family who have it.

brevity

don corleone wrote: »

Hi all
Long time sufferer here. Only thing that ever worked for me is UV treatment only to be back to square 1 as soon as I stopped it.  Can anyone shed some info on how I might go for biological injection treatment? What are the issues involved? Is the cost high? what are the different options?

Thanks in advance

As far as I'm aware you need to go to a dermatologist and they will prescribe the biological injection.

You will need to get your bloods checked for any infections. This can take about 2 weeks. Once they are clear then the treatment can start. Some options depend on your lifestyle. One dermatologist offered a treatment that meant I couldn't start a family for two years and 2 forms of contraception had to be used for any sexy time.
That didn't work for me so he gave me Humira which worked but has side effects such as a lower immune system.

I'm paying 140€ per month via the drug payment scheme

rizzee

Coming up to a year after my 2nd round of light treatment and i'm still 95% clear, presuming it came back due to a large tattoo on my arm.

Plaster myself in Silcocks Base before a shower and also use it as shaving cream. Elave sensitive baby shampoo too. Seems to be doing the job and has kept it steady over the Winter months so far.

Touching spots with Dovobet the every 2nd day but i'm at the stage where it's doing nothing. Will take a break from it for a week or two and try again.

echo beach

Cost of medication under the Drug Payment Scheme is now €134 a month from January 1st so some saving for anyone on the biologics.

don corleone

Thanks for your replies.

I didnt realize there was immune side affects with Humira. How successful is it?

brevity

don corleone wrote: »

Thanks for your replies.

I didnt realize there was immune side affects with Humira. How successful is it?

Night and day.

I had it everywhere and it was so itchy and irritated. I had tried absolutely everything with mixed results. It's the only thing that's worked for me.

daithimac

Anyone able to recommend a good Dermitologist or GP who is experienced with Psoriasis?
My current GP basically says keep rubbing dermbate on it however while it is light now it seems to be spreading.

Dubl07

daithimac wrote: »

Anyone able to recommend a good Dermitologist or GP who is experienced with Psoriasis?
My current GP basically says keep rubbing dermbate on it however while it is light now it seems to be spreading.

What part of the country are you in? Professor Brian Kirby (St Vincent's) is excellent, Dr Rupert Barry (St James's) is good too but I only saw him once.

Gael23

don corleone wrote: »

Hi all
Long time sufferer here. Only thing that ever worked for me is UV treatment only to be back to square 1 as soon as I stopped it.  Can anyone shed some info on how I might go for biological injection treatment? What are the issues involved? Is the cost high? what are the different options?

Thanks in advance

You need to see a Dermatologist but there are other medications I think a Dermatologist might try before Biologics as they are so expensive. Im on Enbrel 2 years now and it has changed my life. Side effects can be different for everyone, I find I suffer a lot more with colds and sinus problems but nothing I cant live with.

daithimac wrote: »

Anyone able to recommend a good Dermitologist or GP who is experienced with Psoriasis?
My current GP basically says keep rubbing dermbate on it however while it is light now it seems to be spreading.

I was fortunate that at the point my Psoriasis went out of control I had a brilliant GP but really there is only so far a GP can go as regards treatment. I got referred to Brian Kirby and have never looked back. Before I met him I had learned to simplyl ive with my Psoriasis but he put me on treatment that actually works for the first time ever.

DickSwiveller

I suffered terribly from psoriasis during secondary school, widespread on hands and feet. I had to leave school twice a week to undergo UV treatment in Tallaght hospital. It didn't clear it up. As soon as I finished secondary school it cleared up completely. I'm convinced the stress I endured in school (I just hated school) was the cause. The psoriasis flared up again during my final year in University - a very stressful time. I'm now 27 and completely clear.

My advice to anyone suffering from skin condition would be to refrain from eating any sugary foods/drinking minerals. Plenty of exercise and a good nights sleep are also important. I think external factors play a much bigger part in many chronic diseases than many people think.

Mountainsandh

I was diagnosed with Psoriatic Arthritis last Thursday, at last.
I reckon I have it about 10 years now really, at first I didn't quite join the dots on all the flares/pains I was getting, and then when the penny dropped I just let it drag and adjusted my lifestyle rather than go get treatment.
Anyway, the balance between side effects and benefits of treatment has gradually tilted, so I'm starting on Methotrexate tomorrow.
The skin is not too bad at the moment, and tbh I couldn't care less about it, but I am excited about maybe being able to spend a pain free summer, and being able to do lots of things that I gradually gave up on.

I'm a bit nervous about it and any advice or experience will be welcome. I'm taking 6 tablets on Mondays and Folic Acid on the Friday, but I work Monday, Tuesday and Wednesday so depending on side effects I might just slide the Mtx to Wednesday evening instead so I wouldn't have to go to work in a state (if that happens).

Anyone here was inconvenienced for work with side effects, or were you just able to plough on regardless ?

huskerdu

Good luck with the methotrexate. Ive been on it for years. I had to come off it for a few months last year and my symptoms really disimproved so its good to know it is making a difference.

When I started taking it first, I got nausea the day after taking it. Not bad enough to take a day off work, but I would feel rotten for most of the day. This improved over time. I think it eased off gradually over about 3-4 months.

Now, I get no side effects at all except that I still get a bit of nausea if I take Mtx without food.

I know two other other people on it, and they get no side effects either.

Dont be down-heartened if you get side effects. They are worst for the first few months. It will improve. Hopefully, it wont be too bad for you in the long term.

waxmoth

In my opinion the issue with current conventional treatment of autoimmune conditions such as psoriasis, autoimmune arthritis etc is there is no emphasis on stopping or reducing inflammation using nutritional intervention or science based herbal treatments. ‘First do no harm’ should mean the use of a baseline diet eliminating all the common inflammatory triggers and promoting anti-inflammatory gut bacteria. At the very least this will reduce damage and slow progression or reduce drug requirement.
Methotrexate targets the enzyme Dihydrofolate reductase but so too do plant polyphenols EGCG and ECG (Green tea) and Quercetin (various). Quercetin has also been shown in animal models to have a nephroprotective effect when used with methotrexate. One small clinical trial in Iran demonstrated anti-inflammatory benefit of Quercetin in rheumatoid arthritis.

brevity

I'd imagine a lot of people here have tried the diet option with little or no success. I think probiotics may be successful but I haven't tried them. I've certainly tried a number of options before settling on Humira.

At the end of the day, the doctors will prescribe medication that they know works or is more likely to work. Diet has been known to work but there isn't enough evidence.

Mountainsandh

I tried probiotics off my own bat for maybe 6 months, a cocktail, and the more expensive afloral or some such name for Crohns sufferers. No difference to psoriasis and arthritis.

waxmoth

Speaking about autoimmune in general, medication may work to alleviate symptoms and doctors are working within their remit but often it may actually be making the underlying condition worse. Long term NSAIDS are a common first step in some areas of rheumatology and a proton pump inhibitor will frequently be added to protect the stomach. This has the potential to cause further damage to the gut microbiome which is a critical component of immune system control. There are simple herbal/dietary alternatives to NSAIDS and proton pump inhibitors so the precautionary principle should apply at that stage of the illness (as symptoms allow), particularly as NSAIDS seem to have no disease modifying function. What is lacking is a holistic approach and a medical professional that understands and can advise on all aspects. An anti-inflammatory diet makes sense, if only as a potential drug sparer, so that information should be available/offered at some stage early in the process.

Gael23

Sunshine gives good relief but we don’t get much of that. Otherwise only medication works for me. I’ve tried so many things that just do nothing or work for a very short time. Nobody wants to be on long term medication but I feel I have no other options left.

Mountainsandh

waxmoth wrote: »

Speaking about autoimmune in general, medication may work to alleviate symptoms and doctors are working within their remit but often it may actually be making the underlying condition worse. Long term NSAIDS are a common first step in some areas of rheumatology and a proton pump inhibitor will frequently be added to protect the stomach. This has the potential to cause further damage to the gut microbiome which is a critical component of immune system control. There are simple herbal/dietary alternatives to NSAIDS and proton pump inhibitors so the precautionary principle should apply at that stage of the illness (as symptoms allow), particularly as NSAIDS seem to have no disease modifying function. What is lacking is a holistic approach and a medical professional that understands and can advise on all aspects. An anti-inflammatory diet makes sense, if only as a potential drug sparer, so that information should be available/offered at some stage early in the process.

You don't seem to grasp how real and severe the symptoms are for PsA. I'm all for trying herbal anti inflammatory teas and concoctions and I would guess pretty much every person who suffers from the skin or PsA a while has explored herbal and dietary options and knows their inflammatory triggers.
Now I'm typing this from my bed while rolling my feet and waiting until my body unlocks a bit so I can walk to the bathroom, and will probably need to lie in a bath for 15 min to relieve the pain so I can face the day. I'm going to need NSaids today. I rarely ever drink, have had no trigger foods in ages. It just happens. I doubt you have a quick sage tea, yoghurt and turmeric solution that will work the same as Nurofen to send me to work this morning.

Mountainsandh

Gael23 wrote: »

Sunshine gives good relief but we don’t get much of that. Otherwise only medication works for me. I’ve tried so many things that just do nothing or work for a very short time. Nobody wants to be on long term medication but I feel I have no other options left.

Same here, it has taken me a long time to come to this point where I'm willing to face potential side effects for some actual improvement to my lifestyle, I'm sorry for the grumpiness other poster, days and days of pain and many disillusions precede my bitter post.

waxmoth

Sorry, did not mean to cause upset.

I am only interested in safe science based alternatives. Turmeric in the form of curcumin (the active ingredient) is one of these and is a natural TNFa inhibitor but the dose used is much higher than normal supplementation recommendations. Omega 3 has been shown to have an NSAID sparing effect but there seems to be a period of accumulation needed and the doses are higher than general usage as with curcumin.

Gael23

waxmoth wrote: »

Sorry, did not mean to cause upset.

I am only interested in safe science based alternatives. Turmeric in the form of curcumin (the active ingredient) is one of these and is a natural TNFa inhibitor but the dose used is much higher than normal supplementation recommendations. Omega 3 has been shown to have an NSAID sparing effect but there seems to be a period of accumulation needed and the doses are higher than general usage as with curcumin.

I’m sure we would all like to be doing that and many have tried but in my experience those “alternatives” are just useless. I have tried almost everything out there and only pharmaceutical drugs work. Was on steroid creams for 10 years and now on anti TNF injections which have given me my life back.

Dubl07

waxmoth wrote: »

Sorry, did not mean to cause upset.

I am only interested in safe science based alternatives. Turmeric in the form of curcumin (the active ingredient) is one of these and is a natural TNFa inhibitor but the dose used is much higher than normal supplementation recommendations. Omega 3 has been shown to have an NSAID sparing effect but there seems to be a period of accumulation needed and the doses are higher than general usage as with curcumin.

Please be careful about recommending curcumin as a medication.
Whole turmeric has anti-inflammatory effects, especially when its bioavailabity is magnified by making 'golden paste' with black pepper and a fat. Curcumin is currently viewed by some as the active ingredient but there are other molecules/substances in the whole root/spice that interact with it. Curcumin by itself without any of the lesser-researched compounds in the turmeric root has significant negatives, particularly for the liver. Curcumin can also be dangerous during pregnancy.

brevity

Yea, just because something is "natural" doesn't mean it's safe.

Gremlinertia

Just a reminder, if seeking alternatives always consult with your GP or specialist, some substances don't mix and can negate efficacy or even cause harm

Mountainsandh

waxmoth wrote: »

Sorry, did not mean to cause upset.

I am only interested in safe science based alternatives. Turmeric in the form of curcumin (the active ingredient) is one of these and is a natural TNFa inhibitor but the dose used is much higher than normal supplementation recommendations. Omega 3 has been shown to have an NSAID sparing effect but there seems to be a period of accumulation needed and the doses are higher than general usage as with curcumin.

Sorry I was abrupt Waxmoth, not a nice welcome to boards I'm afraid
Early morning is my worst time of the day as I'm in pain.

Like Dubl07 and Brevity, I am a bit cynical about natural alternatives.

waxmoth

Mountainsandh wrote: »

Sorry I was abrupt Waxmoth, not a nice welcome to boards I'm afraid
Early morning is my worst time of the day as I'm in pain.

..

No worries, I understand.

Dubl07 wrote: »

Please be careful about recommending curcumin as a medication.
Whole turmeric has anti-inflammatory effects, especially when its bioavailabity is magnified by making 'golden paste' with black pepper and a fat. Curcumin is currently viewed by some as the active ingredient but there are other molecules/substances in the whole root/spice that interact with it. Curcumin by itself without any of the lesser-researched compounds in the turmeric root has significant negatives, particularly for the liver. Curcumin can also be dangerous during pregnancy.

The intention is not to recommend. Everyone is unique and it is up to a medical professional to determine particular circumstances and protocols.

Curcumin is very widely studied including many clinical trials, has been shown to be safe at all doses used and its anti-inflammatory properties are well documented. As I am using it I would be interested in reading about the significant negatives. It is contraindicated for people with gallstones but there are quite a few papers showing liver protective properties.

Mountainsandh

huskerdu wrote: »

Dont be down-heartened if you get side effects. They are worst for the first few months. It will improve. Hopefully, it wont be too bad for you in the long term.

I have been taking it for 4 weeks now and it's good to re-read your note above today. I'm a bit down and annoyed as I had to take the day off work and get my husband to drive me to the GP, for just a headache and diffuse tiredness/fatigue, light headedness, just generally unable to concentrate or face the day. I hate having to take a day off, and for fatigue it just feels ridiculous. My bloods say I'm anemic so there could be a bit of that, but also I had high blood pressure, which is the first time ever I am found to have high blood pressure.

The GP wants to monitor the HBP 24 hrs but that's not possible for another 3 weeks, but other than that she couldn't pinpoint if it was the PsA, Mtx, or anemia that was causing the fatigue (I still have PsA pains), so really other than taking an iron supplement there's nothing much else to be done.
I can't change the day I'm taking the Mtx because she said that's the day all docs in Ireland prescribe Mtx, so they all know exactly when you took it in case of accident or whatever.

Other than extreme tiredness occasionally I haven't had side effects, just mouth sores week 2 and they went away after a few days.

I really hope the fatigue is a side effect that will wear off in time, the whole idea is to reduce the impact PsA has on my life, including at work.

Anyone found they had high blood pressure after starting Mtx ? Could be an unrelated, once off episode, I hope it is.