Psoriasis

ibarelycare

Irishchick wrote: »

Does anyone here have psoratic arthritis? My gp thinks I may have it but rheumatologist is still undecided. I dont have psoriasis ( had one or 2 patches when I was younger) but my mother and brother have it

Yes I have it. Was diagnosed with it about 5/6 years ago. Have it in my knees, and in one finger.

I'm on Methotrexate and Humira for it. For the most part my arthritis has been manageable. Mx has also been good at keeping my psoriasis under control over the past few years, but my dosage was decreased at my last visit with my consultant in December 2014. Since then, my psoriasis has flared up and my knees have deteriorated. I got my doctor to send me a new prescription last month to put my Mx dosage back up to what it had been before. I'm really hoping I see results soon!

mocha please!

Are you still on the sunbeds ibc? How are they working out for you?

ibarelycare

mocha please! wrote: »

Are you still on the sunbeds ibc? How are they working out for you?

No I actually haven't gone back since my first time. I moved house recently and I just haven't looked to see if there is anywhere around me! Going to look into that now.

ibarelycare

So both my skin and pain in my knees has been improving a lot over the past week. I'm really hoping this isn't just one of those short-term improvements before things go downhill again cos that's happened a lot in the past 6 months! There are various reasons that could be the cause for the improvement:

1. I mentioned that my doctor increased my dosage of Methotrexate. I took the increased dose for the first time last week (it's just taken once a week). Usually it can take 3-4 weeks to see a difference but maybe it's working quicker this time

2. I got a bike last week and started cycling to work. Well today is only day 4 of cycling (went for a spin on Sunday too) but I think it's already helping my knees, and improving my mood overall.

3. My stress levels have drastically improved over the past month. For the first time in about a year I'm not feeling overwhelmed in work, I'm very organised and on top of everything. Again, this is helping with my overall mood.

4. This probably seems a little far-fetched, but Nivea Soft! When I was on holidays a couple of months ago I bought this over there to use as moisturiser and body lotion as I didn't have my normal toiletries with me. In those few days I noticed a huge improvement in my skin. I wondered was it the cream but put it down to being away and being relaxed. Skin got bad again when I came back, and I'd actually left the cream there so wasn't using it any more. Picked up another tub of it last week and am using it on face and body. Now obviously the improvement could be down to points 1-3 but I'm going to keep using it anyway

Omarscoming

Has anybody had P around their eyes or eyelids? What moisturiser did you use that did not sting your eyes?

mocha please!

Omarscoming wrote: »

Has anybody had P around their eyes or eyelids? What moisturiser did you use that did not sting your eyes?

Have you tried MooGoo? If you mail them on their MooGoo Ireland Facebook page, they're quite quick to reply and will be able to advise you which of their moisturisers would be most suitable, they might even send you a couple of samples too!

Calmcookie84

I use Hydrocortisyl which my GP prescribed to me. I use it for my eyelids and my ears. It's clearing it up fairly well but it's not some I would use long term.

Gael23

Calmcookie84 wrote: »

I use Hydrocortisyl which my GP prescribed to me. I use it for my eyelids and my ears. It's clearing it up fairly well but it's not some I would use long term.

That is VERY strong. I was put on it by an old style Dermatologist but my GP at the time who was brilliant to me, didn't approve and put me on Protopic which is really good and so much safer.

Johanna3

From peronal experience with skin conditions, I would strongly recommend Chinese herbal medicine as a treatment, it isnt cheap but not crazy expense and take time to treat, but in my expericence does work

mocha please!

Has anyone tried Thiamine for psoriasis?

It's one I've never tried myself because I've only occasionally heard it mentioned, and no doctor has ever suggested it for me.

But, I'm currently on a high dose of Thiamine for a different condition. It involved three consecutive days of bum injections, and since then I've been taking three tablets daily (not sure of dosage, but I can find out.)

My hair is growing so much faster. My nails are growing faster (if I put on nail varnish, you can see the "new" nail growing out at the bottom within a day or two.) And, most importantly, my psoriasis is really clearing up. The difference is enormous.

This is all within two weeks. So I think it could really be worth a try for some of you, rather than most of the other methods where it takes months to see any results. And there are no potential side effects that I'm aware of.

Call Me Jimmy

Would that be a medicine or just a vitamin supplement, do you know?

mocha please!

Call Me Jimmy wrote: »

Would that be a medicine or just a vitamin supplement, do you know?

I would think it's at a higher dosage than you'd get without prescription, because the odd time I've heard it mentioned for psoriasis, it was done by injection at GP. Worth looking into anyways!

esp93

The past week or so my arms and torso have shown signs of healing, not so red & harsh looking as before. However sometimes it looks like there's another kind of rash appearing? Not psoriasis, more small red dots or a patch inside my elbow. It comes and goes throughout the day, very visible when I'm exercising for example! Anyone know if it could have any connection with psoriasis?

Mountainsandh

Could it be a reaction to sweat, if it appears mostly when exercising and in the fold of the elbow ?

esp93

Yea, I think it is just a heat reaction or something similar, strange though I've never experienced it before. Just some more skin issues I don't want to be dealing with I guess

Mountainsandh

Yeah, our skins are just super reactive I guess. Also, the ph and composition of your sweat could be different at this moment in time, depending on how (de)hydrated you are, and your diet, it might be a one off.

esp93

I've just been to visit the dermatologist and was prescribed silkis ointment, Protopic & exorex skin emulsion. After a quick search apparently Protopic shouldn't be used in sunlight? I'm going to Spain next week for 4 weeks & the derm knows this. She told me to use it at night so surely she knows best? Cant help but be a little wary of using creams in the sunlight

Zombienosh

When you use Protopic you have to stay out of the sun and wear sun cream all the time is what I was told when I used it, I've stopped using for side effect reasons.

esp93

Zombienosh wrote: »

When you use Protopic you have to stay out of the sun and wear sun cream all the time is what I was told when I used it, I've stopped using for side effect reasons.

What side effects did you have if you don't mind me asking?

brevity

When I was having the UV treatment the dermatologist told me not to use the Protopic, the one time I accidentally used it, it started stinging. Was fine after that.

I think it must allow for more sunlight/UV rays to get to the skin. This could prove problematic in trying to avoid skin cancers.

Gael23

Yes you should use Protopic at night. I was on it for 2 years before I knew that. Now I'm
On the PUVA I just leave it off those 2 days.
Once it's applied at night,it's much safer than steroids and it really works.

esp93

I can use it for a week for now, but it'll be impossible to avoid sunlight when in Spain? I don't know how a dermatologist could fail to mention this! I know the sun will help it anyways, I would just like it eased a bit before having to wear shorts & tshirts when I'm there. It's a cycle of needing sun to clear it but not wanting to expose my skin in public.

Gael23

esp93 wrote: »

I can use it for a week for now, but it'll be impossible to avoid sunlight when in Spain? I don't know how a dermatologist could fail to mention this! I know the sun will help it anyways, I would just like it eased a bit before having to wear shorts & tshirts when I'm there. It's a cycle of needing sun to clear it but not wanting to expose my skin in public.

Put it on just as you go to bed and then rinse it off in the morning.

Zombienosh

esp93 wrote: »

What side effects did you have if you don't mind me asking?

well its a immunosuppressant, so it left me susceptible to infections and complications also the burning/stinging I got from applying it never really eased off.

tago

Does anyone know how long it takes to get referred to a dermatologist on the medical card? I've been waiting more than a year since I was referred by my GP and haven't received anything about it since then

wonga77

It took me about 12 months when I was referred, you could always ring them up and see if your name is anywhere near being called

tago

Thanks. Do you mean ringing the hospital where I was referred to, or somewhere else?

wonga77

I would ring the hospital you were referred to, just ask to be put through to dermatology. You might be very close or there might be no sign of your name, either way you will have some bit of info

Mountainsandh

Don't think I've seen this mentioned on this thread, new press release on a drug that has been at testing phase for the past year, ixekizumab (how the hell do they come up with those names ?).

The title of the article linked below is a bit cautious, so I'm inserting a more optimistic quote.
Groups of patients were given placebo and Enbrel too, for comparison.

New psoriasis drug clears skin in one-third of patients

https://www.psoriasis.org/advance/new-psoriasis-drug-clears-skin-in-one-third-of-patients

According to Eli Lilly's statement, 78-90 percent of the patients taking ixekizumab experienced at least a 75 percent improvement in their psoriasis after twelve weeks, as measured by the Psoriasis Area and Severity Index (PASI 75). Of these patients, 31-41 percent achieved 100 percent improvement (PASI 100) after twelve weeks, which is clear skin.

In comparison, only 5-7 percent of patients taking Enbrel achieved PASI 100, the statement reports.UNCOVER, the study testing ixekizumab against a placebo only, kept patients on the drug for 60 weeks. Throughout the entire study period, patients maintained "high levels of response," according to the press release.

The most common side effects for ixekizumab were colds and infections around the site of the injection, and in the trials comparing ixekizumab with Enbrel, the frequency and severity of side effects were similar for the two drugs, according to the release.

Amazingfun

Mountainsandh wrote: »

I think I have some too, but it's self diagnosed as of yet.
I was supposed to be referred to a rheumatologist, but never received letter, and I haven't pushed it with GP, as this year has actually been hugely better than last year. No good being seen when there is no inflammation :rolleyes:

Top joints of the middle and index fingers, left hand mostly but the right hand has popped up too on occasion.
Knuckles, mostly little finger one, sometimes all. I had one of them little balls of fluid that happen after inflammation beside the index knuckle in the palm of hand for a while too. Interestingly, I realize as I type that it's mostly the left hand that causes trouble. Pains are mostly dull persistent pain, and I don't really swell a lot, except waking up with sausage fingers. Sometimes searing pain as if a needle is inserted in the joint, have had that at base of thumb, that was terrible.

I remember a year when my heels on both sides were excruciatingly painful, but I never copped on it could be related to PA so I changed footwear, and self treated in lots of different over the counter ways, and made it through. That year one knee was also sore.

Now thankfully it's just knuckles, and apart from left hand that's more bothersome, it's all mild. Don't ever want to get heel pains again.

I'm used to the dull persistent pain.
If it was searing pains on a regular basis I'd really have to do something about it.

Hiya. Forgive the intrusion, and I don't mean to come across as rude, but I am puzzled by your relaxed attitude towards what could be a very bad problem.
I am just in the middle of a very quick crash course in PSa ....and the advice from this Nurse is that you ought to RUN to the nearest rheumatologist to find out what's going on. The reason why is she says that the most damage is done is the first few months to a year of the illness:

PsA is a serious autoimmune disease. Don't mess with it.
While you're trying to wait for diet and supplements to work there are changes going on in your body that you can't see now, but may come to haunt you a few years down the road. That's known as "comorbidities". Ps is not just skin deep.
I urge you to check out these links so you are well informed:
https://www.inspire.com/AnnaPsA/journal/psoriasis-not-just-skin-deep/

‼️ Do not delay treatment. Joint damage can happen in the blink of an eye.‼️
Because treatment was so different 3 decades ago, I am left with multiple damaged joints in both hands and feet. That happened during my FIRST year with the disease.

I don't mean to alarm you but merely to encourage you to get things checked out by someone who knows what they are talking about. I am a longtime autoimmune illness sufferer who has just had the shock of my life by discovering what I thought was a simple and essentially harmless finger infection just might be the beginnings of PSa I am going for a referral Monday as I don't want to risk further damage.

Anyways, I hope the link is of some interest.