Got So Much to Do, but...

[scarey55]

Oh, poor MOM,
sending you one of those hugs in a mug so, sit back and relax - here he comes......
Kisses

[squashysu]

a defo big hug to you, from one HMS sufferer to another, i know the pain you are feeling, i fall over all the time as well, even after a big op, got the rhuemy on wednesday am, yeah like he can take the pain away NOT!!!!

i so hope you are on the mend soon and make syre you have plenty of rest, well if that is at all possible x

[Alice]

I'm so sorry to hear all that Sarah. I do hope you will be on the mend very soon. Be positive and believe that it will all come right. It will. Chin up. We're all thinking about you.

[SarzWix]

Thank you so much all of you, I read this thread last night before I retired to bed with another migraine, and it did cheer me up The OH is going through his own problems at the mo, and my family are scattered to the four corners, so you all are my Virtual Family, and you do a great job of it

MarkInEssex, I have googled the M-Folia stuff, and although it sounds promising, it's also a bit pricey! If I can find the money, I'll certainly give it a try.

Squashysu I know, I should be used to all this cr*p by now, but I've had the HMS reasonably under control for a long while now, and this is like a triple whammy! Good luck with rheumy, they do their best, bless 'em.

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 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.

Manda, you're a star. I'm on a 25mg dose.
I have googled, but didn't spot this one. Found the British Dermatology Assoc., which has some of those side-effects listed, and also goes on about "Ossification of ligaments and tendons", which I had to research because I didn't understand it!, and also possible "Ulcers on the eye". Nice...
It also mentions "Headaches", which I've been subject to a ridiculous number of in the past few weeks; I've always been prone to migraine but I've had more in the last 2 weeks than in the previous year, and they're getting closer together.
The increased apetite is happening too, not mentioned at all on the leaflet.

On the good side, none of these are happening, yet!

· 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

Going to read that forum now, and ring the docs for another appt a.s.a.p. (which prob means 2 weeks time, knowing my docs )

[Stacey Steve]

This is the problem with complex drugs, they are great in a lot of cases treating a specific illness but the side effects for some people are quite horrendous.

I am on a cocktail of drugs and even taking something as simple as an antibiotic can make me quite ill and I get very nervy if the doctors suddenly prescribe something over and above my "normal" drugs.

However I do normally find that after a period of time my body gets used to them and the side effects seem to calm.

I know you must be feeling bloody awful but try and stick with it in the hope that you actually reap a benefit.

[SueA]

Hope you're feeling better soon Sarah. I'd just keep going back to the doc's & telling them how it's affecting you, it could be just something as simple as adjusting the dose as S.B.P. says, or you'll just have to weigh up if it's worth all the side effects if it clears the psoriasis. It depends which you find most debilitating really, awful to only have the choice of the lesser of two evils! Might sound silly but as it's possibly stress related is there anyway you could go to something like yoga classes, my doc. recommended that for stress & depression ( I didn't go though) & something like that or Tai Chi might help relax you.

[shirlthegirl43]

Hope you are feeling a bit better today Sarz. Nag the doc for a quicker appointment - they should see you weekly after putting you on a new drug which has so many side effects!

[SlugLobber]

Hi Sarah, Hope you're feeling more positive today.

Do you have UV treatment for your psoriasis? This is one of the most effective treatments. Some people actually book sunbed courses or buy one, just to have a few mins a day. It is indeed stress triggered. Another thing you might try (sorry, I know you're probably feeling like a pill-bottle or a guinea pig) is bathing in Dead Sea salts. I've never tried it myself, but I've heard that this is a wonderful treatment.

Like all things, though, it's best to treat the cause, so do try and sort out the stress trigger. Take care. x

[smallblueplanet]

Manda...I'm on a 25mg dose...

Check whether you could have a lower dosage? Here's an article suggesting lower doses might be as good, lower here seems to be 10mg-25mg.

Low-Dose Regimens of Acitretin (Soriatine) Effective in the Treatment of Moderate-to-Severe Plaque-Type Psoriasis: Presented at AAD

March 7, 2006

...Lead investigator Jennifer Cather, MD, Dermatologist, Texas Dermatology Associates, Dallas, Texas, United States, noted that current practice in acitretin treatment is to give a maximum tolerable dose, ranging from 25 mg to 50 mg per day, while managing the dose-related adverse effect profile. She said the results of this study are significant because they suggest that dosing at the minimal, more tolerable daily dosing regimen of 10 or 25 mg over a 6-month period is as effective as current practice...

It is talking about a specific type of psoriasis, but there are other articles on the Net too talking about low dosage results. Other articles say that effectiveness is dosage dependant. But surely it'd be worth trying a low 10mg that might not be quite as effective, but may not cause as extreme side-effects? (Edit - Not sure it'd be a good idea having sunbed treatment with acitretin as it could cause your skin to be light sensitive!)

Good luck with your GP, he probably knows less than you!

Manda

[SarzWix]

Good luck with your GP, he probably knows less than you!

Manda

That seems to go without saying

Been for blood test results. I'm not anaemic. I knew that. I got told off because they wouldn't do the blood glucose test, because I hadn't fasted beforehand. I explained that I couldn't have gotten to the hospital if I hadn't eaten something as I was weak/shaky/headachy and flummin starving, and by the time I got to the head of the queue (about 1½ hours ) I was starving again, so surely that would have shown low blood sugar. But no. I have to go for another, and if I feel to ill to drive I should get a taxi!

I explained how on Sunday I had eaten a banana and within half an hour had intense stomach cramping, and had to run for bathroom, culminating in 5 mins of vice-like head pain and rythmic pounding in head & ears, so bad I was in foetal position on bathroom floor! Said I thought it was something to do with the potassium in the banana interacting with the medication, and I haven't had it since, although the headaches are still coming & going. He read his little text book for a minute & said "Its not mentioned in here, I think it's more likely that the banana triggered your IBS" Swollocks!!! I've never had IBS triggered by a banana, and it's never affected my head!! Why can't they just use Google in their office - it'd have told him what I already know - that the tabs can mess with potassium in your system! I only ate the flippin thing coz I thought it'd help the blood sugar...

What a waste of time! My next appt with the 'GP Specialist (I don't even get to see a consultant) Dermatologist' isn't for another couple of weeks yet, so what do I do?!
At the mo, I'm trying to eat little and often, with some easily accessed carbs, plus some complex carbs & protein, which is just about keeping me going without headaches. I daren't just stop taking the tabs, because if it's got my system screwed up what happens if I abruptly stop having it? (Actually, the incident on Sunday was after I'd missed Saturdays tab because of major migraine!)

On the plus side

I've managed to plant onion sets and garlic this morning, and mulch a bed with manure

[di]

I think you're wise not to suddenly stop taking the tabs~can sometimes have a worse effect to come off sudden.Have you tried phoning the dermatologist to see if you could get an emergency appointment?or even some advice down the phone?
In the meantime stay off them 'nanas!!!Hope things pick up for you soon,x

[SarzWix]

I think you're wise not to suddenly stop taking the tabs~can sometimes have a worse effect to come off sudden.Have you tried phoning the dermatologist to see if you could get an emergency appointment?or even some advice down the phone?
In the meantime stay off them 'nanas!!!Hope things pick up for you soon,x

I'm on the list for a cancellation. Just have to wait for a phone-call, and drop everything to get there in about 10 mins If anything starts going seriously wrong in the meantime, I think I'll just head for A&E.

[HeyWayne]

Ok, firstly here's a hug from me...



Secondly, I don't nkow much about psoriasis, but I've had eczema on and all pretty much all my life (nowhere near now what I used to), and the latest ointment the docs gave me was this stuff called Eumovate. Worked better than anything I've be described in the past.

((((((((((((HUGE))))))))))))))

That's a huge hug by the way.

[smallblueplanet]

...I daren't just stop taking the tabs, because if it's got my system screwed up what happens if I abruptly stop having it? (Actually, the incident on Sunday was after I'd missed Saturdays tab because of major migraine!)

Have you posted on the psoriasis forum? Ask on there about whether its safe to stop taking the tabs. Did you ask about the dosage or is that the consultant?

Keep googling for other specifics, there's bound to be info out there. Try and see if there are other drugs available (in the States they're less fond of acitretin and it has a 3-year time to 'clear your system' I read somewhere). If there is anything else present your GP with the info and say you wannna try it! (A couple of years back we informed our GP about alternative treatment that the consultant in Salisbury didn't believed worked. He was very good about sending the OH to get another opinion. Needless to say the alternative worked and saved the OH having major surgery - but I hunted the info out on the Net myself.) I'm not saying there are other treatments, just that 'they' don't always know best.

What do you treat the IBS with?

[SarzWix]

Have you posted on the psoriasis forum? Ask on there about whether its safe to stop taking the tabs. Did you ask about the dosage or is that the consultant?

I'm not saying there are other treatments, just that 'they' don't always know best.

What do you treat the IBS with?

No, I haven't, good idea. I think I've read every post on that forum which mentions acitretin, and none of them mention what happens when you stop it, except for the psoriasis eventually/immediately coming back (depending on how long they've taken it for)
Dosage is the (not) consultant, GP knows nothing about it except what's written in his text book

I totally agree about looking for other treatments, and I'm looking So far the alternatives all seem equally potentially toxic , and this one is agreed to generally be the best shot for this type of (extremely resistant) psoriasis. I haven't gone down the homeopathy route yet, or some of the herbals which get good write ups, because I just can't afford it! At least the NHS is still free!
I have found a home use UVS lamp which would exclude the need to drive 20 miles for treatment, but at £75 it's no cheaper than the other 'alternatives'!

As for the IBS, I don't 'treat' it as such, just avoid triggers as much as possible - mushrooms are a big culprit, strawberries not great, and baked potato skins are positive murder! It is a common problem in HMS, the slack joints are caused by 'floppy' collagen, which also applies to the bowel and can make it a bit temperamental