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(37 Posts)
debbie102 Sun 24-Jun-07 21:23:30

anyone suffer with this - sick of taking drugs and feeling rotten 24/7 any ideas please help any suggestions welcome, its everywhere im currenlty on an anti cancer drug make me feel tingley all over numbnes and hot all over works just dont know how much longer i can go on with side effects suffered since i was 11yr old, under skin consulant(not literally) they just keep saying you have to be persistant feel like a snakes shredding its skin its horrible feel lik a lepper any ideas thanks debbie

debbie102 Sun 24-Jun-07 21:44:31


EmilyandLola Sun 24-Jun-07 22:01:08

hi Debbie, I to have sorry arse is, (that's what its called in this house)

I'm fed up too, steriod creams etc lotions and potions, does any thing work? My doctor doesnt seem to bother trying much

debbie102 Mon 25-Jun-07 09:48:53

well hi ive tried every lotion and potion in the book, no joy but i took myself to a and e at my local hospital cause my body was so sore, they referred me to a skin specialist, within 3 das, that was the good part he has put me on these drugs cyclosporan its an anti cancer drug kills off your imune system so you have to be monitored very carefully, but it works great side effect arn to nice numbness and tingling all the time but if you can cope with it its worth a try, my doc wasnt bothered either, you get to a point were you feel like a lepper and no one cares dont you, ask about these drugs, or there is another called methotraxate these are slower to work but have the same effects, let me know how you get on debbie

BadKitten Mon 25-Jun-07 10:04:28

Ouch Debbie - you must have it pretty nastily to be on cyclosporin - you poor thing I'm having a bit of a flare at the moment but not too badly. Am having a bad flare of psoriatic arthritis though - got a cold this weekend and that always seems to bring it on.

I assume you are doing all the usual emollients? Not much chance to get some sun on it at the moment if your weather is like it is here.

I tend to get guttate psoriasis with some chronic plaque. The guttate I just end up using lots of steroids and uv and polytar in the bath to keep it more comfy. However I did develop cataracts that are associated with high steroid use and had to have them removed in March. The plaque psoriasis I alternate with dovonex and betnovate. Scalp I use betnovate.

I hope that you clear up quickly.

Twiglett Mon 25-Jun-07 10:06:07

are you on methotrexate? what dosage? did you build up from low dosage? I wouldn't be happy with those side effects .. are you having bloods

it could be the wrong drug for you ..

unfortunately very much trial and error

Twiglett Mon 25-Jun-07 10:07:31

oo sorry missed the post where you said cyclosporan

if you find the side effects difficult to manage .. I'd make a fuss tbh ..

maybe methotrexate will be better for you? and yes it does, unfortunately take about 6 months to build up

Twiglett Mon 25-Jun-07 10:09:10

sorry DH on methotrexate for PsA .. but his dermatologist has recommended increasing his dosage to 15mg (from 10) for the psoriasis ..he's currently at 12.5mg

onechild Mon 25-Jun-07 10:15:26

Hi me and my mom suffer I get it mainly when im stresed/ upset. WE read to use grape seed oil lots of botanics have this in found the 5 min conditioner gets rid of most from my scalp even the hairdresser noticed, or you can get grape seed oil, grape seed oil capsuals at health shops quite pricey though

mankyscotslass Mon 25-Jun-07 10:22:33

Dh has an ointment for his patches on arms and legs..Dovobet I think? He is on methotrexate and a couple of others for his psoriatic arthritis.
Dh is struggling on the methotrexate, they upped him to 17 and this time his body is not adjusting at all, he is still ill after taking them and has had every bug going and been off sick with them too...his work are less than impressed. He is seeing his consultant on Wednesday to see what they can dp. They were talking about upping it to 20 this time, but that wont happen, he has been so ill with them......and they have not worked on his arthritic symptoms either...

ComeOVeneer Mon 25-Jun-07 10:25:21

You have my sympathies. DH suffer psoriasis and psoriatic arthritis. He was on methotrexate, but it elevated his liver enzymes so had to come of, and couldn't use anythingfor 6 months. He has recently started on a trial for embrel which he has to inject twice weekly. He has been on it for 5 weeks and the results are already evident. He is doing a trial through a hospital so it is covered by the nhs and hopefully after the trial his nhs specialist will continue to provide it under the nhs otherwise we would have to pay for it privately which we can't afford

mankyscotslass Mon 25-Jun-07 10:26:27

sorry Debbie, hijacked your thread a bit

Twiglett Mon 25-Jun-07 10:26:56

MSL .. has he tried sulfasalazine?

the biologics like enbrel, remicaide would be great but unless you can get on a trial you've got a cat in hell's chance on the NHS .. and also what happens when you need to come off the trial

ComeOVeneer Mon 25-Jun-07 10:27:02

Sorry that should read enbrel

mankyscotslass Mon 25-Jun-07 10:33:23

COV, that's interesting, will have to get him to ask his consultant...his rheumatologist is doing a lot of research at the moment, but i think he is better known on the Lupus research field (he is also my mums specialist). What are the side effects, if you don't mind me asking?

mankyscotslass Mon 25-Jun-07 10:36:35

Twig, yes, he is actually still on sulfasalazine too, also had celecoxib....still sore and stiff, probably having to trade the car in for an autmatic soon.....argh...

ComeOVeneer Mon 25-Jun-07 10:38:44

DH has (yet, but fingers crossed) to show any side effects, but look here for the possible side effects and other info.

ComeOVeneer Mon 25-Jun-07 10:40:30

Twig, dh's specialist has said if it is a sucess for dh there is a very real chance he can continue to get the enbrel on nhs prescripion.

mankyscotslass Mon 25-Jun-07 10:44:40

COV, many thanks for that link....he can but ask!!

Twiglett Mon 25-Jun-07 10:49:49

Is he in a flare MSL? DH was on celebrex too but has stopped taking it with the methotrexate .. the sulfasalazine gave him dermatitis which isn't great with the underlying psoriasis so he had to come off

sympathies and empathy

We've already had to switch to an automatic .. in fact we're just about to sell our Astra automatic for a bigger car


ComeOVeneer Mon 25-Jun-07 10:53:56

Twig from what I can tell this is quite common. If a patient participates in an nhs trial for a drug then they are entitled to continnue on the drug under the nhs, or certainly that is what dh's specialist endevours to do. It isn't fair or ethical to trial it under the nhs and then only provide it privately surely?

Twiglett Mon 25-Jun-07 10:56:42

not that I'm aware of CoV, but I sincerely hope you're right .. in fact it was made fairly clear to us that even if DH got on a trial there would be no continutation ..

mankyscotslass Mon 25-Jun-07 10:57:13

Twig, I think he is, but it has just been getting pregressively worse anyway. He tolerated the 15mg of methotrexate, but not the higher does, and it's just not helping.....I had never even heard of this til he was diagnosed about 4 1/2 years ago...They are weaning him of the celecoxib due to history of heart problems in his mothers family, so they do need to dort something else out...shake him and he rattles with all these pills.....
we are getting rid our our large mpv, going to be looking at something smaller that can still take 2 high back boosters and a car seat...and an automatic...but i am a bit worried about commiting the money since his work are getting a bit sniffy about his absences so far this year...understandble, but not helpful....
COV, roughly where in the country are you?

mankyscotslass Mon 25-Jun-07 11:07:44

Apologies for the spelling, have poorly dd and a sick bowl on my knee

Twiglett Mon 25-Jun-07 11:08:18

whereas we're hoping to get a Zafira because the positioning seems more comfortable

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