Soriatane Question

[lpagano]

Has anyone ever experienced muscle issues? I am experiencing a strange feeling, like I feel the need to streatch my arms and legs all the time, it is a strange sensation, kind of hard to explain. I am taking soriatane every other day and Enbrel 50mg once a week, and I get this feeling the days after I take Soriatane. I see my derm on Thursday, and I think once again I am going to go off the Soriatane :( Besides the nasty little side effects, I just do not feel like it is doing anything.

[SuzanneT]

Yes, I also had that strange muscle feeling, and severe itching (that came on very gradually - I thought it was laundry detergent, soap in the shower, etc., until I figured out it was the Soriatane. The inside of my nose was constantly raw, and of course my fingernails and hairloss. I've been off it for almost a month and a half, and I'm STILL losing hair!! I was concerned about the possible bone effects as well - side effects listed are "abnormal bone growth or pain and muscle weakness."

Lillian, what Soriatane dosage are you taking?

[aorta]

sounds more like restless leg syndrome. have you ever had it befrore the medicine? its actually a common disorder usually worse at night. its like arthritis, but instead it feels good to move. advil 600mg before bed is the trick.

[jdeldrid]

I was on Soriatane for nearly two years. I've been off it for about two months.

I'm glad to no longer be a lip balm addict, but my nails have gone absolutely to crap. They were always long and strong, both before and while I was taking Soriatane. Now they're a crumbly mess.

I never actually experienced any bone issues, but concern about them is why I'm not taking it now.

Enbrel alone doesn't seem to be doing jack for my PPPP. I was planning to start Remicade next month, but my idiotic employer switched carriers in the middle of the year, meaning I have two out of pocket limits to hit in the next 12 months -- one for Oct - Dec, another starting in Jan. Since Remicade on the new plan is only covered under the medical benefit, w/a 20% copay (the old plan covered it at $10/month), I'm planning to ask my rheumy to try Humira through the end of the year.

[lpagano]

Thanks all.

Aorta, I do not think it is restless leg syndrome, I was afraid of that at first, but this is also in my arms and seems worse during the day, however the Advil does help.

SuzanneT, I am taking 25mg and only every other day, I just can't seem to work up to one a day. In addition to this muscle thing, I have the all over itchiness, kinda like someone put itching powder in my clothes, dry, dry dry lips and nose!!!! But my real favorite is the sticky skin, yuk I feel like someone poured syrup on me. When my skin gets wet I feel slimy and sticky.

Jdeldrid, sorry to hear you are in insurance hell! Enbrel alone seems to only keep me from getting new p, but does not seem to get rid of p I already have. I am lucky my only really bad spot are bot my legs from the ankle up abour 7 inches. But they itch and burn all the time. I am not a topical person, they never do anything for me.

[JKNY]

I am just starting week 4 and have not had any muscle issues. I have slimy mouth. ( By the way i think this is a great DIET drug) I eat less because all food tastes slimy!!!

I have itching all over but a good itch not the kind that gets worse when you scratch .


and of cousre PEELING, I mean PEEling. MY palms are severly peeling but I am seeing a bit of improvement to day so maybe that will calm down.

Lips-forget about it-i live on lip balm- i use Vaseline Lip care- Cherry flavor this week.

As for the P, who knows, the peeling is so obvious no one could even tell I had P. Actually, the P is changing. Some has gone way, most is kinda drying up.

I do 25 mgs twice a day and twice a week UVBN. That's another thing- the lights are causeing some burning ( more than usual).

I see the derm tomorrow, i think he has me scheduled for a full 45 seconds.

I think the soriatane is going to work, if i can stand the side effects.

[FlakeyMatt]

A have taken Soriatane on several occations:

Here is a link to the drugs website www.soriatane.com.

IN TERMS OF THE MUSCLES: As Suzanne indicated muscle stiffness is a common side effect. I experienced it as well and it subsided when I stepped down with my prescrition dosage.


PEELING HANDS: VERY common on my Lord I molted like a snake. I found it helped to wear white cotton gloves This keep my skin moist and protected the skin from being torn off

LIPS: Keep putting moisturizer on them as often as you can


Good Luck FlakeyMatt

[SuzanneT]

Lillian, oh, I forgot about the sticky skin!! The worst was my fingers. Some days my fingertips were so sticky that I couldn't even type!!

JKNY, mine started out as kind of a good itch, but progressively got worse and worse, until i would have actual welts and bleeding from scratching!

Matt, I hear you about the moisturizer. And chapsticks! I have one in every pocket and ever drawer:)

[lpagano]

SuzanneT, if I walk across the kitchen floor in my bar feet, they actually stick to the tiles! I actually have black and blue marks on my back from scratching it with a plastic fork, the itching drives me batty. I cannot seem to find a chapstick that really does the trick, I have a small jar of vaseline I carry around with me, lol.

[JKNY]

The feeling feet has just started, the palms are only 40% peeling,but the rest of the peeling seems to have stopped. My derm says its one good peel and then it calms down. The feet are the worst.

Under the peeling, the P is suddenly 85% gone. The P that remains is very thin. I get the feeling nothing can live on the skin on this stuff.

Anyway, he says one more month ( for a total of two) and he will take me off and just stick with UVBNB.

[SuzanneT]

Lillian, do you have a Trader Joe's near you? My favorite is their chapstick - regular Chapstick brand seems to irritate my lips even more. I think it's yellow with a red top (or vice versa!).

JKNY.............. ooooooh, I feel for you. Here's a picture of my feet - isn't that a pretty sight! And I never even had P where they are peeling!!

[SuzanneT]

Hey, guess what I did yesterday? I went to a wig store and bought a fake ponytail - it's like hair extensions. It just clips into my ponytail (which is pathetically thin now from losing so much hair). It's sooooo easy! I wore it to work today and everyone said "Oh your hair looks so good like that, and so HEALTHY!!!" Ha ha. Well, they all know what I'm going through, so I laughed and told them it was fake hair. But it matches my hair (blond) perfectly!!!

[jdeldrid]

The TJ's olive oil lip balm is wonderful. Also Burt's Bees. I'm still finding stashes of lip balm from when I was on Soriatane.

I may, actually be going back on it soon, as I'm having a hard time living with my hands and feet without it. There are other options for me to try (humira, doable in the near future, since it's a copay, and remicade, which I'd prefer to wait on until the first of the year due to my company's decision to change plans in the middle of the year) and the fact that it's now only covered as a procedure -- i.e. I pay ~$500/infusion), but Enbrel is not doing it for me, so I'm not sure how hopeful I am for the other biologics. Soriatane definitely did the job, nasty side effects aside.

- Jaye

[SuzanneT]

Jaye, that's just crazy! When I had Blue Cross, it would be an $800 copay per month for Enbrel or Humira, but little or no copay for Remicade since it was a procedure done in the office or hospital. I'm not sure about Remicade, but now with Kaiser I pay $25 for Enbrel. I'm curious, when you first started Enbrel did you see any improvement in your PPPP? I'm on injection #3 tonight and it's definitely changed - no new blisters, and everything is drying up. Knock on wood, I hate to even say anything, things could change in the next fine minutes. I'm just wondering if it worked for you at first and then stopped working? Or just never really worked at all?

[jdeldrid]

No, it never really worked at all for me. I went up to two shots a week a few months ago in the hope that an increased dose would do the trick, but no dice.

It seems, maybe, to have decreased the total surface area involved, but the areas that do have blisters are much worse than they were when I was taking Soriatane. OTOH, I had blisters all over the backs of my hands and feet last week. Thank goodness, they haven't returned, but the last time I saw anything like that was when my first derm in the bay area (the one who first got me on Soriatane) was trying to address this with topicals only.

Remicade was much cheaper on my old insurance plan than any of the self injectibles were, but our new plan seems to be mostly interested in having us pay as much as possible for anything that requires interaction with an actual doctor and can't be bought from a pharmacy.

I am really bummed about this whole thing -- two years ago, I was completely healthy, now, at 42, every time I go to the doctor, they're suggesting I ought to go on disability. Which I may do. I was so conflicted about getting a handicapped placard for my car at one point, perhaps the fact that I can no longer open a bottle of Snapple is another turning point.

[SuzanneT]

The blisters on the backs of your hands and feet................. was it pustular spreading? Is it gone now? That's not something to take lightly! Although I'm sure you aren't.

I know what you mean about being totally healthy except for this. I don't think I had been to a dr. in years before this started. Over the 12 years that I've had it, it's waxed and waned, the past year has been bad again. It was totally gone for a year or so. One year my hand was really bad. Are you not able to open the snapple due to the pppp on your hand? Or do you have pa as well?

I'm no expert by any means, but my understanding is that each of the biologicals work a little different, and what works for one may not work for another. If Enbrel doesn't work for me, my next step will be Humira, and then Remicade. At this point, I seriously doubt that I will ever take Soriatane again, the side effects are too much.

[lpagano]

Thanks for the lip balm suggestions, I will stop by TJ's.

[jdeldrid]

Yes, Suzanne, i believe it was pustular spreading. It never went beyond the backs of my hands and the tops of my feet, but I was pretty freaked out and watching it veeerrry cloely.

[wildflower]

I tried soriatane for a few months, my leg muscles cramped bad, and my lips got so dry they bled. My doc give me Elidel to use on them and it helped a lot. However, after a few months on it, I ended up in hospital for two days with liver problems and they took me off it. It started with pain in the back of my head and neck and progressed to running approx 102 fever for a week and absolutely 0 energy.

SuzanneT - Have your doc check that peeling, my feet and hands did that, peeled in sheets, they told me it was Dishydrosis, it was very itchy and painful. It has come back twice so far, steroid shots help it not be so bad.

[SuzanneT]

Thanks Wildflower. I think that the peeling was just a side effect of the Soriatane. I've stopped the Soriatane and NO MORE peeling!

Jaye - In the twelve years that I've had PPPP, I've never had blisters anywhere except the palms of my hands and soles of my feet! I've never had any other kind of P, either. I think I would be totally freaked out if I thought the pustular was spreading, too!

I don't want to jinx myself.............. I hate to even say it............... but I did my third enbrel injection on Tuesday, and I ****think*** it's starting to work <fingers and toes crossed!!>
Sue

[FlakeyMatt]

I don't want to jinx myself.............. I hate to even say it............... but I did my third enbrel injection on Tuesday, and I ****think*** it's starting to work <fingers and toes crossed!!>
Sue


well as best as I can x them *giggle* :p

[ouchyk]

Good luck Sue! :D Crossing everything possible for you!

Get ready for those spiked heels!

Lillian, hope you feel better soon too.

Karen

[lpagano]

:D Just got back from derm, he pull me off the Soriatane, and I am back on MTX, I am very happy. So I am now on Enbrel and MTX. MTX is really the only thing that has ever worked well for me.

[SuzanneT]

Lillian, did you have to wait a while before starting up the MTX again? I know that MTX is contraindicated w/ Enbrel. Are you taking the MTX as injectible? Just curious what the doses of each are?

Crossing my fingers for you as well :)

Sue

[jdeldrid]

Actually, MTX is contraindicated with Soriatane -- taking it w/Enbrel is pretty common.

Suzanne, I couldn't open the Snapple because of a combination of the state of my skin and the fact that I seem to have lost a lot of grip strength in the past couple of months.

I have PA as well, so that's probably the source of the grip problem. I see my rheumatologist next Friday, so it's definitely on the agenda.

[SuzanneT]

Oh, thanks for correcting me, Jaye! I mis-spoke! I knew that it was Soriatane, as I had to stop the MTX topical when I started the Soriatane. Sorry about that! Hope you do better with this new treatment.
Sue

[lpagano]

I have to stop Soriatane, but only have to wait until I have my blood test for MTX to go back on it. I take the pill form, I am to take 3 2.5mg a week. I asked him if I need to taper off Soriatane he said no, that Soriatane actually tapers itself off as it takes about two months to completely leave your system. I will remain on 50mg of Enbrel a week.