Soriatane...oh my poor feet....

[SuzanneT]

This is the worst side effect yet. It hurts worse than the pustules (blisters) on the bottom of my feet ever did! I've cut back my dosage to 10 mg / day (yesterday). I think maybe 25 was too much (I am 120 lbs.)..... but I'm in pain today. Limping around at work, all my toes and under my toes are peeling. The bottoms of my feet are SOOOO sensitive!!!!
Please tell me that this is temporary as I don't want to stop taking Soriatane - it's working so well!
Sue

[hkowalczyk]

Suzanne,

hang in there and just stick to 10 mg/day for a while (give it at least a couple of weeks) - the best thing for me was lots of vaseline on the feet at night.

good luck,
Henri

[grannyfranny]

Suzanne,,,,,,,I know exactly how you feel. My palms were once totally covered. My feet got so bad, I had to use a wheelchair.
I discovered,,,by accident,,, that an antibiotic would help me. I stayed on Keflex for 6 months. 500mg 2x daily. I also started taking the supplements and started a diet that we talk about in C&S forum.
I do get an occasional pustule but they turn dark before reaching the surface. For the most part, I just have some dry skin and redness where the p was.
Now, I can walk, but I also have osteoarthritis in my feet so I can only do so much.

Take a look,,,,,,,,,,

http://www.psoriasis.org/forum/showthread.php?t=16844

http://www.psoriasis.org/forum/showthread.php?t=16816

This is the supplements that I am taking.
http://www.psoriasis.org/forum/showthread.php?t=18608

Since I wrote this, I have added vit. D and am totally off dairy products. I use Rice milk now.
I think staying off my feet help the healing. My DH did most of the cooking and I hired someone to clean house.

I got sick and tired of being sick and tired. Even with taking an antidepressant, I was so depressed at times I didn't want to get out of bed. The pain, bleeding, cracking skin,,,,,I can't believe I have lived with this for 42 years and this has been the best treatment----EVER---for me. So, I took matters into my own hands.
This last year has been an eye-opener for me.

[grannyfranny]

Suzanne,,,,,I forgot!
Buy some CROCS for your painful feet! That's all I have worn since November. There are a lot of styles,,,doctors and nurses are wearing them.
Sally, Patty, lots of us are wearing them.

http://www.crocs.com/home.jsp

[kerry2392]

Suzanne,

You and I are in the same boat! I'm still getting worse instead of better. Just call me Gimpy. I'm peeling like crazy and lips are so cracked and bloody it hurts just to open my mouth. (Lip balm/salve doesn't help!) I pray these side effects are only temporary. I swear I only got about 2 hours of sleep last because I couldn't stop itching. This is the worst it has been so far.

[SuzanneT]

kerry 2392 - how are you doing? Have you decreased the dosage? do you have it on both palms and feet?

Granny, I can't believe how well you are doing! How long have you been clear? I've had this for 11 years, and it went away for a couple of years, but then came back. Believe me, if the Soriatane doesn't work, I'm going to try the antibiotic that you are taking. Or maybe you're not taking it any longer?

I saw my derm yesterday. Blood work is fine. I'm now on 25mg every other day. My hands have cleared up, but my foot (I only have it on one foot) is worse today. No pustules, but extreme flaking, redness, sore enough that it REALLY hurts to walk. Seems like the more time I spend on it, the worse it gets. I don't know whether to increase the dosage - side effects are pretty much gone, except some 'residual' peeling on bottoms of toes and feet, or stay with the same dosage. I sure don't want to lose my hair. Yes, I know in most cases it comes back, but mine is shoulder length...... how many years would it take to grow back??? I'm frustrated...........I hate this disease!

[SuzanneT]

I meant to post a pic - I think it actually looks worse today. What's up with that? :( Note: this picture is right after I took a shower, so it doesn't show the redness.

[SuzanneT]

kerry....... forgot to mention, do you know that I've NEVER had the chapped lips? Could it be that I'm a lipstick / chapstick freak anyway?? Naaa, I don't think so - I guess I'm 'fortunate' enough to not have gotten this one. The side effects that I've had so far......... peeling fingertips, peeling toes (underneath), peeling soles of feet, peeling palms, inside of nose extremely (!) sore, scalp was so tender that it hurt to blowdry my hair! If you think THAT didn't freak me out - I thought for sure I would wake up the next morning and be bald! I've probably forgotten some, but the absolute worst was the clammy sticky skin - only on the palms of my hands. I just couldn't take that - it was almost impossible to type, my fingers HURT!! You know, I really don't want to complain, it's just nice to know that someone else is going through this, too! :)

[MikeK]

Suzanne,

You and I are in the same boat! I'm still getting worse instead of better. Just call me Gimpy. I'm peeling like crazy and lips are so cracked and bloody it hurts just to open my mouth. (Lip balm/salve doesn't help!) I pray these side effects are only temporary. I swear I only got about 2 hours of sleep last because I couldn't stop itching. This is the worst it has been so far.I'm so very sorry, Kerry. Have you tried putting some Vaseline on your lips? Also, severe itch is a sometimes a sign that the psoriasis is starting to heal. (If the problem persists, then please discuss the problem with your derm.) In the mean time, in no particular order, here's a some suggestions that will hopefully help give you some relief:
Taking a bath with a product like Aveeno Oatmeal soak (http://www.aveeno.com/detailAction.do?id=3689) (cheaper store brands are also available) can also help relieve the soften the scales and relieve the itch. Taking a cool shower; Putting on some moisturizer; Corn starch; Anti-itch powders, creams and lotions such as Gold Bond. (I usually buy the cheaper store brands.) My current favorite is Eucerin Itch-Relief Moisturizing Spray. I like it because it helps control the itch and it's easy to apply because it's a spray. Here's a link to some additional information: http://www.eucerinus.com/medicalsite/products/handandbodycare/anti-itch/anti-itch.html. Some very good friends of mine swear by Neutrogena Anti-Itch Moisturizer (http://www.neutrogena.com/ProductsDetails_36.asp). It has lidocaine in it. Ice packs; Benadryl; Atarax (http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/ata1035.shtml). You'll need a prescription. It makes me VERY sleepy so I can only take it right before I go to bed.I have psoriasis on the tops of my hands (it's not pustular) and I find that it helps to moisturize frequently -- especially right after I wash my hands. I also find that the kind of soap and laundry products that I use makes all the difference in the world. Anti-bacterial and deoderant soaps, for example, tend to irritate my psoriasis and make it drier and itchier then it already is. I've had similar problems with the dyes and fragrances in detergent and dryer sheets, etc. ( I've even had problems with Dreft and that's supposed to be gentle enough for babies! :eek: :( :rolleyes: ) I haven't had any laundry related problems since I switched to "free and clear" laundry products. And, here's a link to some previous discussions about psoriasis and soap: http://www.psoriasis.org/forum/showthread.php?t=13629.

I meant to post a pic - I think it actually looks worse today. What's up with that? :( Note: this picture is right after I took a shower, so it doesn't show the redness.Yikes, Suzanne! That looks so painful. I'm sorry that it seems to be worse instead of getting better. :(

I saw my derm yesterday. Blood work is fine.That's great. At least you got some good news.

I'm now on 25mg every other day. My hands have cleared up, but my foot (I only have it on one foot) is worse today. No pustules, but extreme flaking, redness, sore enough that it REALLY hurts to walk. Seems like the more time I spend on it, the worse it gets.Sigh! I'm glad to hear that your hands are doing better, but I'm sorry about your foot.

I don't know whether to increase the dosage - side effects are pretty much gone, except some 'residual' peeling on bottoms of toes and feet, or stay with the same dosage. I sure don't want to lose my hair. Yes, I know in most cases it comes back, but mine is shoulder length...... how many years would it take to grow back??? I'm frustrated...........I hate this disease!Sigh! I've read that sometimes it takes several weeks for Soritane to kick in. I know that it's frustrating and painful but, if you can stand it, you might have to give it a couple more weeks. I don't blame you for not wanting to risk any additional side effects (especially to your hair) by increasing the dosage.

Now, heres a couple of suggestions that might help both of you:

Several people posted her that they were able to get some relief from the pustular psoriasis by using an over the counter coal tar product called MG217 (www.mg217.com). Here's the links to some previous discussions (some of them are very old -- in the case of the older discussions we have no idea how well the people who participated in those discussions are doing because none of them post here any more.):

http://www.psoriasis.org/forum/showthread.php?t=15186

http://www.psoriasis.org/forum/showthread.php?threadid=2801&highlight=pustular+psoriasis

http://www.psoriasis.org/forum/showthread.php?threadid=2813&highlight=pustular+psoriasis

Coal tar has been used to treat psoriasis for many, many years. Here in New Jersey, the coal tar version of MG217 is readily available in just about any chain type drug store. (MG217 also comes in a salicylic acid version. Salicylic acid is one of the few doctor approved methods for removing scales.) Unfortunately, coal tar products may not be available in California.

Jean (her screen name is luckyducky) mentioned that was gets relief from the burn and itch of pustular psoriasis (she has it on her left hand and foot) by using a product called Johnson and Johnson's Advanced Healing adhesive pads. Here's a link to the thread where we discuss it: http://www.psoriasis.org/forum/showthread.php?t=7429.

There's a woman named Teresa (her screen name is Tree) who posted here only a couple of times way back in 2003. She got relief from pustular psoriasis by using two very powerful medications -- Enbrel and cyclosprorine (more about them both in a couple of minutes). She included a link to a personal website in one of her posts. (Here's a link to her post: http://www.psoriasis.org/forum/showthread.php?t=3409.) I just checked. Her website is current as of December 16, 2005 and she was still doing well.

As I mentioned, Teresa got relief by using two very powerful medications -- Enbrel and Cyclosporine. Enbrel is part of an exciting new class of medications called biologics. (Here's a link to NPF's dicussion of biologic medications: http://www.psoriasis.org/treatment/psoriasis/biologics/.) All of the biologic medications are very expensive, so you may run into insurance issues. (The NPF has an insurance advocacy service that goes to bat for people who have insurance issues. Like any other medications, all of the biologic medications are not without their potential side effects. These medications have only become available in the last 10 years or so some of their potential side effects are not yet known. Enbrel (which is one of the medications that Teresa is using) is given by self injection at home. (It's kind of sort of like giving yourself an insulin injection.) Most people inject themselves twice a week. Here's some links to some additional information about Enbrel:

www.enbrel.com;

http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/enb1159.shtml;

http://www.rxlist.com/drugs/drug-16772-Enbrel+SubQ.aspx?drugid=16772&drugname=Enbrel+SubQ.

Cyclosporine (which is the other medication that Teresa is using) has a fascinating history. It was first developed to prevent rejection of donated organs in transplant patients. Someone noticed that transplant patients who aslo had psoriasis started to get better after they were put on cyclosporine. That led to research and clinical trials and the rest as they say is history. Because cyclosporine is such a powerful medication psoriasis patients (who are not transplant recipients) have to take a break from using cyclosporine after a year. Again, cyclosporine doesn't work for everyone and it's not without it's potential side effects, but given Teresa's experience it's another treatment option for you to consider. Here's a link to some additional information: http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/san1393.shtml and http://www.rxlist.com/drugs/mono-4108-CYCLOSPORINE+MICROEMULSION+CAPSULE+-+ORAL.aspx?drugid=12252&drugname=Neoral+Oral.

GrannyFranny limits the trauma to her hands by using an electric jar opener. Here's a link to the thread where she discusses it: http://www.psoriasis.org/forum/showthread.php?p=162088&highlight=Decker+jar+opener#post162088.

I'm sorry that this turned into such a novel. You're both probably suffering from information overload. :rolleyes: I hope that it helps in some small way.

Good luck! And, I hope that you both feel better soon!

Mike

[RichJ]

hi sue and kerry,
sorry to here of your p. i hope you are doing better today. i wish you the best.

try and have a good day all

richard

[kerry2392]

Thanks to everyone for the helpful tips! I will definitely try some of those. Suzanne, I was also on antibiotics (both oral and injections). The oral antibiotics helped somewhat, but weren't extremely effective for me. The injections were effective for about 2-3 weeks, but then I had to go back and get more after they wore off. I stopped those because they were just too painful. At one time, I would receive about 2-3 injections in the palm and 3-4 in the foot, and 1-2 in the derrier. It wasn't the pinprick so much, but the extreme burning when the medication went in.

As for the Soriatane, I haven't seen my derm yet to taper it to 10 mg. I go in this coming Monday. I'm still experiencing the side effects of peeling and extreme itchiness all over (even in places where the p doesn't exist). I'm experiencing the Alopecia (thinning of the hair) and the dry/cracked lips. I'm sort of freaking out because I had p on the R) palm and L) half of my foot. Since I've been on Soriatane, the peeling has "spread" to the whole part of my L) foot so it now looks like I have p all over it (instead of just half of it), and oddly enough, I didn't have it on my R) foot. Well, now the peeling has started there too. Like you Suzanne, I'm feeling very sad, angry, and upset and wish none of us had to go through this. Hopefully, the 10 mg dosage will help since I would like to stay on this a bit longer because I know it takes a while for the medication to start "healing." I only hope that it does to start to work and that it's my "miracle" drug.

[grannyfranny]

Kerry,
How long were you on the antibiotic and what was it? They gave me Ancef by IV when I had the staph infection. After that they switched me to Keflex, 500mg, 2xdaily. I stayed on it for 6 months. I am the best I have been in 7 years.

I still have some Keflex and if I see new places popping up,,,I will get back on it. I see my derm on the 18th.

[SuzanneT]

Mike, Thank you for taking the time to post all of this information! I will save it and look back on it. Unfortunately, I think many of these things don't help pustular psoriasis as much as other types - I've never tried any topicals that did anything - and I think I've tried them all! Except the one you mentioned that isn't available in CA - and of course that's where I live, no wonder I haven't seen it.

Kerry, I know exactly what you are saying! My left foot is now peeling, and I've NEVER had p on that foot! The peeling is different though, it seems to single out certain areas - ends of toes, sides of fingers around the fingernail, and it's a different type of peeling, if that makes sense. I'm so sorry that you've noticed hairloss! Not sure if you're male or female, but if you're a guy, at least if it's any consolation it should grow back fairly quickly. Hey, I have straight blond hair, maybe it will grow back brunette and curly? I hope your derm appt goes well. Just an FYI, I went every 2 wks for the first 6 wks with blood work every 2 wks. Now I will go once a month. I started at 25mg / day, and when I complained about the side effects, she suggested that I cut it to one every other day. I now have an Rx for 20mg / day, but in 10 mg caps, so that I can adjust as I see necessary. Right now I'm still dividing the 25 mg in half, but tomorrow I will start on the 10mg every other day for a few more days. I've found that it takes at least a week (maybe more??? Henri would probably know the answer to this) for the change in dosage to catch up. Oh, I also meant to say that I, too, had the extreme itchiness - all over, especially my scalp. And I have never had P anywhere except my right hand and right foot. I hate this disease :( Good luck with your appt.
Sue

[kerry2392]

Granny,

I took the oral antibiotics for a month. They were pretty short-acting for me. Suzanne, I'm a female. :D I know, everyone that I know with "Kerry" spelled like it is, is a guy. :) My hair is black and is pretty long, so luckily the hair loss isn't very noticeable. My derm prescribed the 10 mg allotment today. She was pretty disappointed about the lack of progress and is looking at the coverage of Enbrel, Humira, and Raptiva. I figure I'll try the 10 mg for another month (until my next appt.), and if there's no real progress and the side effects are still very prevalent, I'll try some of the other biologics. Let me know how the decreased doseage works for you.

[grannyfranny]

Kerry, one month would not be long enough. Look at the new thread about Clinical study,,,,, this is a lot like what we have been doing in the C & A forum.

http://www.psoriasis.org/forum/showthread.php?t=19253

[SuzanneT]

Kerry, just curious what results (if any) from the Soriatane........... and what was your PPP like prior to starting the Soriatane? Does it look like mine? Do you still have the pustules? Hasn't the Soriatane done anything? I'm not ready to give up - I saw such terrific results the first two weeks - but I think I need to up the dosage to every day - apparently I cut back a bit too much and regressed a bit. I am also going to do everything I can healthwise - supplements, diet, etc. I sat outside yesterday sunning my foot for about half an hour yesterday, I was a bit concerned due to the sun sensitivity warnings, but I was fine (.......... yes there was sun, I live in Southern California!) I think maybe it's better today, but who knows, I'm doing so many different things!
Sue

[kerry2392]

Actually, I have plaque p on my palm and foot (now feet?). The Soriatane has made my palm red and the skin has thinned, but the p seems to have disappeared on the palm area. As for my thumbs, they're peeling and I can't tell if it's just peeling or actual p. As for my feet, it really hasn't done a whole lot for them except make it worse. I'm pretty upset that my L) foot is now peeling, scaly and plaque-like. I'm at a crossroads of whether to continue with the 10 mg dosage or quit at this point before it gets any worse.

Like you, I'm tempted to try anything at this point! I'm actually considering staying on the Soriatane and trying that Dermal Advantage. (After all, it says not to d/c your medication.)

I'm sorry to hear that you're digressing, especially after an improvement. I know it's so disheartening. This disease is such an emotional rollercoaster.

[SuzanneT]

It's been 9 weeks today since I started Soriatane. My dosage was decreased to 10 mg / day 2 wks ago, and about a week ago I started to flare, so upped it to 20 mg / day last Sunday (5 days ago). Here is a picture of my foot today. As you can imagine, I'm pretty bummed. This is NOT the miracle drug I had hoped it would be - at least not for me. I saw my derm yesterday. She is starting paperwork for insurance approval for Raptiva (although after reading about it from you guys, I don't think I want to go that route), but said that she's not ready to give up on the Soriatane yet. So, I guess I'll keep going, at least for another week or two. What have I got to lose? I remember telling her that I wanted to wear cute sexy shoes by summer. Well, now I would just be happy to be walking without pain by summer. What's up with all those happy people on the Soriatane website? Why am I not like them? Thanks for listening to me vent. Guess I'm just having a bad night :(
Sue

[MikeK]

Oh Suzanne! That looks so very, very painful. :( I'm so sorry. I hope and pray that you find something that gets this awful flare under control!

Mike

[jdeldrid]

I've been on Soriatane for about 1 1/2 years. I started at 50 mg/day, and have repeatedly tried to go down to 25mg/day, but always have a bunch of blisters (I have PPPP) after a month or so. I currently take 50 one day, 25 the next. The side effects, which, for me are mild, are worth having my hands and feet back. I'm also on Enbrel for my PA, for which it's worked wonderfully, but unfortunately, it's done jack for my skin.

Maybe you ought to be looking at going up in dosage before you give up on it.

-- Jaye

[ouchyk]

Suzanne,

I know so very little about PPP except it's difficult to treat. :(

I hope that you can find out with certainty that you don't have psoriatic arthritis before going onto raptiva as in some cases it can make it worse.

Ugh, commericals. :mad:

poor feet. Hope you find something soon.

Karen

[SuzanneT]

Jaye, I can't imagine 50 mg / day! The side effects from 25 mg / day were about more than I could handle! I could take everything except for the sticky,clammy skin - which I only had on my hands and feet, but it was even difficult to type! Do the side effects lessen with time? I like your idea of the alternating days - hopefully if I can get a handle on this again, I can try tapering a bit on alternating days. Maybe I just cut back a little too much. No........ I'm not going to give up yet - I had pretty good results with the Soriatane at first.

Karen, that's exactly the reason why I don't want to go the Raptiva route! I am suspecting either PA or fibromyalgia (I'm going to ask more questions in the PA forum), and I've read that Raptiva can make it worse, and also lead to other forms of p. Um... just a question? What do the numbers in your sig mean?

[strmchaser]

Hi Granny, I have read your posts about Crocs. I tried on a pair but the little pointy things hurt the bottom of my feet. Do you wear socks or something? I have PPP that has cleared with Enbrel but the bottoms of my feet are still sensitive. Is this something you get used too? Linda

[wildflowerAnn]

Hi Suzanne,
Ouch that foot looks like it hurts. I had to laugh at your observation though. I agree, why don't we look like those happy patients in the pharmaceutical commercials???

[jlfinkels]

Hi Suzanne,
Ouch that foot looks like it hurts. I had to laugh at your observation though. I agree, why don't we look like those happy patients in the pharmaceutical commercials???

I think the pharmicist accidentially gave them thorazine instead of soriatane. That would explain the smiles :eek:

-jeff

[grannyfranny]

Hi Granny, I have read your posts about Crocs. I tried on a pair but the little pointy things hurt the bottom of my feet. Do you wear socks or something? I have PPP that has cleared with Enbrel but the bottoms of my feet are still sensitive. Is this something you get used too? Linda

Linda,,have been gone,,,,so just saw this.
I started wearing Crocs in November and I did wear socks,,,black socks and Crocs all winter. I still wear socks around the house with my Crocs because I usually have medicine on my feet. I got used to the little bumpy things and they massage my feet. I know how sensitive the bottom can be, mine are still doing very well. Haven't had any pustular places for several weeks now.

[strmchaser]

Hi Granny, Thanks for the reply. I guess I should buy some and try them out. I'm so happy that you are doing so well. Are you still on the antibiotics?? What did they put you on? Linda

[strmchaser]

Sorry Granny, I just looked back through this thread and saw the answer to both my questions. Linda

[SuzanneT]

Well my derm increased dosage about a week ago to 20 mg /day, with 25 mg / day every 3rd or 4th day. My foot was really bad over the weekend and by Sunday night I could barely walk. Stupidly, I did LOTS of gardening over the weekend (hobbling around with bandaids on!) But this morning, all pustules and swelling are GONE!!!! My hand is about 90% clear, and my foot feels great, although it still doesn't look great. What a coincidence..... yesterday I received approval for Enbrel, and went for my TB test. Now I don't know WHAT to do!!! :( I'm not sure if the Soriatane has finally decided to 'kick in'? Or maybe it's just another temporary semi-clearing? Heavens knows I've been through this vicious cycle enough in the past 11 years. I guess I have a few days to research it and think about it.......... I go back on Friday to have them read the results of the TB test.

[godardgirl]

My doctor prescribed soriatane a couple of years ago and I faced similar symptons to you. My feet were peeling all the time and it was just a painful and horrible experience. Although it did ameloriate my psoriasis, at the end of the day, the side effects were too much. Knowing the other options out there today, I would never ever use soriatane again.

I'm currently on enbrel and it's a miracle drug for me. No side effects (so far) and I've been on it for almost two years now. If your doctor will not prescribe a biologic for you, I would pick methotrexate over soriatane anyday but I know that everyone has their preferences.

Hang in there and definitely discuss other remedies with your doctor.

[SuzanneT]

Thanks godardgirl, I am thrilled to hear that, as I am just waiting now for the Enbrel to arrive. I've decided to do it after a few days of researching and reading. Just curious since you've seen clearing on Enbrel - was yours PPP of P? And do you also have PA?

[SuzanneT]

Just thought I would post an update, since my previous posts were a bit negative and I don't want to scare anyone from taking this.

I am still on Soriatane. The side effects are all but gone, once I arrived at the right dosage. I'm now on 20 mg day with 25 every 3rd day or so. I'm thinking I might even ramp up a bit more. I'm still losing some hair, but nobody else notices it (except my husband and daughter who find long blond hair EVERYWHERE! and can only blame me).

Here's the good part. I have no more pustules. Haven't had any since I corrected the dosage. I still have the flaking, and still do the vaseline wrap at night. But I can walk without any pain! And I can wear sandals in public and it just looks like I have dry skin on one heel. I walked 2 miles on the bike trail tonight. My hand is 99.9% clear. I have suffered with this for 12 years and my heart goes out to anyone who has this horrible disease. This is the best I have been in 12 years, and even if it never gets any better than this, I can live with it. :)

[wildflowerAnn]

That is great news, Suzanne. I'm glad you won the battle. Hope you get a UV wand soon to save on those co-pays. Add in the gas, the time off from work and the co-pays, and UV treatment at the physician's office is an extremely expensive therapy. Glad you can wear sandals and walk without pain.
Ann

[hkowalczyk]

Suzanne,

AWESOME! I'm glad the soriatane finally worked out for you. It's almost like we're each a different experiment. Wouldn't it be nice if it was as easy as "take 2 of these and call me in the morning" :D

-Henri