Question for those of u suffering from PA

[LavenderRobin]

Hi everyone this question is for those of u who are suffering from pa. Ive had pustular p for the past 3 years now. I just recently started on enbrel a little over a month now,but just the other day on christmas i experienced the worse pain ever where my p is on the feet. I noticed in the morning my feet were very sore didn't think nothing of it figured cause my feet are usually sore from this,but anyways shortly after having christmas dinner with my family and a few cocktails my feet became very painful where i couldn't stand or walk,they were burning,sore,a tightness feeling,a stiffness feeling that i never experienced before. It was so bad that i actually had to sit for the rest of the day at my familys house it was so bad,and i litterally had to be helped out to my car to go home. It was soo bad that i was ready to go to the hospital... but not having the greatest health insurance i decided not to and to just call my doctor the following day.. But my question is to people suffering from pa are these systoms that i am experiencing? I have an app. with my dermatologist tomorrow afternoon which i am shocked cause i usually can't get in that fast,but they were concerned that i wasn't able to walk very well. my concern was maybe this was a side effect of the enbrel i have been taking so i wasn't sure. Any information would be greatly appreciated.

[spitball]

I am switching from Raptiva to Embrel soon and have been reading up on it as much as possible. I have not read anything such as you are going thru, but that doesn't mean it is or isn,t a reaction to the Embrel.

I have noticed that all my doctors,derm, rumy, general, pay very close attention to me now that I am on a bio drug, getting me in as soon as I call.

I was in the hospital for 5 days with a infection while on Raptiva, lots of joint pain that I never had before.

Wish I could help, you are doing the right thing getting to your derm as soon as possile, I know how fast things can develope on these bios.

Maybe someone else will chime in with more info, please keep us informed.

Dennis S

[Dulane]

I don't know about Enbrel, but all the crap I eat during the holidays makes me ache.

I don't even eat that much...but sugar, wheat and alcohol are sure problematic for me. The day after Xmas was an eye opener. Like...since I know better...why do I do it?

I've got aches in my shoulders and neck...lower back, knee. And NO energy.

Nobody feels very sorry for me...since I've told my family about my diet for several years.

It'll be salads and brocolli, etc. at my house for the next couple days.

:(

[MaryJean713]

and a few cocktails my feet became very painful where i couldn't stand or walk,they were burning,sore,a tightness feeling,a stiffness feeling that i never experienced before. It was so bad that i actually had to sit for the rest of the day at my familys house it was so bad,and i litterally had to be helped out to my car to go home. It was soo bad that i was ready to go to the hospital... .

Hello LavenderRobin:

I am also on enbrel with P and PA, my PA started with pain in the top of my feet. Your description sounds EXACTLY like what I deal with when it gets bad in my feet.

Get to your rheumy- and quick.

Also, cocktails make my feet swell- which makes my PA worse. I have had to learn (the hard way) to take it easy on the alcohol, especially in cold weather.
I know that during the holidays, nothing is better than a cold beer or a hot toddy, but I have learned to keep it in moderation- for more reasons than one!

I hope you get to feeling better soon,
MJ

[forestal]

I am also on enbrel now 2x/week for PA, never had much issue till lately with P, but the cold is my worst enemy now, worse than the rain used to be
hopefully your pain will calm down soon

[LavenderRobin]

Thank you all for the replys to my post. I went and seen my dermatologist yesterday,things went ok i guess..but he looked at me like i was nuts cause i asked him if i was experiencing pa,he asked where i got that idea from. I also thought maybe i was getting a side effect from enbrel cause i have only been on it a little over a month and never experienced the pain i did the other day. I told him i went online and i was reading up on pa and that i was expeirencing the same symtoms that i read online about it. Plus he was like lecturing me saying i should not beleive everything i read online to be true. That why was i thinking enbrel was doing this... I now way said that but i was asking if this could be a side effect cause i already experienced brusing in the abdomen from where my injections were,so how does one know whats going on ..So i ask alot of questions so i can be familiar and educate myself and maybe help someone else who is wondering the same thing i am.. so anyways he prescribed some dovonex & betamethasone for the next 10 days and to continue my enbrel twice a week like normal and come see them in 10 days. My best bet now is to make an appointment with a rheumy like some of u have suggested so i can get to the bottom of this cause i never wanna experience the pain i did a few days ago and find out i have joint damage already.. but anyways my next question is would i need a referral from my derm to go to a rheumy? cause my derm said i would not need to go to one to just continue what i have been doing and i'll be fine. I have been feeling better but my feet are still very sore. Any info would greatly be appreciated.

Sorry for all the venting,just a bit fed up with this p. Plus i'm sick again just got over a bad cold 2 weeks ago and i'm sick again with a cold/flu.

[elveeh]

LavendarRobin,
No apologies needed here for venting. Seems perfectly reasonable to me to vent when yr dealing with 2 colds/flus and feet too sore to walk on.

I don't understand your derm's reluctance about you seeing a specialist--and in a non-derm field, no less.

By definition, a derm is not trained to diagnose arthritic conditions or to treat colds and flus. Unless your derm also specialized in rheum and in internal medicine and is your PCP, then your derm probably doesn't have much say about whether you see a rheum or any other kind of dr.

Depending on the terms of your health plan, you may need a referral from your PCP to see a rheum, or, your plan may allow you to "self-refer," by making an appointment with a rheum yourself. If you have a PCP, consider starting there--get those 2 colds dealt with and maybe ask if the Enbrel should be suspended until you're cold or flu-free.

I wish you luck, good doctors, and relief in the New Year! ;)

[ouchyk]

I told him i went online and i was reading up on pa and that i was expeirencing the same symtoms that i read online about it. Plus he was like lecturing me saying i should not beleive everything i read online to be true. .

Robin,

I do agree with your derm as far as not believing everything you read on line to be true. There are people who would want you to believe such non-sense that it's way past ridiculous going on dangerous.... :eek:

That said, what you posted is not in the realm of the above, you asked him if you could be experiencing a side effect from Enbrel or if you could have the start of PA.

I agree with others who have posted about seeing a rheumatologist. Elveeh is right, a derm is not a rheum... there are only three dermatologists in the US that I know about that hold licensing in rheumatology. A good dermatologist will ENCOURAGE you to get looked at if your experiencing issues...

Hope that you feel better,
Karen

[MikeK]

Hi Robin,

I'm sorry to hear that you're going through such a rough time. :(

Why don't you give Eliven Service's a call and ask them if the symptoms you are experiencing are a possible Enbrel side effect? According to their website, you can:Talk to a nurse

When you have questions about therapy with ENBREL, we're here to help. The toll-free Enliven® Services line is staffed by registered nurses who can answer questions ranging from injection techniques and sharps disposal to concerns about side effects and traveling with ENBREL. To speak with a registered nurse, call Enliven® Services toll-free at 1-888-4ENBREL (1-888-436-2735) 8 am to 11 pm Eastern time, 7 days a week.Source: http://www.enbrel.com/psoriatic-arthritis/enliven-services.jsp.

I'm going to give you an excerpt from a "must read" post that JesseLou posted in response to a thread called "How do I get doctor's to listen?". She discussed the questions that must be asked and the tests that must be ordered whenever PA is suspected:

First, fire any doctor who tells you he knows everything, you know nothing, and/or who implies you're a nut case. And tell them personally - not the nurse or receptionist - why you are firing them, with details - no threats, just facts.

Second, when you go to a rheumy - this one or the next one - go armed to the teeth. Write all your symptoms in chronological order, so you can detail the history of the disease. Be as precise as possible about the kind of pain/discomfort you have, and what seems to cause it.

Third, know what tests you want done, and don't take no for an answer. You want: x-rays of all involved joints and all your major joints, because these will show, if you have any, something called enthesitis, which is the PA attacking places where soft tissue attaches to bone. You want blood tests that include SED rate (usually normal with PA, high in RA) CRP (measures inflammatory levels in the body) and HLA B-27 (the genetic marker for PA which only 50% of us have - I don't). If you have a swollen knee, ask the doc to aspirate fluid from it and send it to a pathology lab to determine if it is psoriatic. Next time you go to a derm who is on the fence about your diagnosis, tell them you want a skin biopsy done NOW. These are definitive for psoriasis, so there's no excuse for not knowing exactly what it is on your skin.

Be sure to use the words enthesitis, SED (pronounced like a word, not initials) CRP (initials) HLA B-27, aspirate, pathology, skin biopsy. This is doctor language, and when a patient comes in using it, they know you've done your homework already and they'd better wake up. Also be as specific as possible about what hurts, how much, and when.

What you should not do: don't get emotional or angry; don't talk about vague all-over aches and pains and don't mention it if you're sleepy all the time or depressed - the tendency is to label these things as the cause, rather than vice verse.Source: http://www.psoriasis.org/forum/showthread.php?p=74786&highlight=question#post74786.

You asked:My best bet now is to make an appointment with a rheumy like some of u have suggested so i can get to the bottom of this cause i never wanna experience the pain i did a few days ago and find out i have joint damage already.. but anyways my next question is would i need a referral from my derm to go to a rheumy? cause my derm said i would not need to go to one to just continue what i have been doing and i'll be fine.I agree that you probably should see a rheumy. Whether you need a referral depends on your insurance. Even though my insurance does not require referrals, I see a rheumy that my derm referred me to. I figured the two of them may need to work together at some point. (I have mild intermittent PA that I currently treat with Advil as needed.) Since your derm seems reluctant to send you to a rheumy, you may need to find one on your own. It can't hurt to get a second opinion from another derm. I've read here (and have also been told by friends) that some insurances require referrals from a patient's primary care doctor.

I read in another post that you live South of Chicago. I have a friend who recently moved to Indiana from the Southside. I'll send her a PM and ask her if she can give you the name and contact information for both her derm and her rheumy. (She worked in the City, so her doctors may be located some distance from you.)

I hope this helps!

Feel better.

Mike

[Kimbercat]

It's really sad, but unfortunately true, that there are still derms out there who aren't aware of the connection between p and pa. :( Sounds like you had the misfortune to meet one of them. If you continue to see this derm, you might want to print out some of the statistical information here on this website to show your derm, and help educate him for the next person to ask this question in case that person isn't savvy enough to question him about the connection. You've received great advice from some of the others here, and I hope you will follow up with a rheumy. Good luck. :)

[Allie]

I read in another post that you live South of Chicago. I have a friend who recently moved to Indiana from the Southside. I'll send her a PM and ask her if she can give you the name and contact information for both her derm and her rheumy. (She worked in the City, so her doctors may be located some distance from you.)


LavenderRobin,

I am not sure where exactly you live, but I used to live in Crete, IL. My Derm was located in Tinley, his name is

Dr. Manuel Mesirow
18425 West Creek Dr
Tinley Park, IL 60477

708-444-8300

Dr. Mesirow is an outstanding if somewhat stiff Derm. He is very experienced at treating both p & pa.

Now I live in NW Indy, so if you need a recommendation over here, I can give that as well.

Good Luck!

[Glennmaroney]

I got a referral from my family Dr. for my Rhem. maybe you could try that. Also any Dr that dosen't want you to seek a second opinion should not be your Dr. for much longer.

[baldwin123]

I agree with everyone here, that you should look for a rheumatologist and talk to your primary care doctor... don't mind what the derm said- maybe he doesn't know a lot about PA...maybe the pain you have isn't PA but you are right to be on the lookout, and pain that bad should be checked out at any rate... what you described does sound like PA pain I have experienced, but there can be other causes for pain... a good rheumy can let you know what the cause might be... don't ever doubt yourself for asking questions! Follow your gut, and keep speaking up for yourself! Good luck, hope you are feeling much better in this new year! :)
Jen

[LavenderRobin]

Hi all! I'm back to update u all of my condition. I went and seen my derm again after 10 days and i was informed i had a small some what infection on one of my feet,the other was not as bad.. go figure... thats supposely why i was experiencing pain she said. I asked her since she was not the one i had seen 10 days ago if i was experiencing pa cause my feet are still very sore and very painful,she gave me some anitbotics and took me off enbrel until i see her again next week,plus gave me several anitbotic ointments and creams to put on several times a day. I had asked her if she could refer me to a rheum,she turned around and asked me why would i need to go to a rheum. I said to her that i have been doing some research online and off that i am experiencing the same symtoms i read about pa,the stiffness,the tightness,very painful feet and sor forth... well she said its not exactly your bones it could possibly be the tissue thats causing the pain, to be honest i don't think its the tissue its my bones i think. Well anyways shes like lets see how u are doing in the next week and come back and see me..told me take some Motrin for the pain. That doesn't always seem to help cause the pain still keeps coming back,maybe i need something stronger? But anyways when i go back and see her and i'm still experiencing the pain which i am everyday now from morning til i go to bed i will confront her again about a referral if she isn't gonna cooperate with me i will go and see one on my own and never go back there again.

Sorry for all the venting it just gets me mad when u pay all this money to go to a derm to get help and support,they look at u like u are nuts. Thank u all for the replys on my posts i really appreciate it. U all have been a great support for me with coping with this disease.

[nla]

You've already gotten great advice here from everyone. I agree....you should definitely get into a rheumatologist ASAP. If, for no other reason, to set your own mind at ease. Since you have P you are at a greater risk for developing the PA.

I have had pustular P on both hands and feet for about 15 years now. I have gone to my current derm for about 6-8 years now. Never, ever a mention of possibly developing PA. Anyway, the last several years the first two fingers on each of my hands started to become quite visibly swelled and crooked. Like a fool I totally ignored it. I also had some unexplained back/hip pain the last few years. Did a bit of PT (from my PCP) and basically ignored that, too. About 3 years ago I woke up with the worst swelled hands in the world. I could not even pull my blanket up over at me at night in bed. It felt like every bone in both hands was broken. (Keep in mind I use a computer for a living :eek: ). Finally went to the derm who said "ya, perhaps you might want to see a rheumy". Of course, I HAD TO ASK if I should see one! Then I went to my PCP for some xrays and lab work and off to a rheumy. By the time I got to a rheumy I already had permanent damage to my 4 fingers. She could not believe I never saw a rheumy before. Moral of this story is DO NOT WAIT!! Don't be like I was and wait until you have permanent damage and disfigurement. In hindsight I can't believe I was that stupid! I am normally quite an intelligent person and I actually do a bit of work with medical stuff so I have some working knowledge in that department. Perhaps it was denial on my part. Only wish I had a doctor who INSISTED I see a specialist way before I did.

Good luck. If I could offer any advice, it would be to take charge of your own medical care and SOON!

I do hope you feel better soon and get some answers. Bottom line is, it could be ANYTHING but you need to find out WHAT is causing that pain. Pain is a warning signal for SOMETHING.

Take care and please keep us posted.

Nancy

[nla]

I just had a brief "afterthought". While everybody is different, you might also want to consider paying attention to any meds you are taking. For me anyway, Motrin, Advil or any beta blockers really make my P worse.

Nancy

[RichJ]

hi robin,
i hope you are doing better. i some times feel the same way. i don't think its the tissue its my bones i think. my knees get like that and it feels like it the bone. the last couple of days. my little toe on my right foot. loses it feeling. it feels like it;s sticking though my sock. but there is know hole in my sock. it's just wierd.

try and have a good day all

richard

[mamaooch]

Robin,
I agree with Nancy, don't wait until it is too late and you have damage to your joints. I was misdiagnosed 2 years ago with costochrondritis (inflammation of the ribs), the extreme pain never went away. I had to finally ask to see a rhemy, by the time I saw him, my ribs were damaged and disfigured. The PA progressed to other joints including my neck, lower back and hips. I am finally seeing improvement with Remicade and MTX.

It is so important to take control of your own treatment and research your options. It is good to make sure what is going on for your own health and peace of mind. If I had not asked to see a rhemy when I did, I am sure I would probably be in a wheelchair.

Take care and keep us posted!

Best wishes,
Cindy