How can I help my friend?

My best friend has recently been diagnosed, and I'm at a complete loss as to how to help! She's a young woman, has two small kids, is (was) an avid runner and one of the coolest people I know. This thing has TAKEN OVER her hands - like she can barely move her fingers, and it's destroyed her nails and the skin around them. I'm worried, and I feel helpless! With other conditions and diseases, one gets diagnosed, goes to the doc, gets some meds or a procedure, and it's all good....not with this. I'm especially freaked out at how quickly it's progressed - within just 4 or 5 months, her hands look nothing like they used to. AND SHE'S IN PAIN! She struggles with car seats for her kids, and bottle caps, and tying shoes - things I've always taken for granted. I can't say, "oh girl, it'll get better", or, "hang in there".... everything I think to say/do seems LAME. Helpless! Any suggestions?

It will take some time, but it will get better. Most of our meds take 2 months or more to show effect. To get on the better meds which cost in excess of $40,000.00 per year require often times requires a person to try less expensive drugs that do work, but the side effects can be horrible... Young peorple with obvious disease progression often get to skip this phase though. BUT once treatment starts to work, it changes things quickly. The best thing to do is ask her. Its simple things that make a difference. Its terribly deflating to some moms when they send store bought treats to school the first time. Getting their hair brushed out and shampoo. (lots avoid the beauty parlor because of psoriasis in the scalp) is a nice thing (I could be wrong on that that couild be a me thing. I have brushed my wifes hair almost every night since Jr high over 50 years now and dang its getting hard can't imagine if it were mine)

The biggest thing we see on these board though is isolation and the feeling of isolation. You can help her a lot with this, but please encourage her to communicate with others with the disease too. We have some young mothers here who have found ways to cope that are unbelievable.

Now the hard part, you have to be tough too. She has a new life and a new normal. She will run again, her kids will be great. she will have everything she deserves, but it will be awfully easy for to lose sight of it....

Thank you for caring about her so much. It will be encouraging to our other members. One of the things we struggle with here is to keep our friendships. Newbies (with the disease) struggle greatly with their friends. It might suprise you to know most of us know our closest friends struggle with fearing what they "say/do seems lame" But from that knowledge comes huge fear that those friends will withdraw because they feel helpless. It happens. Its nice to hear for certain their friends DO care.

It never hurts to tell your friend you may not know what to say/do but you aren't going anywhere (right before you ask her what to do.

So...as to the question about where she is in her treatment: she's seeing a rheumatologist (her second rheumatologist) and a dermatologist. She has been prescribed some antibiotics and steroid cream that give her some relief when she's on them - but she can only do the cream for 2 weeks at a time, and one can't stay on antibiotics. She's mentioned some of the drugs (and the COST of them) a couple of times, but isn't on any of them yet. She indicated that one of them causes liver damage, and she's pretty worried about the side effects of them all. She said she's going to try to get into a clinical trial in December - any thoughts on that? Are any of you aware of what she's referring to?

I can already sense the isolation - I invited her out with some friends this week - she didn't go because she was feeling crappy because of the obvious things, and then she had a reaction to the antibiotics. It sucks! I want to learn all I can so I can at least have an intelligent conversation with her, and I can have a glimmer of understanding what's ahead of her.

So if I'm reading this right, it is likely that if she chooses a good course of treatment, she could go into a type of remission? For the record, she is running a half marathon this weekend - she's a gazelle and a crazy woman! :-) My heart is breaking for her - I've never heard of this before a few months, so please forgive my freaked-out-ness! :-) It sounds like you all are fighting a good fight, and I'm grateful...GRATEFUL to have your insight!

Yes some of the drugs have some pretty severe side effects (liver) listed. MOST are over-hyped lawyer talk and the stuff of internet Urban legends. If you are taking the "nasty drugs" your liver and kidneys are monitored closley and at the first sign of trouble drugs are changed and the effects reverse themselves. Real damage is virtually unheard of (except on the internet) NSAIDS like aleve, ibuprofen etc taken as OTC drugs on the other hand do cause trouble. The simple fact is she has much more to fear from the disease than she does the meds. Without treatment she will be permanently and irreversably damaged. PsA is not just a disease of the joints but also can go after every organ in the body (heart, lungs, pancreas etc) Without aggresive treatment it is by far the most serious of all the 213 kinds of arthritis. It can not be treated by diet, life style or purple paint.

Yes there are a couple of clinical studies recruiting right now and she might actually qualify for one as she has never taken MTX or another biologic. Please talk her out of it. They are Stage three trials so the drugs are safe BUT she only has a 1 in three chance of getting the real drug. she has a 2 in 3 chance of getting either a placebo or a different (and likley less effective drug) A young mother has no business taking that kind of chance with her health.

As I said earlier biologic treatment is forty grand a year BUT every drug company has a program to cover copays deductibles and/or the cost of the drugs if no insurance exists. the fact is for most of us Biologic treatment is less expensive than any other.

Yes people her age do sometimes go into total remission for years at a time. 90% of us respond well to treatment (eventually) allowing us a mostly normal life.

WOW - I really, really appreciate all of the information and insight - as you might imagine, it's priceless. My friend does have a pretty high pain threshold, but more than that, she's hard-headed! :-) She hasn't trained for the event because of this, and she's not yet having serious/consistent joint pain. It's mostly her hands that are affected, with more minor issues on her hands and at the back of her scalp.

She seems to be excited at the idea of the clinical trial, and I initially encouraged her to go for it.... gotta rethink that, given the information you just shared.

And you all have given me a little light - I like the sound of "responding well to treatment".... I really shouldn't just randomly search the Internet, because the info I've read looks pretty damn bleak. You all sound so very solid - it's cool you've set this site up to help and encourage each other (and me!). I've encouraged her to find a support group, but she's not really embraced that yet.

I think her husband is in denial - she's a rockstar, and does so much, I think he's in disbelief that she may have to take off her cape for a time.

I will keep checking in here, and I'm so glad I get an email when someone posts to my question - you all ROCK!

You, Learn2, are a the most fabulous, awesome friend! I won’t repeat what the others have said, but I will give you one of our mantras here: fear the disease, not the drugs. Psoriatic arthritis can be mild, but make no mistake about it: when it’s severe, it can do incredibly bad damage, and quickly. For her sake, and the sake of her family, please encourage your friend to seek the most aggressive treatment that her rheumatologist will give her.
And here is something else you can do for her. Get the book I recommend in “Book Reviews”, above, and share it with her. The kindle version is a bargain. If you don’t have a kindle, get the free kindle software so that you can read it on your PC or your tablet.
Your friend is so very lucky to have you standing by her. You’re an inspiration!

Wow...what an amazing friend you are! I have nothing to add as you have received wonderful advice right here! However I can say, I'm also an avid runner and currently working on managing my disease.

Learn2 said:

WOW - I really, really appreciate all of the information and insight - as you might imagine, it's priceless. My friend does have a pretty high pain threshold, but more than that, she's hard-headed! :-) She hasn't trained for the event because of this, and she's not yet having serious/consistent joint pain. It's mostly her hands that are affected, with more minor issues on her hands and at the back of her scalp.

She seems to be excited at the idea of the clinical trial, and I initially encouraged her to go for it.... gotta rethink that, given the information you just shared.

And you all have given me a little light - I like the sound of "responding well to treatment".... I really shouldn't just randomly search the Internet, because the info I've read looks pretty damn bleak. You all sound so very solid - it's cool you've set this site up to help and encourage each other (and me!). I've encouraged her to find a support group, but she's not really embraced that yet.

I think her husband is in denial - she's a rockstar, and does so much, I think he's in disbelief that she may have to take off her cape for a time.

I will keep checking in here, and I'm so glad I get an email when someone posts to my question - you all ROCK!

Actually rumor has it Tara Lynn is more than an avid runner but is a world class marathoner.......

All that aside that does bring up a thought. As much as I like to be anonymous, I'll share this story anyway. Three of my kids were major athletes. They are adopted so (they didn't get the genes from me) My son was on the Olympic soccer team and was injured from a kick during a slide tackle that split his kidney. With complications etc he dang near died. (Coded twice over a weeks period) and my daughter was on the pro tour (tennis) after a big college career (NCCAA champion) My other son played football through college and played a year on a scout team in the NFL

I learned some things about athletes. Their bodies are like high performance sports cars. It take very little to throw them into a tizzy (pain isn't a big deal) I'm not talking about things being wrong necessarily. Everything affects their bodies from medications to pizza. And they can tell something is different and they DON'T like it. When dealing with these type folks in regards to chronic illness, I have noticed they have a habit of putting off treatment ESPECIALLY medication. But we need to impress on them thery have more to fear from the disease that they will NOT be able to overcome with help than the medications that will help them

I understand the meds a bit. If the phone rang at our house early, it was generally one of the kids being called for a random pee test.They were afraid of everything. But anything that effects how they feel in any way or has the potential to scare them BADLY. The conversion from athlete was tough.

My soccer player never did adapt. Hes in Alaska swimming in a bottle. My football player became a teenager and had to grow up again the physical toll as a defensive end still plagues him, but my daughter went through a couple of years of pain everywhere as her body started to wind down. She adapted with work (lots of work) Mentally she did pretty well. One day shes playing Serenna (lost but played her) then shes coaching in Kansas and then she loses a match on the community courts to a dr's wife 20 years older than her in the "old ladys league" (I warned her about those gals) And she did over come the pain. (She also had the help of a sports psychologist where she went to law school)

To imagine what these folks go through with their bodies just look at this picture and imagine being OCD in fact we all should react some. And then imagine you can only fix one thing (maybe) but you have to wait until you fix another. Now thats something we ALL go through with our symptoms but imagine every one of those pencils being out of place to a truly OCD person. Imagine how trhis disease must effect someone with a finley tuned body


You make some really good points, some that really ring true as it relates to my friend. She loves to run, and even when she can't actually TRAIN for an event, she'll go out there and kick some butt in whatever race.... it's kind of awesome, and kind of crazy at the same time. I'm several years older than her, so I've come to grips with "I can't do that and live to tell about it"!

I hear the pride (and pain) in your voice about your kids - sounds like there's been a lot of joy intertwined with the ups and downs of the maturing process. I have teenagers, so I am getting glimpses of some of that now.

I feel like I've been in some sort of denial - like, this can't really be something that's going to effect her the rest of her freaking life - she's to young!

I am going to make a point of talking with her about her treatment this weekend, and I'm going to encourage her to join this community - I think it would be really good for her to communicate with people who actually KNOW what's up, (experiential knowledge), versus doctors who have the head-knowledge.

Again, thank you! If you have additional thoughts, or questions I should be asking her, bring 'em!!!

We would love to get to know her, and I'm so glad you decided to join us! This PsA thing is tricky, but manageable. Just remember there will be good days, bad days, and some REALLY REALLY bad days. If she is anything like me, on those mini-hell days, she will isolate and not talk to anyone about it (well, me before I found this website, anyway). This will be your clue that things are going way off course, and also your cue to step in, go over and make dinner for her family. One of the most wonderful things anyone has ever done for me was to do exactly that. I was in a great deal of pain and hurting emotionally as well, and a person that I knew (not a really really great friend, but a friend) heard it in my voice over the phone. She stopped at the store for groceries, came over to my house, sat me in a chair with a hug and told me not to worry - she had dinner that night. Best Hawaiian chicken I ever ate! When she saw I was having a hard time with my hands, she prepared it already cut up in bite sized pieces. Now that I've moved to another state, I've lost contact with most of the people I used to know, and that has been the hardest thing for me.

The most important thing for you to know is there are no "right" and "wrong" things to say. Just say what is in your heart. The love you feel for your friend is apparent in everything you say about her, and I only wish I had a friend like you.

Me to a T! I avoided being proactive and managing the disease for years, looking for a quick fix to deal with a flare and get back at it. Unfortunately that only works for so long and looking back I wish I would of managed the disease :-)

Like you said Lamb, I feared meds and not the disease until it came to the point of no return. The flares happened more frequently, to the point I couldn't function. Reality check! I had no idea what I was dealing with as I really was oblivious to what I was dealing with.....until I found this site and became more informed. Let's face it, I've had a lot of sitting around time...started researching...maybe too much!

This site has been life changing for me and I'm so grateful for the knowledge shared because it has certainly been enlightening and has hugely impacted not only how I feel but how I am dealing with treatment.

One more thing....I have only ran one full marathon :-) I missed qualifying for Boston by 7 min and have often thought about running another. I did place 1st in a 20k race during my training for the full. :-) I think I will stick with running half marathons as the training is a lot less work and you still finish winning a lovely medal.

Great post Lamb, thanks for sharing :-) again I am enlightened!

tntlamb said:

Actually rumor has it Tara Lynn is more than an avid runner but is a world class marathoner.......

All that aside that does bring up a thought. As much as I like to be anonymous, I'll share this story anyway. Three of my kids were major athletes. They are adopted so (they didn't get the genes from me) My son was on the Olympic soccer team and was injured from a kick during a slide tackle that split his kidney. With complications etc he dang near died. (Coded twice over a weeks period) and my daughter was on the pro tour (tennis) after a big college career (NCCAA champion) My other son played football through college and played a year on a scout team in the NFL

I learned some things about athletes. Their bodies are like high performance sports cars. It take very little to throw them into a tizzy (pain isn't a big deal) I'm not talking about things being wrong necessarily. Everything affects their bodies from medications to pizza. And they can tell something is different and they DON'T like it. When dealing with these type folks in regards to chronic illness, I have noticed they have a habit of putting off treatment ESPECIALLY medication. But we need to impress on them thery have more to fear from the disease that they will NOT be able to overcome with help than the medications that will help them

I understand the meds a bit. If the phone rang at our house early, it was generally one of the kids being called for a random pee test.They were afraid of everything. But anything that effects how they feel in any way or has the potential to scare them BADLY. The conversion from athlete was tough.

My soccer player never did adapt. Hes in Alaska swimming in a bottle. My football player became a teenager and had to grow up again the physical toll as a defensive end still plagues him, but my daughter went through a couple of years of pain everywhere as her body started to wind down. She adapted with work (lots of work) Mentally she did pretty well. One day shes playing Serenna (lost but played her) then shes coaching in Kansas and then she loses a match on the community courts to a dr's wife 20 years older than her in the "old ladys league" (I warned her about those gals) And she did over come the pain. (She also had the help of a sports psychologist where she went to law school)

To imagine what these folks go through with their bodies just look at this picture and imagine being OCD in fact we all should react some. And then imagine you can only fix one thing (maybe) but you have to wait until you fix another. Now thats something we ALL go through with our symptoms but imagine every one of those pencils being out of place to a truly OCD person. Imagine how trhis disease must effect someone with a finley tuned body


TaraLynn, in my book, even a half marathon is world class! You’re now running in a completely different league, and you will reach your goal!

I am wired to keep going mentally, regardless of what my body wants. I have to start thinking of a happy medium. Right now I'm not able to run, however it's always nice to think that one day I may be able to again :-) I've been doing some hiking and my husband and I purchased snow shoes so that we can continue our hiking adventures:-)

That's awesome that you were sailboat racing! I have a friend who races, as well as his son! My husband took sailing lessons. He wants to buy a sail boat and live on it for a year...nice to dream :-)

I actually work on a ship and am trying to get my disease managed so I can be cleared to get back to work :-)

Exercise is totally good for the morale! It's important to remain active, however I'm realizing gentle lower impact exercise are the best.

CA-Lynn said:

I admire your determination, TaraLynn.

So many people with the disease automatically assume they can no longer participate in certain activities Nothing could be further from the truth. OK, so you can't run the extreme marathons all the time, and I can't be part of a sailboat racing crew anymore without being a liability, but it sounds like we've each found ways to keep involved at some slightly modified level and manage to have a ball doing it. Nothing could be better for the morale!

Must. Fix. Pencils. Now.



tntlamb said:

Actually rumor has it Tara Lynn is more than an avid runner but is a world class marathoner…

All that aside that does bring up a thought. As much as I like to be anonymous, I’ll share this story anyway. Three of my kids were major athletes. They are adopted so (they didn’t get the genes from me) My son was on the Olympic soccer team and was injured from a kick during a slide tackle that split his kidney. With complications etc he dang near died. (Coded twice over a weeks period) and my daughter was on the pro tour (tennis) after a big college career (NCCAA champion) My other son played football through college and played a year on a scout team in the NFL

I learned some things about athletes. Their bodies are like high performance sports cars. It take very little to throw them into a tizzy (pain isn’t a big deal) I’m not talking about things being wrong necessarily. Everything affects their bodies from medications to pizza. And they can tell something is different and they DON’T like it. When dealing with these type folks in regards to chronic illness, I have noticed they have a habit of putting off treatment ESPECIALLY medication. But we need to impress on them thery have more to fear from the disease that they will NOT be able to overcome with help than the medications that will help them

I understand the meds a bit. If the phone rang at our house early, it was generally one of the kids being called for a random pee test.They were afraid of everything. But anything that effects how they feel in any way or has the potential to scare them BADLY. The conversion from athlete was tough.

My soccer player never did adapt. Hes in Alaska swimming in a bottle. My football player became a teenager and had to grow up again the physical toll as a defensive end still plagues him, but my daughter went through a couple of years of pain everywhere as her body started to wind down. She adapted with work (lots of work) Mentally she did pretty well. One day shes playing Serenna (lost but played her) then shes coaching in Kansas and then she loses a match on the community courts to a dr’s wife 20 years older than her in the “old ladys league” (I warned her about those gals) And she did over come the pain. (She also had the help of a sports psychologist where she went to law school)

To imagine what these folks go through with their bodies just look at this picture and imagine being OCD in fact we all should react some. And then imagine you can only fix one thing (maybe) but you have to wait until you fix another. Now thats something we ALL go through with our symptoms but imagine every one of those pencils being out of place to a truly OCD person. Imagine how trhis disease must effect someone with a finley tuned body


Encourage your friend to come visit us. We are really nice (except, Lamb and his damned pencils). This group has helped a lot of Type A , power women learn to live within their new normal. That’s been really hard for me, and this group has saved me from myself. If you can get her to peruse the site once, she’ll be hooked.

:slight_smile:



CA-Lynn said:

Actually, it disturbs me that the sharpened pencils aren’t to the far right and the unsharpened ones to the left. All erasers should be in perfect alignment!!! HOrror of horrors, one pencil is upside down!

Never mind the pencils. I’m still stuck on purple paint.

wait....purple paint? Did I miss something? lol

It may be a side effect of brain fog, but I get distracted like a 5 year old sometimes. Lamb has me thinking about what ways to use purple paint
518-image.jpg (648 KB)

Everybody knows if you paint yourself purple, dance naked under a full moon while licking frogs, you will be cured of PsA.

Its right up there with the other 40 cures we have suggested every week by friends and neighbors. You know such as eating tumeric, not eating tomatoes, copper braclets, nude sun tanning, etc.