I’m new and have a question. | Arthritis Information

 

I suffer from psoriatic arthritis (PsA) and have visited the section of this site devoted to the topic. Unfortunately, the place is a bit on the quiet side. One of the members there indicated that many PsA sufferers participate in this RA section. I've been scanning past posts and haven't seen any mention, and did a macro search for PsA and the search timed out.

So, my question is: is this a good place for PsA folks? I understand that the symptoms of PsA and RA are somewhat similar and the treatments are also similar. I'm on Humira, methotrexate, and steady diet of various anti-inflammatory and pain meds.

Or, can anyone recommend another site that might be suitable?

Thanks for any input.
I have RA not PsA but I think I've seen a post or two by people with PsA.  I just wanted to say hi and welcome.  You're welcome to hang with the RA kids if you want. :)  If you'd rather find another site there was a post not too long ago that listed a bunch of RA sites-- some of them might have PsA forums attached.  Good luck and have a wonderful day.

I think there's some people on here with that. I'm pretty sure there is. I can't think of them off the top of my head though.....you'll have to forgive me. When I first saw your username I thought "Public Service Announcement Geezer?!?!?!?"

I've had far too much caffiene!

My vote, is that you stick around and join us!

Hi Geezer, this is a wonderful site to hang out. Some people here suffer from PSA and the treatments are pretty much the same. So stick around. Someone will come along that has it and can connect with you.

take care and welcome

CinDee

Hi, PsAGeezer, and welcome!!

I think there are some members here that have both? I'm sure you can ask any questions you may have - someone here will know the answer and be able to help you out. I'm sorry I don't have any info about PsA myself. Of the drugs you're taking, methotrexate is the one I'm really familiar with. I don't know of any forums off hand that would be suitable but I'm sure Google could help you out. Self-proclaimed google junkie here.

Welcome to the group! I hope you'll stay a while and chat us up. Have a superfantastic and comfortable evening!

Hi and Welcome.  There are several of us on this site who have PA, some alone and others in combo with other auto-immune diseases.  Sometimes the other sections get lost and I'm sorry for that.  I usually try and respond on the PA section but I've been lazy this week and very busy.  Shelly should be along soon. 

This is a good place for PA ,and your right, treatments and symptoms are many times one and the same.  I've had RA and PA for 10 years and at this point I can usually tell which one is active.  For me PA has been far more painful and constant than RA. 

Looks like we're on the same meds.  Post and let me know how you're doing.  Lindy

Hi PsA!!  Yes, I know their are people here with that.  Unfortunately I can't think of exactly who.  Please stick around though, I think you'll be happy you did.  And you are certainly welcome here.

I have PsA or PA and I feel like a geezer, does that count.  Yes, we hang out here most of the time.  Yes, the PA sight is pretty dead most of the time.

You are on what I started with and now I have moved on to Remicade.  I cannot take anti-inflams, because of a huge allergery.  So, I get just plain pain relief without the benefits of reduced swelling.  Be careful not to stress the tendons when you are in a flare.  The biggest difference for us and the RA people.  PA is harder to control and harder to get into any appreciable remission.  Also, with the tendon involvement we are more likely to hurniate the tendons.  You need to be paying attention to your body and back off when you are swollen.  I have seen hyrniated tendons and it is absolutely gross and extremely painful and hard to fix. 

Lindy and I are in and out of here, and I think there are a couple of more people, but it has been a very long and painful day for me.  Take care and ask away...we are here for ya. 

Hey Geezer!

The problem with your search is you are using the new hip and trendy PsA term.  Try PA.  You should hit a few threads within the last month.

It's all the same disease, I think, just slightly different manifestations.

Hugs and welcome!

Pip

Hi all,

Thanks for your warm welcome.

Pip -- it's been a while since I've been called hip and trendy. lol I searched for "psoriatic" and didn't think to search for "PA".

Shelly -- Here's a quick synopsis of my situation.

= 63 (i.e., geezer lol) - happily married to second spouse, 3 kids, 7 grandchildren.

= Ran a solo marketing research business for 20 years

= PA symptoms came on gradually (primarily spondylitis, fatigue, tendon problems, depression). Complicated by severe osteoarthritis in feet and back. Got harder and harder to operate my business and things spiraled down.

= Four years ago, ended up in a psych ward for a week with full blown mania/psychotic episode after an incompetent med psych Rxd too much Effexor, notorious for kicking people into mania. Followed by months of rock bottom depression and acute anxiety. With help of my devoted wife, and a new med psych, climbed out of the black pit.

= Self-diagnosed my PA from reading info on the Internet -- a couple of docs were clueless and another pompous jerk even laughed at my self-diagnosis. Finally hooked up a top notch rheumatologist. My wife and I cried when he confirmed my Dx.

= Started on methotrexate alone, added Enbrel, have had better results with Humira. Also use marijuana twice daily, which has helped more than the FDA-approved Rxs. Gradually regaining my health and becoming more active. Yoga and massages help a lot.

= Collecting disability since 2004 from SS and a personal insurance policy (long story here).


I know a fair amount about PA and don't have a lot of questions, but was hoping by joining a forum, I might pick up some useful info and personal insights from fellow sufferers. I've already learned something from you, which is that you can have both RA and PA. You mentioned you could tell the difference in symptoms from the two diseases. Could you please elaborate?


Hi PsAGeezer, welcome to the board. Sorry you have to be here.

I use MJ about once a day, but not many other people here do. All the other drugs have a lot of takers, though, so this board should be a good source of company and information.
Gimpy-a-gogo39422.0589583333

For me there are differences in pain.  RA pain is inflammation around the joint area with pain.  PA pain is just a deep throbbing pain without inflammation.  The pain never goes away.  I also have severe finger long bone changes from PA.  These changes are very distinct on xray and only PA causes them.  I think the doctor labeled the changes as cup and pencil changes.  PA also has affected my ankles and feet along with RA.  I have PA in my back  along with RA/OA. 

I've been on Enbrel, Remicade and now trying Humira.  I know I'm working backwards with meds but we're searching for something that will slow the disease process.

I'd use MJ if we didn't travel as much as we do.  We're retired and travel extensively so I don't think having a baggie would be acceptable.  I'd have to have all of you chip in and bail me out.  Lindy

Perfect elaboration of how it feels, Lindy...couldn't have said it better myself.  The docs are not sure about RA or Lupus with me, because I have symptoms of all three, but blood work is just below the treatable level. 

I suffer from OA as well as PA, and that much is confirmed.  The thing that stinks for me is not having the use of Anti-inflamatories...so I never get a break from pain or inflamation until the evening when I take my narcotic.  I do have inflamation, but I don't know if that is the RA creeping up or not.  Mind you I have not been controlled in nine months of trying either.  My life is kind of like Ground Hog day. 

Thank you for sharing your history, and it sounds like we are trying the same holistic approaches, except I do not live in a place that would allow medical MJ, and my hubby being a drug and alcohol counsellor for the gov. it probably would not be a great move for me.  I am glad you are here, and hope you stay to chat more. 

Hi and Welcome Geezer!

I have RA but have taken all you have as well.  I was on Enbrel and now am on Humira and mtx.  I hope they give you some relief!

White on white?

Hello and welcome to AI...The RA board seems to be where everyone migrates...Feel free to post away...There is always somebody around that can answer any questions you may have, or just to be somebody to vent to.

~Shannon~

Still finding my way around bumping things in the dark. Thought no one  was replying until I realized that there was a second page. lol

Gimpy-a-gogo - cool name, makes me laugh.

(Haven't figured out the font thing yet, but have noticed that there are some real SHOUTERS in here who even see the need to shout in COLOR and VERY BIG. And, the usual quota of trolls too who don't think they're trolls, just entitled to their "opinion"! Every board is different and yet they're all the same.


Hi Lin B - I agree that PA pain seems like it never goes away, but the tendinitis and enthesitis go in cycles for me. I've been fortunate to avoid the common finger problems and I know that can be quite debilitating. As far as the sequencing of meds, it does seem the docs and literature move from the least invasive and lowest potential meds on up the scale. My doc talked about Remicade as a fall back vs my current regimen, but I understand that it's administered via IV rather than injection which has to be a bummer.

Mj and traveling is an issue for sure, but I take the risk as long as it's domestic, and avoid international destinations where laws can be draconian. I put a small amount in a used med bottle and throw it in with the rest of my meds. Never had a problem, even with the 9/11 aftermath. Beyond that, I only need a quick puff to get the desired effect that lasts for 5-6 hours, so I can usually figure out a way to discreetly take my med.

Just returned from Hawaii celebrating our 20th anniversary, though, and I handled the long journey from the east coast and back with mj cookies. Don't like to administer the med that way because the effects are different, but it tides me over and keeps Mr. Pain & Darkness at bay.

The war on drug folks tend to look for the big guys and leave the lowly user at peace unless you're blatantly indiscreet.  I figure the worst they would do is disrupt my day and maybe ultimately fine me and put me on probation. I'm retired now too, so I'm not concerned about bad publicity as I once was. I'm a closet user, though, and most who know me would probably be quite surprised.

It's been gratifying to see the serious, controlled research studies emerging documenting what a lot of cancer, MS, RA, PA, Crohn's, etc. sufferers already know. Actually, I'm surprised that there is not an abundance of users here. I discuss my mj use with my docs but nothing goes in the record; primarily to protect them, not me I think. I try not to think about the so called war on drugs or I blow a gasket. What a wasteful and corrupting sham it all is.


Shelly - not having anti-inflammatory meds really puts you at a disadvantage. I'm curious about your comment that you wait until evening for your narcotic med. I try to minimize the pain meds I'm on, but I tend to be a wimp, so if I need it I take it. Do you have lifestyle issues that prevent your daytime use, or have you reached some doctor or insurance-set limit?

Makarres -- thank you for your good wishes.



Ah, PsA, truer words were never spoken, in regards to trolls and people views on Sweet Mary Jane. I am an overt user, but I live in Canada where people are definately more relaxed about it (although if Harper gets his way that would change). I think the problem with MJ is we can all grow our own, so that cuts out the pharmaceutical companies and they don't like that. I know SO MANY people with various diseases and conditions that use it therapuetically and many say it's the only thing that helps. It's not the only thing that helps me but it works so why mix it up?


Hi, Welcome.. I have the sero-negative RA and since my diagnosis I have started haveing mild psorisis my Rd told me that its all related.
Linda
[QUOTE=Jojo-Baby]I have started haveing mild psorisis my Rd told me that its all related.
[/QUOTE]

Really sorry to learn that you've developed psoriasis in addition to RA. Talk about adding insult to injury. One of the good things that has come from my treatment for PA is that my skin psoriasis has virtually disappeared. I used to have significant problems with my hands, which was not only unsightly but also painful as hell. I hurt for folks who have serious skin problems, and I'm not surprised that depression goes hand in hand with all this.

Geezer
PsAGeezer39422.6759953704 [QUOTE=Gimpy-a-gogo]I think the problem with MJ is we can all grow our own, so that cuts out the pharmaceutical companies.
[/QUOTE]

Hey Gimpy,

You put your finger on a key part of the problem, and there are others with vested interest too. A minor example -- COPS would vanish from the airwaves if it weren't for macho guys busting down doors and throwing people to the ground. A whole lot of law enforcement would have to look for other work if mj were decriminalized. Docs also wield a lot of power with their Rx pads at the ready, and would be out of the loop with many patients. The potency of the FDA would be negatively effected also. The list of vested interests is long.

But we're making headway here in the states. About 20% of states have relaxed penalties with more referendums in the wings. Sooner or later things will truly change but probably not in my lifetime. But you never know. Health care is going through a massive transformation and ultimately some very hard choices will have to be made about how we spend our precious resources, and alternative methods will be more acceptable. As a result, mj will fall on the priority list.

My wife is a conservative non-toker, and initially was strongly opposed to my use, and it put our marriage to a real for sure test. But I'm proud to say that we worked through it and it has made our union even stronger. Now she would be strenuously object if I were to think about abstaining. It effects her quality of life too.

Geezer
[QUOTE=kelsaysmommy]There is always somebody around that can answer any questions you may have, or just to be somebody to vent to.[/QUOTE]

I've gathered that after reviewing a lot of prior posts. I've also noticed that a number of people have multiple ailments in addition to RA. Thanks for the friendly welcome.

Geezer

Hi and Welcome PsAGeezer,

I'm new here too and supposedly have RA. (Supposedly because when I was too idiotic to leave bad enough alone I went out and got 2nd and 3rd opinions where they suggested respectively that my dx could instead be PA or Lupus - even though I don't have the physical criteria.) 

So stuck w/ 1st Doc because my symptoms from all my initial self dx research seem to fit far better w/ RA and because I at least had a cousin w/ RA and no known relatives w/ Lupus or PA.  And because he was the most into early aggressive treatment w/ Biologics.

Reading through your thread is making me wonder now though. So I hope it is ok to ask my own question in it. Is it possible to have PA and not have any skin involvment? A few people here who have both RA and PA mentioned *Tendonitis and a Very Different Kind of Pain* associated w/ the PA that was unlike the RA. 

I have tendonitis problems (wrists especially) and bursitis and my RD has recently become very frustrated w/ my pain and symtoms "not behaving like RA". And what has been described here does sound like what I'm experiencing. So, to anyone's knowledge here, is it POSSIBLE to have PA w/o skin involvement? 

Good Luck To You...and thanks for answers to above if anyone knows!

AdeleRenee

 

AdeleRenee,

Yes, it's possible to have PA with no prior or current skin problems, but it is uncommon. If I recall, it's about 5% but I don't have a reference at the tip of my fingers.

Your's sounds like a complex case. I was lucky in doing my own research because of the uniqueness of my version (there are 5 official categories). Because I didn't "present" as a typical case, several docs missed it. My profession was market research so I was proficient in finding the info. I've ultimately ended up with a cutting edge Johns Hopkins doc who has been a tremendous help.

My only advice is to seek the best rheumatologist you can find who has lots of experience with PA. Because there are only about 1 million sufferers in the US (vs 7+ million with RA I think), many docs have not had much exposure to the ailment and the wide array of symptoms.

Of course, one of the common recommendations for these types of ailments is moderate exercise and stress management. So, if you're not exercising, do. And, if you're not engaging in relaxtion methods such as yoga or meditation, do that too. Eat healthy.

Best of luck and Godspeed.

Geezer

Addition:

Re: "I've ultimately ended up with a cutting edge Johns Hopkins doc who has been a tremendous help."

BTW, my rheumatologist's name in Allen Matsumoto in Wheaton, MD, a DC suburb. I highly recommend him. I drive an hour+ to see him.
PsAGeezer39423.3595023148Hi Adele, I was  one of the 5% of PA patients who didn't have skin plaques.  Once I started Remicade I had an outbreak of skin psoriasis on my leg.  I've since gone through laser treatment and it's practically disappeared with no further outbreaks.  All I can say it's a strange medical condition and affects so many parts of our bodies.  Joints, muscles, tendons, skin and who knows what else.  Have you had xrays of your fingers?  They may be able to diagnose PA from those.  Lindy   

Hi LinB, Yes I've had xrays and mris on hands. Nothing showed on xrays and mri showed some joint space narrowing and fluid and osteo on thumbs. What shows up if you have PA instead of RA? Oh, and btw, one of the reasons the 2nd opinion doc thought PA was because of the way my fingers swell when they do (daily but pretty normal looking by night). Apparently they look sausage like???

Geezer, I'm from the DC area, and know Wheaton, all the surrounding metro areas well. I had to leave though a year ago now when I became unable to care for myself, my dog, my finances etc. Now I am living temp. near family in central VA.  I did just go to Hopkins myself for a consult and really liked them there, but it is now a 4 hour drive.

Adele 

Adele,

"What shows up if you have PA instead of RA?"


I'm sorry but I don't have the education and experience necessary to diagnose your symptoms. You probably should turn to your rheumatologist or other health care professional for these kinds of questions. There is a subjective element to diagnosis that you can get usually only from experienced professionals.

You should be in good hands at Hopkins. Matsumoto, my doc, used to head up the Hopkins rheumatology department before he went into private practice. Trust your instincts.

Geezer

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