WHERE ARE YOU - PsA? | Arthritis Information

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Seems like we have many members of the forum that have PsA but there's not much posting activity.  Why don't all of you post and let each other know how you're doing and what therapy and medical treatment you've been prescribed.  That's our way of learning about the disease, treatments and therapy.  We need to share.  So let's start posting.  I'll be the first.

 
Unfortunately, my news isn't good.  I'm off all dmards and biologics till at least June due to a variety of infections and treatments.  The mris of my hands show extensive damage and a tendon tear that may or may not be related to Cipro usage.  I'll see my RD on Thursday and I have a ton of questions.  Also, am thinking seriously about going to Mayo Clinic in Scottsdale for a RA/PsA second opinion and if treatment is required for the tendon tear. 
 
I wish my news were better and I'm hopeful that some of you have good news.  Let's share.  Lindy
Hi, there. I just saw your post. I'm sorry you're having to stop your meds. What's the latest? Did you go to Scotsdale?

My husband has PsA. It's been really rough. He takes Methotrexate and Plaquenil. The rheumatologist wants him to take Humira, but even with our health insurance it would cost us ,500 a month. We can't afford that, but we make too much money to get assistance from the manufacturer.

My husband sees a chiropractor which helps so much. He also gets a massage once a month. He gets a lot of relief from it.


Hi There, no I didn't have to go to Scottsdale or get a second opinion.  I had a heart to heart talk with my RD.  I'm back on MXT and Sulfasalazine but so far no relief.  Every day a new joint joins the party.  I'm considering Rituxin once all these other health issues abate.  Now I'm considering it; I may change my mind tomorrow.  I have to go back to the dentist next week to have the gum abcess checked and I had the ultrasound of my breasts today and will have those results sometime next week.........the saga continues. 
 
There are other ways of getting assistance for your biologics.  Let me find the list in my files and I'll post later this evening.  Lindy
Guess what? Humira has a new assistance program! We should know tomorrow or Monday if we qualify!

I'm sorry to hear you're not getting relief from the MTX. Hope your gums heal!
Young wife & lin,
 
Sorry, I don't check this site as often as I used to.  Really sorry to hear about the troubles you all are having.  Seems this disease has so many ups and downs just like a rollar coaster...but less the fun.  Young wife it sounds like I would not to steal LinB phrase but have a "heart to heart" with his rheumy and really review his treatment.  Weather will always play a part on how we feel but it just sounds like something more can be done for your spouse.  It sounds like you are very supportive so hang in there.  Lin, you have really had it rough for awhile now and I really wish for some relief for you.  Hopefully your x-rays go well.  Happy to hear you had the discussion with your rheumy...but you have had it hard awhile now maybe it is time for that 2nd opinion.  I have had several Remicade IV treatments and am feeling better.  My dactylitis is almost entirely gone and my tendon tear is getting better too.  I will try and post more often to stay in touch.  Take care! :)
I do not have PSA but I do go to Mayo. I strongly believe that you see an orthopedic surgeon at Mayo about the tendon tear. If it needs fixed the sooner the better. Of course getting a secound opinion from an RD at Mayo is also a good idea but see an Ortho soon. milly2009-05-14 20:20:12

Milly, thanks for the info.  The tendon tear is a common tear with people who have RA or PsA.  It will heal on it's own and very seldom gets worse, even with golfing.  I went to an orthopedic doctor who confirmed what my RD told me.  If I do have to have surgery then I'm off to the ortho clinic at Mayo.  There's a Mayo in Scottsdale and if I feel I need a second opinion that's where I'll go.  For the time being I'm holding on the second opinion.  There's only so many meds and combinations that one can go through.  Our treatments are limited.  I've been through all of them except Orencia and Rituxin.  So a second opinion at this point in the disease process probably is just a waste of money.  I have the highest regard for my RD but his personality is so bad and abrupt.  That's been my problem.   Medically wise he's tops but personally he's a read dud.  I just have to get by this personality clash.  We had a long talk and he realizes how abrupt he is and we talked about how his patients respond to it.  Everyone I know in the medical field says he's brilliant but...........

I'm an old surgical nurse so I can usually ignore most of the personality issues with the docs if they're good docs. 
 
Windy, so glad to hear from you.  I've been wondering how you're doing.  It's so great to hear that Remcade is working for you.  Please keep us posted. 
 
Lindy
Hello.
I was diagnosted with PsA about 6 weeks ago and have been on Enbrel for 4 weeks. At first I was very wary of taking such a strong medication. I have a 3 yr old daughter and I didn't want to be so sick that I couldn't be any fun for her, but I am feeling alot better. The stiffness in the morning has gone down a lot, and my psorisis is much better, but I still have quite a bit of pain in my toes and fingers. I also have kidney disease that prevents me from taking any kind of anti imflamatory meds. It also means that Enbrel is one of the only meds of this kind that I can take, so I really need it to work wonders. How long does it take to feel real relief with Enbrel? Are the infections worth the relief? I do see a rheumy, and although he is a great doctor, I find it hard to talk to him. I have only seen him a hand full of times though. Would regular massages help?
Any advice would be great!allymom- i am sure you know that everyone reacts different to treatment so not sure when you will feel better but hopefully very soon!  Keeping up with a 3 year old probably keeps you very busy.   It took about 4 IV treatments before the remicade started working for me but I am hanging in there and am thankful for the bit of relief I have got so far.  I was able to do a 1 mile Fun Run with my family today and it was great.  Walked most of it and I am pretty sore but it was worth it.  LinB- FEEL BETTER SOON!  You always offer advise and I wish I had more for you.  I can only say that for some peeps a third opinion is a charm!  Another dr may know of a treatment that you are not aware of or some clinical trials if you are at that point.  Keep us posted.  :)"Thanks Windy, not sure what direction I'm headed.  Just biding my time right now.  LindyI'm new to the forum, diagnosed w/ PsA + OA 2 yrs ago (psoriasis has been forever...) and on Enbril and Mobic.  My question is this: are the swelling and discoloration in my ankles and feet also a part of the PsA?  It would almost be a relief to find that it's part and parcel of the same...  Also, anyone out there know of a connection to a tear in the optic nerve?  My opthamologist is somewhat lacking in bedside manner..... CTred2009-05-17 10:42:33Hi and welcome CTred, The swelling may be part of PsA but I'm not sure that the discoloration is.  You need to be evaluated by your primary care doctor.  There are several causes of discoloration and swelling of the ankles.
 
I don't know about the optic nerve tear.  What are they doing to repair it?  Can it repaired.  You might want to get a second opinion regarding the tear.  Lindy
Allymom, massages are a tremendous help to my husband. I hope they help you, too. That was my thought too, so far he hasn't given me any idea what direction that will go in, other than keeping watch on i.  I did mentin he has no bedside manner, didn't I?  I'm seeing my rheumotologist soon, hopefully he'll have a referral for me.  Thanks Lindy!Thanks young wife, I thinks it's worth a try. I'm in a flare right now and a massage sounds great!Well I've been diagnosed with PsA for almost two years now.  Immediately went to Remicade after about 3-4 weeks of MTX pills.  I was unable to move much at all for about 3-4 years beforehand, and after two infusions I'm able to function at around 90-95%.  My dose has flown up since then but it still works, and without it I would definatly not make it through the days.  I am now 26 and are actively working full time as a Software Developer (billing systems, etc) and full time college student pursuing TWO majors.  Before I got these treatments I did good to work part time anything, and had no interest in school as the way I worded it, It just hurt to be alive.

With these treatments It's given me the power to over achieve and do everything I've wanted to do for years.  Good things happen, just gotta find the right people to help you along the way!
Hi Mohgeroth, WAHOO.  Such wonderful news.  Sounds as if Remicade gave you back your life and then some.  I can't imagine being so young (26) and having this disease knock you flat on your back.  I was in my 50's and was thinking of retiring, not in my prime and just starting my career.  Take care and keep us posted on how you're doing.  LindyI have been on Enbrel for my PsA for 7 weeks now, and I am starting to have some relief. My question is about Folic Acid. I have heard of many people using this along with medications, why is that? What will it do for me? I just had my first hands and feet only massage and it was heaven! I will for sure be getting them regularly!

AllymomFrom what I understand (from what the doctor told me), the Folic Acid goes along with it to prevent liver problems.  I take a few Methotrexate pills on a weekly basis, but I'm supposed to knock one of those folic acid pills down daily.  I'm not sure the fine details behind it but thats the best I was able to get

Folic Acid helps with cell structure that MXT can harm.  It also helps somewhat with some of the MXT side effects.  Folic should always be taken if you're taking MXT.  Biotene also will help with MXT side effects. 

Ally, it's great that you're starting to feel relief....what a feeling!

If you're on MXT take your FA daily, please.  Lindy

 

LinB,

Thanks for the advice. I am only on Enbrel because I also have kidney disease. I was also wondering what are some things I could take for pain? I cannot have any anti imflammatories, which is, for obvious reasons frusrating. So really I am stuck with Tylenol and I will sometimes take Darvecet. Any suggestions? I see my doc on Monday, so maybe I can get something new.

AllymomAlly, talk to your doctor about Ultram and Tramadol.  They are the same except Ultram is slow release over a longer period of time.  Darvocet is pretty useless for RA pain and the FDA is talking about taking it off the market.  I take Vicodan because I golf and exercise and my quality of life is more important than getting addicted at my age.   When you take pain meds for true pain then the chances of addiction are slim, unless you misuse them.  LindyHey Lin I am still around just haven't been posting the psoriasis is being a pain in the ass and I am having some flare ups of pa but I really can't compalin I am still alive and kicking as the song goes!! meme So I went to my rhuemy doc today and asked for something for the pain. He said that the only thing he would give me is Tramadol, which I turned down. I have tried it before and didn't really feel any relief. So basically it's Tylenol for me. I am going to ask my primary for at least some Tylenol with Codeine. My rhuemy said that he doesn't prescribe narcotics. Is that typical? He did feel confident that with the way I'm going on Enrel I should be significantly better in a couple more months. I sure hope he's right, I live in the Northwest and I don't want to go through another winter like this last one.

AllymomHi Again, Meme, sorry about the P and PsA but you sound like you're doing well and I'm happy for you.
 
Ally, RDs are notorious for not prescribing pain meds except for Tramadol.  Talke to your primary care doctor.  My primary prescribes pain medication for me because my RD only prescribes Tramadol which keeps me awake, upsets my stomach and I still have the pain.....useless.  I take Vicodan and have good pain control and I don't have any side effects.  I usally take 1 during the day if I golf and always 1 before bed due to RA in my right knee and hip pain.  Once your other meds kick in you probably won't need pain meds. Lindy
Thanks Lindy, I appreciate the advice. I also am awake all night with Tramadol. I plan on talking to my primary soon. Thanks again.
AllyHow is everyone doing, any changes in meds or symptoms?  Let's get this started again.  Lindy

Good idea to restart this thread. I've been posting over at the RA forum because no one seems to be here.

I've had a minor flare and I think it's starting to go away. At least the fatigue is subsiding. I'm still on my MTX and Celebrex and so far haven't upped the MTX dose.
 
How's everyone else doing?
I'm flaring also and I'm blaming winter.  In fact RA seems to be doing ok but PsA is kicking my butt right now.  I'm trying to avoid a burst pack of Pred because of the holidays but I may start one after Thanksgiving if I don't have any relief by then.   My feet are the worst.....aargh!  Voltaren cream has helped a lot this evening.  I have to be up and moving around tomorrow at work and it's hard to smile sometimes through the pain but I'll manage.   We also leave tomorrow in the afternoon for a 5 hour road trip which won't help but it will be great to spend a couple of days with my son and his wife. 
 
Sam, hope your flare is gone soon.  Lindy
Hi, Lindy,
 
I hope the road trip went well. Any relief for you? Hopefully seeing the family will "distract" the pain.
 
I've really been wiped out with this flare - very unusual for me. I really hate the idea of upping my MTX [currently on 17.5, which isn't that much, considering I've been taking it for 15 years] but am pretty sure that's what my RD will do when I see him in about 3 weeks. Plus my glucose is up....not really bad, but bad enough so that my Endo-doc will surely give me "the talk" about going back on Metformin. [I got off it because I believe it was the Metformin that was causing a lot of myalgia.]
 
But the thing that irritates me most of all is the pain inflammation in the lower back which causes pain and weakness in the back of the thighs. When I get up from sitting by the tenth step I get momentary cramps in my sacoriliac. New for me. Annoying.
 
Don't mean to whine.
 
But I am thankful that it hasn't hit my shoulders or wrists or fingers yet, which are the target areas each winter. One thing at a time!
 
Hope you're having a great holiday, Lindy!
Hi yes lets get this place rolling along. I know the RA forum is the place to be but I don't have RA at least not yet signing the papers next month for another TKR for the fall and I can hardly wait. I have been on MTX for about 1.5 yrs now and find I am having nausea troubles again. Anyone else have this problem?  I am thinking it is a post surgery thing. I see the doctor for bloodwork again next week so will find out if my liver counts are still high which apparently is common after surgery. I will keep checking in here a couple times a week  hope to chat with some PsAers soonI rarely visit this forum since everyone seems to gravitate to the RA forum. I'll check in more frequently though.
 
Windy - you're taking folic acid with the MTX, right? 1-2mg daily of the Rx [not OTC].  I've been on MTX for 16+ years now. It was awful in the beginning - but then I didn't know about the folic acid then. I find my dose increases 2.5. mg [1 pill] every 2 years lately..... while I no longer get nauseous, I still get that "wiped out" feeling 48 hours post pills.
 
I think the PsA in my case is being managed fairly well. My big headaches now are the DDD and the osteoarthritis in the knees. The latter will be taken care of when I go through another series of Synvisc, starting in another week.
 
Strange about the TKR's. I know people who really struggle through the aftermath of surgery and then I know a bunch of folks like my cousin who had both knees done at the same time, stayed in the hospital 48 hours, went into a physical therapy nursing facility for one week, then went home for 48 hours - long enough to pack and leave for a vacation in Europe.  She did very well and I know a number of studies just like hers. Am almost of the mind that it's all in the determinatin and the skills of the surgeon. I'll take Synvisc as long as it works - but then will have no qualms about going in for TKR. 
 
Have you added any other meds recently that could be responsible for the nausea?
Hi aside from pain meds with are only tylenol 500mg every 4 hours I am narcotic free at the moment. I had my bloodwork done today and mentioned my troubles to her she says she will see me Monday for a fasting bloodwork. I see the doc on Friday she knows she will send me back! Gah I can't believe someone could have this surgery done bilatterly and be on holiday in two weeks. I did bring up having both done at the same time and he was not receptive but then again I was not too pushy about it. I am glad I chose the path I am on. 
I do take folic acid 5 mg daily and am on injectable MTX 6mg weekly a low dose. It could be the Arava or just post surgery complication. I too have done neovisc for 2 years on both knees. The left knee is still responding but definitly not at well as it did at the first injections, add leg braces to that and it has been quite a haul for me. I am so glad to have had my TKR and can hardly wait for the next. I will be calling my rheum next week to discuss my back/hip/knee pains with him after I see my GP. I also have DDD and osteo axial PsA and PsA in all my large joints. sigh. It could be worse. I am being managed fairly well also but the surgery has thrown things for a loop for sure. Nice chatting with you Sam. Will let everyone know what the doc says! probably I am doing to much as ususal. Rest thats what I get told all the time .Hi, 2Trees,
 
I'm going to be starting my next round of 3 Synvisc injections in a few days. My knees are screaming, worse than ever. Hoping the shots work as well as they did the first time last year. [I got 7 months out of that series.]
 
What's really killing me now is the DDD - pain in my outer thing, midway up. Saw the orth surgeon for it about 3 months ago and it really hasn't resolved itself at all.
 
Then there are the other pains......eeeeek, I'm falling apart!   I also think my MTX has ceased working.....taking it for 16 years. Seems like every two years I have to add 2.5 mg [pills]. I hate adding new drugs to the arsenal as my body tends to reject any foreign invader.
 
Let us know when you get the results back next week for the blood work.
Hi Sam Had my bloodwork done and the Alk phosphatose?? has climbed another 6 points. So in for more bloodwork 2 days later it has dropped from 146 down to 130. She suspects I could have a bile duct blockage or gall stones. Since I have no pain who knows. I got in for an ultrasound and since they did not call me immediately I figure my liver is fine. I see the doc next week and will find out the results. I will have more blood work done also so we will have a good notion maybe of what's going on. I see the surgeon for a checkup on my new TKR  (10weeks  postop)I will be signing on for the next knee as it is shot now. I am not even going to try the neovisc again as it did not give me much relief this time. I am asking for a shot of kenalog though as I am leaving on a trip and could use the relief. I can stand on my leg for short periods of time but must be careful as I overdid it the other day and paid royally the next. It was a narcotic night to be sure! I am sorry to hear that the MTX may not be working for you. I am happy to be on  it along with arava and naproxen.  When I get my other knee done I am hoping for a short time left on naproxsen maybe 3-4 months post surgery. One drug less will make me happy.I am like you in that I must start out at the lowest dose possible or face drastic side effects. so
Happy Easter hope this post finds you well!
LONG TIME NO SEE EVERYONE!! How is everyone doing?? I am sorry I haven't been here for awhile but work has been crazy and I am so tired when I get home and I am on the computer all day I don't even want to go near it at night. I am doing ok with the PA but the psoriasis has been terrible and nothing is working. I have been sick these past couple weeks with a cold and baterial infection, I thought I was almost over it and it has started coming back again so back to the Dr's to see what is going on!! I am tired of coughing and peeing my pants at the same time!! ehehee [QUOTE=2trees]Hi Sam Had my bloodwork done and the Alk phosphatose?? has climbed another 6 points. So in for more bloodwork 2 days later it has dropped from 146 down to 130. She suspects I could have a bile duct blockage or gall stones. Since I have no pain who knows. I got in for an ultrasound and since they did not call me immediately I figure my liver is fine. I see the doc next week and will find out the results. I will have more blood work done also so we will have a good notion maybe of what's going on. I see the surgeon for a checkup on my new TKR  (10weeks  postop)I will be signing on for the next knee as it is shot now. I am not even going to try the neovisc again as it did not give me much relief this time. I am asking for a shot of kenalog though as I am leaving on a trip and could use the relief. I can stand on my leg for short periods of time but must be careful as I overdid it the other day and paid royally the next. It was a narcotic night to be sure! I am sorry to hear that the MTX may not be working for you. I am happy to be on  it along with arava and naproxen.  When I get my other knee done I am hoping for a short time left on naproxsen maybe 3-4 months post surgery. One drug less will make me happy.I am like you in that I must start out at the lowest dose possible or face drastic side effects. so
Happy Easter hope this post finds you well!
[/QUOTE]
Hi,
 
Sorry for not checking back on this forum.
 
Regarding the Alk Phos - normal is about 20-125 so your scores aren't totally ballistic at all. Still, something is going on.
 
A very, very wise veterinarian once told me that the liver is the spokesperson for the rest of the body.
 
My notes on Alk Phos:
 
INCREASED IN: OBSTRUCTIVE HEPATOBILIARY DISEASE, HEPATOTOXIC DRUGS, BONE DISEASE (PHYSIOLOGIC BONE GROWTH, PAGET'S DISEASE, OSTEOMALACIA, OSTEOGENIC SARCOMA, BONE METASTASES), HYPERPARATHYROIDISM, RICKETS. BENIGN FAMILIAL HYPERPHOSPHATASEMIA, PREGNANCY (3RD TRIMESTER), GI DISEASE (PERFORATED ULCER OR INFARCT).
Have you had your Vitamin D checked? Please do so. It's just now becoming known that this hormone can cause all sorts of grief.
 
I just finished my Synvisc rotation a week ago and I'm really happy. Actually hopping down the stairs. I figure I will keep using it until it no longer works. My orth surg says that some patients are able to defer TKR indefinitely by using Synvisc. Of course, for some Synvisc doesn't work at all.
 
I'm doing fine now. When he did the first of 3 Synvisc injections he gave me Kenalog in each knee and it took care of pain in my lower back and thigh, too! So between the Synvisc, Kenalog, and Vitamin D Rx supplements, I'm doing really well. I'm pleased. I'm also smart enough to know this is temporary so I plan to enjoy it while I can.
 
I totally agree about getting off as many drugs as you possibly can. My aim now is to lose more weight, bring down my BP and my glucose levels......then I can discard my Metformin [diabetes drug] and hopefully Benicar [blood pressure drug].
 
Happy Spring!!!!!
Hi it's been over a month since I have posted. Busy busy thats me. I went and visited my grandkids for a month and now I am home. I have been getting stiff in the mornings and evenings again so I am trying to take the leflunomide 6 days a week (not on MTX day) I am finding I am a bit nauseous again so I will give it 2 weeks and then drop back down to my lower dose. My ALK PHos has dropped down to 130 again so I am happy about that. I want to amputate my left knee it is so painful again. September is a long way away
Glad to hear the bionic kee is doing well, 2trees.
bumpinghere is goes...to the topBumping up[QUOTE=Sam1234]

I"m always thrilled with the improvement from Synvisc, even if it is temporary. I'll take what I can get. Who knows how long it will last this time. Last time was 7 months. When [if] the time comes when it no longer works, then I'll be hidy-ho to have total knee replacement.

Glad to hear the bionic kee is doing well, 2trees.
[/QUOTE]
HI finally back here again. Where does the time go? My bionic knee is still great. I do have tendon/quad minor troubles but the massage therapist figures it is because it is working so hard because my left knee is soooooo bad
Sam I hope the synvisc is a cure all for you for a long time. Having a knee replaced is not easy. It definitely is great but a helluva lot of work. I am grateful I only have 2 knees!good luck !chat ya sooner maybe over in RA 
oh and in reply to Vit D I take a 1000 mg suppliment during the summer months and bump it up to 2000 during the winter. Not including fortified juice,dairy or sunshine. But thanks for the tips!Hello,
 
I am a newly diagnosed PsA patient.  I have always had pain in my knees and ankles but attributed it to being a really athletic kid (rollerblade football in the street anyone?).
 
Recently I hurt my back (again) and after about two weeks, started having pain in my shoulder, knees, elbows, hip and hands.  I saw about a half a dozen doctors and finally had a mildly positie Rheumtoid factor test.  I was referred to a rheumatologist who said that based on nail pitting, a small scaly patch of suspected psoriasis on my elbow that I probably had PsA.  Later tests showed positive HLA-B27 and elevated ANA.
 
I tried Voltaren and Mobic each for about 3 or 4 weeks with no improvement.  I am now on methotrexate.  I have taken it only once (last week) and next dose is tomorrow night.  OUCH!  I hate it.  I was so sick to my stomach.  I vomited several times and was very tired.  I have 2 small children (almost 5 and almost 3  - and each have their own health problems) and I am not really happy with this treatment (work 5 days and sick for  1 1/2 to 2 days (on my weekend)).  Does it get better?  Are there any other likely candidates besides PsA?  The doctor wants to try an anti-tnf if the methotrexate doesn't work, and I am scared to death of the side effects of both Remicade and methotrexate.  What will happen if I refuse treatment b/c I am worried of the negative side effects (cancer, bone marrow, etc.)  BTW, my rheumatologist thinks he is a genius and is not very comforting and doesn't spend much time with me to answer questions.
 
Thanks!
Kajoeyla,
 
Sorry you need to be on this website....but glad you found it.
 
Some comments from someone who's had PsA for 17 years and has been on MTX for that long:
 

And yes, it does get better. Truly, it does. The first year is a big adjustment, some physical and some pyschological. Learn how to manage your "down time" and the faster you do, the better things will go.

Good luck!
good news I wanted mid september and I got it. I will be having my left knee replaced on the 15th. I can hardly wait. I have forgotten what it is like to be pain free. Here's hoping my PA will go into a remmission and or maybe my upper back pain will go away.I can hardly wait to go for a walk again.  
I am pretty excited to say the least!
 
It's right around the corner and that's great for you.
 
My last Synvisc round didn't work as well as the original round a year ago. Since I had multiple arthritic problems going on, it was decided to put me on a short term MethylPred pack. Felt greater than I had in 20 years.  And then, a week after the last pill I rebounded into a downward spiral.
 
Now the rheumatologist is thinking that my long ride with MTX is over. I had a good ride - 17 years. So now it's possible I'll go on Enbrel, though I have some hurdles to overcome before that happens.
 
Meanwhile, he gave me a DepoMedrol sub-Q injection which only relieved about 20% of the pain. Two weeks later I went to my orth surgeon and got Kenalog injections in my knees. Kenalog always seems to work for me.
 
So now I'm feeling pretty darned good, though I know it's only going to be good for about two months. In the meantime I'll be talking to some physicians about knee replacement and new biologics. [I suffered a Guillain-Barre type reaction to Tdap booster, hence I am really concerned about putting anything like Enbrel in my body.]
 
Weighing all options.
 
Good luck on the knee replacement!
wow I don't know what those meds are! I am really a newbie to PsA or just damn lucky that I have no need for those kind of meds. I am sorry you have to go off MTX but you are right 17yrs was a good go. My sister has just started on enbrel for her serious P and she is hopeful for improvement after only 4 shots. Why she refused MTX I will never understand. I have had excellent results with it. I digress, I would be extremely cautious myself after the reactions you have had . There are some excellent new meds out there and one will be for you! good luck yourself on that. Me I had a minor meltdown yesterday when I woke up  with a sore tooth. It is a  cracked filling and will be repaired 2 weeks to the day before my TKR. This is significant as the surgeon told me he would not do a replacement except 2 weeks after a procedure that  may introduce bacteria into the bloodstream. Yikes, I had talked myself into an abcess by 9 am and was practically hysterical(hmm maybe I should change that to was definitely) and so down my poor beloved was worked up himself as he has never seen me like that. Needless to say I am definitely gonna work on calm for the next 2 .5 weeks. These knees have sucked up my whole life for too long I was shocked at myself for letting my mind/emotions get the better of me. Calm and reasonableness were completely gone from my life I tell ya.  
rambling along again good luck Sam I'll be back to keep you and the net informed with progress reports.
Nothing's worse than being pumped up and seeing the light at the end of the tunnel and then something just blows the entire plan to pieces. Or so you think.  But you're in the clear, it seems. You just have to tell yourself it's a minor detour. That's it. A detour.
 
You're really still on track and you need to stay focused to a surgery date. It will be here before you know it. Keep me posted.
 
In the meantime, don't eat anything with pits!
calm and cool reins in my house now. filling is repaired no blood involvedJust keep counting the days. You're almost there.
 
What are the dynamics of your surgery? How many days in the hospital? Then skilled nursing/rehab facility?
Hi everyone, well surgery went well.  I went in on the 15th and out on the 19th. Medial side osteo, rest of knee capsule inflamatory damage but my patella was undamaged so no plastic button for me. I was quite happy to hear that. No skilled rehab place anywhere near where I live but there is an excellent physio dept at the hospital here. I get my staples out end of this week and start physio next week. 2 times a week. I have about 70 degree of bend up to 90 degree depends on the time of day and how much I can force it. I have been on double the pain meds from last surgery and actually suffered with uncontrolled pain for the first 30 hours or so.  This time I don't know exactly what happened but I am requesting copies of my stay last time and this time to see what was what. Once they did what I and the nurses suggested, bingo pain control. Other than that I can say that this knee is completely different from the last one. Last time I was a wreck  and stayed upstairs for a week . This time I have way more energy,and am able to get around much better. Mind you I don't go far. I have been in the house or my yard since I have come home and staple day will be my first outing in 2 weeks!  have a great week everyoneHow long were you on pain killers post surgery?
 
I know someone who had a knee replacement done over a year ago and she's still on Vicodin. I'm thinking there's something wrong with that picture.
Sam you are right she shouldn't still be on vicodin. She should see a pain management specialist and discuss being addicted. I am guessing that or she has to get that knee looked at again something is wrong.  I am taking hydormorph contin 9mg at night only. I have missed one night last week and managed just fine on tylenol. I am on tylenol every 4 hours 500mg all day and hydrommorph at night. I do't think I will be on the morph much longer except for maybe physio day.   My doc will quit giving me the scripts soon. I hve enough for 3 more weeks but I think that will be enough.Generally physio day is pretty tough so we will see. I was taking oxycocet before I went to physio but now I don't have to. Just my tylenol regime. I remember last knee I was off the hydromorph by 8 or 9 weeks then took the hydromorph when I would have a pain flair in my unreplaced knee. I suspect I will be off the tylenol within about 2months except on days where I push the limit on my legs.  I never seem to have pain in my right knee(1st replacement) but the massagetherapist can see/feel the muscle fatigue I have in my glutes . All my muscles get fatigued fast. You have to remember they have not had the workout they are getting now! for the last 3 years. It is like learning how to walk all over again. On top of every thing I have had a flare of PsA. I did last time too. This one is making me tired beyond tired! A bit of skin breakout and more tired. The last couple of days have been good finally.  I will live. the doc's have done their job!. hehehe I am feeling pret good all in all. I am going in to work for 2 hours this week. I have given up my former position because I cannot work at any gainful employment but I can do this next week maybe 4 hours max. the rheum does not want me to work and it is not in my best interest to work with the PsA I have. (axial and all my large joints)As long as I can so this I will it keeps me entertained.I have never had such a job where they pay me to yak all day! enough about me! I hope you are well and your friend gets that knee looked at! good luck . will try to get back here more often!  

Trees,

Thanks for the detailed info. Really appreciate it.

I know people who have had total knee replacement and they’re pretty much off the drugs [except for an NSAID if they have an inflammatory disease such as RA or PsA] in a matter of about 7-21 days after surgery. So yes, something is definitely wrong with that picture of that acquaintance of mine. What’s worse, I understand that her HMO keeps prescribing the drugs for her. My gut tells me it’s an addiction. But you’re right – she should get the knee looked at and see a pain mgmt specialist.

Bummer – all the stress of the surgery and physio and now a PsA flare. Maybe a higher dose of your normal drug for a short period of time? I understand the exhaustion. It’s amazing how short a period of time it takes to make muscles go slack. I had bronchitis and a sinus infection a month ago and stopped exercising for two weeks while I did the antibiotics and it’s taking me forever to reach my “normal” level of exercise. It just takes longer.

My issue is a little different. My endocrinologist is concerned about my adrenal glands. The Kenalog that I’ve been getting in my joints is causing a shut down. So I promised not to get any more cortisone for two months so we can recheck the AM cortisol and decide if the Kenalog is causing it. Only a couple more weeks to go and we’ll rerun the labs and go from there. In the back of my mind I’m thinking it might be prudent to get the knee replacement done before year end. No telling what will happen to my insurance benefits and co-pays next year.

Hope this note finds you better.

Sam

up to the topHi Sam well I hope you get the adrenal problem solved. It's bad enough having PsA but I hate it when other life threatening problems arise. About the pain meds. If anyone manages to go off narcotics in 3 weeks well good on them. Either they have a high pain tolerance or they are tougher than I.

You mentioned something about excess weight causing plaque psoriasis to flare. I’m wondering if that is the result of not increasing the dose of the meds to accommodate the excess weight.

2trees:

The adrenal problem resolved when I abstained from Kenalog or any cortisone. Theoretically, that means I can continue with Kenalog injections into the joints every few months, as long as my AM Cortisol [tested 60 days post-injection] is in the normal range. So that’s good news. [Of course there’s still the issue of muscle and tendon wear and tear from the injections.]

Let me make it clear that when you need addictive pain meds, you need them. However, I think it’s important to test yourself periodically to see if you can cut back or do without. I’m not an advocate of being stoic when it comes to pain, but I have heard far too many stories about people who just pop pain meds like M&M’s without testing the waters.

Unless my surgeon has given me a narcotic during surgery, I’ve never taken any narcotic. I’ve been offered it plenty of times, but I absolutely cannot function with narcotics. However, if and when I have the TKR I am resigned to taking a narcotic for a few days.

Here’s the thing:  I have OA and PsA and CPPD in the knees. I find that if the inflammation can be subdued [Kenalog injections] the pain is greatly lessened, which makes me wonder if it’s too premature to have TKR. I see my orth surgeon next week and we’ll decide whether I can push off the TKR.

Hi Sam well you are right about the addictive drugs for sure. If you can get by without them then good. As long as the kenalog is helping I would stick with it. TKR is  a big  decision and you will know when it is time to have it done.   I am off the hydromorph now but back on naproxen . I tried to go without the naproxen for 10 days and I was losing ground with my knee.  Too much pain and inflamation. Now I  am forgetting to take tylelnol so I take that as a good sign. Most day I take 3 tylenol but 500mg of naproxen morning and night. Not to shabby considering how much pain meds I was taking a year ago. I will stay with the naproxen until I see the rheum in Feb.  Physio tommorrow. Yikes. always a tough day. I am having back pain again gosh darn it! The DDD is acting up in this cold adn all the extra standing,walking and exercise I am doing is not helping but what do you do.
My feet and ankles have calmed down finally but the strange pain on the side of my ankle still persists. The physio thinks plantar fasicitis but I am thinking it is something else anyways have a happy thanksgiving!
Hi, 2Trees,
 
I just wrote a bit in another thread under this group.
 
I was just shot up the wazoo with Kenalog, both shoulders and both knees. Was in pretty bad pain. The Kenalog works so well for me that I really wonder if I didn't have this if I really would need knee replacement.  Anyway, I'm starting Remicade soon. The idea is to stop having to get Kenalog shots....if I can. They really do mess up my adrenals. But I tell you, they really remove the pain and inflammation. A godsend.
 
So in short, I don't think I'm ready for knee replacement. How are you doing?
I am new to PsA as of last month. I have had painful hand joints off and on for about a year. The swelling, heat and redness finally sent me into see the doctor. After examining me and lab work, he diagnosed me with PsA.

I am taking doxycycline, meloxicam, thyroid meds and Vit D prescriptions. I have had one injection in the base of my big toe.

I have visible damage to some of my finger joints. I was wondering if my RD should have taken x-rays before diagnosing me? My CRP was 10 at the first lab work. I also wondered how long does the redness linger over the joint once the inflammation is down? The only shoes I can wear are Algeria, and I still have some pain.

ThanksRegarding Vitamin D:  recent studies are coming out that show that people with arthritic autoimmune diseases have "naturally" low levels of Vitamin D.
 
Add insult to injury, it seems that some experts are now thinking that Vitamin D supplements are causing arthritic flares.
 
I went on the supplements and barely got into the low normal zone. Had flare after flare, though I had been relatively stable for over 15 or so years prior to taking the Vitamin D. In the past 4 months I stopped [with my doctor's approval' all vitamin D supplements. Am still slightly below normal but the flares are subsiding.
 
Catch-22?
Hello everyone,
I am wondering if anyone knows where LynnB has gone? Haven't seen her posts for a while. Hope she is alright . Antibiotics can help to treat a wide variety of bacterial infections. Cefdinir medicine is used to skin infections as psoriasis. It works by fighting bacteria in your body.

Hi I am back. We had loads of company at Christmas and I had zero time to post:) I hope this post finds everyone well. I am getting around ok

I am on naproxen only now for pain a.m. and p.m. no tylenol at all or narcotics so that is great news and my liver thanks me every day. I was hoping to get off naproxen soon but will stay on for the time being or until the ankle is better. my left knee still has swelling and will for some time. My right knee is as good as it gets for a TKR. The surgeon and physio are happy. My xrays are all great and everything is normal.I can hardly wait for summer and the warm weatherThat is such great news about the successful TKR's.

 
And being off of the pain killers. Naproxen should work well. If not, try Celebrex.
 
i'll keep the celebrex in mind Sam. The foot is sorta getting better. As I say that the physio is trying a different method of taping and it does feel better. Now my upper back is gone south or somewhere sooooo back on the tylenol. It is not doing the job. On top of that I have a bronchial infection but with the antibiotics I am feeling better although coughing my guts out.. already coughed the lungs outLOL. Oh PsA I love you notAre you positive for HLA-B27?
 
Possibly you also have Ankylosing Spondylitis.
 
I had a bad bronchial infection in September. The coughing was a killer. Finally got an Rx for cough med called Tussionex. Godsend. Though it made me sleep throughout the day. Still, I got over the bronchitis much faster than I would have had I not taken it.

Hey everyone Hi Sam well the good news is my cough and cold gone. Saw the rheum and I have enthesitis in my ankle.
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