Newbie Introduction

Welcome Greetings and Introductions
1

Hello Everyone,

I wanted to take a moment to introduce myself and give an overview of my journey with PsA thus far. I just recently bought my first house just outside of Boston in the burbs...albeit a 1860 two family Victorian that needs some TLC, but I enjoy fixing up old things and making them like they once were. I just turned 30 and work in the IT field, but my true love is music and writing stories or screenplays . All through my life I was very active in school sports and spending time outside in the forests of New England.

My journey with PsA started last the fall in 2012 when the knuckle joint in my left index finger began to get stiff and mildly sore. I didn't pay much attention to that as we live our lives so fasted faced these days. Then in March of this year (2013), I woke up one morning with crazy pain in the middle of my back. At first I thought is was my 12 year old mattress, but soon I realized this pain was something else. I went to see an Orthopedic Surgeon and he said I need to lose weight, but my issue was I have a deteriorating disc. I still wasn't satisfied with this, but said OK and went on my way.

In around June of this year a few of my fingers and toes began to get stiff and a little sore, and my right hand thumb even swelled up and the joint got warm. At this time I was really going crazy saying to myself something is really not normal. So like most people I hit the internet for my answers, at first I was not successful until I went to a Dermatologist and he said I have psoriasis on my scalp. Now I have had dandruff since I was a teenager, and I thought it was just getting worse. I never thought in a million years it was psoriasis.

So when I saw my PCP this summer for my yearly physical, and I mentioned I have this stiffness in my back, toes, and fingers plus psoriasis. He said I think you might have PsA and recommended a Rheumy. I then was able to put two and two together and start to get information on what I might have by reading articles online.

So this past week my Rheumy officially diagnosed me with PsA. Like many of you here I was lost for words, saying to myself I have to deal with this for the rest of my life now? I have so much planned for my life, now what?

We discussed treatment options and she wants to start me right away on Methotrexate and Enbrel, but I am very hesitant as I am strongly against putting anything not natural into my body.

Now I have read a lot of posts on here about being aggressive right away to prevent joint damage, and I agree I don't want to have any joint damage. I think where I hesitate is at this point my PsA is on the mild side. I am still able to live my normal life with just a little stiffness and soreness and there is still a lot of unknowns about this disease. So could I just have the mild case all my life or will it begin to get worse as I age?

These are the questions I must think about and ultimately decide which direction I will go. I am very thankful for a community like this site provides. And twice as thankful for all the great information you all provide.

I am very happy to be here and look forward to all your great advice and information.

Many Thanks,

Mike

2

Welcome Mike, sorry that your here but happy to meet you. There are many very knowledgeable folks on this site who you will find to be a wealth of information. I was diagnosed just over a year ago after suffering with this disease for about 15 years. My understanding of PsA is that its a progressive disease and if not treated it can and will lead to joint damage. Once the damage is done it cannot be undone! The pain from permanent joint damage is also permanent and difficult to treat. A very wise moderator on this site said, "fear the disease, not the medication". For me personally its a good rule to live by. I am sure after some research and advice you will ultimately make the right decision about the meds, after all its your body and you only get to use it once, treat it right and hopefully it will do the same for you.

Good Luck

Judy

3

Hi mike

I argued with myself for quite awhile.. In that short time of maybe 2 years.. I have had two knee replacement on same knee and the doc said the other one is shot too.. I even had a joint replaced on my big toe

Yours may not be as bad. I wouldn't take the chance. I can hardly walk now.. Back issues, etc.. I really think I had psoriasis as a child. The arthritis didn't start till my 40's. I'm 58 now and was just diagnosed in October of 2012. Best of luck

Karen

4

Wow, that’s kind of what happened to me, my fingers and toes were swelling up but my pain thru my joints were bad, I couldn’t sit still and last week I was diagnosed with it too, I start on methotrexate tomorrow.

5

Hi Mike,
Do the meds now. I am now 58. Diagnosed about 5 years ago after much damage was done. I kept attributing my aches and pains as ‘doing to much’ or getting older. We think it had been going on for about 8 years before I got diagnosed but because I didn’t have overt signs like the swelling and such my diagnosis got delayed. Good luck and get a Rheumy.
Peggy

6

I am going to treat this aggressively, I don’t care what the meds do, I can not deal with the pain or any further joint damage. I am now eating better, and trying to get exercise.



stl2000 said:

Hi Mike,
Do the meds now. I am now 58. Diagnosed about 5 years ago after much damage was done. I kept attributing my aches and pains as ‘doing to much’ or getting older. We think it had been going on for about 8 years before I got diagnosed but because I didn’t have overt signs like the swelling and such my diagnosis got delayed. Good luck and get a Rheumy.

Peggy

7

Hi Mike welcome, it is nice to see another person from MA on here. It is a shock to hear the news especially, when your not even thinking something this chronic and severe is going on. It will take time to set in. I was diagnosed in March of this year and I still have to cope with the fact that there are things I will struggle with because of this disease. The important thing is to not over limit yourself and become sedentary, because then the disease will get worse. I am still trying to find that line and it is tricky what is me trying to do to much and when am I becoming afraid and not doing enough. I hope you make a healthy peace with this diagnosis and that you get a good treatment plan going.

8

Sorry you got the news - it is now about one year ago I too got the news and was initially scared by the drug information from drug companies, etc. I did see that many on this support site took MTX and the Biologics. I trolled around more and then also had some more one-on-one conversations with some of those on this list. I became much, much more comfortable that taking the medications were necessary and not as bad as I had thought. It turns out that all the dire warnings you read from the drug companies are a legal CYA thing and the scary things are rare. And to add to this is fact that MTX (methotrexate) is given at a much lower dosage than when it was used as a chemo drug for cancer.

I am lucky to have a brother-in-law who is a pharmacist at a well respected medical facility and also spoke to him. Keep the following statement imbedded in your brain: BETTER TO BE ON THE MEDICATION THAN NOT.

Sorry to say, but as already noted -- PsA is progressive, it cannot be stopped/cured but it can be slowed and restore as much functionality and relief from pain as possible. I got considerable relief from my spondylitis and hand pain from MTX and then more so with the addition of Humira. Before I was on meds. I could barely open my car door. At some point the Humira began to fade in its effectiveness and I started Embrel a month a go. An issue with an old injury of an ankle was causing great difficulty walking and much pain and trouble to the knee. Enbrel has almost completely eliminated that problem ( apparently the PsA also resided in that ankle/foot due to the old injury and didn't know it).

My two cents is that doing without meds is a bad idea and the fact that you think you have a mild case now makes it even more important to start to fight back now to prevent further progress at a pace yet to be determined. I look forward to my weekly shots (some people are OK with every other weekly shots of a Biologic) as I know how much they mean to my quality of life in pain reduction and functionality and keeping the progressive damage down to a minimum. BTW I am age 68 and live in the greater Chicago metro area where cold and PsA don't go well together.

I hope this posting helps you in wrestling with the issues in making your health care decisions.

9

Do you have shots instead of taking methotrexate orally? I haven’t had a problem with the cold maybe because I’m also going through menopause too.



Dr Marc said:

Sorry you got the news - it is now about one year ago I too got the news and was initially scared by the drug information from drug companies, etc. I did see that many on this support site took MTX and the Biologics. I trolled around more and then also had some more one-on-one conversations with some of those on this list. I became much, much more comfortable that taking the medications were necessary and not as bad as I had thought. It turns out that all the dire warnings you read from the drug companies are a legal CYA thing and the scary things are rare. And to add to this is fact that MTX (methotrexate) is given at a much lower dosage than when it was used as a chemo drug for cancer.

I am lucky to have a brother-in-law who is a pharmacist at a well respected medical facility and also spoke to him. Keep the following statement imbedded in your brain: BETTER TO BE ON THE MEDICATION THAN NOT.

Sorry to say, but as already noted – PsA is progressive, it cannot be stopped/cured but it can be slowed and restore as much functionality and relief from pain as possible. I got considerable relief from my spondylitis and hand pain from MTX and then more so with the addition of Humira. Before I was on meds. I could barely open my car door. At some point the Humira began to fade in its effectiveness and I started Embrel a month a go. An issue with an old injury of an ankle was causing great difficulty walking and much pain and trouble to the knee. Enbrel has almost completely eliminated that problem ( apparently the PsA also resided in that ankle/foot due to the old injury and didn’t know it).

My two cents is that doing without meds is a bad idea and the fact that you think you have a mild case now makes it even more important to start to fight back now to prevent further progress at a pace yet to be determined. I look forward to my weekly shots (some people are OK with every other weekly shots of a Biologic) as I know how much they mean to my quality of life in pain reduction and functionality and keeping the progressive damage down to a minimum. BTW I am age 68 and live in the greater Chicago metro area where cold and PsA don’t go well together.

I hope this posting helps you in wrestling with the issues in making your health care decisions.

10

I’ve had a hard time dealing with this diagnosis, I almost think anything would be better than this. I’ve cried numerous times about this and think how much more can my husband take? First my family issues and now this. I think that I will be a burden on him. Does anyone else have their arms hurt where the muscles are?



crookedtoes84 said:

Hi Mike welcome, it is nice to see another person from MA on here. It is a shock to hear the news especially, when your not even thinking something this chronic and severe is going on. It will take time to set in. I was diagnosed in March of this year and I still have to cope with the fact that there are things I will struggle with because of this disease. The important thing is to not over limit yourself and become sedentary, because then the disease will get worse. I am still trying to find that line and it is tricky what is me trying to do to much and when am I becoming afraid and not doing enough. I hope you make a healthy peace with this diagnosis and that you get a good treatment plan going.

11

I take MTX as five little pills all at once, once each week. The shots are only the Biologic (was Humira and now Enbrel).

Hope said:

Do you have shots instead of taking methotrexate orally? I haven't had a problem with the cold maybe because I'm also going through menopause too.

Dr Marc said:

Sorry you got the news - it is now about one year ago I too got the news and was initially scared by the drug information from drug companies, etc. I did see that many on this support site took MTX and the Biologics. I trolled around more and then also had some more one-on-one conversations with some of those on this list. I became much, much more comfortable that taking the medications were necessary and not as bad as I had thought. It turns out that all the dire warnings you read from the drug companies are a legal CYA thing and the scary things are rare. And to add to this is fact that MTX (methotrexate) is given at a much lower dosage than when it was used as a chemo drug for cancer.

I am lucky to have a brother-in-law who is a pharmacist at a well respected medical facility and also spoke to him. Keep the following statement imbedded in your brain: BETTER TO BE ON THE MEDICATION THAN NOT.

Sorry to say, but as already noted -- PsA is progressive, it cannot be stopped/cured but it can be slowed and restore as much functionality and relief from pain as possible. I got considerable relief from my spondylitis and hand pain from MTX and then more so with the addition of Humira. Before I was on meds. I could barely open my car door. At some point the Humira began to fade in its effectiveness and I started Embrel a month a go. An issue with an old injury of an ankle was causing great difficulty walking and much pain and trouble to the knee. Enbrel has almost completely eliminated that problem ( apparently the PsA also resided in that ankle/foot due to the old injury and didn't know it).

My two cents is that doing without meds is a bad idea and the fact that you think you have a mild case now makes it even more important to start to fight back now to prevent further progress at a pace yet to be determined. I look forward to my weekly shots (some people are OK with every other weekly shots of a Biologic) as I know how much they mean to my quality of life in pain reduction and functionality and keeping the progressive damage down to a minimum. BTW I am age 68 and live in the greater Chicago metro area where cold and PsA don't go well together.

I hope this posting helps you in wrestling with the issues in making your health care decisions.

12

Mike, Welcome! You are SO lucky to have been diagnosed after a relatively short period in limbo, and I’m glad your docs think your disease is mild. But please remember the old saw “Fear the disease, not the drugs”. When this disease is mild, it can run for years as little more than an annoyance. Unfortunately, it can also turn on you and do very serious damage relatively quickly, as Karen suggested.
I’m a case of how not to treat PsA. My diagnosis came after years of head scratching by many doctors. By the time I was diagnosed, I had already lost both knees, and I had erosions in my feet. My rheumatologist at the time, for some reason, thought that I was a mild case and put me on very conservative treatment. Within a year, I had lost both hips. Then, finally, I got a new rheumatologist and was put on aggressive therapy. Unfortunately, it wasn’t soon enough: next week I’m seeing a foot surgeon about the terrible damage in my feet.
I hear you about not wanting to put anything that’s not natural into your body. But titanium knees, hips, plates and screws aren’t natural either.
Have I suggested that you need to get the book which I recommend in “Book Reviews”, above? Knowledge gives you power over this disease.

13

http://www.sciencedaily.com/releases/2013/10/131027122927.htm

A good article about aggressive treatment.

14

Hi Mike,

Welcome! It's a friendly place here that we'd all rather not need. I don't spend a lot of time here, but when I do, I find it helpful. I also fear the drugs and as a result have made some bad decisions that I can't reverse. I was diagnosed in 2007, but likely it had started 2 years prior. It had been suggested by a podiatrist that I went to to see a rheumatologist, but I resisted. By November of 2007, I had no choice, My feet weren't bothering me as much as they had been, but I had severe wrist pain and a one year old baby I was having difficulty picking up due to the pain. I went to an orthopedist who said it looked like I had a big cyst and would likely need surgery. I went for a second opinion and he said that I absolutely needed to see a rheumatolgist. So I did, and that's when it all began. He said I needed meds immediately. At that point I was in a desperate amount of pain, so I didn't question it. I couldn't tolerate the first drug we tried and so i went on Methotrexate. I did fine on it, eventually even switched to shots weekly as I've had diabetes forever so wasn't afraid to self-inject and he said it'd likely be more effective. It was, my pain went away and my joint function returned. But I didn't feel good for a day after I took my shot. So I decided that since I felt so good, I wanted to stop the meds. My Rheumy didn't argue (which I don't understand now, looking back). So, I was med-free for 2 years after being on MTX for almost 3 years.

I then decided to switch MDs as I hadn't gone in over a year and saw someone new who had me do an x-ray of my left wrist which showed progression of the erosions that were already there when I was diagnosed. He said I have "moderate to severe" disease and needed to get back on meds right away. I was shocked since I'm mostly very functional with pain that comes and goes. I can't imagine that what seems to me to be mild, is actually attacking my body silently from the inside and when I asked him how it can be considered to be "moderate to severe" when I'm not functionally impaired his response was that if we don't treat it, I will become impaired.

SO...herein lies my big mistake. I should NEVER have stopped the meds. MTX was working. I went back on it and had an allergic reaction to it after being off it for so long. We've yet to find something else that works or that I'm not allergic to.

Now I fear the disease (I also fear the meds because I don't tolerate meds well), but I fear the disease more.

Keep your quality of life...take the meds! Our cold Massachusetts winters can be hard with this disease (I'm way out in the Western part of the state). I hope they find something that works easily and quickly for you!

Be well...jackie

15

Hi Everyone!!

Thank you all so much for all your stories and information. It means more to me than you know!! Although it stinks to have to meet everyone under the circumstances we are in. I am very thankful for all your support!! :)

Many Thanks,

Mike

16

Hi mike! FWIW I think everybody is from MA (except the Kennedys) is like you. minus the PsA Must come form 30 years of watching This Old House. I am into my thirtieth year of restoring an old log stage coach station. Not a lot of the original left but the 1920's improvements are there.

Well you got the gentle version. Much of the damage from PsA is what we call"pencil in a cup" If you look at an image thats what it looks lie the bone going into the joint loos like a sharpened pencil in a tea cup. The interesting thing is that it generall doesn't hurt while it happens. The body being what it is tries to fix it. Just like your restoration project (and mine) most of the problem is undoing the fixes. The point is you can be in serious TROUBLE befor you have a clue. That isn't even considering what could be happening to your organs.

I understand the not putting anything natural into your body, naturally fermented grape juice has been to cause a rather disconcerting and incurable condition called veisalgia. (we call it a hangover) Depending on how religious you are, there isn't anything that isn't natural (that was a joke) There isn't anything more organic than hemlock (that isn't a joke) the cool thing about the biologics is that they are human protein (mostly) that has a specific job, they simply grow it in a chinese hamsters uterus to get it ready for us to use - sort of a medical version of making beer. Okay its a bit more complicated than that. The beauty of all of the biologics is that they are simply are "encouraging" the body to do its own thing naturally.

In any event as you become wrapped around these things, hoepfully you will get the one thing that is critical There is more to this disease than "pain" and that pain is the least dependable measure of anything. I seem to remember coming out of a rather difficult operation years ago and the medic checking me out asking how I was feeling and me assuring him I felt fine but needed a shower and a drink in particualr order (sorry about this ladies) him say "Great- but what about that bullet in your ass????" PsA could be/is a bullet in your ass.

17

I am an Architect in Utah and I to liked to rehabilitate old homes. I currently own a 1893 home in Utah. I started with the hopes when I purchased the home in 1990 to being able to complete it. Every year that goes by I do less and less because of mobility issues. I have had a bad back for most of my life. About 15 years ago or longer I was having issues as you described. 10 years ago my wife divorced me because I thought I could no longer work. Great women that I supported for 28 years. I remarried about 18 months later. We moved into my new wife's home. We were just discussing last night what needed to happen in each room so that we could hire some one to come and finish it. I spend about 50% of my time in a wheel chair now. We need to buy a single level home! I can no longer do the work that I once could. I have had the home for sale for 2 years...as is...it has not sold nor has anyone been interested in it. A year ago. I hired a laborer and I directed the work. I found out after I order concrete that he had not done concrete as he lead me to believe. I finished the concrete. I spent 6 months is sever pain. I am only now getting back to where I was over a year ago. That is from going on the Methotrexate and Enbrel and several other medications.

My lesson from all of this is do what you can now...do not do more that you can handle in a weeks time. Do not do the whole house at once unless you have the resources and help to do it. Your resources can change quickly when you have several Dr. appointments a week. Start the drugs now to prevent damage. The drugs can change your life in more way than you can fore see. It can prolong your ability to earn and be productive as long as possible! They can indeed change your life. I should have started them 15 years ago. I have joint damage in almost every joint in my body.

I use the computer to earn my living. My ability to do that is starting to slip away. I cannot sit for more that a few hours before I need to lay down for a bit. I take several hour breaks a day. I work from home now.

I do not tell you these thing to scary you but to inform you of possible things to come. I am 55 and can not walk more than a few hundred feet at a time. My feet, ankles, and knee are damaged. My back can not handle the jogging that it gets with my unsteady feet and ankles. I just had surgery on both wrists, to reduce swelling in my hands...It did not work totally. I am looking at getting injections now in both knees to help with the pain and help to reduce the damage.

I was not treated for PsA until a year ago. I had a poor PCP. I change him a year ago. A lot of thing have change this last year. I am now being treated. I am gaining some mobility but at the same time I am losing it.

18

Thank you so much tntlamb and Not Understood for your responses. I have a lot to think about and I definitely will be using this community to help me with all my questions.

Many Thanks,

Mike

19

Welcome to the group Mike. There is a wealth of info here and always someone to listen.

20

Hi! I have been diagnosed a couple years but had symptoms longer. My doctors thought I had chronic fatigue, mono syndrome, fibromyalgia - everything except arthritis. It really blew my mind when my rheumatoid factor cam back elevated. I was a real DIY’er, too. I get so frustrated when icant do the things I used to be able to do and friends on here have been encouraging when I feel discouraged or sad. It is a disease so your life will be changed. I think we go through stages I acceptance. My family did, too. The worst part for me was te unrelenting fatigue-zombie-me. Eventually I was staggering through my days. My rheumy is great and switches my meds up I things aren’t working or I can’t tolerate something… Methotrexate, anyone? OMG- I hate that stuff. It might work (yes I was on injections) but I felt so barfy I couldn’t look at that vile vial without feeling sick. We had some soft soap the same color as the mtx and I had to throw it out because looking at it made me nauseous! But he rolls with the punches. Humira is my lifesaver. My PsA started out mild but eventually I couldn’t roll over in bed without help- it is hard for me to even remember this now- and had to use a step stool to get in the bed. I had to have help getting in and out of te car or from the dinner table. Last year I didn’t out up a Christmas tree. This year, I decorated for Christmas although I overdid it and I am paying he price (swollen ankles and painful back). But at least I had he energy and desire to decorate!! I feel like a different person. I totally agree with whoever said try to stay as active as you can. I wish we had figured out what was wrong with me a few months sooner. I lost precious time I can’t get back. The problem is that some medications work for some people and others don’t. It will take time to find the ones that work for you. It took a year and Hal to find a combo that helpe me the most. By that time I had really lost ground in my physical fitness dept… That is depressing- literally. It is hard to feel like doing things when just cleanin your kitchen or mopping makes you ankles well like watermelons or your elbows burn and ache. All my joints are affected. My advice would be to not wait for that reason. I hope that helps. And welcome!