I don't know how to go forward from here

General
1

This is really duplicate of what I wrote today in my new member profile. But thought if I put it out here someone can maybe respond. And thank you for the welcome I can't believe I found this site

When I had my 4th child at 42 I contracted C-Diff. C-diff is a GI bacterial infection that can be life threatening if not treated. It makes you so sick you want to die. Just when getting over it, my knee swelled to 3x its size. 5 more years of knees swelling and pain off and on til it got so bad I went to an ortho surgeon sure that I had torn something. After Xray, MRI's etc both knees were so bad I could hardly move. When told the MRI showed only inflammation I began to cry. I thought I must be imagining the pain was worse than it was. When the doc saw me try to get up to walk out in tears she stopped me and said this has to be autoimmune and sent me to rheumatologist. My CRP was 6.9 so rheum started prednisone which I hate. It took several more months before the rheum determined it was PsA. I've never had skin lesions so we went through "is it RA-is it this-is it that-more blood work" til the day I showed up with sausage toe and negative RA factor lab. My trigger was the c-diff. I was prescribed methotrexate, Aleve, Prilosec, folic acid, prednisone. Since I last saw my doc I tapered off prednisone because it makes me nuts and gain weight. I held off taking mtx from fear then finally
took it and had mouth sores painful enough that I missed work a few times. So I stopped taking it. Then my year-long flare subsided on its own and now my swelling is way down. My symptoms currently are constant mild throb deep inside my knee radiating down my leg, low back pain when I'm on my feet too long, stiffness when I get up in AM or get up after sitting more than a few minutes and extreme fatigue for all but 4-5 hours each day. I know it sounds like a horrible existence to those without PsA but compared to how I’ve been in the past I deal with it. I also know that sounds like I'm not too bright but the truth is I can't accept this is real or that I have to prevent damage with horrible drugs. I tell myself its my age (48) and that I need to lose 20 lbs. My husband / family don't pay it attention anymore since the flare left and that makes it harder for me to treat it as real. Maybe I don’t remember how normal feels. So I struggle with is this my normal? What if I do nothing? Why can’t I just manage with prednisone, ibuprofen or pain meds during flares? My doc says take mtx or permanent damage is inevitable. A few last comments, I come from a family that has cocktail hour (our joke) before dinner. At the risk of sounding like lushes I’m not talking about boozing it up into the night. We sit, relax, talk about our day etc. Once dinner prep starts we don’t get that private time the rest of the night. I never considered it a bad thing until I was told to take mtx, no alcohol except on special occasions and take these drugs from now on. I’m not able to accept “you can have juice with the adults during cocktail hour” for the rest of my life. I work, have a huge property to take care of, my husband and I run our own business, we have a 6 yr old, 2 almost adult kids living at home and lots of stress. It sounds cliché but we work hard and play hard. I’m not able to get my brain around PsA the rest of my life. At my work I see recently diagnosed cancer patients and the word cancer as a side effect raises my hackles. So if there’s ANYBODY that has similar feelings I would love to hear them. I feel like I’m the only one who is sweeping it under the rug because I don’t have time or patience for this. Sorry to write so much but Ive held it in for so long!

2

Hey mads,

Like your dr said..."permanent damage is inevitable" if untreated. If you have to start out with MTX you have to take folic acid. Ask your Dr how much you should take. I took 3mg and could've used more. The folic acid will help with the side effect like; mouth ulcers and hair loss. I would also suggest using the injectable MTX instead of the pills.

If you can, push for a biological drug like Enbrel. I have used Enbrel for 13years and have had no side effects.

You need to accept the facts for what they are. Unfortunately, your only choice is to do it now or wait untill it's too late. If you get it under control now you could go the rest of your life living fairly normal. If you wait untill it gets out of control, that's exactly what the rest of your life will be.

3

Thank you for your reply! I have never spoken to actual people who know what I'm dealing with. It's probably the only thing that will help me get on the right track. It may sound silly but I feel like I've thrown out a life line and someone has answered, lord knows my family can't save me.

4

Hello & welcome to our group. I am so glad you found us. You sound so over loaded. I recognize it all to well. Unfortunately none of that is going to help your PsA. I know it sounds frightening, but once you get it under control it is really just a matter of learning how to live a little differently. I was diagnosed about 3 years ago. I am on infusions every 6 weeks. It is really making a big difference. But I can not over do it or I find I will flare. I have learned to not try to do it all anymore. I ask for help & do not lift anything to heavy anymore.....not even my grand kids. I chose to take control of my PsA & not let the PsA take control of me. I bought myself a cane that I keep in my car & one at home. I have teenage girls that sometimes like to shop at the mall!! God help me, it is a sure flare & I find I am near cripple after shopping with them. So I keep my cane near by to help me. I don't want to give in to the pain & yet don't want to over do it either. Presently my wrists are fusing & I have terrible carpal tunnel. But I deal with only today, tomorrow is not here yet. Stress will make the flares worse as well. I am SLOWLY learning how to avoid them as well. This group has been a BIG help to me also. Knowing I wasn't crazy was a big relief for me. Finding "others" like me, who were going through similar things was reassuring. So often family does not understand. You are with friends here. Feel free to ask all the questions you need. Read stories & others advice. Learn & take control of your situation. Do what works for you. We all very similar but what works for me may not work for someone else. Be sure you have a rheumy you trust and are comfortable with. Most of all take time for YOU!! You are probably so busy taking care of everyone else. Well now it is time to take some time for you. I am here if I can be of any help to you feel free to contact me anytime. Please be sure to keep us posted on how you are doing. Sending some hugs your way. (((( HUGS))))

5

Hey mads,

Anytime you need to talk you can send me a message. I've had Psa for a long time. I'm not an expert but, I know a little. I've probably, like most people here who have had this for a few years, have experienced most of the feeling, fatigue, pain, depression, anxiety and meds that you have or might have to. No one gets left behind if I can help it!

I understand what you mean about the family. I've dealt with the "on my own" feeling for 20 years. In thier defense, I hide it well or atleast I did!

madseason said:

Thank you for your reply! I have never spoken to actual people who know what I'm dealing with. It's probably the only thing that will help me get on the right track. It may sound silly but I feel like I've thrown out a life line and someone has answered, lord knows my family can't save me.

6

Hello there,

This disease sucks! We have it. It's unfair.

Your thoughts and feelings are normal, most of us have been there. The trouble is you cannot change it, all you can do is take control of the situation as much as you can. We can either bury our head in the sand, or we can get up there and fight to take control.........the thing is, only we can make that decision, our families can't, our doctors can't.........its down to us.

But I'll tell you this, we will be here for you, we will help when you need us to.

Some of us can give you a shoulder,

Some of us can dangle a carrot,

Some of us can goad you with the cattle prod of tough love,

Some of us have sh**loads of research and experience,

But all of us understand where you are coming from, cos we've been there too

good luck x

7

One harsh fact. Either you treat the disease or the disease consumes you. There is no way around it. there is no easy way natural way or guaranteed way. if there was, we'd all be doing it and the drug companies out of business. Once you get past that the next thing you learn is all the "hype" about the drugs comes MOSTLY from one of three sources. Lawyers, quacks, and "nuts" Lawyers either trying to prevent problems for their clients caused by other lawyers. Yup there can be some nasty side effects and one should be aware. however, because they can doesn't mean they will. The fact is the ones like cancer etc have actually been pretty much disproven but even with the initial testing (which follows a drug forever) you have a higher chance of death from eating peanut butter. (peanut allergy - i have grandson in the midwest who's school has outlawed PBJ snawiches in sack lunches)there are of course the quacks selling machines lights vitamins natural herbal remedies etc and then the nuts; these are the folks who have failed at one or so treatments and they don't blame the disease they blame the doctor or the drugs. On the AS forums there is a gal who can't talk about treatment without mentioning that not your get your hopes up about biologicals because she has failed three of them but gets help from NSAIDS and vicodin...

There are a lot of fans of the meds here.

It takes US a long time to understand our disease sometime years, but we don't seem to have nuch problem getting ourselves worked up about our families not understanding Some are better than others (and some are just plain horrible) BUT as we are trying to figure out what we are doing and where we are going with this thing how can expect much of our families. Some one said do what you can do and let them figure out what you can't... Its pretty good advice.

Here's my theory on families. There isn't anyone with a seeming NORMAL family that can't tell a "Holiday Horror Story" They can't deal with each other too well at the best of times The stress is extraordinary. 30 - 70 percent of all PsA flairs are STRESS related. The more we try to deal with families the higher the stress level goes. If normal; families end shooting each other at thanksgiving dinner, we shouldn't have too high of expectations. They will come around based on leadership. Once you get YOUR stuff together, you can help them get theirs.

On the liquor thing, I can't help. I make it, its my hobby and I enjoy it. There are meds that allow a nip I take those. When I have to take a course of something else I follow the Catholic boys school rules and have my liver checked frequently (The school rules btw were we were told we would go blind from certain "impure activities".... I informed the MISTER that I'd quit when I needed glasses. It wasn't the worst strapping I got in school but pretty high up there......)

Bestof luck

8

yes lamb, can just see the naughty school boy that you were :)

tntlamb said:

One harsh fact. Either you treat the disease or the disease consumes you. There is no way around it. there is no easy way natural way or guaranteed way. if there was, we'd all be doing it and the drug companies out of business. Once you get past that the next thing you learn is all the "hype" about the drugs comes MOSTLY from one of three sources. Lawyers, quacks, and "nuts" Lawyers either trying to prevent problems for their clients caused by other lawyers. Yup there can be some nasty side effects and one should be aware. however, because they can doesn't mean they will. The fact is the ones like cancer etc have actually been pretty much disproven but even with the initial testing (which follows a drug forever) you have a higher chance of death from eating peanut butter. (peanut allergy - i have grandson in the midwest who's school has outlawed PBJ snawiches in sack lunches)there are of course the quacks selling machines lights vitamins natural herbal remedies etc and then the nuts; these are the folks who have failed at one or so treatments and they don't blame the disease they blame the doctor or the drugs. On the AS forums there is a gal who can't talk about treatment without mentioning that not your get your hopes up about biologicals because she has failed three of them but gets help from NSAIDS and vicodin...

There are a lot of fans of the meds here.

It takes US a long time to understand our disease sometime years, but we don't seem to have nuch problem getting ourselves worked up about our families not understanding Some are better than others (and some are just plain horrible) BUT as we are trying to figure out what we are doing and where we are going with this thing how can expect much of our families. Some one said do what you can do and let them figure out what you can't... Its pretty good advice.

Here's my theory on families. There isn't anyone with a seeming NORMAL family that can't tell a "Holiday Horror Story" They can't deal with each other too well at the best of times The stress is extraordinary. 30 - 70 percent of all PsA flairs are STRESS related. The more we try to deal with families the higher the stress level goes. If normal; families end shooting each other at thanksgiving dinner, we shouldn't have too high of expectations. They will come around based on leadership. Once you get YOUR stuff together, you can help them get theirs.

On the liquor thing, I can't help. I make it, its my hobby and I enjoy it. There are meds that allow a nip I take those. When I have to take a course of something else I follow the Catholic boys school rules and have my liver checked frequently (The school rules btw were we were told we would go blind from certain "impure activities".... I informed the MISTER that I'd quit when I needed glasses. It wasn't the worst strapping I got in school but pretty high up there......)

Bestof luck

9

Welcome to the group, Mads. I’m glad you found us, but sorry you need us! You’ll find some great support and advice here. If you ever need someone to lean on you have found the right place.

You are getting some great advice already, but I’d like to add my voice to the choir. You really do need the meds. As scary as they can seem for all of the things that might happen if you take them, life without them WILL be horrific. PsA is a chronic destructive disease and there is no cure. You will not get better on NSAIDs and prednisone, you will get worse. Plus there are very common side effects to prednisone and NSAIDs that are just as scary, maybe even more so because they are seen quite frequently.

I think that how people react to a PsA diagnosis is similar to Kubler-Ross’s Grief Model. You are probably familiar, but here is a refresher: the stages are denial, anger, bargaining, depression, and acceptance. Many of us experience these feelings/behaviors when diagnosed (not necessarily in that order, and some experience more than one at a time). It’s normal to grieve. Your life is changing, there may be some things that you can no longer do, there are more doctor appointments, its overwhelming, you feel like you are losing yourself, and more. However, if your feelings/ behaviors start to interfere with your treatment, there is a problem. It’s good to be aware that you will more than likely encounter these feelings so that you are prepared for them, and they don’t wind up taking over.

The sooner you wrap your mind around the changes that will take place in your life, the better. You have to adapt in order to take care of yourself physically and emotionally. You may have to change the way you do things in order to continue doing them, like your cocktail hour. It seems to me for what you say, that the most important part of that is the alone time. You can still have that time, in fact, you probably need it. For me, letting go of the booze wasn’t the worse thing in the world. Or you can do like Lamb does, drink until your blood work tells you not to. :slight_smile:

Stop hiding this from your family. They will never come close to understanding if they don’t know what’s going on. A lot of folks say they hide things to keep their loved ones from worrying. Their families are probably already worried and keeping them in the dark doesn’t help anything. Not being open leaves them with their worry and their imagination to run amok. There will be times that you need support and understanding. If you have a loving family, why would you chose to go it alone? This disease can be terribly isolating without us being self destructive and adding to it.

I am available if you ever need to talk.

The Grumpiest of Kitties,
GrumpyCat

10

I am not a newby, but I feel that some of us that have been around for a while with PSA have plenty to offer.

Mtx has been around for a over 25 years. If your Rheumy starts you on this he should gradually increase the dose to help your body adapt. It should also be taken with Folic Acid on every day except the Mtx day, this will help prevent some of the side affects. The dose is extremely low in comparison to it being used for Cancer so the side affects can be minimal for most, but not always. My hair thinned for a couple of months but hardly noticable once I had it layered cut. It soon came back to normal and I am still on Mtx and have been for over 2 years. You will never know until you try, how your body will cope.

Prednisone can cause permanent damage to some people if used long term and cause puffiness. Check for yourself and do a net search. Mtx in my opinion is far safer than Prednisone and has less side affects and you do not risk permanent damage to your adrenal system. It is far better to protect yourself from further joint damage.

I know this can be a reality shock, but sometimes we have to re-assess our lives and make some different choices on how we can cope and live with having PSA. This often means the life we know will have to change. It is far better to face this head on and make sensible plans for your family and your future than to wake up one day and find you can't manage another day the way you are going. If you continue to stress it will only make your condition worse. Getting all your stresses under control is extremely important to prevent you from getting worse.

It is not easy coming to terms with this disease and then leaning how to live with it and make the most of what we do have.

Giving up "cocktail hour" is unfortunately something that you may not be able to get around if you want your meds to work for you. My Rhuemy said if I take my Mtx at least 5 days before the weekend I could have a glass of wine on the weekends. I rarely do, but this might be something you could discuss with your Rhuemy.

You may need help, talk to your doctor and he may refer you to a Counsellor/Therapist which will help you work through all this.

Just remember your not alone and there is always plenty of good advice on this site.

11

Oh my gosh! I feel so warm and fuzzy inside :) I never expected to get such a response from this group and I feel like some of the burden of confusion has been lifted. I read every word from all of you several times over, like I was starving and kept sticking my hand in the chip bag - lol. Its so amazing to read others expressing the same feelings that I have or had or will have.

I'm just about ready to leave for my doctor appt, haven't been checked in almost 3 months so we will see what happens with possible med changes she may have in store for me.

One thing that hit me after I got a look at the map on this site and all the far and wide locations of members was this: Where I live the weather ranges from cloudy and gray with light rain to gray and cloudy with heavy rain for 10 months out of the year. We are now almost at March and it will be months before we have a shot at warm and sunny. So this is the first "dead of winter darkness" that I have been through since getting the diagnosis. I bet thats not helping my motivation towards a positive attitude very much!

Again, thank you for having this site and giving me a chance to learn more and remind me that its not a death sentence.

p.s. I am told I am very stubborn so I may be needing some tough love in the future to keep me in line :)

12

Make your stubborn nature work in your favour; there's nothing better than putting it to work on fighting to give yourself the best possible outcome by refusing to let PsA beat you :) x

madseason said:

Oh my gosh! I feel so warm and fuzzy inside :) I never expected to get such a response from this group and I feel like some of the burden of confusion has been lifted. I read every word from all of you several times over, like I was starving and kept sticking my hand in the chip bag - lol. Its so amazing to read others expressing the same feelings that I have or had or will have.

I'm just about ready to leave for my doctor appt, haven't been checked in almost 3 months so we will see what happens with possible med changes she may have in store for me.

One thing that hit me after I got a look at the map on this site and all the far and wide locations of members was this: Where I live the weather ranges from cloudy and gray with light rain to gray and cloudy with heavy rain for 10 months out of the year. We are now almost at March and it will be months before we have a shot at warm and sunny. So this is the first "dead of winter darkness" that I have been through since getting the diagnosis. I bet thats not helping my motivation towards a positive attitude very much!

Again, thank you for having this site and giving me a chance to learn more and remind me that its not a death sentence.

p.s. I am told I am very stubborn so I may be needing some tough love in the future to keep me in line :)

13

Bella! What a wonderful post! You said everything I wanted to say, but did it so much better. :slight_smile: those are some words to love by. Thanks.

14

Hiya,

Your conversation is a very familiar reality. I also have a very stressful, busy, but otherwise very fulfilling life. This PsA is a huge drag but it's just another bump in the road. More like a speed bump!

You sound like a fun loving and intelligent person. You can continue to be that person... just modified a bit.

Hang in there... we're all rootin' for ya!

Chris