Diagnosed less than a year ago. Feeling alone and lost

Welcome Greetings and Introductions
1

Hello,

I am very new to this forum and to online communities. Long story short... 3 years ago I was on a roll, going back to college and looking forward to a bright future with maybe a late kiddo in the near future (Was 36, now 39) But... I was living in constant pain and my left foot looked like something taken right of of a corpse. I knew about psoriasis. My Grandma had it, my mom has it, I had this spot in my ear that would not go away and thisthing my husbNd called "my rotten foot". M

ost importantly, I didn't know about psoriatic arthritis.

My fingers were so swollen, that I could barely manage to open my wallet to pay for the Xtra Strong Tylenol at the pharmacy when I ran into my mother. Being the mother that she is, she ran to the clinic and got me an emergency appointment. An hour later, I had RA and was on Celebrex and on the waiting list to see a rheumy.

6 months later, my husband was carrying me in his arms to get me to bed, I couldn't "manage" a toothbrush and would wrap a healthy wad of paper towels around most kitchen utensils so they wouldn't "hurt my hands". I was walking with a cane 3 days out of 7 and would sleep less than 3-4 hours a night. It took my family doctor seeing how miserable I was for me and send un a recommendation to finaly get a call from the rheumy.

And it came down... Psoriatic Arthritis. What? Does that even exist?

Was put on Methotrexate pills and managed it for a while. Then my stomach couldn'd live with those 5 pills anymore so each of my Saturdays for a month 1/2 were punctuated with vomit and diarrhea. Yay! That also meant I wasnt taking my medication. The pain and swelling came back like 2 bitches on the prowl.

I'm now on a 8 week run of Prednisone (my face looks like a beach ball and a waist is something of the past) and on

Methotrexate injections at the maximal dose allowed.

Plans for a kid are now on hold until I get a grip on that thing but I'm not getting younger. I fear I will never have kids because of PsA and I am angry that life life dealth me such a shitty hand. I need support from people who understand the disease and just need a place to vent where people do no se you as just a lazy ass. I'm hoping for a safe haven.

2

Sorry, if I sound whiny... I'm not. In fact I'm grateful that the only downfall is that my right pinky finger is forever bent.

Just need someone to tell memthatnit does get better somehow, someday.

3

HI,

Sorry you are dealing with this, I am further along in the game and can tell you I can't imagine also not having children.

The truth is that it was very difficult to raise a family and I didn't know why at the time. They are great and have had to do more, younger, and now I worry if one of them will get what I have.

My first trouble with the arthritis was 32. Now I am 53.

I was recently off my meds, one quit working, I was allergic to another. All I had was prednisone, I get that. That's why I am up. Now am on another, Cimzia, it is as good as it gets just 1 week. I don't have surprise pains that make me scream, the bumps on the road don't feel like a knife in my shoulders, back and neck like last week.

If I have learned anything, it is that it can change on a dime for the better when you find the right treatment.

I have also been in the angry phase the sad phase the denial phase, then comes acceptance. I appreciate when I am not worse. I have a hard time dealing with it when I am really ill. But, I do realize it is not going to stay bad. Who knows what gene fixing situation might come. I have some hope there.

Sometimes the waiting made me crazy. The whole drug dilemma is constant. Some of them are out of this world in cost. Mine now costs more than my annual income, so I feel vulnerable.

I have decided to do the best I can to feel the best I can.

I was unable to have children for the first 5 years and had just given up and adjusted my expectations. I think it helped a lot that my husband just accepts things the way they are. I strive, more than I should, to get what I want, or what I think he wants. For no apparent reason that changed and I was very surprised. I have 3 now but I would have been a foster mom if that hadn't happened. Do you feel well enough to take that on? I know people have their eggs frozen to give them more time. I know that must be very expensive and difficult.

I hope you feel a little better about it all and get some better treatment that helps more, soon.

4

Dear Shy, welcome. You’re there where so many have been and yes, it does get better. One of the things that makes it better (psychologically, anyway) is being able to come here and vent with people who truly get it. I’m glad you found us, but what a shame that you had to come looking!

By now, you’ve probably found the Newbies’ Guide and New Member Check In under the DISCUSSION header (and scroll down). Do introduce yourself there. The Newbies’ Guide should answer ssome of the questions you no doubt have.

If you look under BOOK REVIEWS, there’s a book that I recommend which is probably the best all-round guide to PsA written for lay people. It’s by two world-class PsA researchers. The Kindle version is a bargain, and if you don’t have a Kindle, you can download the free software that will have you reading it on your tablet or your PC in a few minutes.

Whether it seems like it or not, things are already better for you than they were: you have a source for information and support. I hope you find this a good place!

5

Hey there Shy - welcome! Let me second the recommendation of Seenie. I purchased the Kindle book and it has been the best reference I have read.(Thanks Seenie) It explains much more than you have time to cover with your Rheumy. 2nd recommendation I have acted on from this group is to find a Rheumy who you feel comfortable with and also find a GP who understands to support you in between specialist visits. I have this set up and feel so much better psychologically, if not physically. I've had a couple of hiccups in the last couple of months (cellulitis - sigh) but getting back on track.

I'm glad you found this group, as I have found them nothing but helpful :) Good luck xx

6

Shy, nice to meet you. Your story reminded me so much of mine - same timeline, ages, active healthy person to barely able to walk a block. The only difference was I had my little daughter at 35, then it hit. Both a blessing (not having to think about the effect the treatment had on my fertility, because by god I couldn’t deal with a second child so I didn’t have to think about it after, lol!), and a curse (how do you explain to a 1yo that you can’t pick her up to cuddle her because if you try, it feels like someone is shoving I’ve picks in your shoulders?)

But the bit I’m happy to be here to say is that it does get better - so much better. Most of us really do find a med that makes a significant difference (and by the way, if you are thinking about kids you need to really think hard about MTX - particularly if its not helping you much - and move onto something that will help, and not be an issue for you to pursue having kids).

It sometimes needs some persistence, sometimes its almost instantaneous (I got nothing on MTX or plaquenil, others get a slow and steady change, for me Enbrel took only ten days, for others its months). But it always gets better. And we always get better too - by that I mean the way we see things - which is no small part of life.

It really does get better - there is indeed plenty to look forward to!

7

It does indeed get better. Methotrexate can take a while to start working, but can make a real difference. There are also combination therapies, where you can combine 2 different DMARDS, and you can continue (under medical supervision) to use NSAIDs. A few thoughts for you. If you're not on folic acid with the MTX, talk to your doctor about prescription strength. If you are taking an NSAID on a schedule, talk to your doctor about taking prilosec or an equivalent proton pump inhibitor.

Plans for getting pregnant will need to be on hold as long as you are taking certain medications, and this includes MTX. I'm sure your doctor already spoke to you about using really good birth control. Pregnancy and breastfeeding is acceptable on some of the biologics, so this would be something to talk to your doctor about. A friend of mine continued Humira for Crohn's disease while pregnant and breastfeeding.

You're in a tough place right now, and the prednisone won't make it any easier to emotionally handle. But as you get things under better control, which you already know can take some time, it will get easier.

8

Hi- I wonder if your rheumatologist is being aggressive enough. Sounds to me like you should be on a biologic. I am very sad for you not having children. Mine were in jr high and high school when I was diagnosed. I cannot imagine how difficult it would have been to try to take care of a baby or toddler. My children still do not understand what is wrong with me. I have missed out on a lot. I think that you have found a safe haven here. It helps everyone here to hear about what is going on in other peoples lives and to know that you are not alone. I hope that the prednisone helps.

9

Sorry for the late welcome, but I would like to welcome you all the same. This group has done wonders for me, and every day I am grateful for the support and wisdom that I have been given through this simple site. I hope that you are able to find some of the same, and that it helps you better cope with the grief that you must be dealing with now. I think that the pain in your words has struck a chord with many of our members, because we have all experienced grief and sadness in our journeys with PsA. Allow yourself some time to be sad, some time to be mad, and then allow it no more. It CAN be better than what you are experiencing now. In order to get there, you will need to be your own advocate and biggest cheerleader. Many of us don't just live with this, we are able to live well with PsA. Just so you know, the very hardest part is right where you are now.

I am not living the life that I had planned for myself and that is, in large part, due to having PsA. But, I am living a very good life and it's one that I wouldn't change for the world. In order to do that, I had to accept that my plans had to change until I was able to get myself well. I let myself grieve for my losses and then I worked on my health. Until the disease is managed, life is a mess! So, I focused on getting myself stable, and now I am building a life that makes me happy and lets me take better care of my body.

10

Thanks so much for the reply. Your words are kind and full of compassion.

Sorry I took so long to come back but the Shy in that nickname isn't made up. I got scared after joining and couln't bear coming back. Then things got crazy at my job and here I am 3 months later.

I'll try and be back more often. I think this place is a good place for me. People are kind and understanding... good for a shy introvert like me.


Dot said:

HI,

Sorry you are dealing with this, I am further along in the game and can tell you I can't imagine also not having children.

The truth is that it was very difficult to raise a family and I didn't know why at the time. They are great and have had to do more, younger, and now I worry if one of them will get what I have.

My first trouble with the arthritis was 32. Now I am 53.

I was recently off my meds, one quit working, I was allergic to another. All I had was prednisone, I get that. That's why I am up. Now am on another, Cimzia, it is as good as it gets just 1 week. I don't have surprise pains that make me scream, the bumps on the road don't feel like a knife in my shoulders, back and neck like last week.

If I have learned anything, it is that it can change on a dime for the better when you find the right treatment.

I have also been in the angry phase the sad phase the denial phase, then comes acceptance. I appreciate when I am not worse. I have a hard time dealing with it when I am really ill. But, I do realize it is not going to stay bad. Who knows what gene fixing situation might come. I have some hope there.

Sometimes the waiting made me crazy. The whole drug dilemma is constant. Some of them are out of this world in cost. Mine now costs more than my annual income, so I feel vulnerable.

I have decided to do the best I can to feel the best I can.

I was unable to have children for the first 5 years and had just given up and adjusted my expectations. I think it helped a lot that my husband just accepts things the way they are. I strive, more than I should, to get what I want, or what I think he wants. For no apparent reason that changed and I was very surprised. I have 3 now but I would have been a foster mom if that hadn't happened. Do you feel well enough to take that on? I know people have their eggs frozen to give them more time. I know that must be very expensive and difficult.

I hope you feel a little better about it all and get some better treatment that helps more, soon.

11

Thank you all for the warm welcomes. Like stated in my reply to Dot, I'm a really shy and introvert person but I will stand up for myself and my love ones and protect them with my life.

I am now to injections with folic acid, vit D. Still can't bear to climb down the stairs most mornings. Having an emergency appointment with my rheumy Tuesday and will talk about having a child, new medication, bad psoriasis flares, and more. My hubby is coming with me to meet her. He wants to make sure I tell her everything because I tend to diminish the whole thing and just laugh about it like it's just a nasty pimple that will clear up. Will keep you updated and maybe cry and bitch about the whole thing.

Like they say in the song "Thank you for being a friend..."

12

Hi ShyWarrior!
How did your appointment go? My partner has come with me to appointments when I’ve had a flare or been feeling bad for a while to let the doctor know that my bravado is BS and that I’m really sick! Sometimes being in your own body diminishes your ability to see things as they are. Glad your husband felt he could help by going with you. Keep us posted on how things are going for you. Cheers!

13

Jim comes to some of my appointments sometimes too. It helps me be honest and for him to know what is going on and what might be. Denial is not only for the patient but sometimes their SO too.

14

Hi Shy, I guess you and I must have found this site about the same time a few months ago. 'Cept I'm sure I'm about the exact opposite of you in that I need to talk so much and read so much on here... I don't talk about it at home much at all... When I just had psoriasis it was a non-issue, other than my kids never understood why I'm so self-conscious of it.

I have a really hard time telling my loved ones how crappy I feel, I just always have felt they don't understand.... We all here sort of have walked-hobbled, I should say-in each others shoes, and we can relate so well!

Don't ever think you sound like you're whining... We all know where you're coming from. The sooner you can get on a biologic, the better. I put it off for a few years and lived with tons of pain for several years-not to mention psoriasis for 38 years-don't delay! Enbrel has made me feel much much better!

Take care!

15

Sorry for this late reply. August has been a whirlwind of doctor appointments and we did travel a bit to enjoy the summer vacation. I had a great appointment. She put me on the fast track to get biologics while still comply with my insurance requirements, hence the dozen appointments in August.

As for kids, she told me we should focus on getting me better before, that I'm "still young" and that a year or 2 will not make a huge didderence. I'll be 40 next year, this doesn't feel "young" to me but she was very reassuring and compassionate and she is very good.

My husband sat very quietly and listened to her every words. When he mentionned that I sleep a lot, she explained very well how the pain can be and how we spend so much energy just trying to function thru the pain.

I'm still working full time and realy enjoyed the 2 weeks off. I did not have much energy but we drove to Boston and we included a couple spare days in our visiting schedule to give me a break. I only had to use my cane for 1/2 day which is great since I hate that thing with all my guts.

I have anothe appointment in 2 weeks with the gastroenterologist so she can give her recommendations as to why I cannot continue with metho+sulfa. My hopes are high and I give myself the chance to see a better future.

16

Shy, I’m so happy for you. It sounds as if you have connected with a very smart, compassionate and pro-active rheumatologist. I have a suspicion that you will be feeling much better as soon as she can possibly get you there. You are very very fortunate to have connected with this doctor!

And it great that you even managed to enjoy some of your summer vacation. Onwards! Stay strong and stay in touch!

17

I'm back! Litteraly back. I started Enbrel 3 weeks ago after being on work leave since October. I will be back to work progressively from Jan 12th. I ended up at the emergency when I collapsed on October 19, 2014. I had no energy left and the pain was so bad that I couldn't even think. They gave me a MRI and there was debilitating inflamation in 90% of my joints.

My rheumatologist saw me the next day and she was tearing up and apologizing for putting me throught this ordeal. Told her she was absolutely not to blame. She really is the best doctor I've ever met. She takes our pain very seriously and has empathy rarely seen in medical staff.

Since then, I had all my vaccination updated, (cannot get live vaccins while on biologics) got pneumomia, flu, hepatitis A&B, yellow fever (my dad lives in Africa), measles... to reduce any risk of catching anything that could compromise my health. She (my rheumy) takes this very seriously and told me all the reasons for the vaccins run and explained the effects of biologics on my body. To top it off, my husband agreed to go through the vaccins as well just so I wouldn't go alone and we are ready to travel anywhere in the world :)

Started Enbrel 3 weeks ago and I feel like a new person. Swelling and inflamation are down by 60% and appart from a mild rash on injection site, I feel like I can take on the world. (granted that it's not going too fast)

I fully understand the risks coming with biologics but for me, it is a new lease on life, a chance to maybe have a kid, a chance at a normal life... and I'm just so grateful for it

18

So glad to hear from you, Shy! Thank you for posting: stories like this give others hope that things can and will get better. So many of us have gone through what you have experienced, and have come out the other side in pretty good shape. It’s just too easy to say “Thank goodness I feel better!”, but posting really does help the rest of us cope with what we are going through. Thank you for taking the time to get back to us.



You mention understanding the risks of biologic therapy. All treatment (starting with Tylenol) comes with risks. But we sometimes forget the very real risks of not treating this disease aggressively – cardiovascular risk, joint damage, surgery (which exposes you to many risks), metabolic risks, etc etc. Once you discover that you have PsA, you own the risks inherent in having this disease: then you must choose the course of action and treatment which have the best benefit/risk ratio for you.



It’s great that you are feeling better. You are fortunate to be one of the lucky group who got results quickly from their biologic. Not everyone scores like you have: it can take anywhere from weeks to many months to get the full benefit. And it’s great to hear that you are on the mend so soon!



I’m impressed with your rheumie, and it sounds as if you are too. She’s a keeper for sure! Keep us posted on your progress – we all need to hear good PsA news!

19

I want to hit the "like" button! So happy for you! Looks like you got on here around the same time I did. I started Enbrel July 3 and it was miraculous how much better I felt right away.

So glad to hear your good news!

ShyWarrior said:

I'm back! Litteraly back. I started Enbrel 3 weeks ago after being on work leave since October. I will be back to work progressively from Jan 12th. I ended up at the emergency when I collapsed on October 19, 2014. I had no energy left and the pain was so bad that I couldn't even think. They gave me a MRI and there was debilitating inflamation in 90% of my joints.

My rheumatologist saw me the next day and she was tearing up and apologizing for putting me throught this ordeal. Told her she was absolutely not to blame. She really is the best doctor I've ever met. She takes our pain very seriously and has empathy rarely seen in medical staff.

Since then, I had all my vaccination updated, (cannot get live vaccins while on biologics) got pneumomia, flu, hepatitis A&B, yellow fever (my dad lives in Africa), measles... to reduce any risk of catching anything that could compromise my health. She (my rheumy) takes this very seriously and told me all the reasons for the vaccins run and explained the effects of biologics on my body. To top it off, my husband agreed to go through the vaccins as well just so I wouldn't go alone and we are ready to travel anywhere in the world :)

Started Enbrel 3 weeks ago and I feel like a new person. Swelling and inflamation are down by 60% and appart from a mild rash on injection site, I feel like I can take on the world. (granted that it's not going too fast)

I fully understand the risks coming with biologics but for me, it is a new lease on life, a chance to maybe have a kid, a chance at a normal life... and I'm just so grateful for it

20

For those of us in the situation you found yourself… Worrying about future risks from biologics compared to future risks of debilitating pain, daily. Well, I figured out pretty quickly how to be a “live for today” kind of girl. This is from a person that had every hour planned-out for the next 20 years. It was hardest to help my mother and husband to understand. Good luck to you, Shy. Never give up. Some dreams may have to be postponed. Others may need to be reinvented into something different but only when we quit do we lose!