It has been so comforting to read your posts, just to know that I'm really not alone in how I feel -- physically and emotionally. I just turned 53, and several years ago, almost overnight, I had psoriasis just about everywhere. It took a few weeks to correctly diagnosis the skin disease, and eventually it became more contained to my scalp and legs.
Last fall I woke up and the joints in all my fingers were so painful I could hardly move. Next it was my knees. Then my feet. It took my rheumo a few months but he's finally landed on the diagnosis of PsA. I guess I'm in "the gap" now, because we're still trying to figure out what works and what causes the least amount of side effects.
I'm still working full-time. And I have three teenagers. And a husband who tries to understand, but mostly wants to "fix" me. He is convinced there is something out there that I just need to take so that I'll be "all better." I'm not sure what is more frustrating -- this disease, or the way he (and others) think I need to be "fixed."
I fear that I will be unable to work full-time in the near future. I fear for many things in the near future. I don't know how I'll feel later today, or tomorrow morning, let alone next month or next year. I don't know how to view my life now. Is it different? How different? Has my future been rewritten?
Thank you all for your honesty and openness. I truly feel as if I've found a new community.
Welcome, Niel. Yes, you are indeed in The Gap. Most of us have been there, and it’s not a nice place to be. Fortunately, it gets better. The trouble is, it can take a while, depending on how aggressively your rheumie decides to treat your disease, and how you respond to the medications. Best case scenario is a gap of about three months, if you take the first medication and it works. But those three months can seem like a long, long time. A piece of advice: don’t make any irrevocable decisions (like major employment decisions) when you’re in The Gap. It may not feel like it now, but when you find the right combination of medications and lifestyle changes, you will feel much, much better and more in control.
This is a good time for you to learn as much as you possibly can about PsA. Have you come across the book that I recommend under “Book Reviews” (above)? Being able to discuss your treatment options in a knowledgeable way with your doctors will make a big difference to you. And learning about PsA is one of the things your husband can do to help you too.
Yes, I remember finding this forum a couple of years ago, when I was newly diagnoses, and being so relieved to have the company of a group of ppeople in the same boat. We’re glad you’re here, even if it’s too bad that you had to come looking for us.
Thanks so much for your reply, Seenie. And your advice is very welcomed. I've been trying to hang in there as much as possible. Fortunately I have a very supportive group of colleagues in my job (I teach at a Christian college and am the chaplain) and much of my work can be done sitting down. One of my biggest frustrations (aside from the pain) is my lack of energy. My rheumie is pretty aggressive (thankfully). And I have a wonderful primary. My rheumie started me on methotrexate, but after a month we switched (I didn't like the side effects). I've now been on leflunomide (side effects with this one, too) and when I see him next week he is going to start a biologic. The pain and inflammation isn't getting any better, but worse. Do you have a suggestion for a biologic? Is that the best route to take? He readily admits that PsA is more rare than RA and there just isn't as much research on effective treatments. Thanks also for the book recommendation. I'm ordering it today.
Seenie said:
Welcome, Niel. Yes, you are indeed in The Gap. Most of us have been there, and it's not a nice place to be. Fortunately, it gets better. The trouble is, it can take a while, depending on how aggressively your rheumie decides to treat your disease, and how you respond to the medications. Best case scenario is a gap of about three months, if you take the first medication and it works. But those three months can seem like a long, long time. A piece of advice: don't make any irrevocable decisions (like major employment decisions) when you're in The Gap. It may not feel like it now, but when you find the right combination of medications and lifestyle changes, you will feel much, much better and more in control.
This is a good time for you to learn as much as you possibly can about PsA. Have you come across the book that I recommend under "Book Reviews" (above)? Being able to discuss your treatment options in a knowledgeable way with your doctors will make a big difference to you. And learning about PsA is one of the things your husband can do to help you too.
Yes, I remember finding this forum a couple of years ago, when I was newly diagnoses, and being so relieved to have the company of a group of ppeople in the same boat. We're glad you're here, even if it's too bad that you had to come looking for us.
Niel, I really like what I’m hearing about your rheumatologist. I think you are in good hands there: you’ve tried a couple of DMARDs and he’s moving on fairly quickly to the biologics, which we know have the best track record of slowing down the disease process. There are some unknowns, of course, because they are fairly new, but the one certainty is that you cannot live the way you have been living. Quality of life is important.
I’m fortunate that I attend a major PsA research clinic (my rheumatologist is one of the big names in PsA research). When he recommended a biologic for me, he gave me three choices (I was a bit surprised by this). His comment was that they are all a bit different, but all equally effective. I chose Enbrel. I told him I chose it because Enbrel is the first and the oldest, and the one that has the most known about it. He responded with a smile and said "That is very good logic."
Enbrel has been good for me. Very good. I still have some joint pain, but the greatest improvement for me has been in my fatigue and depression. I am so much better, in fact, that my orthopedic surgeon even commented on the change. That’s really telling – sawbones aren’t usually known for their sensitivity to mood and affect!
Hi Niel, I would agree with Seenie as far as enbrel goes.
I have got "bad news" for you though most of us once we get through the gap keep right on working and more often than not with a lot more effect than before. So a life of ease on the couch with Bon-Bons and soap operas is not in your future We don't know how bad we felt until we start feeling better (it sneaks up on you) I'm glad you are in a supportive environment that is a HUGE advantage that many of us don't have.
Now if I can give you little "chaplain" type advice. You also have a teachable moment not only with your husband and family but students as well. You have a damaged (not broken) body. You are still you. Incidentally one of your denominations Bishops (maybe a superintendent) has PsA. Roger I think is his first name, possibly in Oregon or Washington (my memory isn't what it used to be and it was over 10 years ago)
You have just joined an elite group of people who have this as well. I have dealt with this going on 33 years and worked over 30 years after I was diagnosed so try not to worry about that just yet. Of course a lot has to do with the type of work you do. So many meds are trial and error as you have probably worked out by now and believe me I have been on all of them. What works well for some doesn't work so well for others... and there are a zillion combinations out there. What I found if absolutely essential is finding the BEST RHEUMATOLOGIST for you. I have been very lucky in that respect..
You may want to have your husband read comments /blogs on this site and see your Rheumatologist for a meeting as well. Unless one has this disease NO ONE can understand what we go through. You can feel like total crap one minute and in an hour, you are fine. It is that unpredictable.
I wish you the best in this journey and remember the terrible days usually are followed by amazingly wonderful days.
It does sound like you’ve got yourself a good doctor and supportive network which are important aspects of dealing with this disease.
We can all influence our future; its whether a person wants to give up or fight on.
One thing that will help is to get help from some sort of physical therapy, many of us have been referred to physical therapy programmes which help is keep as mobile as possible. My personal favourite is Shibashi Tai Chi which was taught to me by my local hospital. Even when I’ve been at my worse I have always been able to do some or all of the set. It also has a wonderful calming effect on my mental state.
Thanks for all the advice! I am greatly encouraged to hear that the work continues -- and with more effectiveness! I love my job, and I certainly want to be the best I can be for my kids and my students. In fact, I've managed to miss very little work (only by God's grace). I feel miserable many days, but when I manage to get out of the house I find it's "easier" to be miserable at work than at home -- usually. I know that isn't the case for many others who suffer with this disease. I am learning many things through this journey, not the least of which is humility, which includes the ability to accept help from others (not always an easy thing to do:).
I'll have to do some investigating about the superintendent/bishop you mentioned. Shouldn't be hard to figure out. It's a pretty small denomination:)
tntlamb said:
Hi Niel, I would agree with Seenie as far as enbrel goes.
I have got "bad news" for you though most of us once we get through the gap keep right on working and more often than not with a lot more effect than before. So a life of ease on the couch with Bon-Bons and soap operas is not in your future We don't know how bad we felt until we start feeling better (it sneaks up on you) I'm glad you are in a supportive environment that is a HUGE advantage that many of us don't have.
Now if I can give you little "chaplain" type advice. You also have a teachable moment not only with your husband and family but students as well. You have a damaged (not broken) body. You are still you. Incidentally one of your denominations Bishops (maybe a superintendent) has PsA. Roger I think is his first name, possibly in Oregon or Washington (my memory isn't what it used to be and it was over 10 years ago)
Thank you for the warm welcome. That means so much to me! And thanks for the advice. I'll ask my doctor about physical therapy. By the way, have you found that hot or cold therapy helps you at all? I like the idea of therapy to calm my mental state as well:)
Louise Hoy said:
Hello Niel and welcome,
It does sound like you've got yourself a good doctor and supportive network which are important aspects of dealing with this disease.
We can all influence our future; its whether a person wants to give up or fight on.
One thing that will help is to get help from some sort of physical therapy, many of us have been referred to physical therapy programmes which help is keep as mobile as possible. My personal favourite is Shibashi Tai Chi which was taught to me by my local hospital. Even when I've been at my worse I have always been able to do some or all of the set. It also has a wonderful calming effect on my mental state. :)
When you wrote, "You can feel like total crap one minute and in an hour, you are fine. It is that unpredictable," I said "YES!" out loud! You know exactly how I feel! I'm hopeful for some better days. Are you taking biologics? What has worked for you?
Erinsmum said:
Hi Niel,
You have just joined an elite group of people who have this as well. I have dealt with this going on 33 years and worked over 30 years after I was diagnosed so try not to worry about that just yet. Of course a lot has to do with the type of work you do. So many meds are trial and error as you have probably worked out by now and believe me I have been on all of them. What works well for some doesn't work so well for others... and there are a zillion combinations out there. What I found if absolutely essential is finding the BEST RHEUMATOLOGIST for you. I have been very lucky in that respect..
You may want to have your husband read comments /blogs on this site and see your Rheumatologist for a meeting as well. Unless one has this disease NO ONE can understand what we go through. You can feel like total crap one minute and in an hour, you are fine. It is that unpredictable.
I wish you the best in this journey and remember the terrible days usually are followed by amazingly wonderful days.
It's encouraging to hear that Enbrel has worked well for you. It sounds like my rheumatologist will give me choices as well, and I like your reasoning! How long will I be on these meds? Just until it's under control? Or do most people continue the treatment indefinitely?
Pretty impressive response from your orthopedic surgeon, by the way:)
Seenie said:
Niel, I really like what I'm hearing about your rheumatologist. I think you are in good hands there: you've tried a couple of DMARDs and he's moving on fairly quickly to the biologics, which we know have the best track record of slowing down the disease process. There are some unknowns, of course, because they are fairly new, but the one certainty is that you cannot live the way you have been living. Quality of life is important. I'm fortunate that I attend a major PsA research clinic (my rheumatologist is one of the big names in PsA research). When he recommended a biologic for me, he gave me three choices (I was a bit surprised by this). His comment was that they are all a bit different, but all equally effective. I chose Enbrel. I told him I chose it because Enbrel is the first and the oldest, and the one that has the most known about it. He responded with a smile and said "That is very good logic." Enbrel has been good for me. Very good. I still have some joint pain, but the greatest improvement for me has been in my fatigue and depression. I am so much better, in fact, that my orthopedic surgeon even commented on the change. That's really telling -- sawbones aren't usually known for their sensitivity to mood and affect!
Niel, PsA is a chronic and incurable disease. Most of us are on the medications indefinitely, although I have heard of people going off when things seem under control and then going back when they’re not.
I don’t like having to rely on medication, but then I’m sure diabetics don’t either. I’d really rather not have this disease, but given that I do I’m pretty lucky to be living in this day and age, when there is some relief available.
This is such a great community and I have gotten so much support out of it. I felt so lost when I was first diagnosed. I saw no way that I could continue to work, and be a mom, and wife. Slowly, over the last 2 years, I have improved. It has taken a while, but I am finally getting there. Give yourself time to adjust, and time to be sad, but then it’s time to keep on. We have to keep moving forward, try that next drug, and continue to be hopeful. We have to push ourselves a little harder, and some days we have to drag ourselves out of bed limping and whining. BUT, it gets better! The Gap has been my toughest time, but I finally started a med that I had been refusing, and I am actually getting so much better.
I work, I do my best to be a good mom and wife, my family supports and loves me, and, more importantly, they “get” me and they get this disease. Make sure your closest family understands how this thing works and affects you.
I have made a lot of changes to simplify my life and make it more accommodating, and I feel like even though i was in the gap for a long time, I was still able to live and be mostly me.
I wish you a quick trip through the gap, and hope your road to the biologics is a short one. Btw, don’t give up on methotrexate until you have tried the injectable form. So much fewer side effects. Also, it should be take with at least 1mg of folic acid. I take it weekly via injection and have zero side effects.
Thanks, Seenie. I think I'm at least starting to come to terms with the "chronic" and "incurable" part of this disease. I also have heart disease (unknown reasons) so I'm already on several medications and will be throughout the rest of my life. I'm very grateful for the medications that are out there now. I just know that my rheumatologist mentioned "getting this under control" so I didn't know if some people backed off the meds after that, or remained on them. Thanks so much for your reply.
Seenie said:
Niel, PsA is a chronic and incurable disease. Most of us are on the medications indefinitely, although I have heard of people going off when things seem under control and then going back when they're not.
I don't like having to rely on medication, but then I'm sure diabetics don't either. I'd really rather not have this disease, but given that I do I'm pretty lucky to be living in this day and age, when there is some relief available.
Thanks for the welcome, GrumpyCat (sometime I'd love to know why you chose that screen name:)
I started on methotrexate (pill form) but didn't like the side effects. It wasn't stomach upset or anything, but the psychological side effects (depression, anxiety, etc.). Now, it was in the dead of winter and I was already in so much pain, so I can't blame it all on the drug, but I noticed a marked difference in my mental state just a week or so into taking metho. At any rate, at my very next appt. my rheumatologist switched the drug to arava. I've been on that for almost two months and now I'm dealing with the side effects of stomach upset, etc. Not sure if the injectible metho would be better at this point. He is starting me on biologics at my next appt in two weeks.
Your reply was so encouraging. Thank you so much for taking the time to write! That means so much to me -- especially right now:)
GrumpyCat said:
Welcome, Niel.
This is such a great community and I have gotten so much support out of it. I felt so lost when I was first diagnosed. I saw no way that I could continue to work, and be a mom, and wife. Slowly, over the last 2 years, I have improved. It has taken a while, but I am finally getting there. Give yourself time to adjust, and time to be sad, but then it's time to keep on. We have to keep moving forward, try that next drug, and continue to be hopeful. We have to push ourselves a little harder, and some days we have to drag ourselves out of bed limping and whining. BUT, it gets better! The Gap has been my toughest time, but I finally started a med that I had been refusing, and I am actually getting so much better. :D I work, I do my best to be a good mom and wife, my family supports and loves me, and, more importantly, they "get" me and they get this disease. Make sure your closest family understands how this thing works and affects you. I have made a lot of changes to simplify my life and make it more accommodating, and I feel like even though i was in the gap for a long time, I was still able to live and be mostly me. I wish you a quick trip through the gap, and hope your road to the biologics is a short one. Btw, don't give up on methotrexate until you have tried the injectable form. So much fewer side effects. Also, it should be take with at least 1mg of folic acid. I take it weekly via injection and have zero side effects.
Niel, I don’t know what your heart problem is, but are you aware that cardiac problems are the #1 co-morbidity with PsA? One of the most common heart problems for us is Atrial Fibrillation.
It sounds like you are in really good hands. A rheumatologist’s saying the words “Getting this under control” would be music to my ears! Lucky lucky Niel, given, of course, the rotten fortune of drawing the PsA card in the first place.
It's so interesting that you said cardiac problems are the #1 co-morbidity with PsA. I have two cardiologists -- one general, and one who deals specifically with heart rhythm problems. My issues have always been heart rhythm related. I've had two cardiac ablations to correct racing heart and irregular rhythm problems. But never once did either of my heart docs question my psoriasis (I've had the skin condition for over 5 years). I do have regular heart echos done (at least yearly). My rheumatologist contacted my cardiologist just recently to clear the use of a biologic, and it looks like we're going ahead.
I do wonder, now, if all these physical challenges aren't related.
Seenie said:
Niel, I don't know what your heart problem is, but are you aware that cardiac problems are the #1 co-morbidity with PsA? One of the most common heart problems for us is Atrial Fibrillation.
It sounds like you are in really good hands. A rheumatologist's saying the words "Getting this under control" would be music to my ears! Lucky lucky Niel, given, of course, the rotten fortune of drawing the PsA card in the first place.
Niel- You mentioned problems w/ Arava. You can search the forums for Arava/leflunomide. I had developed some major belly issues w/ Arava, and we backed off to half the dose. It wasn't AS effective, but it retained enough benefit, and got rid of the diarrhea.
Welcome Neil. I am a newbie too. Arm in arm like the scarecrow, the lion, and the tin man we will follow the yellow brick road to the land of Oz where maybe we can ask the wizard for the right concoction to alleviate pain and stop the damage. This time in the "gap" isn't much fun. I have found that in this group when someone says, "I feel your pain." They really can...it isn't just words. Glad you joined the group. Like you, I have found some great empathy and excellent information.
