So, I have started the Methotrexate. It wasn't what all I made it out to be. Really wasn't that bad at all. A little nausea, a little dizziness. Two days later, flare like pain. I am also having some kind of infection going on. See a urologist tomorrow. All and all not too bad. However, my family is freaked out about me taking the drug. I have no support what so ever. I weighed my options to begin with. I probably waited too long to get treatment as it is. My pain is in a LOT of joints. I can no longer run(my hip and knee give out). I used to run 5k. My family does not seem to think about how much pain and misery I was in before starting treatment. I am just not the kind of person that goes around complaining about this hurts and I cannot do that. Heck, all I would do is complain..hehe. I have learned to live with it but it does not mean that everything is ok. Any advice on reading material or anything else to make family members understand? My sister does not seem to think treatment is worth it at all. I am so down and confused.
Hi stormydaze. Sorry you have no support. It is hard to get people to understand what the pain is and how much it affects you. I'm sure you're trying to live a normal life-like all of us seem to be-but it's definitely not normal fighting through stiff and painful joints, tendons and ligaments--not to mention the fatigue. And the fact that you've been dealing with psoriasis since you were a small child, too, I suppose people didn't think psoriasis bothered you much, either.
Before I started Enbrel 14 months ago, I came to my wit's end with the pain and other symptoms. But, still, like you, I didn't bother complaining to everyone about it, because they just don't understand. Even though I could barely walk when I got out of a chair, or out of bed in the morning, my husband never asked me what was the matter. When my shoulders and wrists locked up, nobody seemed to notice--and that was every time I was idle for just a couple minutes.
You just take care of yourself-you are at the point where you've decided you can't take anymore and you need medicine to make you feel better. Let them have their opinions. I think the only way they'll ever understand is if they get an inflammatory arthritis themselves. I hope methotrexate starts working for you. I never took it, but I know it has helped a lot of people. I was so scared to take Enbrel, but it has been a lifesaver for me! I've had miraculous results!
Keep coming here to this website, because everyone here knows what you're going through. :-)
Grandma J, Thanks so much for your kind words and encouragement. Sometimes just hearing someone say, "I get you and I believe you." That is worth a million! I needed that so badly today. I would love to feel like my old self again but I would take just a little less pain and more good days than bad.
I cannot thank you enough for just listening!!!! :)
Grandma J said:
Hi stormydaze. Sorry you have no support. It is hard to get people to understand what the pain is and how much it affects you. I'm sure you're trying to live a normal life-like all of us seem to be-but it's definitely not normal fighting through stiff and painful joints, tendons and ligaments--not to mention the fatigue. And the fact that you've been dealing with psoriasis since you were a small child, too, I suppose people didn't think psoriasis bothered you much, either.
Before I started Enbrel 14 months ago, I came to my wit's end with the pain and other symptoms. But, still, like you, I didn't bother complaining to everyone about it, because they just don't understand. Even though I could barely walk when I got out of a chair, or out of bed in the morning, my husband never asked me what was the matter. When my shoulders and wrists locked up, nobody seemed to notice--and that was every time I was idle for just a couple minutes.
You just take care of yourself-you are at the point where you've decided you can't take anymore and you need medicine to make you feel better. Let them have their opinions. I think the only way they'll ever understand is if they get an inflammatory arthritis themselves. I hope methotrexate starts working for you. I never took it, but I know it has helped a lot of people. I was so scared to take Enbrel, but it has been a lifesaver for me! I've had miraculous results!
Keep coming here to this website, because everyone here knows what you're going through. :-)
What Grandma said! One of the most common items of discussion here is the question of how to make family and friends understand what this is like. We haven’t come up with an answer to that one yet.
Good for you, forging ahead and starting a MTX. Don’t give up. If this DMARD doesn’t do it for you, carry on until you find something that does help. We get the fear of the medications (we’ve all been there) but please do not underestimate the damage that this disease can do to not only your joints but also to your career, your relationships and finances. Someone here a long time ago coined the tag line “Fear the disease, not the drugs”. Worth remembering.
Something else to ponder: the depression and fatigue and feeling of defeat is probably all part of the disease picture as well. When you get the classic PsA stuff under control, you’ll probably find that your mood will improve as well.
Hang in there, Stormydaze, and hang out here! We’re glad you found us, even if it’s too bad that you’re a member of Club PsA as well.
Reading material ..... right, you have to match it to the particular family member you're targeting! For the more academically inclined unsupportive & uninformed person there's "Psoriatic Arthritis (The Facts)" by Dafna D. Gladman and Vinod Chandran. I like the one published in 2008, there's a later edition which I consider to be rather less accessible.
If you check out 'A Newbies Guide to PsA' you'll see that there's a youtube on PsA, recommended in an article by Seenie. And the 'Newbies Guide' refers to other resources too, as well as being a good resource in itself. Have you checked out Seenie's article 'The other side of Planet Methotrexate'?
Has anyone in your family accompanied you to rheumatology appointments? Just seeing other inflammatory arthritis patients can be a bit of an eye-opener and that's before they even get to see that yes, this little affliction does require a real doctor, real nurses, masses of knowledge and serious treatment.
It has taken me a few years to really & truly accept that this disease can and does veer off in unforeseen and nasty directions in addition to the gradual progression. Only suitably aggressive treatment can hold it back. So it is not just about needing the drugs to deal with the here and now, though that's quite bad enough, but about minimising progression, preventing disability and avoiding comorbidities.
Have you got anyone in your life who 'gets it'? Sometimes one's enough to be going on with. But I really sympathise with you .... it's hard enough having the disease, hard enough realising you need treatment without people trying to put obstacles in your way. And it almost sounds as if that's what is happening. You may not get actual support from the family but it would be great if they could at least respect the fact that you know what you're doing.
Anyway, meanwhile, we get it.
Thanks Sybil! You are right! I am going to get my husband to go with me to my next appointment. I think that would help a great deal. I have read a Newbies Guide but maybe I should introduce him to it. I believe the problem lies with my family thinking I am just trying to treat the "now" pain. They do not see the future of the disease. Thanks for all the good suggestions. I really appreciate it!
Sybil said:
Reading material ..... right, you have to match it to the particular family member you're targeting! For the more academically inclined unsupportive & uninformed person there's "Psoriatic Arthritis (The Facts)" by Dafna D. Gladman and Vinod Chandran. I like the one published in 2008, there's a later edition which I consider to be rather less accessible.
If you check out 'A Newbies Guide to PsA' you'll see that there's a youtube on PsA, recommended in an article by Seenie. And the 'Newbies Guide' refers to other resources too, as well as being a good resource in itself. Have you checked out Seenie's article 'The other side of Planet Methotrexate'?
Has anyone in your family accompanied you to rheumatology appointments? Just seeing other inflammatory arthritis patients can be a bit of an eye-opener and that's before they even get to see that yes, this little affliction does require a real doctor, real nurses, masses of knowledge and serious treatment.
It has taken me a few years to really & truly accept that this disease can and does veer off in unforeseen and nasty directions in addition to the gradual progression. Only suitably aggressive treatment can hold it back. So it is not just about needing the drugs to deal with the here and now, though that's quite bad enough, but about minimising progression, preventing disability and avoiding comorbidities.
Have you got anyone in your life who 'gets it'? Sometimes one's enough to be going on with. But I really sympathise with you .... it's hard enough having the disease, hard enough realising you need treatment without people trying to put obstacles in your way. And it almost sounds as if that's what is happening. You may not get actual support from the family but it would be great if they could at least respect the fact that you know what you're doing.
Anyway, meanwhile, we get it.
Hey Seenie, I have been repeating that phrase to myself since I heard it here, "Fear the disease, not the drugs!" I want to control this thing, I do not want it controlling me anymore. More than anything in the world I would love my energy back. I used to be the most active individual. Over the years, the disease has stolen my energy and my joy. Not now, I am fighting mad. I have to continue to stay energized by people here who understand what I am going through. Everyone has been so great! Thanks for the encouragement.
Seenie said:
What Grandma said! One of the most common items of discussion here is the question of how to make family and friends understand what this is like. We haven't come up with an answer to that one yet.
Good for you, forging ahead and starting a MTX. Don't give up. If this DMARD doesn't do it for you, carry on until you find something that does help. We get the fear of the medications (we've all been there) but please do not underestimate the damage that this disease can do to not only your joints but also to your career, your relationships and finances. Someone here a long time ago coined the tag line "Fear the disease, not the drugs". Worth remembering.
Something else to ponder: the depression and fatigue and feeling of defeat is probably all part of the disease picture as well. When you get the classic PsA stuff under control, you'll probably find that your mood will improve as well.
Hang in there, Stormydaze, and hang out here! We're glad you found us, even if it's too bad that you're a member of Club PsA as well.
Hello MTX partner I just started too! I'm not too bad either, have tiredness along with cramping and Diarrhea. No infections thank God.
Does anyone here have an MTX success story? Maybe they could type it and you could print it and show it to your family??
Hello Irishchick,
That would be a great idea! Plus, I would really love to hear one right now, wouldn't you?
Irishchick said:
Hello MTX partner I just started too! I'm not too bad either, have tiredness along with cramping and Diarrhea. No infections thank God.
Does anyone here have an MTX success story? Maybe they could type it and you could print it and show it to your family??
Yes it would be nice it gives good motivation to keep going when you feel like crap, like I do today!
stormydaze said:
Hello Irishchick,
That would be a great idea! Plus, I would really love to hear one right now, wouldn't you?
Irishchick said:Hello MTX partner I just started too! I'm not too bad either, have tiredness along with cramping and Diarrhea. No infections thank God.
Does anyone here have an MTX success story? Maybe they could type it and you could print it and show it to your family??
poo, I am sorry you feel bad today. :(
I felt bad on the 2nd day after taking my first dose but I feel good today except for the kidney, UTI thing I got going on. Mainly, I felt like I got a good night's sleep for the first time in ages last night. Usually I wake up hurting. I hope you start feeling better soon.
Irishchick said:
Yes it would be nice it gives good motivation to keep going when you feel like crap, like I do today!
stormydaze said:Hello Irishchick,
That would be a great idea! Plus, I would really love to hear one right now, wouldn't you?
Irishchick said:Hello MTX partner I just started too! I'm not too bad either, have tiredness along with cramping and Diarrhea. No infections thank God.
Does anyone here have an MTX success story? Maybe they could type it and you could print it and show it to your family??
Hello to everyone,
This is my first post here. I have been on Remicade and Methotrexate for the last 5 years, and have had a good response to both. My joint pain is manageable. I haven't had any severe SA's. I am not saying I have NO SA, but, to be honest, I'm not sure if the dry eyes, dry nasal passages, and GI issues are a result of the drugs, or just the natural progression of the disease itself. Last year I had ongoing mouth sores, but that has now stopped, not sure why. I was taking oral methtrx until last year, and then the rheumy suggested injections because it works better. I now give myself an injection once a week. I don't get dizzy or nauseous, but sometimes experience mild fatigue the first 24 hours.
I have had psoriasis for 50 years, but PsA cropped up about ten years ago. I am managing, and just had a total hip replacement 2 months ago. It went fairly well, but not as speedy recovery as I would like.
Anyway, just wanted to let you know that I have tolerated methtrx well after five years, still going strong!
Hey Maracel! Thanks so much for the encouraging report. I am so glad to hear that it can manage pain without too many SA. Thanks for taking the time to give us some insight!!! I hope your drugs continue to work.
maracel said:
Hello to everyone,
This is my first post here. I have been on Remicade and Methotrexate for the last 5 years, and have had a good response to both. My joint pain is manageable. I haven't had any severe SA's. I am not saying I have NO SA, but, to be honest, I'm not sure if the dry eyes, dry nasal passages, and GI issues are a result of the drugs, or just the natural progression of the disease itself. Last year I had ongoing mouth sores, but that has now stopped, not sure why. I was taking oral methtrx until last year, and then the rheumy suggested injections because it works better. I now give myself an injection once a week. I don't get dizzy or nauseous, but sometimes experience mild fatigue the first 24 hours.
I have had psoriasis for 50 years, but PsA cropped up about ten years ago. I am managing, and just had a total hip replacement 2 months ago. It went fairly well, but not as speedy recovery as I would like.
Anyway, just wanted to let you know that I have tolerated methtrx well after five years, still going strong!
I guess we tend not to dwell too much on the fact that this is potentially a progressive disease and a destructive one. Only a few decades back many (most?) of us would be facing joint deformities and disability but the newer drugs have made a huge difference to the kind of future we can reasonably hope for and expect when living with PsA.
I'm not brilliant on the history of it all but I think Methotrexate was one of the earliest drugs that made a real difference. Time was steroids were pretty much all that was on offer for inflammatory arthritis and long-term steroid use carries very definite risks. Plus untreated disease can mean rampaging systemic inflammation .... that's bad for the whole body for sure, not only the joints. I think some members of your family will see things a little differently once they know this whole sorry story.
stormydaze said:
Thanks Sybil! You are right! I am going to get my husband to go with me to my next appointment. I think that would help a great deal. I have read a Newbies Guide but maybe I should introduce him to it. I believe the problem lies with my family thinking I am just trying to treat the "now" pain. They do not see the future of the disease. Thanks for all the good suggestions. I really appreciate it!
Thanks Sybil! I do not think there is quite enough awareness about PsA. I didn't even really know much about it myself. But I am learning now! Boy, am I. You are right though, people need to know the whole story not just what they see on the outside.
Sybil said:
I guess we tend not to dwell too much on the fact that this is potentially a progressive disease and a destructive one. Only a few decades back many (most?) of us would be facing joint deformities and disability but the newer drugs have made a huge difference to the kind of future we can reasonably hope for and expect when living with PsA.I'm not brilliant on the history of it all but I think Methotrexate was one of the earliest drugs that made a real difference. Time was steroids were pretty much all that was on offer for inflammatory arthritis and long-term steroid use carries very definite risks. Plus untreated disease can mean rampaging systemic inflammation .... that's bad for the whole body for sure, not only the joints. I think some members of your family will see things a little differently once they know this whole sorry story.
stormydaze said:
Thanks Sybil! You are right! I am going to get my husband to go with me to my next appointment. I think that would help a great deal. I have read a Newbies Guide but maybe I should introduce him to it. I believe the problem lies with my family thinking I am just trying to treat the "now" pain. They do not see the future of the disease. Thanks for all the good suggestions. I really appreciate it!
I agree, too. I never thought I'd get PsA, even though my psoriasis started in my early 20s. I had remembered reading back then how rare it was and that only about 5% of psoriasis sufferers would get psoriatic arthritis. It seems to me I also read it was mostly men who got PsA. So, even in my 30s when I had back and neck troubles and in my 40s when I had plantar fasciitis and extreme fatigue and IBS and heart problems, it never dawned on me about possibly having PsA. I also had severe rib pain during my 3rd and 4th pregnancies--I'd ask other moms if they had that and nobody else seemed to have what I was explaining. I also always had a weak middle back and it would get really sore when I walked even a short distance. It doesn't matter now that I'm doing well on Enbrel, but I was probably experiencing signs of the disease since my 30s and not even connecting the dots. My doctors always examined my fingernails during my yearly physicals and I didn't know they were looking for the fingernail symptoms of PsA. In my early 50s my nails started pitting and lifting and looking all funky, but even then I was clueless about what was happening to me. When I was diagnosed at 55, I'm sure the doctor was surprised I wasn't asking for pain pills and he offered therm to me. But I hate pills and I think it was beneficial to put off pills for as long as possible. But, we all have our breaking point!
But, anyway, yes, even some of us who are predisposed to the disease don't know much about it. Now that there are celebrities on TV ads for biologics--I've seen ads for Humira, Enbrel and Stelara--you'd think the public would at least recognize the disease, but I know my coworkers are in la la land about it, so it's just frustrating!!!!
I came out of the P and PsA closet last year at work when I started Enbrel and told my boss and closest coworkers about it. It was horrible for me--like revealing this deep, dark embarrassing secret. I was so happy my P was finally clearing up enough that I could stop using tar shampoo and could finally wear short sleeved shirts I just wanted to finally get over my self consciousness. :-) But they still think its OA and don't have a clue how bad it is!
Good Morning Grandma J, your story sounds so very familiar. With the exception I have not come out at work. I grit my teeth a lot and just keep dealing with it all. I am sure I have been dealing with symptoms for years. I have IBS, Gastritis, Hiatal hernia, my gallbladder starting failing and had to be removed, I have constant kidney stones, and tons of aches and pains. It never occurred to me that it was all related until I got tired of seeing doctors every week and started doing my own research and suggested to my doctor that maybe it was all autoimmune. I am very hopeful I will start to feel like myself again. Your story is very encouraging!! My first grandbaby is due in December and that was enough to motivate me. I want to be able to run and play with him. This website and all you wonderful people have really upped my spirits this week and I cannot thank you enough!
Grandma J said:
I agree, too. I never thought I'd get PsA, even though my psoriasis started in my early 20s. I had remembered reading back then how rare it was and that only about 5% of psoriasis sufferers would get psoriatic arthritis. It seems to me I also read it was mostly men who got PsA. So, even in my 30s when I had back and neck troubles and in my 40s when I had plantar fasciitis and extreme fatigue and IBS and heart problems, it never dawned on me about possibly having PsA. I also had severe rib pain during my 3rd and 4th pregnancies--I'd ask other moms if they had that and nobody else seemed to have what I was explaining. I also always had a weak middle back and it would get really sore when I walked even a short distance. It doesn't matter now that I'm doing well on Enbrel, but I was probably experiencing signs of the disease since my 30s and not even connecting the dots. My doctors always examined my fingernails during my yearly physicals and I didn't know they were looking for the fingernail symptoms of PsA. In my early 50s my nails started pitting and lifting and looking all funky, but even then I was clueless about what was happening to me. When I was diagnosed at 55, I'm sure the doctor was surprised I wasn't asking for pain pills and he offered therm to me. But I hate pills and I think it was beneficial to put off pills for as long as possible. But, we all have our breaking point!
But, anyway, yes, even some of us who are predisposed to the disease don't know much about it. Now that there are celebrities on TV ads for biologics--I've seen ads for Humira, Enbrel and Stelara--you'd think the public would at least recognize the disease, but I know my coworkers are in la la land about it, so it's just frustrating!!!!
I came out of the P and PsA closet last year at work when I started Enbrel and told my boss and closest coworkers about it. It was horrible for me--like revealing this deep, dark embarrassing secret. I was so happy my P was finally clearing up enough that I could stop using tar shampoo and could finally wear short sleeved shirts I just wanted to finally get over my self consciousness. :-) But they still think its OA and don't have a clue how bad it is!
You’ve upped our spirits too, Stormydaze! When people come and talk and share, like you have, it helps us put our miseries into context and perspective, especially when we are surrounded by people who just don’t get it. Don’t give up. Keep at it. Insist that your doctors give you the most aggressive therapy that they are prepared to prescribe. This disease will be with you always, but you have a very good chance that its impact on your quality of life can be minimized. Maybe not totally eliminated, but at least made manageable.
Thank you so much for joining us, and participating in our conversations. We all need each other here.
Omg yes, stormydaze, you need to be in shape for that grandbaby! Now, that news is exciting enough to nearly make you feel better! At least that little guy will be a distraction from the pain! I'm lucky to have 7 grandkids already, from ages 7 weeks to 11 years! They have brought so much joy to our lives--just wait! I always say I'm extra special because I'm not just a mom anymore--now I'm a GRAND mom!!!! I hope you can have lots of time with the baby. :-)
I cannot wait to be a Grandma!