Hi. I’m mike. I’m new to this support group idea and blogging. The battle… Hm seems like a set of words that I have been saying over and over. The battle started somewhere around 22 years ago when I was 8 (30 now) with a disfingered finger and a outbreak on the scalp. Itaken crazy to think about being hit that diagnosis from so young and dealing with it for so long. I was pretty athletic growing up and never let it effect me or get the best of me but I feel as I got older it became harder to handle. Often I feel like Rheumy doesn’t listen to the voice I express when I say I’m in extreme discomfort. Just because a set of numbers look good doesn’t mean the actual pain is under control. Lately I’ve been trying to go down the holistic road with acupuncture and fish oil but I think that being treated so aggressive for so long doesn’t make the short term relief really work. Short term relief… It’s such a term that we hate the hear as we strive for long term relief. Due to being treated so aggressive has also come with other complications such as a very weak immune system… This has been offset with vitamin supplements but with those came other complications such as the fight with kidney stones. Another downfall is blood work, I feel like I live at the phlebotomist every few months. I guess the question that seems to be unanswered is how do you ha doe the battle?
Great to hear from you MrB!
There's a lot in here, there really is. I guess that's how it is when someone has had the disease for as long a time as you have.
I hear you on the long-term effects of aggressive treatment. It's not something I know about or have personal experience of as I was diagnosed just over 3 years ago. Here our motto is 'fear the disease, not the drugs' but that is not to deny that the drugs we take can have a downside and can complicate the overall picture. There again, uncontrolled PsA can certainly lead to complications.
These words of yours: "Short term relief... It's such a term that we hate to hear as we strive for long term relief." .... I just think that's brilliant. And it helps with that last question of yours about the battle. I think I've got long-term relief .... but I'm not 'cured'. I can nearly accept that that does not happen. And my darkest days are when I worry that all I've got is short-term relief. And, well, I just fight the disease when I have to and what I like best is when I can ignore it.
Hi Mike. I hear your frustration. It sounds as if your rheumy doesn't get it.....I've heard that from so many people on here. I looked at your profile and saw that you have taken Humira. Are you still taking it but with not-so-good results? I'm concerned about the prednisone injections. You said you had a lot of them. I'm not sure, but sometimes I wonder--because of what I gathered from here as well as my rheumy refusing to give me more prednisone--if prednisone is a real culprit as far as causing the disease to increase in severity. I've heard it can make psoriasis worse, so why not PsA? After the initial improvement, I mean--which I experienced a couple of times myself. I'm also wondering if, by avoiding prednisone for a good length of time, can one's pain start letting up?
My husband's been having some severe problems with different joints swelling up-his right hand, the left foot, elbow, left hand, right foot, etc., along with extreme fatigue and weakness. A prednisone burst did wonders but was followed by worsening symptoms. Now his doctor is calling it gout, but the gout medicine isn't helping 100%-not even 50%. My husband keeps telling me he's going to ask for more prednisone, but I'm trying to convince him not to.
The disease is not fun. It consumes me. For me, it's something like Sybil said: my darkest moments are worrying my Enbrel is going to stop working. I feel really lucky it's helped as well as it has for 13 months now, but will it keep working? Or will I be taken off it soon if my immune system doesn't perk up???? I try not to outwardly show that PsA defines me, but inside my body and brain are constantly reminding me I have a chronic disease that may give me lots of misery in my lifetime, it sucks to always have that in the back of my mind! I think that's part of why I keep myself very busy. I'd probably get really depressed if I had too much idle time to think.
I hope you and your rheumy can find effective ways to fight the battle. One nice thing is the support here from people who actually "get it". it's OK to try natural remedies, but the biologics, when they work, can really stop the damage. You're so young--keep fighting-- we know how difficult that is, but it is necessary.
Hi, Mike! I have read your post many times but feel slightly insecure responding as you have so much experience with PSA and I am considerably new to this in comparison (at least on diagnosis and even knowing it existed). As a child I used to have “growing pains” ,that’s what my mom called them, that were only cured by a cold wet wash cloth or ice and bawling all night long. Then came my rib problem in middle school an on and on but I was told this was just part of growing up like you said suck it up. Now I have three kids and none of them have had those insane pains and two are taller than me at the age of 10 and 13 so now looking back I know. The battle is constant but you have had a long war that I just can’t imagine your pain. I think we all understand your frustration though. I mean a person can only take so much then throw their hands up and say *" it! The battle is putting your hands down, looking at your children and saying OK next step. One foot in front of the other and move forward no matter how much it hurts. At least that’s what I do. You have alot of support here if you want it and hope you keep sharing. I also wanted to say you write very well and the wording you use are so on point well put! I guess that comes with experience. Hang in there and let us know how you’re doing. Good luck!
Hi Grandma J,
Thank you for reading my blog and responding :). First let me say I'm sorry to hear about your husbands ailments. I wish him best wishes and healing. Enbryl.. hmm this is touchy for me. I see the commercials all the time advertised and a part of them anger me because it never shows the actually symptoms, and only shows a basic overview. I used this medication for years, and when i was first put on it it did wonders. I had good joint mobility, and had barely no stiffness/ swelling. In time this medication was just not cutting it and my PA started to spread to other joints on the body. When my rheumy moved me to Humira it did the same as enbryl at first. In time, i found that this medication made my immune system barely anything and that i get sick at the drop of a dime. This was very irritating to me because nobody wants to be sick all the time, and to be constantly sick when your young is crushing. Along with this, it caused my liver to inflame and retain fatty contents that were becoming close to impossible to loose. I was very athletic in my teen's early 20's so when the fat started to store it took a real big toll on me mentally. I think that was considered my dark time, and thankfully i feel like stella got her groove back and find my inner me again. I'm monitored every 3 months with a round of blood work which keeps a close look at my liver function along with all the major organs inside. I consulted with a gastroenterologist to make sure that there was no serious damage to the liver that wasn't being detected. The prednisone... hhm. The steroid injections that i use to have done once in a great while were amazing and brought instant relief 24 hours, the long term use of this I'm not sure about as i was never on it for a long period of time. When the doctor prescribed me the prednisone blast last year i was very optimistic because i was loosing serious mobility in my hands. It was almost to the point that having my kids help me cook was a impossible task because i couldn't find a good grip on the knife or it hurt to much to hold it and press down. I found that the prednisone blast didn't do anything for me except maybe me horribly ill for a week and a half. As of today me and the rheumy are finally on the same page.
Grandma J said:
Hi Mike. I hear your frustration. It sounds as if your rheumy doesn't get it.....I've heard that from so many people on here. I looked at your profile and saw that you have taken Humira. Are you still taking it but with not-so-good results? I'm concerned about the prednisone injections. You said you had a lot of them. I'm not sure, but sometimes I wonder--because of what I gathered from here as well as my rheumy refusing to give me more prednisone--if prednisone is a real culprit as far as causing the disease to increase in severity. I've heard it can make psoriasis worse, so why not PsA? After the initial improvement, I mean--which I experienced a couple of times myself. I'm also wondering if, by avoiding prednisone for a good length of time, can one's pain start letting up?
My husband's been having some severe problems with different joints swelling up-his right hand, the left foot, elbow, left hand, right foot, etc., along with extreme fatigue and weakness. A prednisone burst did wonders but was followed by worsening symptoms. Now his doctor is calling it gout, but the gout medicine isn't helping 100%-not even 50%. My husband keeps telling me he's going to ask for more prednisone, but I'm trying to convince him not to.
The disease is not fun. It consumes me. For me, it's something like Sybil said: my darkest moments are worrying my Enbrel is going to stop working. I feel really lucky it's helped as well as it has for 13 months now, but will it keep working? Or will I be taken off it soon if my immune system doesn't perk up???? I try not to outwardly show that PsA defines me, but inside my body and brain are constantly reminding me I have a chronic disease that may give me lots of misery in my lifetime, it sucks to always have that in the back of my mind! I think that's part of why I keep myself very busy. I'd probably get really depressed if I had too much idle time to think.
I hope you and your rheumy can find effective ways to fight the battle. One nice thing is the support here from people who actually "get it". it's OK to try natural remedies, but the biologics, when they work, can really stop the damage. You're so young--keep fighting-- we know how difficult that is, but it is necessary.
Hi Rachel,
Do Not feel insecure at all! When was around 8 or 9 i always had a problem with my right knee. The knee keeping popping out of the socket and never popping back in place. At one point they did a hell leg cast for a i believe a month to let the knee heal and catch up the the growth spurts. Like yourself this was chalked up the growing pains. Fast forward a little bit later, i had sever pain in my thumb from an activity i was in ( i believe this was karate), and the original though was that i broke the thumb and that it would heal. In time, the joint start fusing and the thumb didn't look ''right''. God i hate that term lol. My uncle who use to be a doctor in rhode island gave my parents the number to rheumy that i saw for a few years, and they ran test and X-rays and say that i had PA. At this time it was new and weren't sure how brittle my joints were so they pulled me out of gym, and said i couldn't do anything that required impact in case it would my fingers. However, i didn't listen because as a kid you don't want to be laid up not doing anything. As far as my candidness i think i get that from both my parents. I never blogged a day in my life so I was not sure how i would be perceived. When i first got together with my partner, his boys didn't understand that i couldn't wrestle around all the time, or that they couldn't squeeze my hands a certain way. Now thankfully, they understand that sometimes i get flare ups and they can't squeeze my hands or get jumped on. Some days its a battle to move because you feel so weighted down that it takes a miracle and few prayers to get up and moving. But my boys definitely keep me going despite how i feel. Please don't feel insecure!
Rachael said:
Hi, Mike! I have read your post many times but feel slightly insecure responding as you have so much experience with PSA and I am considerably new to this in comparison (at least on diagnosis and even knowing it existed). As a child I used to have "growing pains" ,that's what my mom called them, that were only cured by a cold wet wash cloth or ice and bawling all night long. Then came my rib problem in middle school an on and on but I was told this was just part of growing up like you said suck it up. Now I have three kids and none of them have had those insane pains and two are taller than me at the age of 10 and 13 so now looking back I know. The battle is constant but you have had a long war that I just can't imagine your pain. I think we all understand your frustration though. I mean a person can only take so much then throw their hands up and say **"* it! The battle is putting your hands down, looking at your children and saying OK next step. One foot in front of the other and move forward no matter how much it hurts. At least that's what I do. You have alot of support here if you want it and hope you keep sharing. I also wanted to say you write very well and the wording you use are so on point well put! I guess that comes with experience. Hang in there and let us know how you're doing. Good luck!
Thanks for such a warm acceptance. I was only diagnosised a year ago but have been amazed how easy it is to play connect the dots from the past now! I had the same problem with a rib that over rotated or locked up starting at the age of 13-14. Been an ongoing issue on off all my life but when it was not healing in the morning week time it led to finally figuring out my “normal” wasn’t normal at all and now the fun begins. The large pointer finger that didn’t bend wasn’t " normal " neither is the constant moving joint issues I thought was part of turning forty and having a very physical job. Yes, the word normal is terrible reminds me that I have to fit into a mold society decided we must conform to which for many is ridiculous on so many levels! Glad you decided to join and get some support. I found this site looking up what PSA was and have been hooked since. Never a blogger either, very self reliant but this disease is so confusing and isolating at times that I feel blessed to stumble upon it. Take care and stay active!
Hi Mike,
I have good news about my husband's gout--the gout medicine seems to be working now.
Oh you poor thing with having so many symptoms and the biologics aren't working anymore--and then the poor immune system on top of it all! Is there anything you can take to build up your immune system?
MrB401 said:
Hi Grandma J,
Thank you for reading my blog and responding :). First let me say I'm sorry to hear about your husbands ailments. I wish him best wishes and healing. Enbryl.. hmm this is touchy for me. I see the commercials all the time advertised and a part of them anger me because it never shows the actually symptoms, and only shows a basic overview. I used this medication for years, and when i was first put on it it did wonders. I had good joint mobility, and had barely no stiffness/ swelling. In time this medication was just not cutting it and my PA started to spread to other joints on the body. When my rheumy moved me to Humira it did the same as enbryl at first. In time, i found that this medication made my immune system barely anything and that i get sick at the drop of a dime. This was very irritating to me because nobody wants to be sick all the time, and to be constantly sick when your young is crushing. Along with this, it caused my liver to inflame and retain fatty contents that were becoming close to impossible to loose. I was very athletic in my teen's early 20's so when the fat started to store it took a real big toll on me mentally. I think that was considered my dark time, and thankfully i feel like stella got her groove back and find my inner me again. I'm monitored every 3 months with a round of blood work which keeps a close look at my liver function along with all the major organs inside. I consulted with a gastroenterologist to make sure that there was no serious damage to the liver that wasn't being detected. The prednisone... hhm. The steroid injections that i use to have done once in a great while were amazing and brought instant relief 24 hours, the long term use of this I'm not sure about as i was never on it for a long period of time. When the doctor prescribed me the prednisone blast last year i was very optimistic because i was loosing serious mobility in my hands. It was almost to the point that having my kids help me cook was a impossible task because i couldn't find a good grip on the knife or it hurt to much to hold it and press down. I found that the prednisone blast didn't do anything for me except maybe me horribly ill for a week and a half. As of today me and the rheumy are finally on the same page.
Grandma J said:Hi Mike. I hear your frustration. It sounds as if your rheumy doesn't get it.....I've heard that from so many people on here. I looked at your profile and saw that you have taken Humira. Are you still taking it but with not-so-good results? I'm concerned about the prednisone injections. You said you had a lot of them. I'm not sure, but sometimes I wonder--because of what I gathered from here as well as my rheumy refusing to give me more prednisone--if prednisone is a real culprit as far as causing the disease to increase in severity. I've heard it can make psoriasis worse, so why not PsA? After the initial improvement, I mean--which I experienced a couple of times myself. I'm also wondering if, by avoiding prednisone for a good length of time, can one's pain start letting up?
My husband's been having some severe problems with different joints swelling up-his right hand, the left foot, elbow, left hand, right foot, etc., along with extreme fatigue and weakness. A prednisone burst did wonders but was followed by worsening symptoms. Now his doctor is calling it gout, but the gout medicine isn't helping 100%-not even 50%. My husband keeps telling me he's going to ask for more prednisone, but I'm trying to convince him not to.
The disease is not fun. It consumes me. For me, it's something like Sybil said: my darkest moments are worrying my Enbrel is going to stop working. I feel really lucky it's helped as well as it has for 13 months now, but will it keep working? Or will I be taken off it soon if my immune system doesn't perk up???? I try not to outwardly show that PsA defines me, but inside my body and brain are constantly reminding me I have a chronic disease that may give me lots of misery in my lifetime, it sucks to always have that in the back of my mind! I think that's part of why I keep myself very busy. I'd probably get really depressed if I had too much idle time to think.
I hope you and your rheumy can find effective ways to fight the battle. One nice thing is the support here from people who actually "get it". it's OK to try natural remedies, but the biologics, when they work, can really stop the damage. You're so young--keep fighting-- we know how difficult that is, but it is necessary.
Hello Mike i am Bonnie while i hear your frustration i believe you are lucky in some ways i am 54 years old and think i have had this disease since i was a child without diagnoises till this year after full spinal envolment and skin envolment and being in a wheelchair for 5 years i have other illnesses that prevent me from most treatment with most of the people in my life thinking i am making this disease up and doctors scratching their heads So if no one else has told you they love and understand you toay i am hope this was helpfull with love Bonnie
Hi again, Mike. I can understand your frustration with the biologics messing with your immune system and liver. Ugh, now that I have strep and this is something I haven’t had for many years, I wouldn’t want to put up with being sick very often. I would dread having all the PsA pain again, though, too. But if I caught every bug I came in contact with I’d probably give up on the biologics. And liver damage? I never knew biologics can harm the liver!
I have 7 grandkids and we’re together a lot. They are my life. But, they’re all in grade school or younger and that means there’s almost always someone with some type of virus or infection. But, none of them has recently had strep so idk where I picked that up! I did walk through the ER a few days ago–Friday–and got sick Saturday night.
Oh well, anyway, if you find some good natural or prescription remedies that work for you, please let us know.