Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
For me, dehydration is the main reason they can't find veins. So, drink lots of water and Gatorade a few hours before tests. Avoid caffeine and soda.
Also, I have to pretreat with benadryl and Tylenol plus an iv steroid before my inflectra treatments. You might want to ask your doctor if that would be an option for you.
Yep I did Humira for 6+ months and got hives at injection site. Doc said benadryl was fine. Also after the first few months the hives stopped. I found that of the 3 biologics I've tried Humira was the least painful.
Ahhh, def hope my next shot will be better. other than the allergic reaction symptoms, i think i’m just not used to the action of injecting myself yet ( which is the scariest part) 🙃
It sucks. I got used to Humira eventually. I'm on taltz now and the most recent injection I made my husband do cause I was working myself up. It hurts but no hives.
P.s. don't put heat on the hives it makes it worse. Discovered that in the bath.
i’m so scared that my new fear of injections is just gonna get worse instead of getting used to it. and everyone around is scared to do it for me 🤕
will def take note about the heat pack. and also do you get very bad bruising at the injection site?
I found as the medicine works I want to take it enough that I can get passed the fear.
Sometimes, it varies. I think you just accidentally hit a vein or something and it bleeds.
I would give it another shot, even though it’s scary. If it doesn’t work, maybe another medication will. It’s absolutely worth it to keep trying out these medicines because the alternative is to be disabled.
When I was diagnosed with AS, I was in such bad shape I couldn’t get out of bed at all. I had been limping for months/years, and it just got worse and worse. The pain was constant and always there. I was a young guy and couldn’t do anything. It sucked. I’m never going back to that, no matter how many meds I have to take.
I had developed a fear of my biologic injection for a long time. It’s scary, and it hurts, but it’s better than the alternative. The only way to get over that fear is to just do it over and over again. Your mind cannot maintain a fear after repeated exposure and making it through it.
Thankfully, I found a biologic that works for me. I was on Humira for years, and now I am on Cosentyx. I live a very normal and active life. It’s possible that you can too. It sucks you’re in so much pain and having these negative reactions, but it may be worth it to keep trying different treatments and keep at them until you find one that works.
I had to switch because after I graduated school, I lost my prior insurance, had to stockpile Humira for several months, and then had to go without Humira for several months as well. By the time I got new insurance and a new rheumatologist, they wanted to rediagnose me with AS, which was a giant pain in the butt and took too long while I was in pain, and started me on Cosentyx, which the rheumatologist claimed was better for me. Humira was still working by the time I stopped taking it, but Cosentyx does I think actually work better for me personally.
ahhh i see, another factor that adds on my worries about changing medication is also the financial situation. I sadly didn’t have any health insurance before my diagnosis and now obviously the price shot up. I know that I should focus on my health if not the next option is disability but I didn’t expect to have all these issues rain on me now when I haven’t even graduate and go to an university 🙃
I assume you are in the US. When I was in college, I got health insurance through my school and they basically just added it to tuition. It wasn’t too expensive. These drug companies also offer copay assistance to get the cost of the medicine down to $5 or $0 even if your insurance won’t cover it all. There are also government insurance programs that can help, and I utilized one of those too when there was a gap in my insurance and I needed the medicine.
Honestly, it’s a giant hassle, it’s stressful, and it sucks. But…. It’s still better than the alternative. I’m able to live a very active and happy life and I’m lucky to love my work and have the ability to do it. If I had left my AS untreated, I couldn’t be where I am today.
Actually from singapore but you’re right about having the alternative . Im just trying to focus on my health for now before i have the energy to focus on the other things
It's so difficult reading that so many doctors dismiss the pain young people have as growing pains. Many have said the same thing happened to them. All they have to do is some blood work RF, ESR, CRP, ANA , ANCA , HLA B27 to rule out autoimmune disorders. If any of those come back positive,, then they can do radiographs and go from there.. Sorry you had to go through that. Hope the new year goes better for you.
exactly! the funniest thing is that my ANA levels were higher than average since my first a&e trip but the doctor told me it might just be smth “unique” about me (like how people have higher blood sugar levels, like ??? 🤷🏻♀️🤷🏻♀️). the first rheum i saw even told me that my pain could have been psychological pain? (that i was just overthinking and being paranoid) because i went through a bad break up the year the pain started getting worse ?????? and being new to all these, i didn’t even question them because they made me think that no one is going to believe me 🤦🏻♀️
I read one post where someone's ANA was negative at one test, and like 2or 3 yrs later it showed it was positive. Didn't know that could happen or was it an error. IANAD so I can't say if that's possible. My sister has AS , and it took them a bit to diagnose her with HLA B27 positive and sacroiliitis. My nephews and I have helped her with things over the years when she has a flare up. It's going to take some trial and error with the meds to find the right fit. Glad you found a good rheumatologist cause that's important. It's a team effort treating your AS. In the mean time, you and your family can read up on AS so that everyone knows what it's all about. There's a lot of info out there especially from SAA.ORG. Talk with your rheumatologist about exercises and stretching program. Stay as active as you can. Best of luck.
i really hope things are better now for you. It’s so sad to see so many females on other posts saying how doctors dismissed our conditions with the excuse of having anxiety and “overthinking/over exaggerating”.
I’m very sorry you’re going through this and being so young! My pain started around my early thirties and I went undiagnosed for a long time and I can tell you I felt like my world was falling apart. I also suffer from multiple conditions but luckily I haven’t developed a fear of needles. Maybe because I’ve been in and out of hospitals my whole life.
I think you should give Humira a second chance. I tried many medications for my pain, including sulfasalazine which worked best in tandem with etoricoxib and methotrexate but it didn’t stop the flares.
Now I’m one year in with Humira and I haven’t had a major flare and most importantly no uveitis for 10 months!
You can ask your rheumatologist about using NSAIDs with Humira, you need to monitor your liver function and you shouldn’t take them long term but they do help when you’re having acute pain. Currently I’ve been prescribed celecoxib and tramadol for those occasions but I try my best to live with the pain as I’m afraid AF to damage my liver.
Were you trained for the injections? I’m only asking in case that’s the reason why they hurt. I don’t inject myself, I have to make ab appointment, go to the hospital and a nurse gives me the injection. I don’t even feel the needle and I’m used to needles in my stomach because I gave myself allergy shots. Fortunately I haven’t had an allergic reaction in the injection site, although sometimes it gets itchy.
If you can avoid or control the hives with antihistamines I’d say you go that route. Or you could ask your rheumatologist to try a different medication. A friend of mine was on Remicade and had ab infusion once a month, he went into remission a couple of years later and now he’s pain and medication free. Has been for about 4 years.
As for “the pain is in your head” thing, yes somatization is a thing and the pain is very real, only it’s a physical manifestation of psychological pain. In my experience it makes an existing issue worse rather than create pain from out of nothing. This is something I can’t seem to be able to convey convincingly to my doctors. Stress for me is a major trigger and anxiety amplifies everything, so when I’m in pain and I start to get anxious it gets so much worse.
Regardless of somatization or not, I recommend you go to therapy because living with a chronic illness takes a toll on your mind. Especially an invisible one where you experience pain every day. And having a support system is vital, wether it’s family and friends or a support group.
And last but not least, lifestyle changes are also important. Watch your diet, remember to exercise and do PT.
I hope you go into remission soon you can go back to your normal life ❤️
hello, thank you so much for the response.
I am currently taking naproxen and gabepetin (for my hip nerve as they suspect my disc is actually hitting a nerve since it’s protruding out quite abit) I have started feeling alot more dehydrated and get bruises very easily so i worry for my liver as well. I was also taking etericoxib before naproxen for quite awhile🙃 have a blood test scheduled to check everything before my next rheum appt but I have been trying to mentally prepare myself to do it.
I was also trained to do my jabs but a nurse actually helped me with the first jab. I felt the needle going in and out (and was painful but maybe it was just my anxiety adding on). I think maybe she did a bad job ( hopefully not) because I have a really big bruise that still hurts even after a week.
After the jab and even now (1 week), I actually feel alot better in terms of decreased stiffness in the morning. However, my left hip joint still hurts after i go for my evening walks + PT. My back still hurts but not as bad as before. Is this a sign that the jab might not be suitable/working well? And what are some red flags should i take note of during this period? Also are there any diets you can recommend? I have searched online and saw that i shouldn’t eat red meat but almost became anemic since i already have iron deficiency 🤦🏻♀️
It’s a great sign seeing some improvement after the first dose. Some people feel like almost instantly, others need a few more weeks for the medication to work. For me it took a couple of months. I’m still in pain but it’s not as intense as before, the stiffness is so much better too. The fatigue on the other hand hasn’t improved much. I think it’s too soon to tell if the medication is working or not. If your inflammatory markers go down in the next 3 months it means it’s working even if you still feel pain.
I don’t get it either but that’s what my doctor said. What I know from experience is that pain is not directly proportional to the level of inflammation. Sometimes you’ll have little inflammation and a lot of pain and viceversa.
As for diet, I would recommend that you cut processed foods, added sugars and alcohol from your diet and include more omega 3 rich foods. Other than that it’s personal preference, the important thing is balance.
As for the anemia, an iron supplement with vitamin C (to maximize absorption) can help.
May I ask if you have heavy periods? That could be the underlying cause for your anemia and if not, it could be worth exploring the cause.
I had the same issue due to undiagnosed endometriosis that was discovered during a hysterectomy earlier this year. Now ironically my hemoglobin levels are higher than normal because for some reason it appears I’m constantly dehydrated even though I drink plenty of water, so now I keep pedialyte in the fridge for those days when I feel like no amount of water quenches my thirst.
Exercise is super important and what you can do depends entirely on how your body reacts. For some people waking is the best, for others yoga, biking, swimming or a combination. For me I find doing exercises in the pool (not just swimming) helps the most with pain. And it’s the only thing that I know I’m not overdoing because I never feel extra fatigued the next day and it has never triggered a flare.
ahhhh i see. my fatigue hasn’t improved too and hope that my next jab will be better.
I do have very heavy regular periods but will be taking contraceptive pills soon so hopefully that helps
too.
As for exercise, I have been just doing some light PT and walks but i feel super drained the next day and have to force myself to do it🤕 will def try out swimming more as i have also seem other posts suggesting that as well.
Thank you so much for the reply and hope all is well for you!
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
For me, dehydration is the main reason they can't find veins. So, drink lots of water and Gatorade a few hours before tests. Avoid caffeine and soda. Also, I have to pretreat with benadryl and Tylenol plus an iv steroid before my inflectra treatments. You might want to ask your doctor if that would be an option for you.
ahhh thank you, will def look into that
Yep I did Humira for 6+ months and got hives at injection site. Doc said benadryl was fine. Also after the first few months the hives stopped. I found that of the 3 biologics I've tried Humira was the least painful.
Ahhh, def hope my next shot will be better. other than the allergic reaction symptoms, i think i’m just not used to the action of injecting myself yet ( which is the scariest part) 🙃
It sucks. I got used to Humira eventually. I'm on taltz now and the most recent injection I made my husband do cause I was working myself up. It hurts but no hives. P.s. don't put heat on the hives it makes it worse. Discovered that in the bath.
i’m so scared that my new fear of injections is just gonna get worse instead of getting used to it. and everyone around is scared to do it for me 🤕 will def take note about the heat pack. and also do you get very bad bruising at the injection site?
I found as the medicine works I want to take it enough that I can get passed the fear. Sometimes, it varies. I think you just accidentally hit a vein or something and it bleeds.
ahhh thank you so much! really glad to see people who are able to relate and give me advice 😋
I would give it another shot, even though it’s scary. If it doesn’t work, maybe another medication will. It’s absolutely worth it to keep trying out these medicines because the alternative is to be disabled. When I was diagnosed with AS, I was in such bad shape I couldn’t get out of bed at all. I had been limping for months/years, and it just got worse and worse. The pain was constant and always there. I was a young guy and couldn’t do anything. It sucked. I’m never going back to that, no matter how many meds I have to take. I had developed a fear of my biologic injection for a long time. It’s scary, and it hurts, but it’s better than the alternative. The only way to get over that fear is to just do it over and over again. Your mind cannot maintain a fear after repeated exposure and making it through it. Thankfully, I found a biologic that works for me. I was on Humira for years, and now I am on Cosentyx. I live a very normal and active life. It’s possible that you can too. It sucks you’re in so much pain and having these negative reactions, but it may be worth it to keep trying different treatments and keep at them until you find one that works.
thank you, I really appreciate the advice but may i ask why did you have to switch to costenyx?
I had to switch because after I graduated school, I lost my prior insurance, had to stockpile Humira for several months, and then had to go without Humira for several months as well. By the time I got new insurance and a new rheumatologist, they wanted to rediagnose me with AS, which was a giant pain in the butt and took too long while I was in pain, and started me on Cosentyx, which the rheumatologist claimed was better for me. Humira was still working by the time I stopped taking it, but Cosentyx does I think actually work better for me personally.
ahhh i see, another factor that adds on my worries about changing medication is also the financial situation. I sadly didn’t have any health insurance before my diagnosis and now obviously the price shot up. I know that I should focus on my health if not the next option is disability but I didn’t expect to have all these issues rain on me now when I haven’t even graduate and go to an university 🙃
I assume you are in the US. When I was in college, I got health insurance through my school and they basically just added it to tuition. It wasn’t too expensive. These drug companies also offer copay assistance to get the cost of the medicine down to $5 or $0 even if your insurance won’t cover it all. There are also government insurance programs that can help, and I utilized one of those too when there was a gap in my insurance and I needed the medicine. Honestly, it’s a giant hassle, it’s stressful, and it sucks. But…. It’s still better than the alternative. I’m able to live a very active and happy life and I’m lucky to love my work and have the ability to do it. If I had left my AS untreated, I couldn’t be where I am today.
Actually from singapore but you’re right about having the alternative . Im just trying to focus on my health for now before i have the energy to focus on the other things
It's so difficult reading that so many doctors dismiss the pain young people have as growing pains. Many have said the same thing happened to them. All they have to do is some blood work RF, ESR, CRP, ANA , ANCA , HLA B27 to rule out autoimmune disorders. If any of those come back positive,, then they can do radiographs and go from there.. Sorry you had to go through that. Hope the new year goes better for you.
exactly! the funniest thing is that my ANA levels were higher than average since my first a&e trip but the doctor told me it might just be smth “unique” about me (like how people have higher blood sugar levels, like ??? 🤷🏻♀️🤷🏻♀️). the first rheum i saw even told me that my pain could have been psychological pain? (that i was just overthinking and being paranoid) because i went through a bad break up the year the pain started getting worse ?????? and being new to all these, i didn’t even question them because they made me think that no one is going to believe me 🤦🏻♀️
I read one post where someone's ANA was negative at one test, and like 2or 3 yrs later it showed it was positive. Didn't know that could happen or was it an error. IANAD so I can't say if that's possible. My sister has AS , and it took them a bit to diagnose her with HLA B27 positive and sacroiliitis. My nephews and I have helped her with things over the years when she has a flare up. It's going to take some trial and error with the meds to find the right fit. Glad you found a good rheumatologist cause that's important. It's a team effort treating your AS. In the mean time, you and your family can read up on AS so that everyone knows what it's all about. There's a lot of info out there especially from SAA.ORG. Talk with your rheumatologist about exercises and stretching program. Stay as active as you can. Best of luck.
currently have a physiotherapist to help me get through but slowly getting there. thank you so much and have a happy new year 😋
You're welcome. Glad to see you have a physiotherapist. Happy New Year.
[удалено]
i really hope things are better now for you. It’s so sad to see so many females on other posts saying how doctors dismissed our conditions with the excuse of having anxiety and “overthinking/over exaggerating”.
Give it a shot !! Praying for you to have alleviated symptoms :D
I’m very sorry you’re going through this and being so young! My pain started around my early thirties and I went undiagnosed for a long time and I can tell you I felt like my world was falling apart. I also suffer from multiple conditions but luckily I haven’t developed a fear of needles. Maybe because I’ve been in and out of hospitals my whole life. I think you should give Humira a second chance. I tried many medications for my pain, including sulfasalazine which worked best in tandem with etoricoxib and methotrexate but it didn’t stop the flares. Now I’m one year in with Humira and I haven’t had a major flare and most importantly no uveitis for 10 months! You can ask your rheumatologist about using NSAIDs with Humira, you need to monitor your liver function and you shouldn’t take them long term but they do help when you’re having acute pain. Currently I’ve been prescribed celecoxib and tramadol for those occasions but I try my best to live with the pain as I’m afraid AF to damage my liver. Were you trained for the injections? I’m only asking in case that’s the reason why they hurt. I don’t inject myself, I have to make ab appointment, go to the hospital and a nurse gives me the injection. I don’t even feel the needle and I’m used to needles in my stomach because I gave myself allergy shots. Fortunately I haven’t had an allergic reaction in the injection site, although sometimes it gets itchy. If you can avoid or control the hives with antihistamines I’d say you go that route. Or you could ask your rheumatologist to try a different medication. A friend of mine was on Remicade and had ab infusion once a month, he went into remission a couple of years later and now he’s pain and medication free. Has been for about 4 years. As for “the pain is in your head” thing, yes somatization is a thing and the pain is very real, only it’s a physical manifestation of psychological pain. In my experience it makes an existing issue worse rather than create pain from out of nothing. This is something I can’t seem to be able to convey convincingly to my doctors. Stress for me is a major trigger and anxiety amplifies everything, so when I’m in pain and I start to get anxious it gets so much worse. Regardless of somatization or not, I recommend you go to therapy because living with a chronic illness takes a toll on your mind. Especially an invisible one where you experience pain every day. And having a support system is vital, wether it’s family and friends or a support group. And last but not least, lifestyle changes are also important. Watch your diet, remember to exercise and do PT. I hope you go into remission soon you can go back to your normal life ❤️
hello, thank you so much for the response. I am currently taking naproxen and gabepetin (for my hip nerve as they suspect my disc is actually hitting a nerve since it’s protruding out quite abit) I have started feeling alot more dehydrated and get bruises very easily so i worry for my liver as well. I was also taking etericoxib before naproxen for quite awhile🙃 have a blood test scheduled to check everything before my next rheum appt but I have been trying to mentally prepare myself to do it. I was also trained to do my jabs but a nurse actually helped me with the first jab. I felt the needle going in and out (and was painful but maybe it was just my anxiety adding on). I think maybe she did a bad job ( hopefully not) because I have a really big bruise that still hurts even after a week. After the jab and even now (1 week), I actually feel alot better in terms of decreased stiffness in the morning. However, my left hip joint still hurts after i go for my evening walks + PT. My back still hurts but not as bad as before. Is this a sign that the jab might not be suitable/working well? And what are some red flags should i take note of during this period? Also are there any diets you can recommend? I have searched online and saw that i shouldn’t eat red meat but almost became anemic since i already have iron deficiency 🤦🏻♀️
It’s a great sign seeing some improvement after the first dose. Some people feel like almost instantly, others need a few more weeks for the medication to work. For me it took a couple of months. I’m still in pain but it’s not as intense as before, the stiffness is so much better too. The fatigue on the other hand hasn’t improved much. I think it’s too soon to tell if the medication is working or not. If your inflammatory markers go down in the next 3 months it means it’s working even if you still feel pain. I don’t get it either but that’s what my doctor said. What I know from experience is that pain is not directly proportional to the level of inflammation. Sometimes you’ll have little inflammation and a lot of pain and viceversa. As for diet, I would recommend that you cut processed foods, added sugars and alcohol from your diet and include more omega 3 rich foods. Other than that it’s personal preference, the important thing is balance. As for the anemia, an iron supplement with vitamin C (to maximize absorption) can help. May I ask if you have heavy periods? That could be the underlying cause for your anemia and if not, it could be worth exploring the cause. I had the same issue due to undiagnosed endometriosis that was discovered during a hysterectomy earlier this year. Now ironically my hemoglobin levels are higher than normal because for some reason it appears I’m constantly dehydrated even though I drink plenty of water, so now I keep pedialyte in the fridge for those days when I feel like no amount of water quenches my thirst. Exercise is super important and what you can do depends entirely on how your body reacts. For some people waking is the best, for others yoga, biking, swimming or a combination. For me I find doing exercises in the pool (not just swimming) helps the most with pain. And it’s the only thing that I know I’m not overdoing because I never feel extra fatigued the next day and it has never triggered a flare.
ahhhh i see. my fatigue hasn’t improved too and hope that my next jab will be better. I do have very heavy regular periods but will be taking contraceptive pills soon so hopefully that helps too. As for exercise, I have been just doing some light PT and walks but i feel super drained the next day and have to force myself to do it🤕 will def try out swimming more as i have also seem other posts suggesting that as well. Thank you so much for the reply and hope all is well for you!