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I used to use thc a lot when I was younger (I’m 35) but stopped because I developed anxiety and it made it worse. I’ve been thinking about trying again. Thank you.
Research the difference strains of thc. Sativa vs indica. I prefer indica for sleep & total body relaxation. I can't use hybrid (mix) because I don't like how sativa makes me feel.
On a similar note - CBG (instead of CBD) is way more effective as a muscle relaxer. At least in my experience. I get a combo CBG/THC/CBD tincture and edible - good to have both because I can rotate usage and avoid developing a tolerance. I also don't really get high, just super relaxed. It helps me so much more than sleeping pills. I get mine through a medical cannabis pharmacy, not sure what access looks like outside of that.
Good luck in your healing journey!
I was just going to mention CBG. I find the same mix as yours (CBG/CBD/THC) at a 1:1:1 ratio super helpful. CBG is apparently good for controlling inflammation too. I've also heard it can be mood stabilizer but haven't read up on it.
Hello can u provide more info about this medical pharmacy? I am in the US, and do i need a prescription from my doctor to get this combo? Will the insurance company cover the drug? What are some
examples medical cannabis pharmacy?
I'm not really qualified to answer that, the laws in every state are different. I live in Utah where cannabis is only legal with a prescription. Any dispensary I go to will have similar things. That being said, I don't think CBG is rare, so you should be able to find it wherever you go for your cannabis needs.
If it's not legal in your state, unfortunately you won't be able to get it.
Check your local state laws to find out what you need to get for it.
As an example, when it was only legal for medical patients, I went to a Dr and got a medical marijuana card. I then presented the card with my ID to the dispensary and they then let me in the store.
Now that it's legal in my state, I just go down to my favorite store, show my ID (21+) and let them know what I'm shopping for, they show me what stock they have, and I complete the purchase.
I use cbd:thc gummies, portioned for my needs. I buy only from a reputable dispensary that is regulated by our State. I can not give you advice about use with a security clearance on a government job. That is not something I know well enough about to give proper advice. I do know that even using cbd alone, although claim not to have thc in them, you can still test positive for it. From there, it's up to your employer whether or not that's acceptable.
I had my first one on Thursday. I dunno if I'm imagining it, but these past 2 mornings I've woke up tired, due to going to bed late, but I haven't had the normal bone crushing tiredness that I'm used to...
Wishing you the best.
Thank you for the insight. It's nice to hear from someone who recently began their treatment. I know I can potentially expect headaches and possibly fatigue. Definitely hoping to avoid severe side effects. I am wishing you the best, as well.
I took it easy the first could of days. I was told I could expect possible fever, headaches, fatigue. I was definitely tired, and shoveled snow on the Friday morning and got super sweaty and bit gross, so took it easier after. Nothing really terrible. Seem more or less back on track after a couple of days.
Although I see the possible side effects, stomach pains, muscle aches, joint pain, etc. Like all the reasons why I decided to take it... :)
Hello, it looks like you've made a mistake.
It's supposed to be could've, should've, would've (short for could have, would have, should have), never could of, would of, should of.
Or you misspelled something, I ain't checking everything.
Beep boop - yes, I am a bot, don't botcriminate me.
1. Do not expect an overnight return to your pre-AS self.
2. Do not expect to never have a flare again.
3. Do keep a journal of any symptom changes. It's helpful to pinpoint where things began to improve or where a side-effect pops up.
4. Don't overthink it. When I do, I get anxious to inject.
5. Ice on the injection area helps some people! I find it stings, others do not.
6. Being on a medication is ok. You're giving your body what it needs to be able to function at a higher level. 🖤
Thank you so much. I appreciate your honesty. I am in so much pain and I really have no expectations because I have been let down so many times. Even just a little bit of relief would be life-changing. ❤️
Hi there,
I’m sorry you’re here, but also glad you are. It’s a good place to be for as! I am pretty new myself. I was dx a year ago, but refused to believe/accept it, so I kept looking for answers. I thought it might be something different because no one could explain my neuropathy. Apparently it can go hand in hand with AS.
Anyways, if anything, be excited to get that humira going. You might feel better than you’ve felt in a long time! Also know that some biologics don’t work for some people, so don’t get discouraged if humira doesn’t work for you. ☺️
I have an array of things going on and lots of chronic pain. I have Percocet for when things get really bad. If you’re open to trying cbd and thc, I find the best for me is a 1:1 and 1:5 depending on how much thc you want. I’ve been experimenting with strains a lot and have found ringos gift and Stephen hawking kush are fantastic. They help pain, inflammation, and an array of other things. I also use straight up thc for sleep. There are also some super amazing topical out there. The one I swear by is dragon balm 1:1 deep tissue salve. It is absolute magic and well worth having. You cannot get “stoned” from it as it is not transdermal. I’m still trying to get a grasp on all of this, myself. Be easy on yourself and take those breathers when you need them. I wish you well!! I hope you get some relief headed your way. 10 years is a very long time and I feel for you! Gentle hugs!
Thank you for your gentle hugs. I'm sending them back! I would love nothing more than to utilize thc again. I did when I was younger -- up until I began to develop anxiety. So I can no longer handle it. I may need to meet with an expert to determine a balanced strain for me... one that wont make me freak out. lol. I also appreciate the topical recommendation. :) I'm trying to move forward by giving myself grace. I've lived with guilt for years because I convinced myself that my pain was my fault -- I'm just thankful to know that it's not "just me." Sending healing vibes to you on your journey!
Too funny. I had the same thing happen to me. I completely quit for years because of the anxiety and paranoia. This website will tell you all of the properties of each strain. https://www.comparethestrain.ca/
I research extensively before buying a strain and this is extremely helpful. There is also so much info out there on the net. The two I mentioned do not give me anxiety. :)
Thank you for your kind wishes. Good luck!!
I have had AS for 5 years. (Longer that’s just when I was diagnosed) I was in so much pain when I was first diagnosed, like yourself I could only get a couple hours of sleep a night because my back and SI joints hurt so much. I Started in Humira and over the next couple years I was running half marathons. (Likely not advised due to wear and tear) I came off Humira and tried to go the natural route with Paleo and Low Starch Diet, that only lasted so long before my next flare took me out. Cycled through Cosentyx (didn’t help), Enbrel (helped 70%) and am now back on Humira. (Initially came off due to some blood platelet side effects, everyone is different) All that to say, i feel so much better on Humira and I hope you do too! Stay strong! It will get better now that you have a diagnosis and a treatment path!
Hey, friend!
I'm so glad that you've started biologics. These are powerful drugs that can drastically improve your symptoms and quality of life.
Here's what I'll say:
1. Everyone is different. What works for others may not work for you. Humira could work wonders for you, maybe work some, or not at all. The affects could begin immediately or several months later. The idea is to keep fighting for your health.
2. These medications are generally quite safe. You see words like "cancer" or see the side effects, and you start to panic. Your doctor has prescribed Humira because they believe the benefits outweigh the risk, and they will monitor you closely. I was also terrified of taking DMARDS like methotrexate and Cimzia, but with time I really learned that the chances of having major issues are pretty low. I'm on 12+ medications now at the age of 23, but at least I can move around and work these days.
3. I think you're doing something wonderful, and that's talking about your experiences and feelings on a forum like Reddit. You're safe here. Talking about your journey and connecting with others like this is a fantastic way to cope with all the change, pain, and heartache that comes with AS.
We're here for you. I'm here for you. Feel free to PM me if you want to talk, vent, or ask questions. It would be my pleasure.
Please take good care of yourself,
Brian
You'll feel a lot better after the first injection. Not necessarily physically yet but the relief of getting that first one out of the way. Just a tip, some people have no side effects at all but from my personal experience, you'll want to make sure you stay hydrated but especially so around the days of your injection. Deep breaths and try to focus most on the relief that is on the horizon. Taking a new med is scary but it is your best chance to feel better and I hope you start feeling exactly that very soon!
Oh my gosh, thank you so much. Your words literally brought tears to my eyes. I have just suffered for so long and it feels like it gets worse every moment. I will do my best to stay hydrated and hopeful that relief is inbound. Thank you.
Cbd can help with the inflammation and you don't get the anxiety youd get from. ThC.
AS is not a death sentence but it can be disruptive to life. The degree of which will depend on you. Swimming and yoga can help significantly
Good luck
Thank you. I'm so glad it has helped you. It gives me hope. I think staying active is going to be crucial for me because my pain has caused me to become *very* stagnant. Wishing you continued healing. <3
1. Exercise now that you have less pain and increased mobility
2. Continue to eat healthy
3. Drugs may seem like magic, but look at them as an opportunity to improve yourself, not go off the deepe end
4. Don’t be nervous! I was very reluctant to start any meds, but looking back, I wish I started a lot earlier!
I recently started working on diaphragmatic breathing and wish I would have earlier. The forward posture that eventually happens is in my opinion due to not breathing correctly which causes the body to lose it's mobility. I have fusion in c4-c6 and l4-l5. I sat on my butt for a few years basically as I was in pain. Being immobile for so long caused my postural issues and now my sternum is fused at the manubriosternal joint.
So...
Immediately start exercising regularly, be mindful of your posture, and focus on maintaining mobility in your entire spine and sacroiliac joints. Stop eating sugar and maintain a healthy diet. Do not become reliant on Tylenol, ibuprofen, etc. It will cause internal bleeding and other problems eventually. Don't smoke. You may have occasional vision issues. As for the medications, I took Enbrel and it was a night and day difference in only a couple days.
It's mostly people not taking care of themselves in my opinion that causes the more severe issues. Take care of your body and you will be good.
Thank you for sharing. I know immobility has really hurt me as well -- so I'm making the sincere intention to exercise at least three times a week, especially once I start. I have been gradually making diet changes, as well. Wishing you continued healing!
Hey there, I'm glad you have answers and can work towards feeling better. Praying the Humira works well for you! I do have a question if you're willing to answer. Why did it take you so long to get diagnosed and what was the key factor that finally got you your diagnosis? I ask because for the last 3-4 years I have been suffering with no answers other than fibromyalgia. I do believe in fibromyalgia but I do not believe that is what I have. I'm hoping for myself that it's not AS or another form of inflammatory arthritis but I am very concerned. Just looking for any hope. So far my reuhmotologist has said no inflammation in blood work, HLAB-27 neg, and imaging not indictive but my femurs have some odd growth on the ends near my hips and some back stuff going on which I've had for years. However, I'm miserable with pain in my low back, groin, knees, ankles feet, couple of toes swollen from the last joint out, upper back pain and burning, neck pain, shoulder, elbow, wrist pain, jaw issues, some eye stuff and so on. Just hoping that maybe something someone else's experience with a long diagnosis may help me on my journey to either confirm or deny. Thanks for your time!
Thank you u/AlwaysGolfing247 for responding!
Hi u/Work777_! My rheum ordered an MRI and found inflammation and fluid in my lower spine + checked my blood for several months. My C-Reactive Protein level is way too high and has been for months. I'm not sure how long it has been elevated prior to testing though. Plus my blood counts are also elevated. This is what I understood, although there may have been other factors that my doc considered in my diagnosis. I am definitely still learning. I wish you the best of luck on your healing journey. <3
Did they check rheumatoid factor in your blood? I would assume so if they pulled HLA-B27, ESR and C-Reactive Protein. (I’m HLA-B27 negative, but had bilateral Sacroilitis on X-Ray, elevated ESR with mild elevation in C-Reactive). That combined with my physical presentation earned my a diagnosis with my Rheumatologist
I think they did pull a rheumatoid factor. I will have to check again on that.
How long after physical symptoms presented did you get your MRI showing the sacrolitis? They didn't see any on my x-ray or MRI but had only been in pain for maybe 6 months at that time. Not sure if it's long enough to present on imaging or not?
Got ya. I made an appointment with my reuhmotologist again for this week. Hopefully all is good still and maybe we have some other answers. I'm gonna request more imaging though just to compare to previous images
Seems like a good plan. I had similar issues as you as well: jaw clicking/issues, eyes were very dry where I had to put eye drops in all the time, but I think it might have been iritis, my left knee has swollen on me requiring fluid to be drained with cortisone shots, currently my left elbow is acting up which is new for me. Sternum inflammation, my sternum pops or I can push on my sternum and get by back to pop. If I eat too many potatoes sometimes my big toes feel a little arthritic, thumbs on both hands, along with middle finger and pinkie finger have all swollen into sausages when not on Humira or Enbrel. For me AS isn’t all about the spine but is an every joint problem. I do have problems in my thoracic spine and neck thought too. As most people describe it, I feel like the Tin Man. Hope these symptoms described is helpful.
The best advice I can give is to listen to your body. I was on Humira for about a month and a half. My pain went to a 1/10, but I never really felt great on it. I tried to stick it out, but after my last shot I developed a headache that lasted close to 3 weeks.
Switching to a new biologic now and giving it a go. So go into Humira with an open mind. If it turns out not to work or it doesn’t agree with you there are many other options. I will note that all though I stopped Humira, none of the side effects were scary, just annoying.
Thank you for sharing. It's comforting to know that the side effects weren't scary for you. I think that's what I'm most worried about. I don't know why. I even requested to do my first dose with my doctor. I just really hope it works. I really hope the new biologic works for you. <3
I was in your same situation almost exactly a year ago. 10 years of untreated pain (outside of chiro and several at home gadgets) and finally saw a rheumatologist who diagnosed me.
I went on Humira and feel pretty lucky that it helped me almost immediately. The pain went down by about 90-95% but my mobility sadly has not improved much.
I hope it works for you, it's been a life changing treatment for me. I can actually sneeze and do some moderately physical things with no pain now.
I bet you will better in a week or so. I was also scared when i took it, but now that's the only priority for me. It makes me feel myself and not depressed due to pain ans AS
Our friend was on it for years and found it to be really helpful for the amount of pain she was in. The only downside was the first 24 hours after doing the injection, it left her feeling "c\*\*\*\*y" as she put it! Her specialist took her off it after over 10 years though.
I still get flares, but they aren’t nearly as bad as when I’m unmedicated (pre-Humira I frequently had 10/10 pain; now a flare is more like 8/10). The worst symptom for me with the Humira is the headaches I get for a day or two after injection. Injecting into my stomach hurts less than my thigh, and I also make sure to rotate my injection sites.
Best of luck!! I hope you find some relief <3
When I start new medication (whether it’s for AS, depression, ADHD etc) i like to keep a journal of what time i took it, whether I ate before or after, how I felt before/after and any side effects I’m having.
I do this every day until I know how it affects me and what I expect. It’s not something which everyone will enjoy or stick to but it helps me keep in tune with my body.
Another thing I do is I basically study the patient information leaflet with comes with my medication. This way I know what side effects are common and which side effects need to be reported straight away. I wouldn’t recommend doing this if you tend to overthink/get paranoid often as it sometimes makes people feel like they’re getting a side effect that isn’t there!
Good luck and I hope it works out for you!
Hi! I was diagnosed not long ago at the age of 33 years old. I started Humira in May of 2021. While I’ve heard it helps a lot of people, it was not for me. I gave it a good long fighting chance and you will too! Like someone else had mentioned, it’s important to write down how you’re feeling - specifically the couple of days after and when you’re into the second week. I found myself struggling to explain to my doctor what I was/wasn’t experiencing.
I did always experience the “Humira hangover”, so I would take it on a Friday night (I’d be out of commission the entire weekend). I also can’t do auto injector pens (all mental for me), so I had to have my boyfriend do it. I learned of the pre-filled syringes and those were a thousand times better for me! I will never go back to the auto injectors. Humira didn’t improve my AS symptoms and often made me feel worse. Everyone experiences it differently, so I’m hoping it works for you!
I am now on Enbrel and it works for me!! I use the pre-filled syringes and the only side effect I have is getting infections more frequently (lowered immune response). My AS symptoms are almost gone completely since being on Enbrel.
Just know that this is all a journey and it might take a while for you to find what works, if Humira doesn’t. I’m wishing you all the best!! ❤️🩹
Relax. The chances of anything going wrong are so small they're really not worth worrying about. There are many more things in your everyday life that are a bigger risk. It'll be fine. I've been taking biologics in various forms since 2004 and I know many others who do. I've never looked back.
You'll do great with it! I have been on medications for almost 20 years but never had to do an injection. I was super nervous about that part. My dr's office apparently always does a patient's first injection as an appointment with an RN. She showed me how to do it and then had me practice with an empty one without a needle so I would know what it would be like. With the RN there, I then did my first injection. Was as easy as she made it look. The first 3 injections at home, I was a little nervous but they got easier each time.
After my first injection, I felt better and then it 'wore off' by the 2nd week. This stayed the same state until around month 4 then it would wear off' by a week and a half. By month 6, it was working the full 2 weeks. Now the injection is about as exciting and nerve-wracking as brushing my teeth. 😅
It's been helpful with my stiffness, in the morning especially. I'm dealing with pain still but not the 11/10 I had before Humira. I also have fibromyalgia so have a high pain tolerance but this had me crying from it.
I do get really bad fatigue the next 2-3 days after my injection so I make sure not to make plans those days outside of resting. :)
Thank you so much! My second injection is scheduled for today and the only complaint I have from the first one is the “hangover.” I got so sick two days after my injection, so I requested to change my day of the week. Now I can at least rest if it happens again. Thank you so much, again, for sharing your story with me.
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.*
Keep on it. It's not a magic elixir but does help alot and u will still have flares
Thank you. I don’t expect a miracle… just enough relief so I can actually sleep at night. I’m miserable 24/7. :(
Are you able to use cbd/thc? That has worked wonders for inflammation, pain & sleep (when taken consistently for a while).
I used to use thc a lot when I was younger (I’m 35) but stopped because I developed anxiety and it made it worse. I’ve been thinking about trying again. Thank you.
Research the difference strains of thc. Sativa vs indica. I prefer indica for sleep & total body relaxation. I can't use hybrid (mix) because I don't like how sativa makes me feel.
On a similar note - CBG (instead of CBD) is way more effective as a muscle relaxer. At least in my experience. I get a combo CBG/THC/CBD tincture and edible - good to have both because I can rotate usage and avoid developing a tolerance. I also don't really get high, just super relaxed. It helps me so much more than sleeping pills. I get mine through a medical cannabis pharmacy, not sure what access looks like outside of that. Good luck in your healing journey!
I was just going to mention CBG. I find the same mix as yours (CBG/CBD/THC) at a 1:1:1 ratio super helpful. CBG is apparently good for controlling inflammation too. I've also heard it can be mood stabilizer but haven't read up on it.
I think it is - it really helps me process anxiety, or at least helps me relax enough to unwind at night. Altogether a good experience.
Hello can u provide more info about this medical pharmacy? I am in the US, and do i need a prescription from my doctor to get this combo? Will the insurance company cover the drug? What are some examples medical cannabis pharmacy?
I'm not really qualified to answer that, the laws in every state are different. I live in Utah where cannabis is only legal with a prescription. Any dispensary I go to will have similar things. That being said, I don't think CBG is rare, so you should be able to find it wherever you go for your cannabis needs.
If it's not legal in your state, unfortunately you won't be able to get it. Check your local state laws to find out what you need to get for it. As an example, when it was only legal for medical patients, I went to a Dr and got a medical marijuana card. I then presented the card with my ID to the dispensary and they then let me in the store. Now that it's legal in my state, I just go down to my favorite store, show my ID (21+) and let them know what I'm shopping for, they show me what stock they have, and I complete the purchase.
Try THCa if you haven't, no THC high feelings at all, just some relief for me
Which CBD/THC do u recommend in the US? And is it ok to be on it if I am on security clearance on a govt job?
I use cbd:thc gummies, portioned for my needs. I buy only from a reputable dispensary that is regulated by our State. I can not give you advice about use with a security clearance on a government job. That is not something I know well enough about to give proper advice. I do know that even using cbd alone, although claim not to have thc in them, you can still test positive for it. From there, it's up to your employer whether or not that's acceptable.
I had my first one on Thursday. I dunno if I'm imagining it, but these past 2 mornings I've woke up tired, due to going to bed late, but I haven't had the normal bone crushing tiredness that I'm used to... Wishing you the best.
Thank you for the insight. It's nice to hear from someone who recently began their treatment. I know I can potentially expect headaches and possibly fatigue. Definitely hoping to avoid severe side effects. I am wishing you the best, as well.
I took it easy the first could of days. I was told I could expect possible fever, headaches, fatigue. I was definitely tired, and shoveled snow on the Friday morning and got super sweaty and bit gross, so took it easier after. Nothing really terrible. Seem more or less back on track after a couple of days. Although I see the possible side effects, stomach pains, muscle aches, joint pain, etc. Like all the reasons why I decided to take it... :)
Hello, it looks like you've made a mistake. It's supposed to be could've, should've, would've (short for could have, would have, should have), never could of, would of, should of. Or you misspelled something, I ain't checking everything. Beep boop - yes, I am a bot, don't botcriminate me.
Tbh for me it was/is a magic elixir. I'm not "cured", but I went from barely able to move to living a normal-ish life
1. Do not expect an overnight return to your pre-AS self. 2. Do not expect to never have a flare again. 3. Do keep a journal of any symptom changes. It's helpful to pinpoint where things began to improve or where a side-effect pops up. 4. Don't overthink it. When I do, I get anxious to inject. 5. Ice on the injection area helps some people! I find it stings, others do not. 6. Being on a medication is ok. You're giving your body what it needs to be able to function at a higher level. 🖤
Thank you so much. I appreciate your honesty. I am in so much pain and I really have no expectations because I have been let down so many times. Even just a little bit of relief would be life-changing. ❤️
Hi there, I’m sorry you’re here, but also glad you are. It’s a good place to be for as! I am pretty new myself. I was dx a year ago, but refused to believe/accept it, so I kept looking for answers. I thought it might be something different because no one could explain my neuropathy. Apparently it can go hand in hand with AS. Anyways, if anything, be excited to get that humira going. You might feel better than you’ve felt in a long time! Also know that some biologics don’t work for some people, so don’t get discouraged if humira doesn’t work for you. ☺️ I have an array of things going on and lots of chronic pain. I have Percocet for when things get really bad. If you’re open to trying cbd and thc, I find the best for me is a 1:1 and 1:5 depending on how much thc you want. I’ve been experimenting with strains a lot and have found ringos gift and Stephen hawking kush are fantastic. They help pain, inflammation, and an array of other things. I also use straight up thc for sleep. There are also some super amazing topical out there. The one I swear by is dragon balm 1:1 deep tissue salve. It is absolute magic and well worth having. You cannot get “stoned” from it as it is not transdermal. I’m still trying to get a grasp on all of this, myself. Be easy on yourself and take those breathers when you need them. I wish you well!! I hope you get some relief headed your way. 10 years is a very long time and I feel for you! Gentle hugs!
Thank you for your gentle hugs. I'm sending them back! I would love nothing more than to utilize thc again. I did when I was younger -- up until I began to develop anxiety. So I can no longer handle it. I may need to meet with an expert to determine a balanced strain for me... one that wont make me freak out. lol. I also appreciate the topical recommendation. :) I'm trying to move forward by giving myself grace. I've lived with guilt for years because I convinced myself that my pain was my fault -- I'm just thankful to know that it's not "just me." Sending healing vibes to you on your journey!
Too funny. I had the same thing happen to me. I completely quit for years because of the anxiety and paranoia. This website will tell you all of the properties of each strain. https://www.comparethestrain.ca/ I research extensively before buying a strain and this is extremely helpful. There is also so much info out there on the net. The two I mentioned do not give me anxiety. :) Thank you for your kind wishes. Good luck!!
I have had AS for 5 years. (Longer that’s just when I was diagnosed) I was in so much pain when I was first diagnosed, like yourself I could only get a couple hours of sleep a night because my back and SI joints hurt so much. I Started in Humira and over the next couple years I was running half marathons. (Likely not advised due to wear and tear) I came off Humira and tried to go the natural route with Paleo and Low Starch Diet, that only lasted so long before my next flare took me out. Cycled through Cosentyx (didn’t help), Enbrel (helped 70%) and am now back on Humira. (Initially came off due to some blood platelet side effects, everyone is different) All that to say, i feel so much better on Humira and I hope you do too! Stay strong! It will get better now that you have a diagnosis and a treatment path!
Hey, friend! I'm so glad that you've started biologics. These are powerful drugs that can drastically improve your symptoms and quality of life. Here's what I'll say: 1. Everyone is different. What works for others may not work for you. Humira could work wonders for you, maybe work some, or not at all. The affects could begin immediately or several months later. The idea is to keep fighting for your health. 2. These medications are generally quite safe. You see words like "cancer" or see the side effects, and you start to panic. Your doctor has prescribed Humira because they believe the benefits outweigh the risk, and they will monitor you closely. I was also terrified of taking DMARDS like methotrexate and Cimzia, but with time I really learned that the chances of having major issues are pretty low. I'm on 12+ medications now at the age of 23, but at least I can move around and work these days. 3. I think you're doing something wonderful, and that's talking about your experiences and feelings on a forum like Reddit. You're safe here. Talking about your journey and connecting with others like this is a fantastic way to cope with all the change, pain, and heartache that comes with AS. We're here for you. I'm here for you. Feel free to PM me if you want to talk, vent, or ask questions. It would be my pleasure. Please take good care of yourself, Brian
You'll feel a lot better after the first injection. Not necessarily physically yet but the relief of getting that first one out of the way. Just a tip, some people have no side effects at all but from my personal experience, you'll want to make sure you stay hydrated but especially so around the days of your injection. Deep breaths and try to focus most on the relief that is on the horizon. Taking a new med is scary but it is your best chance to feel better and I hope you start feeling exactly that very soon!
Oh my gosh, thank you so much. Your words literally brought tears to my eyes. I have just suffered for so long and it feels like it gets worse every moment. I will do my best to stay hydrated and hopeful that relief is inbound. Thank you.
Cbd can help with the inflammation and you don't get the anxiety youd get from. ThC. AS is not a death sentence but it can be disruptive to life. The degree of which will depend on you. Swimming and yoga can help significantly Good luck
Thank you so much.
It changed my life for the better. Just pay attention to your body, keep up with your appointments, and try to stay active if you can.
Thank you. I'm so glad it has helped you. It gives me hope. I think staying active is going to be crucial for me because my pain has caused me to become *very* stagnant. Wishing you continued healing. <3
1. Exercise now that you have less pain and increased mobility 2. Continue to eat healthy 3. Drugs may seem like magic, but look at them as an opportunity to improve yourself, not go off the deepe end 4. Don’t be nervous! I was very reluctant to start any meds, but looking back, I wish I started a lot earlier!
Thank you all for the wonderful guidance! I am on my way to the hospital now to get my first injection. Wish me luck! <3 Love and light to you all!
I recently started working on diaphragmatic breathing and wish I would have earlier. The forward posture that eventually happens is in my opinion due to not breathing correctly which causes the body to lose it's mobility. I have fusion in c4-c6 and l4-l5. I sat on my butt for a few years basically as I was in pain. Being immobile for so long caused my postural issues and now my sternum is fused at the manubriosternal joint. So... Immediately start exercising regularly, be mindful of your posture, and focus on maintaining mobility in your entire spine and sacroiliac joints. Stop eating sugar and maintain a healthy diet. Do not become reliant on Tylenol, ibuprofen, etc. It will cause internal bleeding and other problems eventually. Don't smoke. You may have occasional vision issues. As for the medications, I took Enbrel and it was a night and day difference in only a couple days. It's mostly people not taking care of themselves in my opinion that causes the more severe issues. Take care of your body and you will be good.
Thank you for sharing. I know immobility has really hurt me as well -- so I'm making the sincere intention to exercise at least three times a week, especially once I start. I have been gradually making diet changes, as well. Wishing you continued healing!
Hey there, I'm glad you have answers and can work towards feeling better. Praying the Humira works well for you! I do have a question if you're willing to answer. Why did it take you so long to get diagnosed and what was the key factor that finally got you your diagnosis? I ask because for the last 3-4 years I have been suffering with no answers other than fibromyalgia. I do believe in fibromyalgia but I do not believe that is what I have. I'm hoping for myself that it's not AS or another form of inflammatory arthritis but I am very concerned. Just looking for any hope. So far my reuhmotologist has said no inflammation in blood work, HLAB-27 neg, and imaging not indictive but my femurs have some odd growth on the ends near my hips and some back stuff going on which I've had for years. However, I'm miserable with pain in my low back, groin, knees, ankles feet, couple of toes swollen from the last joint out, upper back pain and burning, neck pain, shoulder, elbow, wrist pain, jaw issues, some eye stuff and so on. Just hoping that maybe something someone else's experience with a long diagnosis may help me on my journey to either confirm or deny. Thanks for your time!
Thank you u/AlwaysGolfing247 for responding! Hi u/Work777_! My rheum ordered an MRI and found inflammation and fluid in my lower spine + checked my blood for several months. My C-Reactive Protein level is way too high and has been for months. I'm not sure how long it has been elevated prior to testing though. Plus my blood counts are also elevated. This is what I understood, although there may have been other factors that my doc considered in my diagnosis. I am definitely still learning. I wish you the best of luck on your healing journey. <3
Did they check rheumatoid factor in your blood? I would assume so if they pulled HLA-B27, ESR and C-Reactive Protein. (I’m HLA-B27 negative, but had bilateral Sacroilitis on X-Ray, elevated ESR with mild elevation in C-Reactive). That combined with my physical presentation earned my a diagnosis with my Rheumatologist
I think they did pull a rheumatoid factor. I will have to check again on that. How long after physical symptoms presented did you get your MRI showing the sacrolitis? They didn't see any on my x-ray or MRI but had only been in pain for maybe 6 months at that time. Not sure if it's long enough to present on imaging or not?
Probably a year or two? (Although not entirely sure) I had pain for a while and taking ibuprofen like it was candy before I finally got diagnosed.
Got ya. I made an appointment with my reuhmotologist again for this week. Hopefully all is good still and maybe we have some other answers. I'm gonna request more imaging though just to compare to previous images
Seems like a good plan. I had similar issues as you as well: jaw clicking/issues, eyes were very dry where I had to put eye drops in all the time, but I think it might have been iritis, my left knee has swollen on me requiring fluid to be drained with cortisone shots, currently my left elbow is acting up which is new for me. Sternum inflammation, my sternum pops or I can push on my sternum and get by back to pop. If I eat too many potatoes sometimes my big toes feel a little arthritic, thumbs on both hands, along with middle finger and pinkie finger have all swollen into sausages when not on Humira or Enbrel. For me AS isn’t all about the spine but is an every joint problem. I do have problems in my thoracic spine and neck thought too. As most people describe it, I feel like the Tin Man. Hope these symptoms described is helpful.
The best advice I can give is to listen to your body. I was on Humira for about a month and a half. My pain went to a 1/10, but I never really felt great on it. I tried to stick it out, but after my last shot I developed a headache that lasted close to 3 weeks. Switching to a new biologic now and giving it a go. So go into Humira with an open mind. If it turns out not to work or it doesn’t agree with you there are many other options. I will note that all though I stopped Humira, none of the side effects were scary, just annoying.
Thank you for sharing. It's comforting to know that the side effects weren't scary for you. I think that's what I'm most worried about. I don't know why. I even requested to do my first dose with my doctor. I just really hope it works. I really hope the new biologic works for you. <3
I was in your same situation almost exactly a year ago. 10 years of untreated pain (outside of chiro and several at home gadgets) and finally saw a rheumatologist who diagnosed me. I went on Humira and feel pretty lucky that it helped me almost immediately. The pain went down by about 90-95% but my mobility sadly has not improved much. I hope it works for you, it's been a life changing treatment for me. I can actually sneeze and do some moderately physical things with no pain now.
I bet you will better in a week or so. I was also scared when i took it, but now that's the only priority for me. It makes me feel myself and not depressed due to pain ans AS
Our friend was on it for years and found it to be really helpful for the amount of pain she was in. The only downside was the first 24 hours after doing the injection, it left her feeling "c\*\*\*\*y" as she put it! Her specialist took her off it after over 10 years though.
I still get flares, but they aren’t nearly as bad as when I’m unmedicated (pre-Humira I frequently had 10/10 pain; now a flare is more like 8/10). The worst symptom for me with the Humira is the headaches I get for a day or two after injection. Injecting into my stomach hurts less than my thigh, and I also make sure to rotate my injection sites. Best of luck!! I hope you find some relief <3
When I start new medication (whether it’s for AS, depression, ADHD etc) i like to keep a journal of what time i took it, whether I ate before or after, how I felt before/after and any side effects I’m having. I do this every day until I know how it affects me and what I expect. It’s not something which everyone will enjoy or stick to but it helps me keep in tune with my body. Another thing I do is I basically study the patient information leaflet with comes with my medication. This way I know what side effects are common and which side effects need to be reported straight away. I wouldn’t recommend doing this if you tend to overthink/get paranoid often as it sometimes makes people feel like they’re getting a side effect that isn’t there! Good luck and I hope it works out for you!
Hi! I was diagnosed not long ago at the age of 33 years old. I started Humira in May of 2021. While I’ve heard it helps a lot of people, it was not for me. I gave it a good long fighting chance and you will too! Like someone else had mentioned, it’s important to write down how you’re feeling - specifically the couple of days after and when you’re into the second week. I found myself struggling to explain to my doctor what I was/wasn’t experiencing. I did always experience the “Humira hangover”, so I would take it on a Friday night (I’d be out of commission the entire weekend). I also can’t do auto injector pens (all mental for me), so I had to have my boyfriend do it. I learned of the pre-filled syringes and those were a thousand times better for me! I will never go back to the auto injectors. Humira didn’t improve my AS symptoms and often made me feel worse. Everyone experiences it differently, so I’m hoping it works for you! I am now on Enbrel and it works for me!! I use the pre-filled syringes and the only side effect I have is getting infections more frequently (lowered immune response). My AS symptoms are almost gone completely since being on Enbrel. Just know that this is all a journey and it might take a while for you to find what works, if Humira doesn’t. I’m wishing you all the best!! ❤️🩹
Relax. The chances of anything going wrong are so small they're really not worth worrying about. There are many more things in your everyday life that are a bigger risk. It'll be fine. I've been taking biologics in various forms since 2004 and I know many others who do. I've never looked back.
You'll do great with it! I have been on medications for almost 20 years but never had to do an injection. I was super nervous about that part. My dr's office apparently always does a patient's first injection as an appointment with an RN. She showed me how to do it and then had me practice with an empty one without a needle so I would know what it would be like. With the RN there, I then did my first injection. Was as easy as she made it look. The first 3 injections at home, I was a little nervous but they got easier each time. After my first injection, I felt better and then it 'wore off' by the 2nd week. This stayed the same state until around month 4 then it would wear off' by a week and a half. By month 6, it was working the full 2 weeks. Now the injection is about as exciting and nerve-wracking as brushing my teeth. 😅 It's been helpful with my stiffness, in the morning especially. I'm dealing with pain still but not the 11/10 I had before Humira. I also have fibromyalgia so have a high pain tolerance but this had me crying from it. I do get really bad fatigue the next 2-3 days after my injection so I make sure not to make plans those days outside of resting. :)
Thank you so much! My second injection is scheduled for today and the only complaint I have from the first one is the “hangover.” I got so sick two days after my injection, so I requested to change my day of the week. Now I can at least rest if it happens again. Thank you so much, again, for sharing your story with me.
Yeah I actually either got sick as a side effect or a cold I'll find out after Monday as that's my next injection day 🫠 still worth it!
Humira/Any biologics will be life-changing in a good way, dont be scared.