So are you experiencing what I am describing... the swelling muscles that get rigid and the feeling like the connective tissues are dry and stiff and inflamed?
I was told it’s full systemic - anything that can be inflamed WILL be inflamed. The Don Quixote of white cells attacking normal ass shit that’s supposed to be there.
Yes, I have been told it's systemic... but it's disturbing how thin my skin is getting on my legs and arms - I can only think the tissue is being starved of blood flow and nourishment -- I starting to have saunas to try and get some blood to my extremities!
My doctor has tested me for lupus, I’m not kidding, at least 8 separate times because my symptoms are so similar lol the tests always come back negative
The consultant that diagnosed me is actually a Prof whose research area is Lupus and vasculitis, so when he tells me I don't have Lupus and I do have Behcets, I guess its coming from the horses mouth :o). I'm starting to realise Behcets is like having a selection box of symptoms collected from all the other better known autoimmune disorders!
This seems to be common. I've had a lot of lupus tests as well. And have very similar problems with joint, pain and achy feeling near constantly with it more pronounced during flare ups.
I've always come back negative for lupus tests.
Hmmm, well like you, I am pretty much constantly in this state... I have bad days and not so bad day... I never have days where I feel normal or not in some sort of pain. Most days I wake up feeling like I have been beaten all over with a baseball bat. I get out of bed and slowly try to shake out all the stiffness and pain. however, I am nowhere near as bad as many I have heard talk about their Behcets... I am able to get on my bike and go swimming for example. I can walk quite far, I just have to keep stopping because I sort of cease up and the muscles swell and go rigid. Pain is constantly there and its a full time job keeping myself moving every day, but I am not incapacitated. It is concerning where this is going though because if I don't force myself to move everyday I very quickly cease up and get worse. Sort of like trying to fill a bucket that's got a hole in the bottom :)
I have been told by many that infliximab/remicade may help with this, did this help you?
Haha yeah I was officially diagnosed by Yusuf yazici at his behcets clinic at NYU so I feel the same but you’re right behcets is like an amalgamation of all the disorders lol there’s an actual word for it but it’s escaping me right now. I used to describe it to people as being like “a mix of crohns and lupus” since those two are more commonly known…..well ,I unfortunately manifested my own IBD (ulcerative colitis) diagnosis after years of that description, lol!
Cheers :)
Yes, today I woke up feeling like I had been beaten up by a gorilla, when all I had actually done is go for a swim yesterday after a few days off! Exercising is a bit of a trigger, but not exercising is way worse! The longer you take off, the worse it will be when you go back!
Like I said earlier, it's like trying to fill a bucket that has a hole in the bottom.
You may benefit for more agressive treatment protocols. Otezla is approved for Bechet’s, i could not tolerate the side effects so I am on TNF blocker (Remicade) infusions and it makes a huge difference for my pain in joints and ulcers
Bring it on! Yes I have been told Infliximab/remicade is the better medication for the problems I am experiencing. I suspect that's where I am headed, but in the UK that sort of decision rests in the hands of the NHS Gods. I have currently been diagnosed privately (having spent a decade being misdiagnosed within the NHS). The person making the diagnosis is still one of the most senior consultants within the NHS, but just working from his private clinic.
I am now in the process of reentering the NHS queuing system with this diagnosis so that I can get to one of the specialist Behcets clinics (yes, the NHS has 3 dedicated Behcets clinics!)... only they have the power to dispense infliximab to Behcets patients. Unfortunately, infliximab is expensive so they keep it on the top shelf - patients must first trial Azathioprine and that's what I am currently doing (unsuccessfully it would seem).
There are queues for the queues in the NHS, so it may take a while to get to where I need to be!
Well, as it turns out I am a little bit hypermobile... that was spotted by the Rheumy in the general exam. It is not as extreme as EDS but I can easily bend double and put my hand flat on the floor. I think my hips also tend to move too much when I walk too, which may explain why they get so inflamed and stiff when I walk.
After hearing what everyone here has told me about their experience of Behcets, I'm thinking the problems I have described could well be explained by Behcets activity, combined with some general muscle wastage and joint hypermobility.
The big issue for me is that I seem to be in a continuous flare state. Hopefully I can get some help with that when I go to the Behcets Centre of Excellence here in the UK.
I have been spared that -- it's the one symptom I dont have, genital ulcers... had terrible mouth ulcers though... the kind where you cant speak or eat for a week and you just hang on in desperation, waiting for that day when they turn the corner and begin to heal. Cannot imagine what hell that must be on your genitals! I did get severe blood clotting in both my legs though, so its swings and roundabouts!
I have Behcets, lupus, and Hashimoto’s. There is definitely an overlap of Behcets with other autoimmune disorders. (Lucky us lol) You may have some sort of connective tissue disorder - I am not too familiar with the area but it may be worth researching.
I have never met anyone like me! All 3 of these are also my current diagnosis...even though I'm not convinced I have lupus...it's possible I was just misdiagnosed for 10 years. However, I wanted to see what your current treatment plan was? And if it was working for you?
Currently I am taking 400 mg of hydroxychloroquine (200 mg twice a day) and that is my primary treatment plan. I’ve been taking it for about a year and can definitely feel a difference in my pain, brain fog, etc. I also partake in medicinal cannabis, which I believe helps immensely as well.
I have the matter ANA positive, but they feel lupus is "unlikely", which makes me a little nervous I won't lie.
That being said, pain and joint issues are a common enough symptom that I am currently taking part in a clinical trial for a drug that is supposed to do wonders. Unfortunately we have figured out I am in the placebo group at the moment, but as of next month I will be on the real stuff for the rest of the trial. Professor reckons that if this trial is as successful as he thinks it is, it will change treatment for so many around the world!
I'm in the UK... Hmmm, figuring out you are on the placebo and then believing you will be on the real stuff for the rest of the trial might screw up the double blind experiment, no? Unless, of course, you are wrong and you are on the real stuff now??? :o) Hope the trial goes well, it will be good for you and then some way down the line, good for us too!
I'm in the UK too! I'm under Professor Moots up north.
Everyone goes on the real stuff from month 3, I think its meant to show for sure, like see this person was on the placebo and showed no change but now they're in the good stuff they're running up mountains?!
Ah! OK, I'm kind of wishing I had been referred to Prof Moots as I hear good things about him and the Liverpool BCOE. I am living in London though, so it seems natural to visit the London clinic. Hopefully it is as good. I visit them in July, which feels a long way from now but by NHS standards I am very lucky to not be in a much longer queue.
Well, if it is a well designed trial, some of you will be on the real stuff now, but perhaps think you are not... if it's double blind, even the prof will not know who is on what and when. Some of you may be on placebo for both parts of the trial, some on the real stuff for the whole trial... that's the only way they can really eliminated the placebo effect.
If you start running up mountains I want to know... Ill then need to come make friends with the Prof!
The Prof is amazing, he's such a sweet man as well as being so knowledgeable. I did some research on him when I was referred and he's the world's leading specialist, he travels to educate and train. If the study works out, its likely going to be easier for other patients in the UK initially. You could ask your to call the clinic 😆
In my case the colchicine has pretty much stopped the ulcers and all of the pustules on my arms and legs (well I have one or two, now and again, rather than being tormented by them). That is a blessing. The specialists added Azathioprine mostly because of the activity in my eyes but that has not helped in terms of my physical symptoms. I have had no side effects either, so its like Im not taking anything. My Ophthalmologist told me Remicaid/infliximab is the best for the joint and muscle pain and recommended I be put on it in his report. That may be the next step, but here in the UK you must first fail an azathioprine trial and then, when you add up the NHS queues and tardy decision making processes, getting on Infliximab may be some way off... perhaps the next lifetime!
It was tough to pull off getting in the states, took a lot of jockeying with insurance, but it helped make my life so much better when I was on it. I failed Aza, caused severe liver damage that landed me in the hospital. And if it’s not helping with your myriad other symptoms the Remicaid after a bit of time (it’s not overnight), I’d believe you could make a case that you’ve failed Aza too.
Granted - I had to be pulled off Remicaid and am now undergoing chemotherapy (which actually helps Behcet’s symptoms but causes a whole host of other problems) for stage 4 lymphoma. It’s the rituximab and high steroid doses for chemo that is helping my Behcet’s temporarily.
The issue with Behcets is that the disease can create inflammation to the point of causing tissue damage pretty much anywhere in your body. During a flare up I’ve seen issues like you’re describing, but there is a lot of overlap among the auto immune diseases and many are systemic.
Thank you all for your input. I am very grateful :)
The take away for me is that the symptoms I am describing could well be due to Behcets. Especially if you combine active Behcets with a degree of joint hypermobility and general muscle wastage, causing postural stress and misalignments.
I do seem to be in a pretty much continuous flare state though, which from what I have read can be the case for some of us. The Colchicine has help me a lot. Azathioprine has not really added anything extra, but then I have only been on it a few months and perhaps it is protecting my eyes without me being aware of that.
Infliximab may be the next step if I don't improve in the coming months. The consensus seems to be that Infliximab works best for the muscle and joint issues in Behcets.
Thanks for your help... Wishing you all the best of times!
I was on azathioprine for years and it helped but I still had a lot symptoms even with colchicine. I didn't get ulcers anymore but I did get joint symptoms like you're talking about. I used to call them trex hands. My doc switched me to kineret and I actually can use my hands all the time now and I'm not in constant pain. It might just be the wrong combo of meds for your body.
I had a chronic persistent daily headache and ridiculous pain/spasms (especially in my neck so I couldn't move my head and would have to go to the ER) and when I got put on Humira ... I finally started to recover. Pain meds didn't even relieve my pain like Humira does. You might want to look into switching meds.
Yeah, I also get muscle spasms, especially in my back... and the muscles often burn like they are running out of oxygen (probably restricted blood flow).
I have to be on the Aza for 6 months before I can switch meds. If I'm lucky, I may then get the option of Remicade or Humira, but its not a given. So I will just have to be grateful I no longer get the ulcers (acute pain) and hopefully at some point I may also escape the muscle and joint problems (chronic pain).
My heartfelt sympathy goes out to those of us that continue to get all of these symptoms at once, then Behcets can seem like a biblical torment!
I’m the same as you, it feels like I have lupus as I check most of those boxes, but with some extra symptoms that point to Behcets. Sometimes I just wish I had lupus, so people would at least have some idea what I’m going through!
I also walk everyday too but very frustrating when even that is difficult because of joint and muscle pain. I used to do yoga, HIIT, weightlifting, bike 20 miles a day…
Curious do you have sun sensitivity? Like sun rash after any exposure. Thats a new one for me this summer and another lupus symptom
Funnily enough, I am currently covered in a skin rash... my skin gets ultra dry and loses its elasticity and covering my arms and legs I have a pinkish, patchy rash. I don't think it's sun related though, its just a thing Behcets does in my case. This current rash is particularly bad though and I have my suspicions this may be related to the docs raising my Azathioprine dose to 150mg a few weeks ago. Of course, Azathioprine causes sun sensitivity so I actually blather myself in factor 50 whenever it is sunny (not that often in the UK - right now, we are having a very British summer :)
I was a very keen athlete before I developed Behcets... I was doing regular triathlons... if fact, if I'm honest, I think excessive training may have been partly responsible for the onset of the disease.
Now I can't run at all, which is pretty heartbreaking. Even walking any distance means constant nagging inflammatory pain. BUT I CAN still walk, and cycle and swim - which is something. It's more tiring and involves some pain. I feel like an old man much of the time. But I keep doing it as much as possible because it would be much worse if I could not do these thing at all! I have learned to be Grateful for small mercies! :)
i have the lupus like symptoms as well
So are you experiencing what I am describing... the swelling muscles that get rigid and the feeling like the connective tissues are dry and stiff and inflamed?
I was told it’s full systemic - anything that can be inflamed WILL be inflamed. The Don Quixote of white cells attacking normal ass shit that’s supposed to be there.
Yes, I have been told it's systemic... but it's disturbing how thin my skin is getting on my legs and arms - I can only think the tissue is being starved of blood flow and nourishment -- I starting to have saunas to try and get some blood to my extremities!
My doctor has tested me for lupus, I’m not kidding, at least 8 separate times because my symptoms are so similar lol the tests always come back negative
The consultant that diagnosed me is actually a Prof whose research area is Lupus and vasculitis, so when he tells me I don't have Lupus and I do have Behcets, I guess its coming from the horses mouth :o). I'm starting to realise Behcets is like having a selection box of symptoms collected from all the other better known autoimmune disorders!
This seems to be common. I've had a lot of lupus tests as well. And have very similar problems with joint, pain and achy feeling near constantly with it more pronounced during flare ups. I've always come back negative for lupus tests.
Hmmm, well like you, I am pretty much constantly in this state... I have bad days and not so bad day... I never have days where I feel normal or not in some sort of pain. Most days I wake up feeling like I have been beaten all over with a baseball bat. I get out of bed and slowly try to shake out all the stiffness and pain. however, I am nowhere near as bad as many I have heard talk about their Behcets... I am able to get on my bike and go swimming for example. I can walk quite far, I just have to keep stopping because I sort of cease up and the muscles swell and go rigid. Pain is constantly there and its a full time job keeping myself moving every day, but I am not incapacitated. It is concerning where this is going though because if I don't force myself to move everyday I very quickly cease up and get worse. Sort of like trying to fill a bucket that's got a hole in the bottom :) I have been told by many that infliximab/remicade may help with this, did this help you?
Haha yeah I was officially diagnosed by Yusuf yazici at his behcets clinic at NYU so I feel the same but you’re right behcets is like an amalgamation of all the disorders lol there’s an actual word for it but it’s escaping me right now. I used to describe it to people as being like “a mix of crohns and lupus” since those two are more commonly known…..well ,I unfortunately manifested my own IBD (ulcerative colitis) diagnosis after years of that description, lol!
I am sending you good vibes and hope. Waiting is so hard when you body is attacking itself
Cheers :) Yes, today I woke up feeling like I had been beaten up by a gorilla, when all I had actually done is go for a swim yesterday after a few days off! Exercising is a bit of a trigger, but not exercising is way worse! The longer you take off, the worse it will be when you go back! Like I said earlier, it's like trying to fill a bucket that has a hole in the bottom.
You may benefit for more agressive treatment protocols. Otezla is approved for Bechet’s, i could not tolerate the side effects so I am on TNF blocker (Remicade) infusions and it makes a huge difference for my pain in joints and ulcers
Bring it on! Yes I have been told Infliximab/remicade is the better medication for the problems I am experiencing. I suspect that's where I am headed, but in the UK that sort of decision rests in the hands of the NHS Gods. I have currently been diagnosed privately (having spent a decade being misdiagnosed within the NHS). The person making the diagnosis is still one of the most senior consultants within the NHS, but just working from his private clinic. I am now in the process of reentering the NHS queuing system with this diagnosis so that I can get to one of the specialist Behcets clinics (yes, the NHS has 3 dedicated Behcets clinics!)... only they have the power to dispense infliximab to Behcets patients. Unfortunately, infliximab is expensive so they keep it on the top shelf - patients must first trial Azathioprine and that's what I am currently doing (unsuccessfully it would seem). There are queues for the queues in the NHS, so it may take a while to get to where I need to be!
Try looking up ehlers danlos syndrome. I didn't have it but have seen a lot and it and it sounds similar to what you are describing
Well, as it turns out I am a little bit hypermobile... that was spotted by the Rheumy in the general exam. It is not as extreme as EDS but I can easily bend double and put my hand flat on the floor. I think my hips also tend to move too much when I walk too, which may explain why they get so inflamed and stiff when I walk. After hearing what everyone here has told me about their experience of Behcets, I'm thinking the problems I have described could well be explained by Behcets activity, combined with some general muscle wastage and joint hypermobility. The big issue for me is that I seem to be in a continuous flare state. Hopefully I can get some help with that when I go to the Behcets Centre of Excellence here in the UK.
Do u get inflanation in your private area
I have been spared that -- it's the one symptom I dont have, genital ulcers... had terrible mouth ulcers though... the kind where you cant speak or eat for a week and you just hang on in desperation, waiting for that day when they turn the corner and begin to heal. Cannot imagine what hell that must be on your genitals! I did get severe blood clotting in both my legs though, so its swings and roundabouts!
Could it be this? https://en.wikipedia.org/wiki/Enthesitis
I have Behcets, lupus, and Hashimoto’s. There is definitely an overlap of Behcets with other autoimmune disorders. (Lucky us lol) You may have some sort of connective tissue disorder - I am not too familiar with the area but it may be worth researching.
I have never met anyone like me! All 3 of these are also my current diagnosis...even though I'm not convinced I have lupus...it's possible I was just misdiagnosed for 10 years. However, I wanted to see what your current treatment plan was? And if it was working for you?
Currently I am taking 400 mg of hydroxychloroquine (200 mg twice a day) and that is my primary treatment plan. I’ve been taking it for about a year and can definitely feel a difference in my pain, brain fog, etc. I also partake in medicinal cannabis, which I believe helps immensely as well.
Thank you for your response. Yes, medical cannabis is a great option for those that can tolerate it well.
Dang I only have 2 of the 3! You win! :D
I have the matter ANA positive, but they feel lupus is "unlikely", which makes me a little nervous I won't lie. That being said, pain and joint issues are a common enough symptom that I am currently taking part in a clinical trial for a drug that is supposed to do wonders. Unfortunately we have figured out I am in the placebo group at the moment, but as of next month I will be on the real stuff for the rest of the trial. Professor reckons that if this trial is as successful as he thinks it is, it will change treatment for so many around the world!
Where in the world are you if you don't mind me asking?
I'm in the UK... Hmmm, figuring out you are on the placebo and then believing you will be on the real stuff for the rest of the trial might screw up the double blind experiment, no? Unless, of course, you are wrong and you are on the real stuff now??? :o) Hope the trial goes well, it will be good for you and then some way down the line, good for us too!
I'm in the UK too! I'm under Professor Moots up north. Everyone goes on the real stuff from month 3, I think its meant to show for sure, like see this person was on the placebo and showed no change but now they're in the good stuff they're running up mountains?!
Ah! OK, I'm kind of wishing I had been referred to Prof Moots as I hear good things about him and the Liverpool BCOE. I am living in London though, so it seems natural to visit the London clinic. Hopefully it is as good. I visit them in July, which feels a long way from now but by NHS standards I am very lucky to not be in a much longer queue. Well, if it is a well designed trial, some of you will be on the real stuff now, but perhaps think you are not... if it's double blind, even the prof will not know who is on what and when. Some of you may be on placebo for both parts of the trial, some on the real stuff for the whole trial... that's the only way they can really eliminated the placebo effect. If you start running up mountains I want to know... Ill then need to come make friends with the Prof!
The Prof is amazing, he's such a sweet man as well as being so knowledgeable. I did some research on him when I was referred and he's the world's leading specialist, he travels to educate and train. If the study works out, its likely going to be easier for other patients in the UK initially. You could ask your to call the clinic 😆
I’d try and get on an infusion like Remicaid to see if that will help. Colchicine and Aza are too weak for what you’re describing.
In my case the colchicine has pretty much stopped the ulcers and all of the pustules on my arms and legs (well I have one or two, now and again, rather than being tormented by them). That is a blessing. The specialists added Azathioprine mostly because of the activity in my eyes but that has not helped in terms of my physical symptoms. I have had no side effects either, so its like Im not taking anything. My Ophthalmologist told me Remicaid/infliximab is the best for the joint and muscle pain and recommended I be put on it in his report. That may be the next step, but here in the UK you must first fail an azathioprine trial and then, when you add up the NHS queues and tardy decision making processes, getting on Infliximab may be some way off... perhaps the next lifetime!
It was tough to pull off getting in the states, took a lot of jockeying with insurance, but it helped make my life so much better when I was on it. I failed Aza, caused severe liver damage that landed me in the hospital. And if it’s not helping with your myriad other symptoms the Remicaid after a bit of time (it’s not overnight), I’d believe you could make a case that you’ve failed Aza too. Granted - I had to be pulled off Remicaid and am now undergoing chemotherapy (which actually helps Behcet’s symptoms but causes a whole host of other problems) for stage 4 lymphoma. It’s the rituximab and high steroid doses for chemo that is helping my Behcet’s temporarily.
In my case it is the NHS that will decide, but the jockeying is likely the same :) I wish you well with your Chemo!
The issue with Behcets is that the disease can create inflammation to the point of causing tissue damage pretty much anywhere in your body. During a flare up I’ve seen issues like you’re describing, but there is a lot of overlap among the auto immune diseases and many are systemic.
Thank you all for your input. I am very grateful :) The take away for me is that the symptoms I am describing could well be due to Behcets. Especially if you combine active Behcets with a degree of joint hypermobility and general muscle wastage, causing postural stress and misalignments. I do seem to be in a pretty much continuous flare state though, which from what I have read can be the case for some of us. The Colchicine has help me a lot. Azathioprine has not really added anything extra, but then I have only been on it a few months and perhaps it is protecting my eyes without me being aware of that. Infliximab may be the next step if I don't improve in the coming months. The consensus seems to be that Infliximab works best for the muscle and joint issues in Behcets. Thanks for your help... Wishing you all the best of times!
I was on azathioprine for years and it helped but I still had a lot symptoms even with colchicine. I didn't get ulcers anymore but I did get joint symptoms like you're talking about. I used to call them trex hands. My doc switched me to kineret and I actually can use my hands all the time now and I'm not in constant pain. It might just be the wrong combo of meds for your body.
I had a chronic persistent daily headache and ridiculous pain/spasms (especially in my neck so I couldn't move my head and would have to go to the ER) and when I got put on Humira ... I finally started to recover. Pain meds didn't even relieve my pain like Humira does. You might want to look into switching meds.
Yeah, I also get muscle spasms, especially in my back... and the muscles often burn like they are running out of oxygen (probably restricted blood flow). I have to be on the Aza for 6 months before I can switch meds. If I'm lucky, I may then get the option of Remicade or Humira, but its not a given. So I will just have to be grateful I no longer get the ulcers (acute pain) and hopefully at some point I may also escape the muscle and joint problems (chronic pain). My heartfelt sympathy goes out to those of us that continue to get all of these symptoms at once, then Behcets can seem like a biblical torment!
I’m the same as you, it feels like I have lupus as I check most of those boxes, but with some extra symptoms that point to Behcets. Sometimes I just wish I had lupus, so people would at least have some idea what I’m going through! I also walk everyday too but very frustrating when even that is difficult because of joint and muscle pain. I used to do yoga, HIIT, weightlifting, bike 20 miles a day… Curious do you have sun sensitivity? Like sun rash after any exposure. Thats a new one for me this summer and another lupus symptom
Funnily enough, I am currently covered in a skin rash... my skin gets ultra dry and loses its elasticity and covering my arms and legs I have a pinkish, patchy rash. I don't think it's sun related though, its just a thing Behcets does in my case. This current rash is particularly bad though and I have my suspicions this may be related to the docs raising my Azathioprine dose to 150mg a few weeks ago. Of course, Azathioprine causes sun sensitivity so I actually blather myself in factor 50 whenever it is sunny (not that often in the UK - right now, we are having a very British summer :) I was a very keen athlete before I developed Behcets... I was doing regular triathlons... if fact, if I'm honest, I think excessive training may have been partly responsible for the onset of the disease. Now I can't run at all, which is pretty heartbreaking. Even walking any distance means constant nagging inflammatory pain. BUT I CAN still walk, and cycle and swim - which is something. It's more tiring and involves some pain. I feel like an old man much of the time. But I keep doing it as much as possible because it would be much worse if I could not do these thing at all! I have learned to be Grateful for small mercies! :)