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Behçet's UK
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Back Pain

I have two questions. Does anyone have issues with Behçet’s causing pain in their spine, shoulders and knees? I hurt so bad I just cry and that’s with opioids on board.

Second, my rheumatologist wants me to try Otezla. Does anyone have experience with it and could offer any advice about it?

I’m in so much pain I can’t stand it, but I didn’t think Behçet’s caused pain in the spine like this.

Any info or advice anyone can give to me would be greatly appreciated. Thank you!

Lori

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Yes, pain in spine, shoulders and knees. Plus neck, elbows, hands, hips, thighs, calves and feet. Eyes and head. Just about everywhere. Luckily the pains are bearable, even forgettable sometimes.

X Rays showed dégénérative problems in my spine, neck and feet. I have had spinal taps and tests for electro stimulation of muscles and nerves but no ‘explanation’ found for other pain areas.

I rarely take pain killers - out of concern that I might get dependent on them. Hot baths help, as well as stretching. The nature of our body pains might be different...

Best

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I had to go on opioids many years ago because my pain was so severe. I was supposed to start titrating off of them slowly, but I’m waiting for this flare to pass. I’m hoping the Otezla provides enough relief to help let go of them too.

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I have widespread arthropathy on full body bone scan. At first they thought Psoriatic arthritis then Prof questioned that. I have degenerative disc disease, loss of disc height has led to facet joint arthrosis & pain from that. Have seronegative spondyloarthropathy & no markers for RA. I have a lot of tendon pain & some torn tendons in shoulders. Bursitis there & in knees sometimes flares. Patellofemoral OA as well. Ankles, wrists, elbows OA. Bulging discs in neck & lumbar spine. Retrolisthesis at L5-S1. Mild thoracic scoliosis & moderate kyphosis.

I did have one whiplash injury to my neck many years ago.

Most pain now is myalgia in neck & upper shoulder area. Trying low Low Dose Naltrexone now. Just started last night & will titrate up over 3 weeks, noting symptoms to find ideal dose in my case.

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Forgot to say I take paracetamol for pain. I tend to avoid the NSAIDs as I’m sensitive to them. Sometimes though I need aspirin to cure a migraine. I’m also diagnosed with Fibromyalgia by a couple of Rheumatologists.

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I’ll have to look into paracetamol. I have not heard of that one before. I’ve had fibromyalgia since 1992 - and the pain I have now is not myofascial but nerve pain for certain. I started doing physical therapy and bam - massive pain. If it was fibromyalgia I’d know how to deal. Right now I sit on lots of ice.

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Hello.

I also have lower back, shoulder and buttocks pain attributed to psoriatic artiritis. This runs rampant through my mom's side of the family.

I also have neurobehcets and will soon be having a brain veinogram. The netve pain and tingling in my arms and legs and the diminished sensation in some places have made things uncomfortable. Lyrica helps some--I can only take a low dose because it negatively affects my bowel.

Sigh! Behcets can be a handful!

Kind regards.

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Like wrestling an alligator!

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I have no experience of the drug you mention so can't help there.

Usually Fibro related joint pain responds to opioid treatment.

If you are getting worse despite opiates it may not be Fibro pain , or you pain treatment may need adjusting.

I don't find ice packs very useful for either Behcets or Fibro pain . Unless caused by exercise or an acute injury ice isn't always therapuetic for inflammatory pain.

Heat therapy usually has more impact on chronic pain , especially if it is deep tissue or muscular .

Try using heat pads or hot water bottles on the pain centres. And warm baths or using your shower head to massage water on your joints and back also help.

Many people with Behcets react badly to massage , and many holistic treatments.

Some have alot of intolerance to topical creams.

You could to a tiny skin test for intolerance for a cream like Arnica or a balm like Tiger balm or , believe it or not a Menthol rub like Vicks!! These are beneficial for joint pain and inflammation , as long as you don't have allergies to the ingredients.

Gentle stretching and rotation exercises help to reduce back and joint pain , especially when you are in a flare and can't do other exercise .

Swimming also combats the loss of muscle strength and muscle pain from taking steroids and other drugs.

Putting your arms above your head and trying to push the sky , stretches your back to relieve pain and kneeling on the floor sit back on your feet , then curl your body over your knees as rest like that for a minute .

If your knees are to bad to do the above , lie on your stomach on the bed for 10 mins morning and night with your arms up and hands folded under your head , it elongates the spine . When you get up don't quickly move , turn on your side , bend your knees up and bring your arms down into a foetal position , then get up.

We also loose Vitamins from our inflammation , especially Vitamin D . That is vital for joint health and a deficiency in it can cause very intense joint pain and stiffness.

You could request a Vitamin D and Calcium test at the GP and find you need a Vitamin D supplement .

Or take a high dose Vitamin D supplement for a month . Vitamin C and Calcium , plus Magnesium and Zinc all help muscle , nerve and joint pain too . Have a regular multi vit and mineral supplement each day. And Omega 3 and garlic will also help joint health and circulation. I've tried it and it does help. Lots more fluids are also good. Dehydration causes more inflammation issues.

If non of these help too much the Rheumy may need to give you x-rays or consider other pain relief options and it may be worth requesting a referral to a Pain Management Clinic and Physio.

Take care , hope it improves , Bee xx

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I’ve had facet block injections at times & they gave temporary relief but cannot keep having those.

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Me too - and I have a hard time getting rides for those. If they would just let me take Uber life would be good.

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Hi,

Yes, widespread pain throughout my body, worst in hips, spine, shoulder joints, but in all other joints and muscles from head to toes. Inflammatory markers in bloods always normal, even when pain and swelling is at its worst.

I hope it helps to know that others are in the same boat.

All the best,

Will.

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Same here - inflammatory markers in blood always normal even on worst days !!!

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I wonder why that is - mine can be slightly positive, they test again, and they are negative. Bonkers.

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Thanks for that. I was thinking that I’m not alone as I was reading some of the other responses - thank you for reminding me because I forget, feel alone and get depessed.

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Will,

Are you saying when you feel the worse your labs come back normal?

Were you diagnosed with Bechet’s?

That’s been the problem with me and getting a firm diagnosis from the Rheumatologist..

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Hi @Frustrated2

Yes that’s right and yes I was diagnosed with Behçets in 2013 with completely normal labs. Even when my mouth is a mess with ulceration, down below too, active bowel ulceration, swollen throughout joints etc etc very clearly inflammation is rife, labs come back normal every time.

Will.

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This is so hard to get diagnosed! I have symptoms some have been on the lighter side but have had everything. Issues for over 28 years. But I know eat Gluten, Dairy, Sugar Free and have learned more about my Genetics (working with a Functional Medicine Doctor)

My blood work is normal except my thyroid and hormones are now going whacking.

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Hi Lori

Yes lots of back pain over the last 30 years and all the other usual stuff too. I have been on Methotrexate for last 2 years which has helped and a mix of Naproxen and cocodimal if very bad. Swimming and heat help a great deal and keeping moving through the pain, I was on holiday recently and we had a hot tub for the week which I used every morning, can honestly say it was my best week in 30 years!! But until I win the lottery will have to make do with hot shower each morning which gets me moving for the day.

Keep smiling

Alan

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Hot tubs are heavenly but they are so expensive, aren’t they? This is the first time I’ve had pain shut me down.

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Steam rooms are amazing too.

I use the ones at a local health club.

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I too have degenerative disc disease. Back pain is an issue. I have fibromyalgia though so sometimes it’s hard to tell which is which. I don’t opioids. Even Tramadol makes me feel out of it. I take gabapentin for fibromyalgia. I can’t take nsaids because I’m on blood thinners. I use heating pads, hemp cream, and essential oils. My lower back is the worst. Lately it’s been putting me out of commission. I wish I could tell you there is a silver bullet. I find things that help. I buy THC cream on Amazon and use a Stress Away Young Living oil. I’m not loyal to products. I just find what works and use it. Good luck!

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I’ve been on opioids since 2006 - and have built up a healthy tolerance to them and need to get off of them. My memory is telling me this. And when I have surgery they can’t give me enough of them to control my pain. Not a road to go down. But the government, in their ultimate stupidity, are cutting back the amount of opioids that people can take, starting April 2, with no time to titer down slowly - I’m absolutely screwed because I don’t have 1200 a month to pay for these out of pocket, if they will sell them to me without insurance. They’ve been having hearings in Congress about this where doctors, Medicare leaders, members of the CDC who wrote the procedure, etc., are telling Congress that they are over-reaching by getting in between the patient and their doctor, among other reasons. This is the second cutback that Trump has directed happen. I have been talking to my pain management doctor about it - who didn’t listen to me - or I could have worked my way down in dose. Now I’ve learned that this is happening on April 2 - I’m so pissed, which is probably why I hurt! Our president has no understanding of human suffering and could care less about anything but himself. I shouldn’t go political but I am just so angry at the all out attack on disabled people being perpetrated by our country.

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I also feel insurance shouldn’t decide what happens with what happens to a persons medical health. I have a friend right now fighting melanoma not getting proper treatment due to insurance deciding what is right. And it’s not experimental, just an MRI...

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Not right - not right at all.

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Hi Lori.

I use Otezla for my blisters and skin conditions. It works. It doesn't take all of the blisters, rashes or nodules away but it definitely calms and limits the outbreaks. They are less and less every time and smaller too. When I have a flare up, blisters normally get out of control. With Otezla my blister flares are nothing like a flare without Otezla. Im all for this med.

I also suffer from pain in my spine knees, shoulders, hands, elbows, feet...u name it. My dr says its vasculitis and RA working together to torcher me. 😩 Thanks doc. Anyway I feel your pain. Please know you are not alone. I'll always be available for sharing information or if you're feeling alone and need to chat with someone who knows exactly how you feel.

Wishing you remission!

Gina

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Did you have nausea and other issues with Otezla for a few weeks in the beginning? I’ve read people’s responses and issues with this drug and it seems people either love it or hate it. I’m nervous about starting it but I started it yesterday and am nauseated. I can’t take colchicine because I had an allergic reaction to it. My doc says that they are approving Otezla as a treatment for Behçet’s, Lupus, etc., this year. I’m going to jump in and go for it but sometimes I think meds are harder than the disease.

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Yes I was very nauseous for the first few weeks. I use zofran and promethazine for nausea. It helped me a lot. I had to stop taking Otezla for about 9 months and recently restarted because I had an out of control blister/rash flare. Restarting it made me go thru all the nausea again. Those nausea meds work great!! Since I restarted my skin and blisters have stopped about 75% and the other 25% is manageable because the blisters are so tiny they don't bother me too much (guess I'm getting used to them). Hang in there and talk to your doctors about a nausea med that might work for you. I hope Otezla works out!

Gina

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I didn’t think about the nausea meds. I see my rheumatologist this week and will hit him up. Meantime I’ve found a wonderful naturopath who is treating me with all sorts of things, including ozone and time in a bariatric chamber. I’m pretty much done with most of Western medicine right now.

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I also got in so much pain in my spine I just cried and nothing worked to stop it. I quit taking the Otezla and the pain is back to its normal roar and my pain meds help again. I still have to ask my rheumatologist about this.

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I have herniated disks in my lower back and it causes me pain so bad that I end up in an ambulance on the way to the hospital. My Dr gave me some strong pain medicine that helps. I'm also in physical therapy to help strengthen my core muscles to help prevent more episodes. I completely know how you feel. I also can't stop crying when my back does this. Very painful! About ozone and time in a bariatric chamber. How does this help you? I'm very curious to learn more.

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I asked my rheumatologist for anti-nausea medication and it has helped so much!

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Isn't it great!??! I couldn't live without it on those bad nausia days.

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Glucosamine Chondroitin MSM by H.F.T. Supplements | Gluten Free Non GMO Vitamin D Frankincense Turmeric Curcumin Supports Flexibility & Mobility Hybrid Bone and Joint Supplement, 90 Capsules amazon.com/dp/B079YZX743/re...

Try this my family members take it for back issues, I unfortunately can’t as I am allergic to shellfish.

They all saw results with back and other symptoms. They never miss a dose!!

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Maybe check the medication you’re on... I had horrible joint pain and body aches while on azathioprine... I’m still baffled by that reaction, I was in so much pain I was convinced I somehow injured myself.

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I quit taking Otezla. Couldn’t handle the side effects.

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Hi Lori,

Have you tried remicade? I am just about to get the last loading dose before going on the normal infusions. It helps with ulcers but so far has not helped much with bone and joint pain. As far as my back, I would have such severe pain that crazy things started happening. A couple times, I wet my pants and fell on the floor with no warning! I had L5S1 fused and bolted together and it has worked really well. The rest of my spine is really bad, which my elderly rheumatologist ribs me about as we hobble down the hall together. I get a lot of bone pain from the elbows down and from the knees down. Electrical shock buzzing in hands and feet. Also have chronic migraine and neck pain. When it all gangs up on me at once, I will take a narcotic pain pill. I am on gabapentin and Cymbalta for pain and the two drugs do help for the continuous pain - until pain gets above a certain threshold. Just started alpha-lipoid acid (grocery or nutrition shop) and I can’t really tell any difference yet. My left foot is swollen and painful, so I have been sort of limping and dragging it along. Steroid shots into the foot joints seem to help somewhat. Psoriatic arthritis and Behçet’s together are no fun. Scared to death of losing medical coverage. My company has been wonderful about letting me take medical leave with full benefits, but I will have to return to work pretty soon or risk losing coverage. Starting to get really nervous about what the future holds since our woefully incompetent American government is steadily whittling away at our chances for dependable medical coverage. If we are incapacitated and unable to work, they’d rather not be bothered with the expense. If you’re in the States and are getting chronic migraines, you can get the new 1x/month shots free for a year, by the way. Neurologists have the paperwork explaining how it works. I have found that the shots do seem to help cut the headaches by about half.

Dave

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Haven’t tried Remicade. I had issues with incontinence before my lower back fusion, and that appears to be an issue again, except I just can’t empty my bladder. I think it’s caused by the anti-nausea med I was on. It causes severe constipation and that causes issues when I have to pee. That and inflammation. My back is a bloody nightmare too. I’m going to check into getting shots for migraines. That’s a good idea especially if I can get them free!

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Our government is at all out war to cut off our benefits. And then on top of that they want to stop opioids altogether, which I need. It’s crazy making when you have an idiot in the whitehouse!

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