Hi there, I can only reply to Humira and Colchicine. I have had both. Colchicine worked for me for a while about 6 months when the upset tummy just got to bad.
With Humira I am on a similar Biological (Rituximab) and the only problem I have is that I am very immuno compromised because of it. I had coffee at a hair salon, about 14 hours after, I had the worst upset tummy of my life, Dr sent me for a stool test, it came back positive for E-coli. I went out to a wedding function, within 24 hours I had a terrible flu, it was negative for Covid however bad enough to put me in hospital.
I literally have to live behind a mask. But I have only another 2 sessions to go according to the Professor that is treating me (A year of treatment). It will then be about 9 months for the immunity to build up by itself.
I am sorry I don't have more positive things to write about it.
Look each person reacts different to biologicals and all meds. There is a wonderful group at the bechetsuk.org in the UK the team of specialists there are amazing, and the conference they hold is very informative, they have quite a few leaflets on that website that has helped me cope with my headaches and understand the types of headaches too.
I hope you find all the answers to your questions. Wishing you well
Thanks for responding and sharing your experience with colchicine and rituximab.
Sad but factual - the biologicals that we use to address our diseases do have a long list of side effects.
One point on rituximab internet info attracted my attention in particular- it said that rituximab is resorted to after an inadequate response to one or more anti-TNF-alpha therapy. Was that the case with you?
I also live behind a mask. I’d rather wear one than catch some undesirables hovering around. It’s amazing how a little piece of cloth can make a difference. My only point of discomfort comes from the fact that the rest of the world is seriously bent on getting back to normal post Covid. Well, if I did not have immune issues, I would likely be on the “ditch the mask” side of life too.
People with serious health challenges like us do tend to have a rather short list of positives to write about. But it’s essential that we stay focused on the bright side and be very grateful for it. For 2023, I had 5 “vertigo crisis”, each spanning an average of 2 months ( not much vertigo free days left in a year...). The vertigo comes and goes without rhyme nor reason. When I wake up in the morning and manage to get out of bed without the world spinning around me, I feel like I am on top of the world! It’s suddenly boogie wonderland time! I hope 2024 is better …
I have been experiencing really bad headaches. The headaches lessened after I regularly performed TMJ physiotherapy exercises - youtube videos of Dr Adam Fields. On top of headache relief, I can also now eat more “regular” foods. I am so grateful for his free videos -what’s more it’s so convenient, no need to go to physiotherapist.
Good Day to you Magician, I am doing well thank you. I wanted to ask if you have ever heard of the following: Ménière's disease. My Sister in law suffers from this and I must say it is worth looking into it. The vertigo that you describe sounds an awful lot like what she suffers from, it only struck me when I got off the phone with her this morning. Other than that it could me medical related where it could be side effects to your treatment. There are so many listed side effects and it is like rolling a dice really.
As far as the Biologicals are concerned in my treatment, well I think the Professor that treats men and the Neurologist that is now my second Specialist made a decision amongst themselves that it would be the best one as I have a Neuro Bechet's. I had a stroke that affected my T2, T3, T4 and left me with paralysis on the one side and severe neuropathy from the ribs down into my toes on the opposite side. The best way to describe it would be with the following link, however my damage is permanent. ncbi.nlm.nih.gov/books/NBK5....
As far as the mask is concerned, I try and get into nature as much as possible. Even if it means my back yard. Whether it's freezing or not I potter around in my spare time and try grow something. A short walk to the local shop I do not wear a mask however I do wear it going in. I try getting out of the town and walk a bit too the more I do that without a mask the better for my emotional wellbeing. Try and push your personal boundaries with that. When the shops are not too busy try going in without a mask on, we do have to start building up a resistance to bugs just like tiny little tods again. But not to the extreme LOL I would never do it on Boxing day LOL
I must applaud you on sticking with youtube physio, sometimes they are the best to keep you motivated. After I had my stroke I felt so much pressure from everyone that I asked to be left alone for a while and only focused on two channels, these two ladies made my road to recovery increase double time:
They where lifesavers in my humble opinion. I never felt judged or under pressure and could go and take a nap when feeling dizzy or tired. I am going to share one that is specific on vertigo and balance as I was affected with vertigo caused by the stroke for more than a year.
I hope you are finding this helpful and keep rested, don't overtax your body when you need to take time for yourself. Stress causes more harm than anything else, take care
Thank you very much for the information that you so generously shared.
The vertigo video is great! It’s way better than the physiotherapy move that the ENT provided me.
MENIEREs:
I am sorry to hear of your sister in law’s health issue. But I must shamelessly add that it inspired me to ask you: would it be possible for you to refer the following questions to your sister in law (I totally understand if you would decline - health issues come with loads of sensitivities):
1. what kind of medical specialist definitively diagnosed her case as Meniere?
My vestibular disorder was diagnosed by an ENT doctor. However, he did not investigate the source of the vestibular disorder.
He did not say that I have Meniere. But he prescribed me TEVA BETAHISTINE, which is used for Meniere.
2. Did/does your sister in law meet all the criteria for Meniere?
I do not have the symptoms of Meniere that are enumerated by MAYO Clinic - “a Meniere's disease diagnosis needs to include:
Two or more vertigo attacks, each lasting 20 minutes to 12 hours, or up to 24 hours.
Hearing loss proved by a hearing test.
Tinnitus or a feeling of fullness or pressure in the ear.”
(FYI - I do not meet all the diagnostic criteria for Behcet but being treated as Behcet).
3. What medication does your sister in law take for Meniere?
I am very sorry to hear of your stroke and the permanent damage. I hope you are able to access to all the care that you need.
It was interesting to read up on Brown-Séquard syndrome. Did you have BS syndrome ? Was the stroke related to Behcet? I admire your coping capacity and resilience. Keep it up!!!
Thanks for the reminder that a managed exposure to the micro biome around us would be beneficial. I tend to be “lazy” and just keep away from the “pre-Covid normal” - though very aware that one could not stay away forever.
Keep safe,
Whenever a negativity page crops up in your life, keep turning the page until you see a page brimming with hope and joy!!
All the very best
PS - we can private message if that would be more comfortable
Sorry for the late reply. My Sister in-law lives and works as the Nurse Supervisor on this great reserve, that use to belong to the Oppenheimers called Tswalu Kalahari Reserve tswalu.com/ they are very remote and had to go to Johannesburg for a full work-up with an ENT at Donald Gordan Medical School that is one of the top medical facilities in South Africa as they also have all the Professors from Wits University.
I unfortunately don't know what she is using currently to cope. I know that in the beginning she was completely man down, in bed and not able to even walk to the kitchen for a cuppa.
I know that when I asked the Dr said she told me that it was caused by crystals. Does this make any sense to you? I have no knowledge at all about this disease.
Thank you for the well wishes, I got a stroke that was caused by vasculitis according to the Neurologist. Vasculitis has been something I always had and only made more aware of it since the Bechet's diagnosis.
The damage that was left by the stroke is mimicking Brown-Séquard as I have paralysis on the one side and neuropathy on the other.
I agree we do tend to get lazy, but I love the turning the page until we find the one's brimming with joy 😁
Oh yes how do we do PM I'm all in how do we do that?
I just logged back on to Health Unlocked after months away from it. Prompted by them contacting me via email , and I have my Behçet’s hospital review this week so am in the zone again too think about my illness
Behçet’s disease is a “vasculitis”, which literally means inflammation of the blood vessels.
One way the medics divide the different type of vasculitis is according to the size of the blood vessels affected so:
2. Medium -sized blood vessels inflamed eg Kawasaki disease
3. Small-sized blood vessels inflamed eg Henoch–Schönlein purpura (HSP), also known as IgA vasculitis
4. Variable vessel vasculitis = small and medium and large blood vessels are inflamed in the body eg Behçet’s disease.
Which basically explains why Behçet’s can be similar to some other conditions , but also can present with the weird and wonderful.
For me I have been pretty well recently with my Humira injections every 2 weeks. I know I am fortunate to be able to work part-time, look after the children too, travel overseas a bit more since Covid restrictions lifted enjoy cycling.
But this past week I woke one day feeling like an old Granny as every single joint ached so much I could barely move. No obvious triggers. I rested. The next day I was fine. That has happened before with joint pain when I could not even weight eat to walk so got an x day. The next day the inflammation moved to a different joint eg fingers
So I picture it as a network of miles of blood vessels around my body and if just a little patch gets inflamed, then that causes my Behçet’s symptoms. That could be a tiny area in the joint or the bowel or even the ear. It used to be an infection would trigger my ulcers and now it’s more random. Steroid will ramped down that inflammation for me.
Hope my little picture of vasculitis can help you in your Bechet’s journey.
Thank you very much for taking the time to respond. The “ visual” and the information regarding the different types of vasculitis are very helpful.
Your experiences about rest and waking up feeling like granny fully resonate with me.
I am turning 65 this year and through the years, I have been struggling with the balancing act between much- needed-exercise and exercise-induced Behcet symptoms.
What I am currently doing is this: immediately after a workout, I rest in bed. Usually I would fall asleep. Usually, I would wake up feeling good. Occasionally despite the rest my body would still feel tired - that would be a signal for me to stay away from exercise for a few days. Seems to be working, so far…
Unexpected réalisation yesterday: I had breakfast and ignored the nevertheless persistent feeling of hunger.
I happily attended to many chores - not back breaking - but took more than 2 hours.
After finishing up, I realised that I was having headaches and decided to eat. It took me one second to finish off my food.
I then lied/layed down as usual.
I started feeling pain in my feet, calves, thighs and arms - not different to what I was categozing as Behcet pains.
Realised I was still hungry - got up and gobbled more food, more liquids more food, more food.
When my tummy finally felt happy, my headache,and body pains disappeared!
So now, I suspect that some of my heaaches and body pains could be due to hunger that I was not aware of. There have been many occasions that I become aware that I was hungry only after I eat.
PS - Apologies for late response - I had one of my screen-time related headaches which I suspect eventually leads to vertigo if I continue exposure to screen. Another of my health issues that no doctor, not even ophthalmologist has managed to decipher.
Thanks again,
Wishing you the very best,
Wishing your Behcet review this week will bring you good news.
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