Hi, this is my first post on here and was looking for other people’s views. I have been diagnosed with BD for 3 1/2 years now and the hep and treatment I got at the beginning was second to none.
I had mouth ulcers for about 4 years previous and genatal ulcers but it wasn’t until I woke up one morning and had lost the sight in one of my eyes that they finally diagnosed me (after many tests).
I was under a consultant in immunology and was almost like a local celebrity in the hospital. however I have since been moved to rheumatology and at my last check up we’re trying to ask me why it is I think I have BD.
I’m currently taking azathioprine, predisalone, coltrazine (excuse the spelling) and many others. I was taking 80mg of predisalone for over 18 months which they have since reduced. I also had a years worth of inflixamb.
I’m desperate to get my medication down as I don’t like the thought of what it is doing to my insides.
Has anyone tried or are currently doing anything else to reduce their medication? I have been tempted to just slowly take myself of the meds as my consultant now doesn’t seem to bothered about it any more.
Any help is great fully revived
Many thanks
Rob
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Robbojenney
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I’ve just started Imuran 3wks and feeling a little less fatigued already so hoping I feel more benefits as I continue. I’m having a big of tummy pain and loose bowels so interested to know what your side effects were that meant to should stop taking.
I was diagnosed with « probable bechet » after I almost lost sight in one eye in 2007. My eye issue was preceded by almost 25 years of unexplained mouth ulcers. The « probable bechet » was because I never had genital ulcers .
In 2007, I was on high dose of prednisone, followed by immurek and colchicine. By 2011, my immunologist switched me to Humira, in the hope that it would resolve my eye inflammation. My eye inflammation is still there, but comparatively better than it was in 2007.
I would not change medication without medical advice. What does your eye specialist say?
Hello!! I am still unconfirmed but being treated as Behçets due to recurring oral & genital ulcers for a few years then last year developed erythema nodosum and severe joint pain, fatigue. They would like to biopsy an ulcer before confirming Behçets however since being on colchicine since January ive had no further ulcers so far. I’ve just commenced Azathioprine (Imuran) 3wks and am beginning to feel less fatigued so hoping this continues although side effects are some tummy pain and loose motions. I’ve been on varying doses of oral prednisolone for almost 1yr.
Perhaps a biopsy of an ulcer would give you a definitive diagnosis?
I think since your Rheumatologists are ignorant of Behcet's it is time to educate them and I would suggest you gather together all the relevant fact sheets from the Behcet's collection and literally give it them to read, but first highlight with a marker everything that you have and have been diagnosed with and tell them this might help them understand why you have been given this diagnosis.
2nd I would write a nice letter to your consultant in immunology who clearly has a grasp of Behcet's and explain you are having great difficultly explaining medically why you have been given a diagnosis of Behcet's 3 1/2 years ago and can they please help you express this to Rheumatology.
3rd I would suggest you request from the hospital treating you for a copy of all your medical records from prior to your diagnosis and ask them to include all clinical letter and I would go as far as suggesting you get copies of all imaging that has been carried out too. I have copies of all my medical records and do not leave an appointment without requesting a copy of my clinical letter.
When I was diagnosed in 2015 I had been diagnosed with EDS by one Rheumatologist, which I knew I had but not that is was given a name and this had been affecting my body all of my life... anyway, the Rheumatologist could not give any reasoning for oral and genital ulcers that I have been suffering with for well over 40 years... just said they were nothing to do with EDS. Literally 12 months later April 2016 I was referred to another Rheumatologist who worked in the same department to the one I had seen the year before and straight away this new Rheumatologist favored a diagnosis of Behcet's based upon clinical history I had noted and photographs. A further 9 months later I was referred to another Rheumatologist with a specialty in soft tissue disorders and she has by far a greater understanding of my condition, the other 2 Rheumatologists specialised more in joints issues rather than soft tissue disorders and it was only when I had gone through the following sequence of medication which was not working and I asked to be put on Azathioprine that I was then referred to my current Rheumatologist which I am thankful of. So find out what your consultant Rheumatologist specialises in, call the department and ask, it could be key.
My experience was first Colchicine which helped with my ulcers but nothing else, I had to be taken off it due to toxic reaction, left for 3 months with no medication then put on to Prednisolone but this did not seem to help and after stopping I was left a further 3 months with no medication, so now after 8 months on Azathioprine, the Azathioprine appears to have calmed reduced the feeling that my entire body feels as though I have a rampaging infection throughout it, it has helped quell the frquency of my ulcers, although my oral ulcers now appear to be smaller but deeper set and take longer to get without. A couple of weeks ago for the first time in a very long time I got 2 genital ulcers which was a shocker and 5 oral ulcers as well as a pubic cyst lesion. I had been given soluble Prednisolone mouthwash (not to swallow fluid) in January 2019 but not had no need to use this up until this last episode, one of the ulcers would not go with gel, and I was amazed how much using this mouthwash for a few days has not only eased the ulcers but reduced the burning sensation in the rest of my mouth and tongue, in fact I had recently mentioned to my dentist, prior to trying soluble Prednisolone mouthwash, just how sensitive the base of all my back teeth have been for quite a while, and yet after using the soluble Prednisolone mouthwash this has improved, I have now stopped using the soluble Prednisolone mouthwash, ulcers have gone, and my mouth and tongue has started to feel that burning sensation again so I will be investigating this again with my rheumatologist at my next appointment and seeing if I should be using soluble Prednisolone mouthwash once a day as a maintenance dose.
The Azathioprine has done nothing for my joint and muscle pain, or the pressure in my sinus, nose, forehead and eyes, seeing ENT this week and Neurology at the end of the month. The fatigue I was having is still with me and after playing around with the timing of Azathioprine I have now gone back to once a day at 08:00hrs and managing to keep myself awake but my ankle and feet are creating major issues at night in bed...
As far as you looking at alternatives and looking to reduce your medication this really should be discussed with your consultant and your GP, if you feel this is something you want to try and then tell them this and let them tell you why it is not such as good idea or they can support you and advise that you will be monitored. I was put on a drug 2006 which I took for 9 years and all the time they just wanted to keep increasing it when I complained it was doing nothing for my joints or body, this was prior to my Behcet's and EDS diagnosis, I decided I was coming off it and discussed this with my GP who was happy for me to try this, it took me 3 months to come off the drug and a further 3 months to feel no affects from the withdrawal, the GP advised me the medication was in every cell in my body and this was the reason it had taken 6 months to get rid of the withdrawal symptoms.
Just remember this if you want to stop taking Azathioprine and possibly the Prednisolone, having been taken off Azathioprine immediately in September last year for 5 days my body went into a horrendous flare which was with me for weeks, they took me off it because my blood test results came back with low white blood cell count and low neutrophils, the only thing I had done was 3 days earlier I had a brain MRI with contrast, since going back on Azathioprine I have not had the same white blood cell count and neutrophils issues but have had issues with red blood cell count on one occasion and platelets count of 3 separate occasions but not enough for them to contemplate taking me off Azathioprine, it is the neutrophils that are the issue apparently with Azathioprine.
Other things I have done since my diagnosis is change my diet by removing refined carbohydrates, which resulted in a loss a couple of stone, increased my vitamin C and started taking magnesium to help with muscle cramps in my calves at night which has helped, although not the ankle and feet pain...
I definitely agree that you should contact your previous immunologist about the Rheumatologist doubts and ask if you could have a follow up appointment with them to discuss your medication concerns.
It would also be a good idea to understand where you Rheumatologist is coming from with their opinion. Finding out their specialism ( you can usually do this by looking at their Biography on your hospital website) would be helpful , but just asking , why don't you think I have Behcets and what do you think it is instead is a good start.
Whatever their opinion , they are not filling you with confidence after many years of solid treatment so you are within your rights to ask for a second opinion and the option to see another Rheumatologist might be better for you.
You may or may not need to adjust your medication. Some Consultants do favour tapering on drugs to see if the symptoms return , but because you have had sight issues that may not be an option for you. It does seem overwhelming to be on alot of drugs , especially if you suffer side effects or feel any anxiety about having blood tests to keep an eye on your body functions.
Yet , the alternative , like the potential loss of sight , or a return to constant pain and recurrent sores is far worse. You have a chronic condition with no cure , just treatment , so you do need the drugs , even if you can manage to take less of them when your condition is stable to be well enough to have quality of life.
Although these drugs help with pain , that isn't their only job , they do it by controlling symptoms and inflammation , so it's not the same as someone who is simply on painkillers or sleeping drugs. But any changes need to be done based on discussion between you and a Consultant with knowledge of your disease and in whom you can trust. Not with someone that fills you with self doubt and reduced confidence in your treatment and it's outcomes.
Change the doc , and start any adjustments from a more stable place , you will feel alot better.
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In desperate need of help and advice about Behcet's.
Newly diagnosed and very confused 
All advice welcome and needed!
International referral to COE advice please
Need advice please...
