I honestly respect those who say no to a medicine or treatment, I would think you may want to give your liver a period of time to recover from the medicine, so I understand your reluctance to start another medicine right away. I honestly believe we know our own bodies if we listen to it.
I said No to Vioxx a few years ago and the doctor back then was upset, but I told him I had tried it and I became very ill. It was taken off the market the next week after I said NO to him.
I was so glad I listened to my body and he never questioned me again when I did say no.
To balance this statement, one must try a medicine at times they do not want to and not be afraid to take a medicine because of someone else's experience. But if it is a medicine that has warnings not to take it where it could cause damage to you or if you have damage from another medicine then waiting is very reasonable due to your condition.
I understand waiting until one is comfortable and to make sure your liver is in good shape before taking another medicine. I think one should see a Specialist if your blood test shows any damage to your liver to at least know to what extent and if there should be a concern.
My kidneys are damaged they are only working at 39 percent, the problem is they do not know why? But I looked back at my blood tests and it showed the damage began about a year ago. I know wonder why nobody told me my kidneys were slowly being damaged, it is hard to read the damage to kidneys and many doctors do not run eGFR test anyways. I do think it is because they were treating my DVT/PE which was life threatening at the time, so I wonder if they considered it minor at the time. But now there is not any way to repair my kidneys ever.
I would have liked to have known and had the opportunity to make this decision myself if I would have had a kidney specialist decide if I needed treatment or find the cause before it became this bad.
It could be from the Behcets, but it is rare for Behcets to affect the kidneys. Although, I am getting different answers from my doctors and then they think has caused the kidney damage to advance to this point. At this point I am going through tests to find an answer as to why I do have so much damage and what the cause is so we can hopefully stop them from getting worse.There is no way to repair them. So, I think every organ affected is important, as it can be mild and in less than a year be bad.
Knowledge is power and I found knowing what I am taking and why has helped me through battling this disease. Sometimes knowing does not change anything, as there are some aspects of this disease or any disease that nobody can control.
If it was me, I would like to first know if there is damage to my liver and if I could prevent damage to my liver by not taking additional medicine at this point.If I did not take any additional medicine how it would affect me and could I try not taking more medicine for awhile to see how I could do without it. I assume you are already on medicines that can affect your liver and if you can do well without adding another pill without causing a major flare, I think you are making a good decision.
Good luck and express your concern to try to wait awhile for your liver to not be further stressed by more medicine. I think that is reasonable and if you get worse and your Behcets symptoms let your doctor know you would call them know right away for treatment. (just an idea?)
I hope this answers your question some...I pray you feel better and that you do well with your Behcets.You are a strong person and wise.

Hi there,
hopefully you are all doing well. Form my experience, once I said no to blood thinner and I ended up in the hospital with a DVT (although I am an athlete with an excellent shape). However, I am sure that I will say no to corticosteroids from now on; I know that they are doctors number 1 choice to control inflammation, but for me, they made me be one step away from committing suicide, apart from the fact that they didnt really help controlling my uveitis. So, I guess that saying no to a treatment should be only in very extreme cases, like when a medicine will make you so depressed that you want to kill yourself or something. After all, what is the use of anything if your dead :p. Anyway, I guess that one should really really research and compare the risks and benefits, consult a doctor that they trust, and then decide whether to say no or yes to a treatment.

All the best :)

Sorry to hear about the DVT, I had such pain with mine and ended up with a Pulmonary Embolism. They did not catch it until it was so bad and my leg was swollen red, bluish purple and I was in tears the skin was so tight from the swelling. I was put in the hospital right away. It has been a little over the year and I just stopped getting Doppler Ultrasounds every 3 months and I just stopped Coumadin finally. (now they have a new medicine for it)
How did they know you had DVT and what was the reason for not wanting the medicine, did they know it was thrombosis? If so, how did they know? Since mine was missed until it was so bad, I would like to know the early signs. I almost died from the PE. It was a horrible experience.
You are right about Prednisone and psychosis, as it is a side effect for some people and they cannot take Prednisone or other Steroids. I am sure any doctor would not want you to take it knowing it affected you in this mannerism. It can happen to others, I am glad you mentioned it.
It is good for all of us to watch for these types of side effects.
Neurontin and Lyrica can also have this same effect on some people. (primarily young adults and teens) My daughter tried to commit suicide on it. That was 9 years ago on Neurontin and before they new it was a side effect. So, we thought she had problems and did not know it was the medicine.
I am glad you shared and I wish you the best.

I have tried to stop medication several times because I really beleived it was hurting more than helping. It is so hard to tell! I never actually feel well, just shades of not so bad , bad, worse. my main drug has been steroids; I am 60 mgs at this time. It has caused diabetes, osteoporosis, even though I eat gluten and sugar free and perform yoga and walking daily (when I can get out of bed)
I have had 3 dosese of Remicade and was able to get down to 15 mgs of prednisone. 4 weeks after my last treatment I had a bad flare. they moved up the remicade schedule, but then I got an infection, so I am not able to take it until the infection is gone. In this case, it is cut and dried; cant take the remicade with an infection.
weighing the risks and the benefits can be mind-boggling, especially on your own. Livers are incredibly adaptable organs, but once they are damaged, they cant be replaced. however, you can have perfectly fine liver function with only 20 percent of a liver. it sounds like your liver function is low right now but you are unsure if there is also permanent damage and would like to wait to see if there is before you submit it to more treatment. makes sense to me, but if there is a serious risk of losing your eyesight you may want to give you and your doc a limit such as "if my eye worsens for X amount of time, or if my eye worsens to where I cannot perform X task, etc" then I will get the next treatment. that way you are empowered. noone is ever always right, but we must always strive to do what seems right. and wondering if it is worth it, or if you can do it is part of the struggle. Keep up the good fight dear, and know that you will make it whereever you are going.

Have my appointment with rheumy this Friday the 19 August She has my blood results from last week to see how my liver is going. She also has my bone density test results and MRI scan from from my right knee. So l have a lot of information to go through with her.
Yes weighing up the pros is very difficult without a medical degree!
I also have to consider my appointment with orthopedic surgeon in October to talk about my next knee replacement. Damage has been very severe from this disease. He may either be very hesitant or refuse completely to do this major surgery whilst taking imuran.
However l cannot remain on prednislolone forever. I have been on this evil drug since Feb this year at various doses, the lowest was 3 and ended up with mouth ulcers the day after the dose went to 3. Could not eat hard food again as the ulcers were painful. So back up to 5 again.
So what to do??
Thank you all for your replies and thoughts please keep
them coming. Still have 3 days till appointment. Also Australia is a day ahead of America, Canada.

Hi there,
I have just been compelled to sign up on this support group to reply to this discussion thread of yours....I've had Behcets for 10 years now having been diagnosed at University at the age of 20. I've seen a rheumatologist every 6 months since then and he became increasingly frustrated with me for refusing treatment - I always found some excuse not to take it, it made me sicker and I wanted a family but after two pregnancies and three beautiful little girls I still couldn't put myself first and admit I was ill and needed treatment. In May this year I was rushed to hospital with suspected meningitis which turned out to be severe neuro-behcets. The lesion in my spine was so bad the consultants told me I would probably never walk again, devastating for an active mother of three. i started cyclophosphamide orally and although it has some side effects I've learnt to walk again and am gradually returning to. what I hope will eventually be, normal. Anyway I just wanted to say - don't make my mistake and think this disease can go untreated without ill-effects.Try to stick with it until you find a treatment that works for you- there are lots out there and the dosages can be amended to control the side effects. Don't give up looking for the right maintenance regime as this can often make things worse.
Hugs and luck for your appointment
Lizzy

Hello. My father had Behcets, and he and my mother decided that he would not take any meds for his condition. They both got really scared after my mother researched the side affects of the meds.

He seemed fine for several years and then he woke up one morning seeing double. The doctors at UCLA said that his stroke was directly related to his Behcets not being managed with meds. They said he could have avoided the stroke had he been on the appropriate meds.

They are both gone now, but I wonder sometimes how things would have gone if they had opted for medical management? Maybe both of their quality of life would have been so much better...

I am very sorry to hear about your Father and the loss of your Mother There are so many options for medicines I am surprised he was not presented with the least evasive option to start with to alleviate fear.
They majority of the replies mentioned said they were on a medicine and were having a bad side effect. Then it is right to say NO if it is damaging someones organs or causing suicide thoughts. It is probably very wise to say NO then. I was scared of a few of my medicines before and said I would NEVER take them and had a Doc say take it or die...well, that is a good Doctor to tell it like it is.
Just a tool that can help others so this does not happen to anyone again is the Arthritis Foundation has complete medicine list for various diseasesand each medicine affects different areas. For example Dapsone is good for skin conditions, MTX is for joints, CellCept help internal organs...so reading on them on any site or simply learning about the medicines from any place can help one weigh the pros and cons. (medical term commonly used is risk versus benefit) None of the medicines will refer to Behcets but more are know. Behcets is rare and their as not been enough people for a lot of clinical studies in some areas, this is sad..
Stroke is associated with Neuro-Behcets and I have had one and I was promptly treated and was lucky I lived through that one. It affected my language and I could not speak the words I was thinking and could not even write. I had to relearn many things but it can quickly in some areas.. Their are times I hit a wall and cannot think of a word or I use the wrong word but my brain is thinking one word and I say another one. This is a sign my Neuro-Behcets is acting up.

Since behcet's is a clinical diagnoses, how did they determine he had Behcets? Also, I would be mad that they did not monitor his SED rate and CRP to see how high his inflammation was going to watch for things. When someone says NO yo s medicine or treatment I hope one would NOT stop seeing a doctor. Thank you for sharing and welcome to this site. You are special to take the time to tell us your story and what can happen. This disease hurts so many people that is why I want to raise awareness and I think you just did too.
I am so sorry this happened to you and you lost family members. A problem id there was not enough information on Behcets prior in many parts of the world.
I am disappointed this happened to someone! Most of us with Behcets that are under treatment, if we have to go to a new Specialist or doctor we will be told we do not have it by at least one doctor no matter how long we have been treated and they just say NO...it is not Behcets. I think others can share that this has happened to them.This is dangerous to people to be told yes you do and no you do not... it is a battle for many people,
So, do not know how they found it and I was glad to heat he was told but if he did use the medicine their is no way ti know if he would have had a stroke or not. I was on Prednisone, Arava and Plaquenil and still had a stroke. Granted I am alive but younger and it is a side effects of medicines have harmed me too, so there is their really an answer? I am GLAD you shared your family's experience.
Do you have Behcets too?
Good luck and thanks for letting us all know! Sorry men you are more prone to stroke or heart issues or something happening if not treated, but I do not know if that is true!

Hey there, sorry gor the late reply. I didn't know about the DVT till it was too late. I didn;t know what DVT was! I have never been to a hospital in my life. My leg was swollen and painful. So, at first I thought that I hurt myself while cycling or something. I saw a doctor, who was such a very careless person, who perscribed calcium supplement for me, saying that most people who work out more than an hour daily may face some dietary insufficiency and that calcium insufficiency can cause the symptoms I was having (pain, swelling . . . )! He said all of that without ordering any kind of test! After two weeks, the pain in my leg was so severe and I wasn't able to walk on my leg at all. So, I went to the hospital and they told me that I have a DVT. I really didn't kow what a DVT was! I thought that I will be released on the very same day and I called my friends and told'em that I am still coming to the christmas party. However, I stayed in the hospital for 15 days more :P.

wow! I am shocked that you survived a two-week long period without treatment! Must be in pretty good shape to give the doc the impression that you had calcium deficiency rather than DVT1 I am not a doc, but I have sent many patients to the hospital wih DVT-they are not hard to diagnose! I hope you continue to be able to exercise well.

Sslaird, thanks for the reply :). Well, I am not overweight at all. Back then I had an ideal weight with no fat at all. Although I used to smoke back then, my heart-rate and the percentage of oxygen in my blood were normal. Indeed, the oxygen in my blood was high. So, the doctor assumed that I couldn't have anything serious. But still, I think it was quite careless and unethical of him to say that I had calcium deficiency without ordering any tests! He delayed both my diagnosis and my treatment. However, I was lucky and I survived, with no PE or any vein damage.