Help

Hi , looking for some advice have been having a really bad flare for the past three weeks , doctors have put me on 60 mg of predisilone which normally works , but have not yet made a difference I take 3g of cellcept a day and 49mg of Humira fortnightly. Feeling so ill bad pain in my joints but my legs are unbearable , uveitis again!! Headache , flu feeling and just seem to sleep most of the time . If anyone got any advice would so appreciate it . Thank you to everyone and big hugs x

[Megsoph]

Hi

I am on the same medication as you apart from Humira. I had very similar flare up with flu like symptoms a little while back.It turned out to be an infection which GP prescribed antibiotics for. After a few days things started to ease off a bit.

Hope you feel better soon.

Big hugs straight back at you xxx

[Meggy7791]

Hi. I’m sorry that you are feeling so ill. I am on 40mg Humira, fortnightly, and now do not take any other immune suppressant. How long have you been taking Humira.? It does take a few weeks to kick in. Have you checked your temperature? If it is raised then you could have an infection and would need to see a doctor ASAP. I hope you feel better, soon.

[Hidden in reply to Meggy7791]

Thanks for your advice , was on infliximab for 3 months but had a lupus reaction , was on Humira for 2 months started feeling better , but there was a mixup with the Humira prescription and did not have any for six weeks , hence the flare up can just about left my head at the moment my temp is 36 so ok , just don't know what to do with myself . Thank you for your help xx

[belle623]

Hi Scruffy

I am so sorry you are having such a rough gonof it.

Have you treid Methpred? It may seem like a lateral move, but Methlypred has some effects that prednisone doesn’t and less sife effects.

Also, how about Imuran( Azothyoprine) and A biologic like your Humera or Kineret/ Rhemicade...

I really hope you find some relief soon! Hugs!!!

Ash

[Hidden in reply to belle623]

Thank you for the reply , I will ask my consultant my temperature as dropped to 34.7 today and feeling really rough , I did have 40mg of Humira yesterday , really hope something works soon . I feel so reassured on all the replys. I feel I am not on my own .

Thank you so much x

[Blearyeyed in reply to Hidden]

Has your temperature gone down below 35 and continued to be low?

A low temperature can be as serious as a high one and indicate certain types of illness and infection, low blood pressure or other circulatory or nerve issues.

Have you had your blood pressure checked since the drop in temperature?

The could be many causes for your symptoms , including kidney issues or drug reactions , but low temperature is sign of a cause for your tiredness and flu like symptoms that may be making you have a flare but are actually caused by something other than behcets.

Note down all of your new symptoms, your behcets usual pattern , the delay in your meds and I would suggest going to see your doctor or one at an out of hours hospital surgery as soon as you can.

You may actually need help for an illness that is not behcets related but is feeling like a flare up.

Let us know how you get on and wish you on the mend soon.

[Hidden in reply to Blearyeyed]

Thank you for your help , I went to the go on Wednesday and my temp was low , they upped my steroids again !! and upped my nortriptyline for the headaches , every time I get a flare my temp always drops . I do feel better today ,but exhausted and achy. Thanks for your help .

Sending everyone big hugs

So glad this site is here xx

[rooser1]

How do you feel about doing a radical diet change for 15 days?

A lot of people including myself, have had most symptoms minimalize, if not disappear over long term. I myself was able to stop all medications after five years.

Let me know if you're interested, Ill give you the details and resources if so.

[Hidden in reply to rooser1]

I am willing to try anything at all , I find the people who suffer from this disease give you the best advice . So I'm more than willing to give the diet ago . Xx

[rooser1 in reply to Hidden]

So I came across diet change from when I was suffering from severe thrush for years; I was going through the worse flare I ever had had in my life (I always get meningitis, the arthritis, the oral and genital ulcers and skin sores) this time it was coupled with sepsis and the worst flare of thrush too. So I was on about 15 diff meds, losing weight, absolutely miserable...months on end, new infection every week sort of deal. Non stop crying from the hopelessness and pain every day. As a former pharmaceutical research scientist, I decided to turn to homeopathic medicines and lifestyle change as I had exhausted all other traditional routes at this point and was not getting any better. So I switched to gentian violet and a candida diet. I felt a difference in 10 days. This diet was the ultimate turning point for my ENTIRE life. I did it religiously for 9 months. Was it hard? Yes. Did I cry because I wanted certain foods? Yes. But it healed me, and on to further research, here's why:

It cut all sugars and refined carbohydrates, something that I still stick to today (5 years later). Ive worked some complex, whole carbs(sweet potatoes, beans, wild rice) in over the past 2 years...but I am still 100% sucrose free.

So what does this mean?

Drink only water. Eat only: Meat, Fats, vegetables. Anti inflammatory herbs. We can work in fruits later. Cut all processed foods, anything in a bag or box, usually filled with sugars. If you do eat ready made vegetables etc, check to see that they have as close to 0 grams of added sugar. Do your own research into what foods are allowed on candida (very restrictive) compared to Keto and Low carb. Use herbs.

some sample meal ideas:

eggs with oregano or garlic, cheese even (if you can tolerate dairy) with bacon or sausage (not maple ones)

High quality deli lunch meat (again look for sugars) with cheese, rolled up, dipped in mayo or mustard. salads with full fat dressing.

cheese or nuts for snacks

any meat or fish you want for dinner, use mayo and herbs like rosemary on top. its delicious trust me, paired with green beans, cheesy spinach, broccolli, asapargus, avocado, mushrooms etc.

i post all my foods on instagram under Bitterbiologist. I also have replied in other details to others on here under my posts, so click on my profile name to see my other responses.

Ive gotten pretty good feedback from those who stuck with it. Specifically, one mother whose 10 year old was so fatigued and riddled with ulcers, she did this diet plus eliminated dairy and at the end of one month, he was running around ulcer free. In my past desperation- if someone would have told me this simple (easier said than done I know) change, I would have done it earlier.

[Hidden in reply to rooser1]

Thank you for the advice , I definitely am going to give it a go , I have been in bed for 10 days no energy at all and severe joint pain , uveitis and ulcers . I do not eat meat , but do eat fish I have cut out white flour and sugar but I think I need to be more radical , I will update you on my progress. Thanking you for all your time and kindness.

Xxx

[rooser1 in reply to Hidden]

Fish and shrimp and crab work just fine! Excellent sources Of omega 3. It is very strict with regards to sugar but I promise once you feel good- you won’t go back.