Behcet's Disease Support Group
Behcet's disease (also known as Adamantiades-Behcet's disease), is a chronic condition due to disturbances in the body's immune system. This system, which normally protects the body against infections by producing controlled inflammation, becomes overactive and produces unpredictable outbreaks of exaggerated inflammation. This extra inflammation affects blood vessels.
Hello All,
Wondering if any others are being treated with mehotrexate and prednisolone. The prednislone to be tapered of very soon. it has been a full year of various different doses of prednilsolone. The highest at 150 and the lowest at 2. At 150 l thought the heart palpatation"s would kill me before the disease had a chance to. Lol
Just asking anyone out there what there dosage of this methotrexate is at. Mine is at 20 or two by ten tablets once a week.
I have asked my rheumy if this can be lowered and she has said a very definite no. The side affects are hard at times. Still have a permanent sore throat, dry mouth and looking for water like a camel. An insatiable thirst that cannot be satisfied.
Hope a few opinions will come my way.
Thanks
Lorna.k.c
Wondering if any others are being treated with mehotrexate and prednisolone. The prednislone to be tapered of very soon. it has been a full year of various different doses of prednilsolone. The highest at 150 and the lowest at 2. At 150 l thought the heart palpatation"s would kill me before the disease had a chance to. Lol
Just asking anyone out there what there dosage of this methotrexate is at. Mine is at 20 or two by ten tablets once a week.
I have asked my rheumy if this can be lowered and she has said a very definite no. The side affects are hard at times. Still have a permanent sore throat, dry mouth and looking for water like a camel. An insatiable thirst that cannot be satisfied.
Hope a few opinions will come my way.
Thanks
Lorna.k.c
The thirst is there but I had to drink a sweet drink to feel any relief and I did drink tons of it with water.
I am still doing this and not on MTX?
So, I do not know if it was the MTX or not? Maybe it is the class of medicines.
There is a spray called Rain that helps and eating fruit like melons.
I do not know the answer but I have the same thing going on.
Let me know what works if you find out but I need the water not the sugar.
ARIZONA
Have spoken to my rheumy on the phone. Will see her in person next week. She says a very firm and non negotiable no to reducing the dosage. We will negotiate further face the face. However my arguments are not strong enough for her at the moment.
Still looking for water all the time........
I think maybe this type of medication commonly caused severe thirst. Suppose l will have to learn to live with it. It is keeping me in remission and have not had any mouth ulcers since stopping dapsone and colchicine.
By the way if you are having eye problems and l think this may be many.. If you control scroll on your computer you can make the letters as big or as small as you need. I have just been cleared by my opththamologist to go to the optometrist to get the new reading glasses so badly need. The control scroll has been a life safer for homework and all thing computer. Studying accounting and seeing those numbers correctly is vital!!!!! Saves many hours looking for thing that do not want to balance.
Will look for the rain in the chemist thanks Arizona. Hope it has the same name in Australia.
Lorna.k.c
But you might just tell her you are having an odd allergic reaction and need to try a different medicine. This is going on to long. Has she ran out of medicines to try> Do you have Neuro-Behcets? I never felt the odd feelings other than thirsty but I think that might be Prednisone. Could it be Prednisone...do not stop any medicine suddenly or without your doctors permission.
I am considered.
ARIZONA
Had my appointment with rheumy and she will not allow a lower dose. She fears in my case lowering the medication could bring back symptoms.
She has allowed me to go down to 1mg of predsolone. This is the lowest dose l have ever had and so far its okay. However my knees were in a bad way yesterday and thought l would have to go home sick from work. Today was better.
To answer you arizona, this is indeed my last resort medication. Tried dapsone and colchicine and they affected my liver to the point where l had to come of them.
Still very thirsty, but my mouth is not as dry and sore throat only sometimes.
I also take folic acid.
It is getting easier and the fear of having the never ending joint pain and those horrid ulcers back keeps me going. Still drinking like camel however.
Thanks