So I had my first infusion treatment last week and it was no where near as bad as I had worked it up to be in my mind to be. I have been taken off the Humira and now I am doing Orencia via infusion every 2 weeks until May then it goes to once a month. My Doc says it will take 4-6 infusions before I start to feel better but I could actually tell a small difference even after my first. I have also added Vitamin D and Biotin to my ever growing list of meds & vitamins. Someone suggested Biotin to me because I am having some issues with hair loss and my hair is becoming very brittle. My hair loss was very minimal and had started to taper off until sunday morning I woke up and while brushing my hair when getting ready for work a big clump of it fell out and I fell apart. Thank God my boyfriend is amazing and pretended not to notice the small but visible bald spot on the left side of my head which thankfully could be covered by throwing my hair into a pony tail!
This brings me to my questions....My current meds are MTX, Orencia, Folic acid, Vitamin D, and Biotin (the orencia, vitamin D and biotin are all new additions) I of course have started to lose my hair as you know from the story above but can anyone provide any feedback on what I can expect as far as how long this is going to go on or how much hair I should expect to lose. Thankfully I was blessed with very thick, naturally curly hair so losing some hair is not a big deal but you know that saying you dont know what you have until its gone? Well I am understanding that now more than ever! I always hated my curly thick hair eventhough everyone around me always said how lucky I was to have it. Now that I am faced with losing it I am terrified! Any insight anyone can offer as to what I should expect I would really appreciate it or if anyone has found anything that helped with this issue other than Biotin let me know.
The other thing I am noticing lately is I am having very vivid and crazy dreams and have woken up in a panic twice in the last week due to nightmares that were so vivid and seemed so real it took a minute for my boyfriend to convince me I was safe at home in our bed and what had just happened in my nightmare didnt in fact happen. Has anyone else had experience with crazy dreams/nightmares? I dont read the side effects of the meds I am on so I dont convince myself I am having side effects I am not really having so I dont know if this is a side effect of meds or just my subconcious reacting to stress I have been under lately. I have to admit the crazy dreams I dont mind so much because some of them have been quite entertaining but the nightmares....well lets just say I havent had them since I was a kid and I would have preferred to have kept it that way.
Thats all I have for now but if anyone can offer any feedback on anything I have mentioned above I would greatly appreciate it!!
Thanks!
So glad to hear that you can already feel the difference with Orencia - I hope it continues and get even better!
In terms of the dreams, it could be a reaction to stress or if a side effect - and I didn't find crazy dreams listed as a side effect of any of your drugs - it may take a while for your body and mind to adjust to the new situation and once you do, the dreams will simmer down. However, if it continues or gets worse, talk to your doctor to see that something they can do to help you.. As far as a hair loss goes, I've heard of people who on methotrexate who have lost just a little hair, others who have lost quite a bit and others who haven't lost any hair at all. Talk to your doctor about whether the folic acid you take with your methotrexate should be increased. You may also want to look into vitamin B12, either as tablet supplements or injections, as it can help your hair.
Good luck! Please let us know how it goes?