Hi guys, I have not visited for a while, mainly due to losing interest for a while after so many left, I do pop in from time to time though to see how you are all travelling!
Just thought I would update you on whats been happening. I had elevated liver enzymes about 6 months ago and had to stop MTX, that is one of the reasons I have not posted too, my energy levels have been zero, even worse since stopping MTX, so it obviously works somehow on me even though some days I would swear it does nothing. I have had two cortisone shots in my shoulder just from changing sheets on my boys beds, anything I do, I pay for it tenfold later. I went to see a new rheumy last Thusday and combined it with an overnight stay due to not being able to travel up and back in one day (6 hours round trip at least. I went shopping for about two hours in the mall with plenty of rest stops as it has been a long time since I have done anything like that with my kids and hubby and it is school hols so thought I'd better try. I have been so fatigued and in so much pain since though that I wonder if it was worth it!
The new rheumy has indicated that the only drug he can offer me is Actemra as I have tried and reacted to so many that he said no trial would touch me! I had to research my history and let him know what Plaquenil and Salazopyrin had done to me as one of the requirements was to have double therapy with those for 6 months prior to applying, I found my records and had too many bad side effects that he said he was just going to approach the drug company and hope for the best, he says he has 6 patients similar to me who have tried everything and failed due to allergies or intolerances and they are doing great on it. So fingers crossed, I should hopefully be starting on half dose initially for caution reasons in about 4 weeks, I am praying that I tolerate it as he said there is nothing else only steroids and I am already on them., So that is me.
Update on Liam, much better overall, seizures are well controlled with his epilepsy drugs and Gatorade daily as sodium levels were low and GP said her geriatric pts have seizures when these are low so give it a shot, well it has worked so its a wait and see now. He is still having joint pain and episcleritis in his eyes and this is being controlled with Ibuprofen when acute, I have found another paed RD so am waiting to see her. His anxiety has settled and he is off of control drugs for that too so thank God, some definite positives, he is also back at school full time mostly although he has been diagnosed with scoliosis since having a growth spurt and this gives him a lot of trouble so he is waiting to go to the scoliosis clinic. Thanks for reading and I hope to catch up with you all eventually, regards Janie.
Janie, when I had one slightly elevated liver test someone told me about Milk Thistle. Look it up. No problems since. Your problems ( pain etc ) sound like mine and probably many others. Whenever I do something I know I will pay for it later...6t5