So after a try with methotrexate & enbrel, both had not effect. During a routine OB/GYB physical, my doctor picks up I am pre diabetic,extremely low in Vitamin D and potassium. Also possible kidney troubles but now sure because I do take high blood pressure drugs too. Could all this be auto immune or PsA related? Will see my rheumy on 5/17/12 and hoping he has some answers. I am sick of being tired and tired of being sick!!
I'm with you! I have had PA for 10 years. I've been on everything... Enbrel, Humira, Metho, prednisone, muscle relaxers... you name it! Now on Simponi only. (6months) and not working well. very frustrated. I'm way overweight and no energy or modivation. ---- and more importantly sick of complaining about it!! (I'm sure everyone else is also...lol) I've recently been reading up on the Vitamin B Niacinimine - so hopefully can add that. I see my rheumatologist - tomorrow actually so we'll see what happens.
Anyway, glad to hear I'm not alone!!!
Hello Elizabeth,
I hear you, sister!
The incessant rain has been killing me, or is it not being able to sleep, or is it waiting 3 more months to see if this med will be the slightest bit beneficial, or is it not being able to ride in the car because of the deteriating SI joint, I'm really getting sick of being home, never thought that would happen, but after 7 years of it...
I will be thinking of you on the 17, and wishing you well! It is bad enough that we suffer on our age level, but heartbreaking to hear of the intractable pain and suffering of the young. Everytime I go to the Rheumy, there is a 2 hour wait, I see beautiful young men and women in wheel chairs, the kind of wheelchair that you never get out of and sit there and just sob the entire time.
My DC still swears that along with the autoimmune stuff that I have RSD. That's another 'charmer'
Speaking of the DC, they are vitamin Gurus, he mentioned something to me about vitamin D being absorbed better if you are taking the right type of calcium, I get the Cal/Mag 2001 from him, it is from calcium citrate/carbonate/ascorbate complex, Produced by Douglas Labs, it also contains D-3.
All of these meds seem to be a great danger to the kidneys as well as the liver, so they had better give some relief if you are going to take that kind of chance.
I'll tell you, if you could do all of things they want you to do, like exercise, you wouldn't even be there to see them!
Thank you for warmly welcoming me to your group, and offering your friendship to me.
I wish you well, ane will be pulling for you girl!
Hugs,
SK
Chelby, SK, Thanks for words of encouragement. When family/friends ask how I feel I just say ok. I am afraid to tell them the truth for fear of what they will think of me always complaining. This disease seems to rapidly progress. My joints are fusing up,I walk with a limp & use a cane when the pain is unbearable.
Chelby,please be sure to update us with how you made out at your doctor appointment. SK also please do keep us posted and let us know how you are doing. Hugs to both of you as well.
I am new to this blog and new to PsA. I am already hooked on this blog. I appreciate everyone sharing their stories. It helps me to think about the future and make the most of each day. I do have depression and have been on long-term drug therapy for it. I will be starting Remicade next week. Has anyone had any experience with this drug. I, also, have been having trouble sleeping and I know without a good night’s sleep, I will be short tempered and grouchy. I also just say I am ok when asked by family and friends. I husband asked everyday. I know he is just trying to be thoughtful, but I really cannot share how I really feel because he would be upset. That is why this blog will be so good for me because you understand how I really feel. Thanks being here and taking a few minutes to read my comment.
Hello MimiRose, thank you for responding to my blog. I think one of the nicest things about this group is we find out we are not alone. So many of us here are experiencing the same things. We find out we are not nuts!!! Before being diagnosed I would complain of being tired, aches & pains & getting in & out of the car. My oldest son would often looked at me like I was nuts & would say stuff like, I don't get it, how can getting in and out of a car be that difficult. I started to wonder & doubt myself. I became ashamed. Finding this group was a God send to me. We all battle depression from time to time. Hang in there though. As for sleeping my doctor gives me Tramadol. It does help me sleep better. I only take it maybe twice a week, but it is mild & not like any other pain med I have taken. If I can be of any other help, please feel free to ask. Hope you are feeling better soon.
Thank you everyone, MimiRose,you can always share here with us. I will always be happy to listen & UNDERSTAND. SK,thank you for the kind words. I am wishing you all the best too. Chelby, how did you make out with your Rheumy? Remember to keep us posted. Hugs to all!!!
It is calling for rain all week, I knew it was coming, now it has already started, I slept less than 2 hours. Will we ever figure out if we are more tired, more sick or... When people ask me how I am now, I simply answer that I am 'nuts', because if you try to tell them, they look at you or treat you as you are anyway, so I just cut to the chase!
Elizabeth, I'm curious, do you have allergies or food allergies?
Hello SK so good to talk to you again. I have more of a seasonal allergies but none to food. I am egg sensitive. My two kids have milk intolerance. I am not looking forward to the rain either. It is suppose to be here by mid day. I felt it coming & this morning I woke up more difficult to move then usual. As for people asking me how I am, I simply say the usual. I just feel people do not want to always hear your misery, People just think you are making it up or exaggerating it. I do not even mention how tired I am people think I am lazy or something. It gets to be very embarrassing. Will say a prayer for you to feel better. Keep me posted. Hoping you have a good day. HUGS!!
Thank you, my prayers are with you as well, Elizabeth, as with all of Ben's Friends and those who have yet to find us.
I finally handed copies of print out info of PsA and Spondyloarthritis from my Rheum with my name on them to my son, and begged him to pay attention to this, that it wasn't just about understanding how I felt, but about how he feels, as his spinal x-rays were worse 12 years ago than mine were less than 12 months ago.
I'll tell you if nothing else, the commercials for the new meds are making people somewhat aware of PsA, at least they are hearing the word, if through no other understanding of the severity, just by the possible side effects. It is the only thing I have ever heard about it on TV, but people are so flooded with all kinds of grief that after a while something inside just 'shuts off'.
Most people could not give you a definition of Lupus or MS, but they know they are serious diseases with a whole lot of suffering attached to them. I didn't really see or hear of anything about the IAAM day, that began yesterday, but that is still a start.
Ufortuantely until a beloved movie star either makes many public service messages, and hits the talk show circuit with it, this will remain in the shadows.
MimiRose,
Welcome to the land of unrested, short tempered, and grouchy! LOL! As much as we whimper and whine, we do laugh out loud! Sardonic humor is the BEST medicine in the world!!
I am surely hoping the Remicade will do wonders for you, I think Elizabeth said she is to start it too. I have read stories from many that have been helped by it. Prayers with you as well!
Speaking of rest, I slept about 2 hours early last night, 2 hours this morning, and am hoping for a few more hours today for the safety of my husband! Ha!
Keep laughing!
SK
I've seen in several places that being low in Vit. D is common for people with PsA....my test for that came back low also....my doctor recommended taking 2000 iu a day,,,I've just been trying to get outside more to see if that will help as my levels were not very much lower than normal...