My intro

Hi all,  I'm a 29yr old mother of one diagnosed with RA in 2008 and other blood disorders (Factor V Leiden and MTHFR) in 2004.

So far I've fallen into the percentage of NOT helped by medicine.  I've been on at least 7- can't even remember all the names.  Leflunomide, Methotrexate, Enbrel... and currently on Cimzia.  I've been on it two months and have gotten no relief. 

I'm majorly down in the dumps lately.  I'm too young to feel so wretched (and no, I don't think anyone is old enough to feel this bad!).

I've been in physical therapy for the last three weeks after BEGGING to get into my rheumy and them doing xrays because of the back and hip pain I was having.  Hip checked out okay but my SI joints were majorly inflamed.  They gave me a shot in the office and suggested PT. Some days it helps, others/most it doesn't.  I can't do the stretches some days (or harldy get out of bed.)  Between working FT, having a daughter and a husband who travels 50% of the time I'm at my wits end. 

I told PT yesterday I was going to stop going (it's just feeding more money to the RA monster) but they gave me limbrel500 to try.  Which is how I found ya'll- google brought me here to a post about it. I guess I'll try it although I have no OA.

I just need relief- I need to feel decent! My rheumy says the next step is infusions which HOW am I supposed to do that and keep my job?  His office is an hour away and whichever of the two he recommended, one is more often and quicker but the other is 5 hours how ever often. 

FRUSTRATED! I need to get better for my kiddo if nothing else but most days I just feel DONE. I've never noticed an improvement on anything except steroids and thanks to that I've done tapers most of the last three years and gained 25lbs.  Which at my last visit my doctor told me to take off to help my joints!  And how do you excersise when ur entire back is in spasm trying to compensate for messed up joints? Even before this current issue I tried and if my knees and ankles and TOES didn't hurt then my wrists and hands did. kinda hard to find an excersise that doesn't involve ur limbs. And no- I don't have access to a pool.

Sorry for the rant... did I say frustrated?  I meant drowning.

When I was on Orencia it took 5 months to feel the effects. Some meds are so slow to build up in your system. Also are you on methotrexate as well? The combination of the two seems to help alot more than 1 on its own?

Pain management really helps too.

Its so frustrating the waiting for meds to work, I feel for you, golitho

Never give up and always have hope! Trust me on that.

I was diagnosed in my early thirties with RA. It was so bad I could barely move. Laying in bed was painful. This dreadful, shocking status continued unchecked for about a year. Endless nightmare. After that I found the prednisone, plaque nil and anti inflamatories helped enough to get by. Now, fifteen years later, I have some awful days but mostly a normal life (within reason). I found drugs that helped. Guess what I'm trying to say is it changed and will get better. Be mindful not to let too much time go by with severe inflammation. If prednisone works then use it until you get something else. Protect the joints.

I hate the prednisone but it allowed me a half way normal existence. There are still options you have not tried. Continue trying. Best to you.
E

Hi Kiwi,

Welcome to this forum! This is a nice group of people who will try to offer you whatever help and support that we can. Feel free to rant. Lot's of folks on this site are in the same boat with you. It is a good area for support.

Hope you are feeling better.  My rheumy has diagnosed me with PMR (polymyalgia rheumatica) in Feb of 2011, a sister disease to RA. He also said I may have RA lurking in the background. So I do not have as much experience with meds as the others. PMR is mainly treated with Prednisone. I have the extreme exhaustion and joint pain/stiffness, but without (so they say) the joint damage. I already have the joint damage, i.e. right knee, from regular OA.

Hope you are feeling better soon. Keep posting.