Iritated and unsure !!

[Realpro325]

Not sure if you know my story but I have been through and still experience life in another dimension of reality. No I am not crazy but after eleven months of chemo(Rituxan,methylprednisolone,6mp,methotrexate, humira,uceris,prednisone) and a host of other meds I am still not any where close to remission. Why will these drugs not work? They tell me just wait and see that they will work sometime soon. I feel like a war is going on inside my body !! Has anyone else experienced this long of a flare up?
Best regards,
James

[annekat]

Sorry to hear of your continued troubles, James. There should be some good WG experts in your state. I've heard of some at UNC but don't remember their names; someone will know. You might consider seeing world renowned specialists, if you can, though you may feel you are in good hands with your current docs. I remember reading about your constant vertigo, and am hoping they can do something about that, if they haven't. I hate to think of anyone going through these things for so long and seeing no improvement. I have been diagnosed with WG for 4 years and not been declared in remission, and have had a couple of minor to moderate flares, lasting two or three months each, since initially getting better. But I have steadily improved, and right now, I feel I'm doing very well, almost back to normal. I wish and hope that you will see as much improvement as I have. Did you ever take Cytoxan? I only ask because you didn't list in in the meds you've used, and it really worked for me, although there are reasons some prefer to avoid it. I have had lung, ear, nose and sinus involvement and some occasional vertigo but nothing like yours. I wish you the best of luck and a breakthrough in your treatment and recovery.

[Debbie C]

Hi James, sorry to say I do not know your whole story but with that drug cocktail you are taking you would think something would be working. The rtx does take awhile to kick in but not 11 months. Like Anne suggested you might want to check around to get a expert and get another opinion. That is a lot of drugs you are on ,its no wonder you are not in your right state of mind. Keep us updated and hope you start to feel somewhat better soon.

[drz]

If you aren't getting worse , then the drugs are having some positive effect but you might want to get a consult to see if some tweaking might be more effective in moving toward remission. Like Ann said, some people never seem to attain a drug induced remission but almost everyone does improve with treatment. Good luck in getting better results soon.

[Realpro325]

Thanks for the info. I must now stay on Humira for a year due to my severe ulcerative colitis and I can't start the Cytoxan or Remicade until next year. I have so many pain,aches and cramps I can't count them all.Thank God I have this one place to get some verbal understanding and true sympathy. I am happy with my DR but just knowing I am one of the few that may not make it scares me sometimes.
Thank you all again for the info.
James

[Jaha]

James,
Don't ever feel like you aren't going to make remission, ever. There are so many different reactions to the meds we all are given. They are leaning more and more towards treatments not being one fixes all, it is so individualized. I have been in this for 5years now and have taken, MTX, Imuran, CTX, Cellcept, 6 rounds of RTX, along with the Preds, Bactrim and all the supplements and still don't hear remission or feel close to remission. It does get frustrating and pain can get you down, but it is better than the alterative. I wish you all the best for getting your colitis under control. My Doc says that I'm a complicated case and to remember sometimes to just take baby steps. We are here for you, so keep us updated on your condition. Best of luck to you.

[Realpro325]

Jana,
Thanks for the encouragement and kind words of wisdom. This is why I came to this site, you and the others here give each of us what we need at the exact time we need it, all we have to do is ask.
Unlike other places we don't have to qualify our sickness or pain on this site. I must keep learning to accept the fact that we all are trying the best we can and pray the sun will come out again in the morning.
I just never dreamed I would look out my window as an invalid with so many issues and lacking the strength just to make it to the next hour of world spinning madness. Thanks to those who have made it through
before me I must find the courage to take a breath and push my weary mind forward.
Best regards,
James

[Tom]

Hello Realpro 325, I'm a little late to the thread but let me say that it may take some time!
If its any consolation, If there are no negative results then that's good news! I have resigned to the fact that I am a life time pred user and for what its worth, I'm Fatigued every day, and since I have COPD as a result of the wegs and the kidneys took a hit as well as no taste or smell, I feel like I'm winning! What Im wining is not clear but it is a mindset that I have !

I gather that you have had some cancer with the chemo? As have I and never really recovered!
We only have the moment and I live in the moment and glad for each day, and pray to feel better tomorrow and get up and do it again!

Ritoxun should take effect but when it does it will take some time for it to get thru your system as the RA tells me that it hangs in the body for 3 to 4 months!
I have quit wondering if the drugs are working as long as I don't have what I believe is a flare or relapse!
The dimension of reality you speak of, I can understand! In my mind at times of rest, I feel like I could get up and do anything with out my oxygen but soon my reality is back! In my mind, I sometimes think the Dr's have misdiagnosed me, but Im reminded of the events that led me to the ER after being sick for so long!
I'm not a real religious person but have made up my mind that I have made peace with my god and Im in a good place in my life because I have done everything I could possibly do, like wanting to see the ocean with my wife and since mountain travel is out for me, I am okay with that and it wasn't meant to be!
So from me to you, hang in there fellow weggie and live life for the moment and to the fullest and feel free to plan and enjoy what you do and stay vigilant and tell the Dr's if you have problems!
You use the word irritated, I have a tendency to use frustrated! Unsure I would agree with! Good luck!

[cjhnsn29]

James! It feels like you are not getting better or the Rx's you are on are too much. I felt that way myself it took them time to find what RX'S worked the best for me. They are probably having some affect on you and your not realizing it. You were probably hopeing to feel functionable more than you are. Believe me it takes time. I have had 13 surgerys so far and need 2 more. Like the ladies on here say it's the gift that keeps on giving... Give it time. Stay positive. CJ

[Debbie C]

James,I see you live in N.C.,is there a way you can go to the Mayo Clinic. Does your dr. have any other patients with wg? If not you need to find a more experienced one or at least have him consult with an expert. I think all those drugs you are on has your head spinning. Like Don always says..hang tough and hopefully things will get better for you and everyone else soon. Keep us updated and vent away anytime.

[Realpro325]

Tom,
Thanks for the encouraging support and understanding, again this is the info I was looking for in this thread. It looks like you have had a rough time also. I have not had any cancer just yet but I have many tumors that need attention. I'm not sure you understood what I mean about being in another dimension as I was referring to my permanent form of constant 24 hour vertigo and tinnitus that started two years ago from damaged nerves in my brain more than likely due to vasculitis. I will take your advice and claim victory over one good moment at a time.
Best regards,
James

[Realpro325]

Debra,
Thanks for the reply, Yes my Rhmy has four Weggies and consults with many other Dr's who have created this plan for my situation as the severe ulcerative colitis is kind of driving the bus so to speak for now.
Best regards,
James

[vdub]

You'll make it, but its going to seem like you won't. I will say you are having a harder time than most. Fighting the depression and anxiety that comes along with the treatment of the disease is just about as bad as the disease itself. I would hazard a guess that most of us on the forum either have or had some sort of depression. I can't speak for anyone else, but anti-depressants helped me a lot. I'm on 20mg/day celexa and I pop a 5mg lorazapam at night. They are both low doses, but do wonders for just being happy and getting through the day. Ask your doc if you would be a candidate for such a thing.

[Realpro325]

vdub,
Thanks for the kind words of hope. I really need them at this point and this site is the only place in the world it seems I can get that along with the valuable medical insight from those who have been through this hell much longer than me.
Best regards,
James