Remission but at what cost?

[suschex]

I started Humira 12 weeks ago today. I had never had sacroiliac pain before in my life. Now, since starting the Humira I have it so terribly it is difficult to move about at times. I also have terrible pain in both of my calves for no reason. It is now difficult to get up from a squatting position due to my back and leg pain.

One year ago I was an active 38-year-old marathon running, mother of two. Now I do not look like myself (thanks to Pred.), feel like myself and am not able to be active with my kids or run for pleasure.

Oh, but now the Crohn's is in remission...not sure why that matters since I am still am so unwell. I am starting to think I would be far better off without the Humira!

This is not what I expected at all. I was sick for a year w/o a dx. Then in October the Crohn's was discovered and I was told it would be fine. We would get it to remission and I would be back to my life as I had known it. Not at all the case.

I guess there's nothing I can do except focus on being happy about remission and accept this new non-life that I have. I'm sorry but that just feels terrible.

 

[Manzyb]

I'm sorry you are having so much trouble. Have you talked to your doctor about the pain that you are having? I really hope you get to feeling better.

 

[suschex]

Thank you! I feel so guilty for posting that this morning. I was feeling so frustrated and sad and lost sight of just being thankful for all that I have good in my life...including the remission. I went to my GP and found out that the Strep Throat I had 10 days ago is still very much active and that is much of why I am feeling so badly. He also did x-rays of my back and all looks healthy as far as bone goes and that is good news as well! Even if Humira makes Strep difficult to kick I am still thankful I have that option.

I'm sorry for the rant and appreciate the support! I hope you are doing better as well!

 

[Trysha]

Don't feel guilty,sometimes we need to share the negative events and our feelings and this is why I am grateful for Crohn's Forum.Sometimes we have no one in our lives we care to share our thoughts with and this is why we are here in the forum.
It has helped me quite a bit since my diagnosis.
It is good that you now have a reason for being down and hopefully your strep infection will soon clear up and you will be back to your bouncy self.
Hugs and best wishes
Trysha

 

[kjhngisd]

Glad to hear it's something you can understand.
Fighting infections and disease while on some of the meds is the real trick. But it's manageable at least.
Good luck. Hope you get even better soon.
--kevin

 

[rygon]

It wouldnt be to dehyration would it? I know I suffered badly with pains in my calves from D (used to get it with too much exercise/sweating as well). Some diraylite helped (salt and potassium mix). Maybe worth trying that

 

[stratford]

I had similar problems with the immunosuppresive drugs my Dr gave me.
They got the Crohn's under control but i swapped Crohn's for the horrible side affects the drugs gave me.They made me feel even worse than the Crohn's most of the time.
It swapped one problem for another.I couldn't live with those dreadful side affects - i just couldn't function as a normal human being.
The arrogant consultant used to get quite annoyed with me when i kept complaining.Once he told me i'd just have to cope with the side affects.He didn't have a clue.Only a patient who took these type of drugs would ever understand those horrid side affects.His arrogance and all the trouble i had pushed me to seek alternative help.
It's nearly 14 months now since i began taking AMP.I've had great success in gaining remission from Crohn's and i have not had any side affects to 'cope with'.

 

[Manzyb]

Never feel bad for venting!! We all have times when things seem to just be too much. Hopefully you'll feel better after the Strep is gone That'd be great. Happy to hear nothing is wrong with your back. Humira was a great drug for me, too! I never really reached remission with it, but it made things better than it was before it. I hope you stay in remission for a very long time and get to feeling better!

 

[xX_LittleMissValentine_Xx]

Its often hard to come to terms with side effects of new meds. Its the last thing you think about when you are desperate to feel better! I think there is usually a bit of an adjustment period. I hope you will feel better soon, don't worry about venting here, we all understand. And don't hesitate to talk to your doctor about any worries. The doctors are supposed to get you feeling better and that includes minimising nasty side effects.