Just been in loads of pain for the past 5-6 months and it has been so relentless. Been on humira now for 2 months but I am in as bad a state as I have ever been unfortunately. Surely it can't be this bad forever right? I'm really finding it difficult to cope with the pain and keep my hopes up about the future again. Is there anything else I can take with humira that might help me because the pain is unbearable.

I've heard so many positive stories about humira yet I havn't responded in any way. It is quite demoralizing. However, I will keep my head up and hope for better results.

Seb

Have you asked your doctors for some pain meds? I couldn't get through the day without them. There is no good reason for anyone to have to suffer from pain.

Avonldy - I've been on arcoxia, a NSAID for about 2 years but I havn't noticed a concious reduction in pain and stiffness from taking it for probably between 1-2 years. Other than that I'm taking humira and yet to see and impact yet.

Maybe it's just the wrong combination of medicine? Not sure.

Thanks for reply.

If you are still in pain, ask to switch NSAIDS. It wouldn't hurt to ask for something like Ultram to helm manage the pain. It isn't as strong as some other narcotics, but many people on this forum take it. It sure helps you get a good nights sleep without the pain keeping you up.

HI there,
I'm sorry to hear things are so bad, I had some months like that too. I tried Humira and it did not work for me, I felt worse while on it for some reason. I kept sticking with the NSD and when I would cheat on the diet I would just start over the next day, eventually I started to feel less inflammation. I tried remicade and for a few weeks it helped but then on one of my loading doses my heart reacted to it and they immediately shut the IV off and sent me to the ER. I must just be sensitive to medicine?? I didn't take medication my whole life so I don't have a lot of experience with medications and side effects.

You should call your dr and tell him or her that you are in a lot of pain. They hear it ALL the time because this disease hurts and patients call them withthe same thing you are expereincing, pain while on a medication. Call them and ask for something to help your pain. I sure hope you feel better, and try avoiding grains and dairy for a couple days, see if you feel better. Take care, things will look up.

Yes, definitely ask to switch NSAIDs - you should be noticing something from them. Also talk to your rheumatologist about serious pain meds for when things get too bad. NSAIDs really don't do a lot for pain - unless they are working on the inflammation (less inflammation = less pain). Also ask about referral to a physiotherapist for help with pain relief - I've found NZ physios really quite good on things like that, as they will look at things like posture and appropriate exercises along with actually treating specific areas with TENS, massage, gentle mobilising, etc.

Are you also being careful about how you are moving? If pain is coming on after doing specific things, whether it is specific activities or sitting too long, etc, then thats another good reason to see a physio to try and find ways to prevent or deal with it.

Another thing you might want to talk to either GP or rheumatologist about is adding in a low dose of antidepressant. It could help a lot in two ways - first is that some antidepressants really have a lot of effect on modifying your response to pain and knocking it back considerably, and second is that you do seem to get very down about all your pain, so the anti-depressant effect could also help you cope better.

HI

Cymbalta or Effexor, modulate the pain recptors . They are taken at a low dose usually to help pain . Do you have access to a pain clininc ? I can't take narcotics, or biologics, or Nsaids. So it is difficult, but I have said this before ,my pain is not nearly as bad when I was in my 20-30's. It does seem to burn out in some ways.

Janet

Seb,
Sometimes the Biologics only stop the progression of the disease which is wonderful but in a lot of cases it will not stop the pain. I have done the NSAIDS, the lighter narcotics, the diet and the stronger narcotics. I could not get out of bed let alone roll over in bed without narcotics. Maybe they need to add a DMARD as well like Sulphasalazine or Azulphadine or Methotrexate. I am also on a low dose of Prednisone. The Dr. took me off of the MTX and prednisone to see how I would do. Bad idea. Guess you don't know that something is helping until you stop it. See if you guys have pain clinics to go to. You don't need to suffer Seb okay?

Seb,

I agree with everyone here I have been on Remicade for 3 years I havent been able to do it monthly like Im suppose to because every time I get a good dose it lowers my immune system and BAM Im sick...pneumonia is the biggest culprit for me last time it took two months to get over so anyway what I am trying to say is I have been fighting this disease for 20 years and on Remicade for 3 so I have alot of damage from the past and even when I am on Remicade I still have to take the big drugs like tramadol, oxycontin, fentanyl..now I will say I take them less but I still have to take them.

I would say keep giving the humira a chance I know when I started it took a good four to five months to get the drug in my system, get the right dosage I had to up to 500 and I do it every four weeks instead of six to eight like some so maybe you still have alot of wiggle room there...PLUS do not hesitate to ask for pain meds for the break thru pain you are not superman none of us are.

Try and keep your chin up, talk to your Doc and see what you can do!

Hugs!

In terms of disease modifying meds, if humira isn't making much of a difference yet then sulfasalazine would probably be the next med to try. I think some people take both at the same time.