Hi,
I’ve just read through 10 pages of the humira search but couldnt find the answer i was looking for so I’m just going to post my question here.
So I am 2 weeks in to my humira treatment & the side effects are tough. I’m hoping someone can reassure me that they will pass. I have tingling in my legs and feet all the time, but noticeably when they are bent or crossed. I have a low grade fever often, but the one that’s bothering me is the fatigue. I can barely function. I don’t want to lose my job but I’m struggling to work from total exhaustion. I’m a single parent. It’s making it hard to look after the kids, and bringing depression with it. There are a few other side effects not worth whinging about. Has anyone experienced this and did it pass? I had about 2 days this week where I was able to function normally.
Any wisdom would be greatly appreciated.
That sounds like regular ol' PsA to me. Call your doc on Monday., you may need a bridge of predi while the Humira takes effect. You don't have enough humira on board to be having the effects you are having directly caused by the med.
Its not unusual to have a flare in symptoms when starting or changing a med. It does pass.
I agree with tnt accept I will add two suggestions. Make sure you get plenty of liquids. I know I was dehydrated after my shot. Also, get up and walk around and stretch every 10 to 15 minutes. Get the o’ blood and oxygen flowing.
Thanks. True. It is much like the regular PsA symptoms. I have just weaned off celebrex, tramadol, methotrexate (as I had a chest infection) and prednisolone. Maybe prematurely. I am still on fentanyl patches and arava. Some days I feel like I have consumed more tablets than food. My rheumatologist is untouchable (I cant get hold of him in between appointments). Welcome to the public health care system. I see him in 3 weeks so I will just persist till then, and maybe resume the prednisolone. Thanks for your suggestions. I am really hoping this works as there isn't anything after biologics. It's pretty scary.
I see you are also on Arava (leflunomide) .... and you mention tingling in your legs and feet. It may be totally unconnected but definitely worth raising with your doc when you do speak as I have discovered that a side effect of leflunomide is peripheral neuropathy and the sooner leflunomide is stopped (with or without a flush to remove it from your system) the less damage is done and you're more likely you are to avoid lasting nerve damage.
Shel, you say that you’ve just weaned off celebrex, tramadol and predni. Did your doctor order you to discontinue them, or did you do that on your own? Could you ask your doctor to resume some of those meds to tide you over until the Humira kicks in? I’m with Lamb – what you describe as side effects sounds a lot like PsA to me. But you need to check with your doc. If you can’t get hold of your rheumie, then go to your GP.
Are you getting your meds from more than one doc??? I'm sure there is something I'm missing. But if you just started Humira and are taking nothing but humira for inflammation no NSAIDS , or no predi its going to be weeks if not months before the Humira goes to work, In the meantime you have nothing controlling your inflammation, its no wonder you are having these symptoms. Put continuous release narcotics on top of uncontrolled inflammation, its pretty amazing you are even moving. Are you sure you heard right?
Hi, thank you everyone for your suggestions. In Australia if you qualify, you get the biologics for a 6 week trial (your doctor can ask for another 6 week extension). If at then end of the 6 weeks you have had no improvement they cancel the authorisation, and you can never have them again because they are so expensive. So I was under the impression that they would work pretty quickly, so I started weaning off the meds to see what would happen. I regularly try to come off the Meds to see if I can. I was raised by a fanatical naturopath and have studied a little pharmacology so I struggle with taking medications. I know that some people can be medication free between flares, or even ‘cure’ themselves. I want to be one of them so badly, (don’t we all). That is interesting about the neurological stuff Jules. Now that I think about it I have had tingling in my arms for a long time too. I put it down to nerve compression from muscle tightness in response to the inflammation. I really need a better doctor who listens to me. They just minimise my symptoms or tell me it’s something else. This is why I keep trying to come off the meds. Because I don’t trust the doctors looking after me, or the medications
Thanks for your suggestions again. I’d hug you all if I could. I might reintroduce a low dose of the prednisolone and see of that helps till the humira works. Xo
None of us want to or enjoy taking meds, but in the end you have to choose between meds and your comfort and sanity. I think you are right on the money with the tingling issue: I had the same, mostly in my feet (and some in my hands). Testing showed it to be pressure from the inflammation.
I really believe that you are right to reconsider your decision to go off the meds. I hope it doesn’t discourage you when I say that it took a good three months for Enbrel to work for me. (I did have “hints” within a few weeks.) It was almost a year before I felt it had kicked in completely. In the meanwhile, I depended on my anti-inflammatories and my pain meds to keep me halfway functional.
As for the fanatical naturopath, he/she doesn’t have to live with the symptoms that you have, nor with the prospect of permanent joint damage.
RARELY, do people “come of of meds in between flares, or cure themselves”. The is blatantly untrue. Some people may have fewer outward symptoms than others, and think they are in remission because they FEEL fine, but come to find out years later that they had a raging disease going on inside. The problem with this is that when one finally comes to this realization, they already have permanent joint damage and permanent pain.
Humira can take up to 12 weeks to begin to show effects, so I would resume your prescribed medications. Like lamb said, it’s no wonder you feel terrible.
NSAIDs are part of the treatment for PsA, and rarely will you meet a patient who is not taking one along with their bio, DMARD or both. Usually, the ones who aren’t are allergic to NSAIDs or at high risk for GI bleeds.
Prednisone is a staple while waiting for your other medications to take hold and begin to work.
Pain meds? Those are another story. If you need them, you can take them but don’t take them daily. They don’t generally work that well for our type of pain anyway. On the other hand, if you are having withdrawal type symptoms, resume them now! If you have been taking a daily opiate or opiate derivative, it can cause harm to discontinue without a dr supervising the withdrawal.
I hope this helps you feel better and gives you solid information to go by.
Thank you all for your advice and kind words. I am seeing my rheumatologist on Monday. I’m only on tramadol & methotrexate, plus the humira. Feeling pretty good, today. It is so valuable having other people share their experiences.
It is really hard to get to a place of acceptance with this illness. I feel like I have accepted parts of it, but not all of it. Ann,I’m a work in progress.
