Humira fatigue??

bradfrankshaw

Hi everyone! I just posted a hello on the forum; but wanted to put a post to ask about something. I've been taking Humira shots since last september and they've been great, if a little nerve racking to take because of the sting etc.

I took my latest shot thursday night in my thigh and all went well - in fact very well as usually the thigh shot really hurts because I think I wasn't allowing it to warm up enough before doing it - and the sting was ok. Last night I went to bed around midnight, not done that in ages, after a bit of xbox with some friends. But around 2am I woke up because although my body was tired, my brain just felt wide awake. I have epilepsy and although they mostly at night in my sleep, I knew this wasn't an attack.

I tried to get back to sleep and eventually went off to get some cereals because not only wasn't I sleepy, I was hungry. In fact starving! Eventually I got to sleep around 3:30 I think and then woke up at about 7.

Then I drifted off again to 9:30am because the Tesco man was banging at the door. Put the shopping away and then fell asleep until around 11!! Had a shower, breakfast, pottered about a bit, had a bite to eat with my wife, then went upstairs and fell asleep until half four!! I was completely exhausted - my brain felt wide awake but my body just wanted to sleep for 100 years

I was also urinating a lot too; no idea why. Then we ate dinner and then again I went upstairs and slept roughly for about 2 hrs. My wife said to look it up online because obviously this isnt normal. I did some searches on humira and found information on people being very tired after starting to take it (which lead me here ); but I've been on it since last September!

I just don't understand why I'm sooo tired! Is it to do with the shots, or is my immune system hitting something I've eaten or what?? So many questions sorry - I feel like ringing the out of hours doctor if this goes on

cheers

frank

tattybags

Hi Bradfrankshaw
Sorry I can't help you with the tiredness thing as I don't take Humira, however I'm certain someone will get back to you about that.
I take Enbrel which is another self injection once a week and I also had trouble injecting into my thigh it really did sting.
Have you tried injecting into your tummy. Thats what I'm usually doing now and finding it much better,
I do agree with you though that it has to be a nice room temperature before you inject and of course don't inject too fast - that will make it less painful aswell.
Tatty

barbara12

Hi Frank
And a very warm welcome to the forum. gosh you poor thing, and you have got me yarning :eek: I am sorry I cant help with any advice, but hopefully someone will be along soon,
If I was you I would try and have a word with your GP or rheumy.
Please let us know how you go on.
Wishing you well
Barbara x

dreamdaisy

I have been on humira since July 09 and yes, I get bouts of extreme tiredness which for me means my PA is flaring. It is for the most part subdued by the drug but every now and again it likes to climb out of its box and remind me that no matter what I do I cannot beat it into submission with these puny meds.

I leave the humira out of the fridge for about 30 minutes prior to injecting and I use my stomach as there are fewer nerve endings there. If you wish to use the thigh then sit on a bed with your legs out straight - that reduces tension in the thigh muscles and may reduce the sting. I guess you have the pen device like me? Grey and burgundy? The rate of the injection is out of our hands, yes? It does pack a punch! I wish you well. DD

tattybags

Hiya again Frank

Forgot to mention in my last message - I used to have the 'pen' which has been said by someone else - really does pack a punch doesn't it.
I have to confess that it got the better of me and I reverted to the injection by syringe. Its that which I use into my tummy and find it much more tolerable.
Very warm welcome to the forum - I've only recently joined but goodness its been great to talk to fellow sufferers who also refuse to lay down and allow Arthur to do his worst without a fight.
Keep going and be well

caterina57

Hi Frank
Sorry can't help with the meds stuff, just wanted to give you a warm welcome!
Cath

bradfrankshaw

Hi everyone - thanks for the great replies - yeah I use the humira pen injector, both in the thigh and in the stomach. Lol yes I do stand to do the thigh and thinking about it, it would be a bit daft because the muscle is tense whilst standing.

Today has been a lot better, but some sneezing which makes me think I have a cold coming Didn't wake up last night and got a good sleep. Had a good day, in the garden, clearing the greenhouse, shopping, fun with the family. Tonight just before bed, in the last hour have been feeling a little run down, bit physically tired. If it goes on then I'll see the doc for a blood test.

frank

dreamdaisy

You sound as though you are doing OK - I cannot do even a tiny fraction of what you mentioned ijn your last post. God I feel glum now. :sad: Never mind, onwards and downwards! I have my bloods done monthly - don't you? What else are you taking? Man generally does not live on humira alone. DD

bradfrankshaw

Hi there - yes sorry, generally I'm reasonably active (I've rewritten that three times taking into account my lifestyle choices lol) - although I've taken up the exercise bike to improve the ol' ticker because I use computers all day and drive to and from work, so I don't get a great deal of physical activity during the week. Don't feel glum - I'm sure there are loads of things you do that I don't do or get to do that I wish I could!

Humira was a last resort for me because sulphasalazine and methotrexate caused major problems with my anti-epilepsy drugs and my hands were getting to the point where I couldn't write or use a keyboard/mouse (game over in my line of work!). I'm on monthly blood tests although I'm late for my most recent!

frank

dreamdaisy

Ah bless, 'don't feel glum' he says 'you can do things I can't.' Hmm, think not mate! I am on crutches, can walk for about six minutes tops (then I need a nice sit-down), I can no longer ride a bike or swim, I cannot garden any more (the sticks get in the way) and as I cannot stand still for long I am now routinely cooking and ironing etc sitting down. He, meanwhile, is clearing sheds, gardening, shopping and having fun. I reckon you are doing just fine, one way and another, but the epilepsy meds must be a terrible complication re the arthritis meds. I hope the humira conitnues to be as successful as it appears - I think the tiredness is a part of the arthritis and perhaps, just possibly, you are doing a little too much. All of us on here have to pace ourselves, do a little, rest a little - have you googled the spoon theory? That gives a very neat explanation of how we sometimes fail to manage the every day things that so many people do without thinking. Rest a little more and perhaps the tiredness will ease. I wish you well. DD