I am panicking

I have RA and take Humira. Yesterday my bloodwork showed an elevated ALKP. I am so scared of getting lymphoma or just damage to my liver. My gums have been bleeding, also. I am waiting to hear from my doctor. Just need some peace of mind.....

11 Replies

  • Hiya shareasmile. I take by doctor you mean your Rheumatologist & as you're waiting to hear from him he's aware of your ALK phos levels being elevated? If so I would have thought if the levels were dangerously over normal levels he wouldn't have hesitated in calling you to investigate further. If he hasn't contacted you by tomorrow noon I wouldn't have thought there'd be any harm in chasing up again, explain you need just peace of mind as you're concerned if you don't get to speak directly to him. Try not to dwell too much, I've had elevated liver results before now & it amounted to nothing & would guess most others on here have too.

  • Thank you for the reassurance, nomoreheels. Yes, by doctor, I mean Rheumatologist. I believe he is off today, but I plan to put a message in to the nurse today. I know elevated levels are not uncommon with all the meds we take, but the bleeding gums along with it is a bit unnerving for me. I am trying to stay level headed!

  • You've done the right thing in reporting it to your Rheumy team. I'd forgotten you're in the US, time difference I mean, & why I said give it til noon! Obviously if your Rheumy isn't available speak with your Nurse Specialist or Rheumy nurse. I hope your call is responded to positively & you receive advice. If you're going to the loo ok, you've no pain, you're going as normal & your urine is normal straw colour not dark you're likely fine but I understand your bleeding gums would be a concern & you've done right to make them aware.

    Let us know what they make of it. x

  • Hi nomoreheels! I forgot to mention that I also take leflunomide. So when the nurse finally called me, she said that the doctor said that the leflunomide is likely to blame for my elevated ALKP. So, now what? She did not have an answer for me, so when I pressed her, she went back to the doctor and then told me he wants another blood test in a month. I stopped the leflunomide on my own. I am not willing to sacrifice my liver health for this med. I think my next step is acupuncture since the Humira is no longer working either! Thanks for all your helpful replies!

  • Oh ok! Then as your nurse says it could have been due to that & I hope by your next bloods your ALK phos level has come down. I've had elevated liver results in the past & it's been simple to address by reducing the dose but mine was due to MTX. I couldn't withdraw it or rather wouldn't because I know if I do within 3 weeks I'm starting to have real problems! Do keep your Rheumy updated so he knows you're ok & I hope whichever route he chooses next will be the one that works for you. Don't fret too much, the liver is a remarkable organ as it's the only one we has that the ability to regenerate so it can withstand quite a lot. :)

  • learn to meditate this is the most effective way to stop stress

    10 minutes every 2 hours if you have problems doing this as most people do just sit down and listen this is an easy way to meditate.

    cut meat out of your diet and all the junk food cook your food at no more than 50 Celsius and try and fast research all this and you will get better

  • Sorry but I feel take your meds as recommended by your pharmacist and good luck with the Rheumy tomorrow xx

  • Seems a bit weird to me to say take your meds as a suppository as they will still get to the liver -far better to stay calm (meditate if you are use to doing so but throwing it in at this stage may just be an added stressor as you worry about getting it 'right' etc - you'll probably do that because that's what our minds are conditioned to do when trying to learn new things!). Do gentle things which you enjoy to get away from worrying. Drink plenty of water as that will help dilute any toxic effect happening and do what your name says... Share a smile with those around you to ease the tension.

    Good luck


    P.s. If you don't meditate I would recommend it and it might be worth exploring as a stress management tool once you are past this particularly worrying event. Also, if you want to, please do let us know how you get on with your rheumy .

  • Thank you, Ali, for your kind and gentle words of advice. I did not get a call back yesterday so will hope to hear something today. (US time) In the meantime, I will try to live by my name and "share a smile". =)

  • :)

  • My doctor said that my ALKP is probably higher than normal because of the leflunomide I take. (I forgot to mention that). That is all he said. I was so frustrated. After all, this is my liver. It is kind of important! So after pressing the nurse for more of an answer, she called back and said the doctor wants me to have labs again in a month. I quit the leflunomide on my own as I am not wanting to cause any more damage to my liver. I think I will try acupuncture next!

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