My husband (85yrs) recently dx'd with ET. JAK2 neg. CALR positive. (My brother has PV so he told me about this site. ) Platelets went from 500's to over 900 over the past year. Started on HU 500mg 1X/day about 6 weeks ago and platelets now 523. He has had no other symptoms and seemed to be tolerating HU. Last 2 nights, he has woken with chills and sweats, dizziness and confusion. low grade fever 100 which quickly resolved with tylenol. I've been reading lots of posts and it sounds like this could be from ET or the medicine HU. What does anyone think? I will be calling his Heme in the morning.
Nancy from Florida
Written by
endlessfun
To view profiles and participate in discussions please or .
If this has been just for the last two nights it may be nothing to do with ET or HU, but perhaps a virus.It definitely worth letting his haematologist know though and perhaps seeing his GP if it happens again.
Rigors (a sudden feeling of cold with shivering accompanied by a rise in temperature, often with copious sweating) is a common HU adverse effect. online.epocrates.com/drugs/...
Thanks Hunter. Talked to Heme (NP)(-Dr off this week) who did not think it was the HU. Possible UTI because HU affects the immune system. Had urine test this am. No infection noted but Pos for proteinurea (15). NP is supposed to be calling me back. He does have borderline kidney issues. increased bun and creatinine in the past, but last one in June before seeing Heme doc was normal (bun 19, creat1.07-previously 1.19, GFR 63.) Renal impairment is one of the side effects of HU. His platelets really came down quickly on HU but I am really concerned about these adverse reactions. If the NP does not suggest repeating these labs, I am going to request it.
Right now, my husband does not want to take any more of the HU. My concern is that the NP is making decisions right now because Dr not in all week. The Dr in not on the MPN list of Docs but he trained with the MPN docs at Moffit Cancer Center in Tampa, Florida. He seemed really on top of things but I don't know about the NP.
He did not have a bad night last night but did have 99 temp in AM. He has no upper respiratory symptoms and we are not in a high risk area for Covid.
Would appreciate any ideas or input you might have.
Your read of the possible adverse effects of HU is correct. Renal impairment is a common reaction. So is rigors and fever.
The normal protocol for monitoring HU is every two weeks until a stable dose/reaction is determined. With a history of borderline kidney function, the CMP should be monitored regularly too. Nephrotoxicity is an intrinsic risk of HU. It is wise to monitor closely.
In the absence of another cause and given the timing, it is reasonable to suspect HU as the cause of what is going on. Many providers have very little experience monitoring HU. Its use is supposed to be restricted to doctors with experience in managing toxic medications. It sounds like this is a decision that needs to be made in consultation with the hematologist when he returns.
Note that I am HU-intolerant. I experienced toxicity even at very low doses so had to discontinue it. I have done much better on the interferons (Pegasys/Jakafi). Also note that the IFNs can also cause issues with the kidneys. I was have had some borderline kidney issues too. No problems, just older weaker kidneys that need more water. BTW - when on HU hydration is even more important than ever. It protects the kidneys and will almost certainly improve all kidney numbers. The minimum I drink of H2O is 64oz/day, not counting coffee, tea, and sodas. Alas, beer does not count either.
The good news is that there are other options should HU not be suitable for your husband. His preferences are also a decisive factor in make the treatment decision. His treatment goals and risk tolerance is at the core of the decision about what treatment to pursue.
Hopefully, your husband can talk to the hematologist when he gets back. Suggest not making any changes until it can be reviewed, but that is his choice to make. Meanwhile, here is a bit more information that may help.
UPDATE:Hunter, Thanks for your great info. Talked to Heme's NP who agreed to try holding the HU for a couple of days. NP did not think it was the HU, but since no UTI finally agreed it could be the HU. His blood work including a BMP which I requested (to look at renal function) is being repeated on Monday and then f/u with Heme. He was taking baby aspirin 3x's/week and now giving every day. NP said that they might want to retry the HU at a lower dose. (Not sure if Hubby will take it again since he felt SO BAD). So he did not take the HU yesterday. He slept through the night without waking, fever, rigors, etc. His appetite is back and food tasting good again. I am so relieved.
What do you think? He took the HU for 6 weeks without any problem. The Platelets came down to 523 from a high of 950. Would you try the lower dose or request trying another med. Carl is 85 so I do not know what would be next thing to try. My brother is on Pegysus for PV but he is a lot younger than my hubby.
Bear in mind that I am not a medical professional and am speaking from the perspective of someone with PV who has tried several different treatment approaches, including HU, Pegasys, Besremi, and phlebotomy-only to treat what used to be ET and is now PV.
I am HU-intolerant. I experienced toxicity even at very low doses (500mg every other day). Some of us simply cannot tolerate HU. It took me several months after discontinuing HU to be free of HU adverse effects. I have tolerated Pegasys and then Besremi far better. Adverse effects have been minimal and the interferons have been far more effective.
What you have described is consistent with adverse effects from HU. If the adverse effects are not evident after he discontinues the HU, I would consider that definitive evidence of HU as the cause of the problems. Some people do find that they can tolerate a lower dose, but not all.
The good news is that there are other options should he wish to pursue them. Pegasys is the other first-line option for cytoreduction with ET. Anagrelide and Jakavi are considered second-line options. Unfortunately, due to the cost difference (HU=$80/month, PEG = $4,400/month). many formularies prefer HU, particularly for older patients. It can require pushing to access PEG if that is what your husband would prefer to do.
It is important to note that we are all different in how we respond to the treatment options we have for MPNs. We each need an individualized care plan based on our goals, preferences and individual responses to treatment.
Thanks for the info. I told the NP that we want to see the Heme. I can and will be assertive to get what we want/need. I watched my former partner slowly die of cancer. You learn to speak your mind.
He did not take the HU last night and he is back to normal. No sweats, chills, fever, anorexia,etc. I think we proved it was side effects from the HU. He took it for six weeks and then suddenly had all these side effects. I thank everyone for their concern.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New with ET and this week I completely fell apart
New member diagnoses w ET
ET and Hypothyroidism 
