Hydroxycarbamide and Liver,Kidneys

[azaelea]

Hello friends, I have a question. One of the side effects, although rare, listed for Hydroxy is damage to Liver and/or kidneys. I have had a recent scan which shows cysts on my liver and kidney malfunction of some sort. Just wondering if anyone has come across this side effect of Hydroxy.. I am on 500 mg daily with Clopidogerel. I have ET JAK2+ with platelets under control around 350. Any articles which would help would be appreciated, regards, Fran

[hunter5582]

You are correct that Hydroxy is both hepatoxic and nephrotoxic. This is an intrinsic risk that is the reason that ongoing monitoring of liver and kidney function is so important. What you are experiencing may or may not be related to the Hydroxy.

The cysts on the liver may also occur for other reasons. Note that we are more prone to a variety of neoplasms when the JAK-STAT pathway is deregulated. The apparent cyst is something that needs to be followed by a hepatologist.

The kidney issue needs follow up with a nephrologist. Renal impairment may occur due to the hydroxy. It can also occur for other reasons. I also showed some signs of potential renal impairment prior to starting on the IFNs. Assessment was that there was no kidney disease, just aging kidneys that needed a bit more water to work effectively. Rx = more H2O. It worked.

Increasing hydration is important in managing MPNs, particularly when we are taking medications that may damage liver and kidneys. It is a good place to start and may yield benefits.

Whenever we get all these "ologists" involved it can be a real challenge to get them to all work together. I have adopted the strategy of being my own care manager to ensure good communication between the various providers on my care team. I make sure the communication between providers happens.

Please do let us know how you get on and what you learn.

[azaelea in reply to hunter5582]

Thank you so much Hunter for your advice . I was hoping you would see my post and give me your thoughts. I'm seeing GP in 2 weeks after further blood test and she previously mentioned referring me to a Specialist. My Haematologist actually gave me the Ultra Sound Scan result while on a telephone 2 monthly check up. She was more explicit than the GP who I saw face to face later last week. The Scan was instigated by GP as I suffered with bad nausea accompanied by pain under ribs on right upper abdomen. I am trying, but failing, to obtain a copy of the Scan report for myself but one has to go through loads of hoops here in GB. There are several very small cysts on my liver according to the Haemo. I, like you take my medical affairs into my own hands and ensure the right people know what’s going on. I’ll certainly post again when I hopefully learn more. Best wishes and hope things are going along nicely for you. I do follow when you post your results. Fran

[hunter5582 in reply to azaelea]

You should be able to directly access most of your records though the NHS Patient Portal. Getting access to hard copies of your records should not require any hoops at all. Access to your own medical records is required by law in the UK.

Here is the link to the NHS patient portal.

nhs.uk/using-the-nhs/about-....

[friendofpiglet in reply to hunter5582]

I'm afraid it doesn't work that way. The NHS app will provide our GP records but NOT necessarily those held by our haematology doctors.

The last blood count records on my NHS app date to three consultations ago, I suspect only because my GP was asked to presribe for me.

I haven't tried it but I imagine I could ask my GP to update my records after each blood test but am unwilling to burden them unnecessarily since I always ask for the numbers that I am interested in at each consultation.

Andy

[azaelea in reply to friendofpiglet]

I agree with you Andy, it doesn’t work that way with our NHS. I do get the Haematology blood test results on MyGP App but only because the GP takes the blood sample.

[hunter5582 in reply to friendofpiglet]

Hello my friend.

I tried to avoid going on too much of a rant responding to our friend azaelea and your struggles to access your own records. It must be maddening to be denied ready access to the information you need to manage your own care. Particularly when you are the one who owns the information about yourself.

About the only other thing I can suggest is to ask your provider to just hit the print button when you are in an appointment looking at your labs. I use a number of different electronic medical records and have never had a problem printing anything I am looking at. It usually only takes a click or two to print anything out. What is particularly helpful with labs like CBCs is that there is usually a historical view where you can see/print multiple labs on a single piece of paper. My hematologist always gives me one of those in every appointment so we can look together at the trends during the appointment. It is very easy for the provider to do.

Wishing you all the best a ready access to all you want to see.

[azaelea in reply to hunter5582]

Thanks for the link Hunter but as friend of piglet says, it doesn’t work that way. I have the NHS App which only gives the GP medical records, but not tests such as scans etc. they are recorded but when clicked, marked “ not available” . I also have My GP App from which I can see my blood test results including those for Haematology. The Law here also states patients must have access to their medical records, but forms have to be filled in and you’re lucky if you get what is requested by 4 to 6 weeks. I did ask Gp Receptionist but she replied a form had to be completed and it would take at least 28 days. I will try when I see GP. Thanks again.

[hunter5582 in reply to azaelea]

Sorry to hear that accessing your own records is so hard to do. I truly find it hard to comprehend why the NHS would not just activate access to all labs and reports in the patient portal. Your records are already there. It is so very easy to do. It would save everyone a lot of time and effort.

There have been others in various healthcare systems who have expressed similar problems accessing their own records. It is quite unfortunate when providers or systems of care forget that it is the patient who owns the information about themselves. It is not up to the provider nor the system to decide whether the patent should be able to access the information in the patient's own record. That is the sole province of the patient. Access to one's own records is a fundamental patient right.

Wishing you all the best moving forward and accessing your records.

[EPguy]

I have no reports but some personal data:

I had Usound at time if my Dx, before starting HU, and there was a cyst on kidney and gallbladder. No concern for Dr, only to follow up in a year. The follow up (with ~1 year on HU) was ok, no worries on the cysts.

So the HU does not seem guilty since cysts predated it.

But for liver I had MRI, it showed some oddities, but nothing they are concerned about. But the Usound prior to HU showed no oddities, so I can't rule out a connection, (or a better Usound review) while Dr has not discussed it.

INF also is a liver/kidney risk, (I'm on Besremi) so we get regular CMPs (Metabolic panel)

They didn't specify the kidney malfunction? Usually when usound shows something they do more tests to narrow it down. At least CMP seems likely, and maybe as I had, an MRI. MRI gets sharp "pictures" of every detail. I see your troubles with NHS getting this sort of info, frustrating.

[azaelea in reply to EPguy]

Thank you for your reply and information about your cyst experience. It does seem as though it might not be related to Hydroxy from what you say. It’s helpful to know how others have experienced similar things, though maybe not connected to MPN’s. I’ll persevere and get to the bottom of what exactly has shown up. I think an MRI scan would show more. Regards, Fran

[MaggieSylvie in reply to azaelea]

Patient Portal is a thing! you just have to access it.

In my case, my haematologist told me I had a cyst in my liver, but I am MDS/MPN - ET triple-negative and am on aspirin only. I believe I can't have medication for MPN because it might worsen the RARS. I'm ok, though; I don't believe the cyst will make much difference, especially as I am a "lumpy" person. It's not a bad thing to be unable to take medication that might make one sick!

[hunter5582 in reply to azaelea]

You are correct that a MRI (with contrast) would show more than an ultrasound scan. If the cause of the abdominal pain remains undiagnosed, it seems like the logical next step. it is going to be a bit tricky to figure out since pain in that area can be from multiple organs (liver, gall bladder, pancreas, lungs). In addition, HU can cause abdominal pain and issues with the liver. Of course, these issues can happen on their own as well.

It sounds like it is time to consult with a gastroenterologist (if that has not already happened). What is going on may well be beyond the scope of a GP. A MRI may show what the next step should be in terms of specialist care. Certainly your MPN Specialist should weigh in during the process to evaluate the possibility of HU adverse effects.

I would note that I have cysts/lesions on multiple organs (kidneys, liver, lungs). None are painful and all are believed to be benign. Due to having both the JAK2 and NF1 mutations, I am more prone to neoplasms. That is what caused the brain tumor. I made no assumptions one way or the other when these things were detected but did follow up promptly with the proper specialist. I have seen a whole bunch of "ologists."

I told my docs that I want to be "The World's Most Boring Patient." They think that is really funny but, alas, not an achievable goal. Wishing you prompt answers and lots of medical boredom.

[azaelea in reply to hunter5582]

I intend to go for a consultation with a gastroenterologist next, which the GP initially suggested on my first appointment but she wanted to have the scan first. I THINK I might have been successful in applying through NHS Patient Portal which was mentioned by Maggie Sylvie this afternoon. I’ve filled in an On line form of request which goes to the hospital concerned, so will see what transpires and how long!!my Haematologist didn’t think the Hydroxy was responsible for the liver thing but did agree that the increase in bilirubin is caused by it,a point I have relayed to the GP who wasn’t aware of this. You’re correct, we do have to “ join the dots” between our various medical advisors! Kind regards,Fran

[hunter5582 in reply to azaelea]

Sounds like a good plan. Hope you get records access soon. Answers to what is going on too.

All the best.

[Bluetop]

Oh, sorry to hear this. How were these identified? How long have you been taking hydroxy? I hope a satisfactory way of dealing with these -short and long term is found. Best wishes.

[azaelea in reply to Bluetop]

Hi Bluetop, these were identified with an Ultrasound scan after I saw GP as I suddenly developed really bad persistent nausea with right upper abdominal pain under my ribs at the side. It lasted about 2 weeks then thankfully wore off. As it took 6 weeks to get the scan appointment I don’t know what there would be to see, but they say several small cysts on liver. GP says cysts on liver don’t cause pain, but several articles I’ve read give exactly that pain as a symptom! I’ve been on Hydroxycarbamide for 4 years now. Regards Fran

[Bluetop in reply to azaelea]

I'm sorry you had to wait so long! I hope someone can throw light on the cause. I do so agree that t is so important for the patient to join the dots.

[EPguy in reply to azaelea]

Could be the particular location of a cyst relates to whether it can cause pain, part of the randomness of so many medical things. I had lots of organ pains from covid (original Wuhan strain) but it's better now, so probably not from the cysts.

[Wyebird]

Hi, Hope all is well for you. I had a liver scan just after diagnosis and a cyst showed up On that. I’ve been told it’s insignificant. I recently had an MRI scan( medical trial purpose ) and liver and kidneys are all good. I was on hu 17 a week plus 9 anagrelide For approximately 6 years

[azaelea in reply to Wyebird]

Thanks for your reply. I note you were on a high dose of Hydroxy and Anagrelide so it doesn’t look as if this caused your cyst. Glad to hear all is well with liver and kidneys in your latest scan. I’m following your posts re: trial with interest. Regards, Fran

[Andrew8]

Like all drugs Hydroxy has various side effects. After 6 months in 2016, I developed abnormal heart rhythm (AF) ( known side effect ) and after several other drugs was put on Jakavi Ruxolitinib, which I think is the most expensive, but even that has side effects, like symptoms of shingles such as itchy skin, but I manage that with organic Aloe Vera gel, but otherwise platelets remain reasonably stable, no other problems except perhaps magnesium deficiency which supplements can help. I have even survived Sepsis and Covid this year, and blood tests remain favourable, so have to be grateful.

[azaelea in reply to Andrew8]

Thanks for your reply. Glad they finally got you on the right med. wow, you must be resilient surviving Covid and Sepsis this year! Well done!

[Polly-PV]

Hi Azaelea,My situation is v similar to yours. Been on 500 Hydroxy for approx 7/8 years now and had an ultra sound on Wednesday. Showed several cysts on my liver, the largest was 1.4cm and a 4cm one on my right kidney. Only knew about that one when the radiologist ran the scan thingy over my right side and pressed and I flinched!

Seeing my haem on Thurs next week as I’m considering switching to interferon and he ordered the ultrasound. I’m pretty convinced the cysts are a side effect of the Hydroxy and not purely an age thing.

[azaelea in reply to Polly-PV]

Oh, very interested to hear your situation is very similar to mine. I’m convinced the Hydroxy is the cause but my Haematologist didn’t seem to think it’s the cause. It was my GP who ordered the ultrasound scan as I saw her in connection with the pain in my right side and bad nausea. I’m still trying to determine the exact findings of the scan, I.e. how many and measurement of the cysts. I’ve requested a copy of the report through the patient portal which Maggie Sylvie mentioned in her post. I see GP next week so will try for some answers again and when I next have telephone consult with Haemo might ask about changing to Peg interferon. Let me know how you get on . Kind regards, Fran

[Polly-PV]

Will do Fran. Stay well x

[Doxy46]

After 13 years on HU (now 1000 mg/day), reduced kidney function is my biggest worry since kidney disease runs in my family. My kidneys have some damage, but at age 77, my family history, and long term HU use, it is difficult to tell the cause.Would you give us an update on what caused the pain in your upper right abdomen and your ongoing kidney issues? I get sharp pains a little below my right breast. My GP thinks it is my gall bladder since tests showed I had some small stones. Wondering if your problem was gall bladder too.

[azaelea in reply to Doxy46]

Hi Doxy, Sorry I haven’t been able to reply to your question posted a week ago. We have been without our Booadband for a week and only today had it fixed. Regarding my right sided pain which occurs in the same place as yours, all tests proved negative, no gall bladder trouble and according to the doctors they can find nothing to cause this recurring pain. I would describe it as more of a very bad ache, not a sharp pain, but it also brings bad nausea with it. So I’m sorry I can’t throw any light on our problem. I dread it recurring again. They first suggested gall bladder with me but it isn’t. Good luck in getting to the bottom of what’s causing yours. Regards, Fran