Symptoms of ET or Hydroxy side effects?

[azaelea]

Hi MPN friends. I was diegnosed with ET after BMB confirming it in the middle of last year. I had no symptoms then and was put on small aspirin until going on Hydroxycarbamide 500 mg daily in January this year. I wonder if anyone with ET suffers with 1. Bone ache in upper back, specially after walking 2. Ache in Right side round waist (not Left which would be Spleen). 3. Upper arm ache, bone and muscle 4. Ache along pelvic area bottom of abdomen. I wonder if some of these are the Hydroxy as I know it can affect the liver and kidneys (Uric acid). I have Haemo,appointment on 24th July when I'll have my list of questions ready, but in meantime would like to know if any other ET Jak2+ people have suffered anything similar. Kind regards to all MPN'rs. Fran

[ccsial]

We all react differently. I was on 1000mg of Hydrea for 14 years for ET with no side effects other than easy bruising. I have read of others who can't tolerate it at all. If the side effects started with Hydrea maybe your doctor could try a different med.

[azaelea in reply to ccsial]

Thank you for your reply. I will see how it goes and discuss with Haematologist.

[jointpain]

Hopefully your platelets are in the normal range, if they are high then suspect that you have a blood clot somewhere. Only going to A and E and having a MRI scan will find it. I don't want to alarm you, but after last year's problems which still continue for my wife, I would go to A and E .

[azaelea in reply to jointpain]

Thank you for reply. My platelets are at present 372 (normal). Have fluctuated over last few months Began 702, 489, 586, and after Hydroxy down to 372. I know they do fluctuate and I've been having monthly blood tests by GP since going on Hydroxy. I have ache rather than sharp pain. Hope your wife is coping and I wish her recovery very soon.

[Photoshopuser]

It’s funny you mention pain around right waist. I have only been on hydroxyurea for about ten days but have a pain in the same spot but only at night. I thought maybe it was my hip. Never would think it could be related to the meds. Thank you for raising it. I don’t think it is in my case but will watch. Hope you feel better soon.

[azaelea in reply to Photoshopuser]

Hi, My ache is at the R side in the soft part of waist between rib cage and top of hip bone. It's not there constantly. Do you take your Hydroxy at night? Maybe why pain at night. I've tried night, then morning and now taking it mid day which seems to be better. The morning one wasn't mixing well with other Meds, so advised to try another time. Hope your pain goes eventually.

[Photoshopuser]

Mine is exactly where yours is. Only at night. Yes take it at night because it makes me sleepy. Didn't think of the connection as I said. But it's not at night when I am not going to sleep, so sitting on the couch I don't feel it. Thank you and I hope yours does as well.

[hunter5582]

Some of this may be related to the JAK2+ part of your MPN. JAK2 overactivation has been shown in the more recent research to create an increased inflammatory cytokine load. These cytokines are though to be responsible for many of the secondary symptoms we JAK2+ MPNers experience. Regarding the hydroxy - pancreatitis, hepatoxicity, and renal impairment are all possible side effects. Additionally, HU can compromise your intestinal endothelium. That is not to say the HU is responsible for any of the pain symptoms you are describing, but you certainly want to find out what is causing any kind of persistent pain. Pain is your body's warning that something is wrong. I am one of those who is HU intolerant. Others have no problem with it. Push to get answers ASAP. Assertive patients get higher quality care. Passive patients do not. Hope you get your answers soon.

[azaelea in reply to hunter5582]

Thank you for your informative reply,Hunter. I will certainly ask many questions when I see Haematologist next week. (They cancelled the one I was supposed to have a month ago as she was unavailable!! This the first one they could give.) fingers crossed this goes ahead. I note what you say about cytokines . I will certainly push for answers as I am a very persistent person when the medical profession are concerned. Thanks again,will be posting if I get some answers.

[hunter5582 in reply to azaelea]

Here are a couple of references re. MPNs and cytokines. There is more out there.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/244...

Definitely worth following up on the HU as well. It is a toxic substance that not all can tolerate. Because it is therapeutically weak, the doc often has to keep you on the edge of toxicity for it to have the max benefit. As a cytostatic medication that interferes with DNA activity, it does slow down hematopoiesis, but the benefits can come at a cost. Hopefully your doc will be open to exploring all possible explanations for your concerns. What is the MPN vs. the treatment side effects certainly needs to be figured out. Hope you get your answers ASAP.

[Lifam]

Hydrea had lots of side effects although not everyone will get that it will get the same, I've read joints pain can be one of the side effects

[azaelea in reply to Lifam]

Thanks for your reply. Oddly enough, my joints don't seem to be affected (touch wood).

[Jlah]

Hi. Yes I get pain in lower left back and then the odd twinge under left ribs. I also get upper back ache after a busy day. My mum plus nan had this and also both jak2+. Take care. Jacquie

[azaelea in reply to Jlah]

Thanks Jacquie, looks like it could be the Jak2+ causing it when your family members suffer this too.

[lavender007]

Hi Azaelea,

Very early on in my diagnosis of ET Jak2 pos I experienced really bad generalised bone pain have been on HU 1500mg since 2009 had a super high count then, now controlled. I am on Morphine,gabapentin and amitriptyline plus others, I have always accepted that this is how my disease presents rather than the HU being responsible.I must say I have not ever felt like I just accepted things.Personal coping strategies learned at Maggies centre and was very helpful.

I did have a very bad start with clot to my brain which has left me with memory probs. Drs always say that it is the disease plus the drugs that cause my memory probs, my pain can be really bad, maybe nievely I have always accepted this as part of the disease and am just glad to be alive.

I wish you well and thank you for sharing.

Lav007

[azaelea in reply to lavender007]

Thank you for your reply. So sorry to hear of your suffering. So far I can cope with these symptoms cropping up but I'm sorry to hear you have to take morphine and other drugs too. Hope things get better for you soon. Regards, Fran

[Camelian]

Hi azaelea I have ET jak2+ diagnosed 2018. My initial visit to the gp was because I was suffering terrible leg pain. I had a blood test which identified elevated platelet s and following further investigation and an apt with the heamotologist I was diagnosed as mentioned above. I'm only on aspirin at the moment but I do suffer from pain in various places generally my arms and legs which is sometimes excruciating but thank God it's not constant. Im 58 so do get aches and pains associated with getting older but this pain is different it's not something I could not stand for long. So in answer to your question your pain could be related to the conditioner although I don't get the stomach pain you mentioned so could possibly be a bit of both??. I hope you get some answers from your heomotologist at your apt. I'm dreading going on hydroxy it gives me nightmares thinking about it😭

[azaelea in reply to Camelian]

Thanks for your reply,Camelian. It does look as though the aches and pains are associated with the ET itself. I wish I could just be on Aspirin alone. I feel the same about Hydroxy as you but I'm classed as high risk as I'm the ancient age of 83. Will see what Haemo says.

[Camelian]

You're only as old as you feel as they say😛

A symptom I get which I forgot to mention is burning feet?? I didn't think it was connected until I read a post on here about others with ET expecting the same thing.

What age was you diagnosed with ET if you don't mind me asking?

[azaelea in reply to Camelian]

Just last year, same as you. Saw Haemo as GP noticed platelets high in February. In April got Haemo appointment, had BMB showing ET but in June found breast lump (cancer). Had Lumpectomy then Radiotherapy so had to stop Hydroxy which I'd just started as it doesn't go with radiotherapy, so by the time Haematology sent me a further appointment, it was February this year!! Far too long I think. The Dr I had seen had left so saw this other one ......not impressed at all! My appointment on Thursday is with yet another, at my request. So will see how it goes. My GP has been monitoring my blood results and platelets have come down. Will report on our Forum what the outcome is. Regards, Fran