I was on hydroxicarbomide for three years steadily increasing my dose to combat my platelet rise. In addition just over a year ago anagrelide was introduced. Great results until side affects allow me to only take 9 a week alongside my hydroxicarbomide. Now over the last 12 months my platelets are very slowly rising again. Help! what is the next option? I’m already taking 17 hydroxi and 9 anagrelide a week. I know an increase of even one anagrelide is no good as I recently had to drop 1 and raise hydroxi by 1
Feeling drained and low!!
I have a phone consultation on Tuesday.
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Wyebird
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No, I’m on hydroxy which suits me, I remain stable.
It just seems to me that you’re struggling to control your counts even with a combination of drugs. There are not many more options other than Pegasys. This has been a wonder drug for many on this forum.
Maybe approach the question in your telephone consultation and see how it goes from there. I believe you’re under the top hospital, so they should be able to advise.
Yes I am thank goodness. Last time they rise I was told what do you want to do increase hydroxi or anagrelide . It wasn’t offered to me then. It’s because I’m under top hospital that I thought I’d wait to see what they say. I’m also scared. Is that the only alternative?
Thank you so much for replying I really appreciate it.
What are your counts and have they risen much? It maybe just a question of titrating the doses of both drugs again.
Don’t wait to be asked about Pegasys, that may not happen. It is expensive. Throw the question out there, and see what response you get. If you were lucky enough to be offered this drug, you can take heart that you’re under the care of MPN experts.
At the moment platelets are 426 last summer 359- I’ve been breathless and fatigued more than usual but put it down to trying to increase my daily exercise after surgery in my foot in January but now I know it’s due to platelets over 400. They were 419 in December that’s when we tweaked my meds. so very very very slowly they have risen since last year. For the first 6 months I was stable but over the last 4 they have risen !!!! I’m being seen approx every 21/2 months so they are monitoring me well. Think you are right about asking about Pegasus. Think really I’m very frightened about that not working too. Thank you so much for listening
It may well be that your platelets come down on the next blood test . Although, they are well within the 450 cut off.
I think I remember you saying that you’re anaemic in the past. Is your haemoglobin/red blood counts ok? This could be the real cause of your fatigue and breathlessness rather than a small increase in platelets.
Discuss your concerns when you have your telephone appointment (write them down now). I’m sure they will put your mind at ease.
Sorry you are having such a difficult time. From what I understand, the combination of the anemia with so much medication is causing your fatigue. I saw my hematologist yesterday and my platelets were 522 but my hemoglobin was 11. When I first stated seeing her in September, it was in the 9’s. I was going to see her every week for 4 months for lab work and a possible EPO shot. Whenever it went below 10.2, I got the injection. Also, when I started with her she took me off anagrelide and put me on Inrebic. I also take hydrea and baby aspirin. When I told her yesterday I was feeling fatigued, she said it was probably the medication. But she feels I’m stable now, and my visits are now every other month. Just thought I’d give you my experience and some things to think about.
Sorry only just noticed this reply you had an epi injection with heamoglobin below 102. Are you uk based? I’d love to try an epo injection to see if it helps. Did it help you? Inrebic I’ve never heard of that. I’m going to research that too. Thank you so much for your input.
Inrebic is the generic for Fedratinib. I’m in the US and it was approved for MF patients last August. I had ET since 2008 which progressed to MF last year. Yes, the injections really helped. I haven’t had to have one in over 3 months. I’ve been feeling really good the last few months, relative to my extreme fatigue and lethargy prior to my changing to her last September. What is your diagnosis?
There are other options that may work better. You have already identified Pegasys. There is also Ropeg, a longer-acting form of PEGylated Interferon. Ropeg has been found to be superior to HU in some studies. The interferons may also be superior in treating the constitutional symptoms of a MPN.
Variation in platelets from 359 to 426 is well within the normal cycling of platelet levels. Platelet levels can vary by as much as 100 in one day according to my hematologist. It sounds like you have learned to associate platelet levels with other symptoms. I would suggest that what is going on is actually more complex. Platelet levels have nothing to do with things like fatigue and breathlessness. That would be more related to red blood cells. It may also be related to other aspect of your body's chemistry (e.g. inflammatory cytokines) that drive both constitutional symptoms and platelet levels.
Given that your platelets are so well controlled, it sounds like the greater concern is the fatigue, breathlessness and whatever other symptoms you experience. Something to remember is that dyspnea and asthenia are very common side effects of HU. So is anemia. It sounds like you are taking a fairly high level of HU at 17/week. At that level, some form of adverse effects is more likely. What is hard to figure out is what is being caused by the HU vs what is being caused by the MPN. I would be more suspicious of the side effects of HU at this point, but I have no way to truly know whether that is true.
I would certainly think a very clear conversation with your doc is in order. I absolutely would pursue one of the PEGylated Interferons if I was in your situation. A someone already mentioned, the interferons are more expensive. Many systems of care will try to use cheaper medications first. You may have to push to pursue this option if you want it. My mantra has become - Assertive patients receive higher quality care. Passive patients do not. Please do advocate for yourself and what you believe to be in your best interests.
Thank you you have given me so much to digest. Yes my platelets are within range but they are constantly rising and thus my medication is rising too. In addition to the 17 hu I take 9 anagrelide also. I think a telephone consultation will allow me to be a little more assertive. Fingers crossed for Tuesday xxx
All the best to you and being more assertive. It is your right to receive the best possible care, but also your responsibility to assure that you receive it. If the side effects of your meds are intolerable or the tx protocol is not working, just say so clearly. The doc works for you and needs to listen to what you have to say. The doc makes recommendations about your treatment. You make the decisions.
I am quite certain that you can advocate for yourself. You deserve the best possible treatment options, but may only get that if you make it so.
May I ask if you have had blood tests to check you dont need vit B12? I have noticed there is an interesting link between developing MPN s and low iron, sometimes caused bt a Vit B12 deficiency.
My b12 is mid range my iron level transferrin saturation and total iron binding capacity are all within range. Although my iron level did dip and I was put on 1 iron tablet a day . I can’t have more than that because my ferritin becomes too high which impacts on the liver. I just can’t make haemoglobin!! I take magnesium because someone on this forum suggested it could be beneficial. Now that level has also been checked. I actually believe that would have been very low if not for the supplements I’ve been taking. So thank you to whoever suggested taking them.
This is why I have to balance my meds and platelets. My immediate concern is what list of options available to me.
It’s just the consistent rise of meds I have to take to balance the consistent rise in my platelets.
Before diagnosis I couldn’t understand why I wanted to lay down all the time whilst I was on holiday and 6 months prior to that I wasn’t filled with adrenalin and my son’s wedding. Why didn’t I want to dance. Something I love to do. I just made myself do it for fear people thought I was miserable. Reason - my platelets were up then but dismissed by gp as nothing to worry about.
This is why I know that above 400 and I become a sofa slob.
Many many thanks for responding- it’s so heartening to know someone is listening. I’m fully aware people on this forum are worse than me. Yet still I’m fighting the despair I feel.
take it really steady. Its a bit of a relief to know , you have been really unwell and your body was doing the right thing to get you to rest. At the time you were probably thinking, what is wrong with me? I remember walking up a hill and thinking , Come on, you have got some muscles there, it felt like I was a walking skeleton.
A tricky condition which creeps up, often found by chance.
Thank you for all your comments, its this excellent forum that helps us all support each other.
If it helps Wyebird My platelets are always in mid 500s to 800 go up a d down I have been on 21 hydroxy a week for abt a year now I believe your platelet count sounds pretty good x
Yes they are good but only because I keep on increasing the dose- and have been doing so for about 4 years that’s the problem . I’m in range because my meds increase approximately every 4 to 6 months
Hi. To put your mind at rest your platelets are not very high. No need to change anything just for that! Also the tiredness that you feel is due to Hydro and not platelets. That's from my personal experience.
Thank you very much for your input. The problem is that they are always rising rarely have they dipped. My meds are being increased in order to keep them 370-400
Wyebird, while my wife was on Anagrelide after stopping hydrox her platelets remained over 900. My research found tocotrienol from red palm oil can reduce platelets. With her oncologists approval she used 50mg twice a day while on Anagrelide resulting in the platelet count gradually lowering to the normal range. Consult your health care professional before using any supplements.
Hello Pte82 - yet again this wonderful forum has thrown up some really good informative research - I screen shot loads + tuck them away in my ‘medical’ folder for ‘ammo’ should my condition/s decide to start misbehaving!! - thanks (+ hope it helps wyebird going forward). Anne-Marie.
Yes, only red palm tocotrienol lowers platelets. Also research
essential thrombocythemia signaling pathways using curcumin as an inhibitor. Liposomal curcumin offers great absorption. Check out liposomal vitamin C as an inhibitor as well as astaxanthin.
Wyebird, vitamin C regulates the synthesis of the structural protein collagen. Collagen fibers protect the integrity of the skin and blood vessels preventing bruising and purpura. I encourage you to investigate vitamin C especially it's role in heart health and the benefits of liposomal vitamin C.
I also have rising platelet issues but I am Post ET / MF taking Ruxolitinib & low dose aspirin.
Mine are around the 1M mark again after months of being between 800-900s. However, yours are sounding like they are well within the normal range of 150k-450k?
My only real thoughts are can you receive Pegasys in the UK now?
If so, make the switch, and lose the HU & anagrelide if possible...
If not available still in the UK, then I suggest that you form a Representative Body & lobby the NHS for inclusion of approval of Pegasys for MPN patients ASAP!
Failing that, there might be a Clinical Trial (CT) available in the UK, where other alternatives could be possible (?)
I am doing the same here, and hoping to access a CT for a combination therapy w/ Navitoclax & Ruxolitinib, however, we are awaiting the end of the CV-19 pandemic, and all bets are off until that has passed etc.
Best ask your MPN Specialist at your upcoming Tele-consult' etc.
Thank you for replying, yes fortunately I’m under a leadingMPN specialist although I don’t see her very often now I see one of her team.
I think there is Pegasus available
Although my pallets are in range I do suffer once they rise above 400- I’m lethargic every footstep an effort that then makes me low. It’s not in my head either. Before I saw a heamo not realising anything was wrong I went to the chemist and bought iron tonic thinking I was anaemic.
Sorry to hear that you are feeling rather "drained and low", hopefully some of the comments above will have raised the spirits somewhat. I do know how it feels when options seem to run out and there doesn't seem to be a "plan B" or C for that matter!
I'm in a situation myself where interferon was no longer an option due to an unfortunate auto-immune response, and Anagrelide is unavailable, so I had to return to hydroxyurea in order to have some control over platelet numbers. I have elected to stay on only 500mg per day of hydroxyurea, in the knowledge that this dosage is not too problematic for me with side effects and will at least stop my platelet numbers running away to ridiculous heights. Currently they seem to be holding at around the 650 mark, which is far better than the 1280+ that I got to before being put on medication to bring numbers down. My haematologist doesn't really approve of my regime, but I have somewhat better quality of life, for which I am exceedingly thankful. I should add that I also have daily low dose aspirin, which I know has been of great benefit.
Oh Peter your unfortunate circumstances push my situation into insignificance . Are you based in the UK. I got anagrelide delivered last Thursday. Why the shortage- 500mg a day of hydroxi is a low dose. Would one extra a week really upset your body?
I'm living in New Zealand. I discussed Anagrelide with my haematologist 5 or 6 months ago, but she said that it wasn't an option for me because there was so little of it in the country that they simply didn't have enough of it to go around the patients that were already on it, let alone prescribe it to someone new.
I had attempted to move from Hydroxyurea to interferon, but suffered an auto-immune reaction that caused a potentially serious sort of eye inflammation. This was most disappointing as, even though I couldn't get Pegasys here and was on the "old fashioned" sort of interferon that you inject 3 or 4 times a week, I was showing signs of doing really well on it.
I have some difficulties with Hydroxyurea as I suffer really nasty mouth ulcers when on it at anything more than 500mg per day. I understand from reading about a study that was done in Italy some time ago that about 2 people in 1000 have this reaction to Hydroxyurea, so it happens, but isn't common. The rheumatologist that I saw regarding the auto-immune problem put me on colchicine, which I take daily, and this has helped a great deal in reducing the pain from the ulcers, their size, and how long they last, and that is marvellous!
I feel fortunate more often than I feel "unfortunate" though, as there is so much to be thankful for.
Wow sorry you are unable to get a angrelide. I was thrilled when they suggested it to me. I actually think it does control my platelets better. I was put on it in addition to hu in the hope I could fizzle out the hu. Unfortunately my body limit is 9 a week. I think you have a lot on your hands. Finding yourself having to deal with reactions is no joke. I get mouth ulcers at one time five almost simultaneously. I was lucky they didn’t really bother me so must have been small ones. Now I get the occasional one. To constantly have to tolerate them must be awful.
I do hope that you continue to stay positive. I usually am until I ‘m faced with rising platelets or fatigue that hits me like a sledge hammer if I’ve been busy.
You take care of yourself wishing you could health.
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confused about options 
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