I had a rare FTF meet with my Haematologist and raised the point that the side effects of Hydroxycarbamide are increasing - usual fatigue & breathlessness (this can also be attributed to my Atrial Fibrillation of course) , pruritis itch in all parts, actinic keratosis on my (bald) head, peripheral neuropathy in arms and toes, erythromalalgia on upper part of feet. His suggestion is to drop the HU for two weeks to see if the symptoms abate and research Anagrelide and Peg. My questions are
Do symptoms get worse with time?
Are the side effects of the other treaments any less annoying?
Has this approach worked for anyone else?
Does either medication affect Coeliac or Atrial Fibrillation (bisoprolol beta blocker) or interact with Diclofenac (chronic lower back pain)?
If I carry on with HU afterwards and don't change, is there any useful aids such as antihistamine for the Pruritis? After all increasing my Magnesium intake has sorted the restless leg syndrome and Efudix sorted the sun damage........
P S has anyone developed measureable improvement to immunity following the third Covid19 jab? I am trying hard to shield while awaiting better news......
It can be a bit difficult to sort out what is what when symptoms can be caused by the MPN, by the medication(s), or by an unrelated condition. The timing of when the symptoms began is one of the clues. If the symptoms disappear when you stop the medication, that is another clue. Note that some symptoms take longer than two weeks to disappear when they are medication side effects.
HU is well known for a variety of adverse effects on skin including rashes. scaling, hyperpigmentation, and atrophy. Peripheral erythema and peripheral neuropathy are also known HU adverse effects. Likewise fatigue and breathlessness. Many of these adverse effects get worse over time when you experience them. HU is a toxic medication and not all of us can tolerate it, though some clearly do tolerate and benefit. I am one of those who could not tolerate HU.
I have tolerated Pegasys 45mcg/week quite well. It is controlling the erythrocytosis and thrombocytosis and I have had no adverse effects at all. That is my experience; however, do note that PEG can have significant adverse effects and some people cannot tolerate it.
PEG and HU are considered fist-line treatment options for ET. Anagrelide is a second-line treatment option due to its higher incidence of adverse effects. It usually is reserved for people refractory or intolerant to the first-line options. Again, like all things in MPN treatment, we are all different. Some people tolerate anagrelide better than other options.
Regarding drug interactions, here are the results from ePocrates. Do verify this with other sources.
ePocrates MultiCheck Results
Monitor/Modify Tx
anagrelide + diclofenac
monitor bleeding s/sx: combo may incr. risk of GI or other bleeding, incl. life-threatening (additive effects)
Monitor/Modify Tx
bisoprolol + diclofenac
monitor BP: combo may decr. antihypertensive agent efficacy (antagonistic effects)
Additional Considerations
peginterferon alfa 2a in Pegasys
when used to treat HCV, caution advised w/ narrow therapeutic index drugs extensively metabolized in the liver; viral eradication may improve hepatic metabolic function, decr. levels, efficacy of concomitant drugs
You can check the drug monographs at various sources for medical contraindications for Pegasys and anagrelide. Here is what is listed on ePocrates.
Pegasys Contraindications / Cautions .
• hypersens. to drug/class/compon.
• autoimmune hepatitis
• Child-Pugh Class B or C hepatic impairment
• neonates, infants
• caution in female pts of reproductive potential
• caution in elderly pts
• caution if psychiatric disorder
• caution if ANC <1500
• caution if Plt <90,000
• caution if Hgb <10 g/dL
• caution if renal impairment
• caution if cardiac dz
• caution if thyroid dz
• caution if diabetes mellitus
• caution if autoimmune disorder
• caution if eye disorder
• caution if pulmonary dz
• caution if organ transplant
Anagrelide Contraindications / Cautions .
• hypersens. to drug/class/compon.
• breastfeeding during tx and x1wk after D/C
• electrolyte abnormalities, uncorrected
• congenital long QT syndrome
• QT prolongation
• QT prolongation family hx
• torsades de pointes or hx
• ventricular arrhythmias or hx
• bradycardia
• recent MI
• CHF
• caution if hepatic impairment
• caution if cardiovascular dz
• caution if smoking habit changes
There is a lot to consider in making treatment decisions related to MPNs. While this forum is a wonderful resource, it is very important to consult with a MPN Specialist regarding these decisions. Most hematologists do not have the KSAs to offer optimal treatment. If you do not already have a MPN specialist on your care team, this would be the time to seek expert consultation.
All the best to you. Please let us know how you get on.
When I suffered from aquagenic pruritus I found that anti histamine very helpful. I took fexofenadine as needed, one about half an hour before I got out of bed was the minimum.
Hi, I don’t know why but I don’t think we can take diclofenac. I used to take it years ago. Your haemo will advise you. My fatigue has improved a lot since being on Peg.As for symptoms increasing over time I’ve always wondered that. I’ll be interested to see what others say.
Numerous studies have examined the use of all NSAIDS showing up an increase in MACE (Major Cardiac Events ( Atrial fibrillation or flutter, Ischaemic stroke, Heart failure, Myocardial infarction, Cardiac death)) There are also concerns about stomach bleeds.
Diclofenac shows the largest increase of the usual NSAIDS compared with non use.
In my case I have chronic lower back pain and have used Diclofenac for many years; following a TIA, in the following 18 miserable months, I tried all available alternative pain control agents apart from opiods and went back to Diclofenac with the agreement of my Cardiologist and GP - result = QOL....I may have a slightly higher risk of MACE but I wake up each day happy and life goes on............
Hi. I can't answer most of your questions but I can tell you that I had an antibody test about 3-4 months after my 2nd vaccine and it came back saying i had no detectable antibodies. I then had my 3rd vaccine and 10 days later I had another antibody test which told me I had antibodies. Unfortunately no idea of how many or what quality they were so I am still sheilding. I have PV and I am on Hydroxy. All three vaccines were pfizer. Hope that is useful.
I’ve been on peg now for well over 2 years. Now 45mg (was90 to start). Side effects aren’t too bad and limited to about 48 hrs max.No change in side effects so far as time has gone on.
I can’t compare to other treatments as only had peg but it’s doing it’s job & personally I’m very pleased with it.
I have Et Jak + I am on Hydroxycarbamide too. I worry about the actinic keratosis . I have developed this on my scalp . I feel like dropping the drugs . I have controlled the platelets on hydroxy. My skin is very dry and I just feel the toxins aren’t doing me any good.
You can see in my other posts my thoughts that we should ask our Drs about PEG. It is the only agent available that has a potential to reverse the course of the disease by its demonstrated ability to reduce allele. Some Heams are not yet aware of this fact, but I think most are catching on quickly lately.
It has traditionally been Rx for younger patients, but the Continuation PV study and others show it can also benefit older people.
You have a particularly good opportunity to ask about it since you are having trouble with HU as Hunter notes here.
I will soon start efforts to switch to Besremi INF, which has just been approved in the US, from HU. I have discussed with my private insurance Co and I will post what I am learning about that soon. It seems promising. I've heard UK NHS is not keen to approve it over Pegasys however.
Anagrelid is probably the least harmful and most expensive ET treatment. I took HU once and had neurological problems. Stopped it immediately. HU also does a job on many different cells in your blood, while Anagrelide targets only the thrombocytes.
It causes me heart palpitations when pills are taken at the same time. I space them over the day. Also, taking 2g of the amino acid Acetyl l-carnitine and 100mg of CoQ10 daily has stoped the palpitations all together. I’ve regained my strength and mind.
Regarding back pain, they to get off the analgesics and use natural pain killers like turmeric or CBD. The less chemicals your hot your body with, the better. Make sure your magnesium is a natural one. The others are not well absorbed. All the drugs you’re taking are harming your digestive system, which is the Center of good health. If you’re can find a really good natural doctor, they can then help you get your body generally in better form and your life will be more comfortable. There’s so much you can do for your quality of life!
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