I know those of you receiving chemotherapy for your MPN are more likely to show symptoms of being immunocompromised but I'm wondering about the rest of us who aren't receiving treatment yet.
In the past few months I have broken out with an HPV infection on my foot and hand. For years I have dealt with sinus issues that resist treatment. Constant UTI's. Anybody else fighting a similar battle?
My understanding is that Hydroxy in the kind of doses we are usually prescribed is unlikely to make a major impact on our immune systems. The anecdotal evidence on this Forum suggests that many MPNers find that they go down with more coughs / colds / infections and / or it takes them longer to recover than other people or in their previous experience. My guess is, if fundamental systems in our body are compromised then it may well compromise how we respond to ‘threats’ like infections. There are of course many people out there who do not have MPNs and also suffer the misery of regular sinus problems or UTIs and other infections. Always worth getting the ‘big picture’ investigated.
It would be interesting to know if MPNers who are on Hydroxy, which is working effectively, not only feel better generally but also find themselves less susceptible to common infections.
It has been my understanding through various articles I have read that just having a MPN in itself makes you immunocompromised even without treatment. I don't take any medication for my MPN. But I don't hear people talk about it much on here so I was wondering about other people's experiences. You pose an interesting question though. I don't seem to get colds very often but I am a little OCD about washing my hands and staying away from sick people.
A poster on another MPN messageboard that I am a member of recently said that her hematologist said having a MPN makes you more susceptible to skin cancer even if you aren't taking HU. I wondered why that was and after some research I found out that squamous cell carcinoma is more likely to happen in the immunocompromised.
I’ve never really had a clear steer on the immunocompromised element. My understanding is, that yes, the very fact of having an MPN can make you more susceptible to infection etc (which is why we get free flu jabs regardless of the age criteria) but that the doses of Hydroxy don’t put us in any kind of high risk category (as with more traditional chemo treatments). But since everyone’s MPN profile is unique I guess we’re all affected in different ways. It would certainly be interesting to know what elements of this disease are more or less likely to give rise to these issues and whether if the disease is effectively managed we’re no more compromised than someone of similar age and condition without an MPN. Inevitably there is often a mismatch between generalised catchall warnings and the reality of risk to / susceptibility of, the individual.
I hadn’t heard about the skin cancer risk other than related to Hydroxy. And even then while it makes absolute sense to take precautions there are some who argue that the risk is still very small.
It could all be a coincidence for sure. I never get the flu vaccine because I'm not sure how I feel about it and I never get the flu. That doesn't sound immunocompromised.
I'm not sure about the skin cancer rates in your country but in America approximately 1 in 5 people get skin cancer so I find that to be pretty high risk. I avoid the sun though due to my pale skin.
I can’t find a comparable statistic for the U.K. Apparently 1 in 2 people born post 1960 will be diagnosed with cancer in their lifetime and skin cancer is the fifth most common cancer. But headline statistics can be very misleading. There is a complex mass of questions and data to be asked and analysed before we can determine ‘So what does it mean for me?’ As far as the States are concerned you, at least in parts, have blazing sun and extreme heat. We on the other hand have a good deal of grey skies and rain. But when the sun shines we run to thaw beneath its rays - or escape to warmer climes. And those two things are our downfall. Umbrella kind of day today. But then it is Bank Holiday. 😁
Oh that's interesting! I have had seven rodent ulcers and no-one has ever pointed out the connection, although my haematologist appeared to be a little miffed when I forgot to mention having surgery for some of them. The others were treated as well, but not with a scalpel.
It's odd that I had eight BCCs a few years before being diagnosed with MDS/MPN, and there was no sign of it in my bloods a year before. Co-incidence or what I wonder. My diagnosis was not much in front of the covid shut down, so I haven't really been anywhere to catch any infections, nothing like what I went through in my childhood.
Hubby has more skin issues, catches the sun quicker, gets coughs colds etc... more in last few years than before. No medication either. I've done a bit of research & compared his blood results against it & it fits in with what is high & low in his levels compared with the 'norm'.
Hi clubdino, I have PV and not on any treatments yet , just aspirin and venesection <45 . Looking at my blood tests I had it in 2015 but only been dx in December 18. For the last 4 years I started suffering with hey fever and dust allergies . I never had it before . Also about 3-4 years ago I started getting urinary track problems and last winter and this winter I keept getting really bad cough . I recover form a long cough in January and I am having another one now . So I presume once my numbers started to go up also my immune system started being compromised .
Before diagnosis and treatment, I had ET for 7 years. I had kept all my blood tests from 20 years back. At the same time that my ET started, my histamine intolerance started. Increased colds, dizziness, the feeling of getting old quickly (it came when I was 45), sleeplessness, tiredness, numb fingered and tingling legs from age 48/49, incontinence from age 50, bigger lymph nodes, heart palpitations, headaches, bloating, diarrhea, constipation, forgetfulness, brain fog, waking up not rested, and more. TIA with 51, 52, then at 53 (bigger one) and diagnosis.
The change:
Meds immediately with 909,000. Anagrelid. One month later, I started on the AutoImmune Paleo diet, which changed my life and health completely within 7 months! Almost all my symptoms went away. I am sure that the diet was the main reason. The only thing that comes and goes, now is lightheadedness, brain fog and numbness in fingers, sleeplessness, but only when thrombos go up. I’m a jumper and difficult to stabilize. 450-670. Once I jumped to 756 and I had another TIA. (Last December) otherwise, I am healthier that 15 years ago. I only have noticed that the meds do a job on my stamina. I have to take more breaks during the day.
I am glad you asked this question. I’m curious what others will answer!
All the best.
Of course the Anagrelid helped. But no one has made this kind of progress or change in health in this massive clinic. The doctors are amazed. I went from 6 Anagrelid to 4. Once the body is relieved of allergens, pesticides, preservatives, chemicals, heavy metals, plastics, cleaning chemical and other daily insults, the body can only start feeling better and healing itself. On top of that, I feel wonderful that I am no longer responsible for dumping garbage and chemicals on the planet, except for Anagrelid and my car’s pollution. I’m working on that one. 🙂
Before diagnosis and treatment, I had ET for 7 years. I had kept all my blood tests from 20 years back. At the same time that my ET started, my histamine intolerance started. Increased colds, dizziness, tinnitus, the feeling of getting old quickly (it came when I was 45), sleeplessness, tiredness, numb fingers and tingling legs from age 48/49, incontinence from age 50, bigger lymph nodes, heart palpitations, headaches, bloating, diarrhea, constipation, forgetfulness, brain fog, waking up not rested, and more. In the 2 years before my diagnosis, I had 5 common colds that only went away with antibiotics after 2-3 weeks! (Since meds and diet, from 18 months ago, I’ve only had 1 cold, this March) that went away on its own quickly). TIAs with 51, 52, then at 53 (bigger one) and diagnosis (Sept 2017)
The change:
Meds immediately at diagnosis Sept 2017 with 909,000. Anagrelid. One month later, I started on the AutoImmune Paleo diet, which changed my life and health completely within 7 months! Almost all my symptoms went away. I am sure that the diet was the main reason. The only thing that comes and goes, now is lightheadedness, tinnitus, brain fog and numbness in fingers, sleeplessness, but only when thrombos go up. I’m a jumper and difficult to stabilize. 450-670. Last Dec., I jumped to 756 and I had another TIA otherwise, I am healthier that 15 years ago. I have noticed that I have to take more breaks during the day when my thrombos are up. Have been on meds and diet since Oct 2017.
I am glad you asked this question. I’m curious what others will answer!
All the best.
HU is recognized as an immunosuppressant chemotherapy (confirmed by my hemo office who sees it commonly). That is why you cannot have live virus vaccines while on it. Two of the more common immune-related symptom are mouth ulcers and Thrush. HU response varies from person-to-person. I encountered immune issues (and others) on a relatively low dose (I am HU intolerant). Others do not experience that. Risk benefit profile is unique to each person. It can lower you resistance to a variety of ailments - avoiding exposure is recommended.
As far as I know, interferon also hits the immune system, as my doctor said, more than HU. I’m on Anagrelid. Since I’m fixing up my imm system, and am much less susceptible to illnesses than 25 years ago, I will no longer be taking vaccines except tetanus and maybe hepatitis. Before I am vaccinated, I test immunity. In Austria they Tell us to take the FSME (1/8 ticks carry a virus that causes meningitis) vaccine every 3-5 years. I still had enough immunity at the 13 year point! Also with hepatitis and tetanus. I only get those when absolutely necessary. All the best.
Yes! I also had mouth ulcers often while on HU. My skin became dry and cracking, I’m brown skinned so the palm of my hands, fingers (toe) nails and bottom of feet all turned dark. When I stopped taking it everything returned to normal. I haven’t took anything lately and sure my counts are up. I’ve had vertigo and ear infections that I’ve never had before.
Get the occasional UTI (rare in men) and more colds etc than I used to. They seem more severe too compared to if my wife gets them at the same time (although obviously she’ll say this is me being pathetic and probably not without some truth!)
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Cheshire Hospitals
How to register as high risk if you have not already been informed that you are on the register
GP cancelled my free prescriptions as doesn't classify ET as a blood cancer, and even if it was, I'm not recieving ongoing treatment!? 
MPN Specialists in Uk
