Viruses

[Bobthecob]

Morning MPN people. I have ET jak2 diagnosed in 2000 treated with Hydroxycarbamide. Having just picked up a tummy bug and it lasting a whole week, I would be interested to hear from anyone who feels they are more susceptible to viruses, infections even cold sores and feel they last longer and take a greater toll on their system. If I pick up an infection it really seems to knock me off my feet. Thank you for reading.

[Mwalimu]

I have the same problem … once I pick something up it seems to go on forever. I asked my haem if my immune system was compromised because of my daily intake of HU (1000 mg) butt she said not and quoted my blood figures (WBC , I think) to prove it.

Nevertheless, my chest infections - as at this moment - drag on despite a healthy diet. (Now on last day of 7 day course and will have to go back to the doctor tomorrow). I have considered seeing a nutrition expert but feel my ET rather muddies the water.

Any suggestions to make me stronger ? I was diagnosed in 2011 and am 77 years old. Sallie

[Bobthecob in reply to Mwalimu]

Thank you for replying, I too have asked my haematologist about suppressed immune system fatigue etc, they then refer to the blood results and say they cannot see why this is happening. I hope your chest infection clears soon Sallie.

[Wyebird in reply to Bobthecob]

Fatigue is a symptom of an MPN

It’s also a side affect of hydroxicarbomide.

[Searcher56 in reply to Mwalimu]

Yes, seeing a dietician may help. You say you eat a healthy diet but is what you eat suitable for your particular type? We are all different and lots of experimenting is needed to find out what suits you as a unique individual. I am currently looking into blood type diets, I am O+. Dr Peter D'Adamo has written books on blood types. You could look him up on Internet. Not saying that is going to be the answer but definitely worth experimenting with. I was on a vegetarian diet over 20 years ago, at the same time I developed soreness in my hips and upper thighs and could not understand why. Then it dawned on me that it must be the vegetarian diet, went back on meat and the soreness disappeared. Having experimented I have infallibly proved to myself that veggie diet is not for me.

[Hidden]

I have just recovered from the shingles virsus, lasted approx 1month. I think I got of lightly going by what I read I have ET Calr.

[EleanorPV]

I’m not looking forward to my 4th winter with PV. Ever year my immune system seems to struggle more. This year I intend to avoid antibiotics and eat healthy. I think I started antibiotics too early last year. Time will tell if my plan is sustainable.

[Osteomyelio in reply to EleanorPV]

Eleanor my doc has me on “suppressive” antibiotic therapy to help prevent bacterial infections, but it doesn’t prevent viral infections. Did your doctor find an offensive bacteria that is being treated?

[Osteomyelio]

I was ill on HU and my blood tests showed EpsteinBarr (mononucleosis). When I feel ill I request my doc to order “titer” levels of possible offending viruses. I don’t know if it has anything to do with HU at all. I was given a publication: “The Impact of Viral Infections on Hematopoiesis” authored by M. F. Pascutti. I don’t know how to post a link to the article. It is on pubmed.gov. Since this article was explained to me, I have requested to be checked for virus when I feel extra fatigued. If someone knows how to post the link to this article it may be educational to some of us trying to learn how microorganisms can be detrimental to our bone marrow. Does anyone know if some meds lower our resistance to illness?

[Osteomyelio]

ncbi.nlm.nih.gov/m/pubmed/2...

Found link to viral infections and bone marrow

[Bobthecob in reply to Osteomyelio]

Thank you I have just read the link and found it interesting.

[h2ogal]

Yes to everything taking longer to heal from & being more susceptible to any illness. Jax2, ET diagnosed since 2016, hydroxy 500 mg daily. I have become one of those people who won't touch a doorknob unless I pull my shirt sleeve over my hand and if you have a child who is coughing all over me in line without covering their mouth, I'll leave. Do parents not teach their children to cover their mouths anymore when they cough or sneeze?

When I brought up to my new haematologist that my white blood cell count was flagged as below normal she said, "that's a good count for someone on chemotherapy". Now looking for new haematologist.

May all your blood draws be painless...

[Bobthecob]

Thank you for your reply, I work in a school and thought I had developed quite a strong immunity to bugs etc over the years, I am just surprised how long they last and how they leave me feeling.

[wotan10]

Good morning all sand greetings from Fleetwood England.

Yes I know when I get bugs especially DAnd V it takes a bit longer for me to recover.

Viruses are harder to treat. Rest and relaxation ,keep away from children in winter, good hand hygiene, perhaps a word with a herbalist if your team are a little UN co operative???

All will be well.

Keep calm and carry on.

[Bobthecob]

Thank you for the advice, I work with children in a school so find it a bit hard to steer clear of them😄 I do carry hand sanitizer with me. Thank you for your response

[kiwitraveller]

I read that you were more prone to infections on hydroxy I got a small cut gardening on my finger which quickly got infected and it took weeks to heal and I had to have a course of antibiotics.

[katiewalsh in reply to kiwitraveller]

Hi. Just remembered something about gardening. This really surprised me & seems strange but unfortunately it’s true. There are all kinds of bad things that can arise if you garden without gloves-something I never remember to do-including the things tetanus shots are required for. The germs or whatever they are get into the soil. You don’t even have to come in contact with rusty Metal, etc to catch it. Katie

[Bobthecob in reply to katiewalsh]

Thanks Katie, I will certainly remember that next time I am doing the garden. Hope you are keeping as healthy and happy as you can

[PhilReade]

Hi I’m on 1500 mg hydroxycarbamide daily had a splenectomy in 2014 I’m the same I’ve had infections had 4 different antibiotics to clear a chest infection recently

Also my stomach is so temperamental now I’ve started taking Kefir probiotic daily which seems to help most super markets sell it now

Regards

Phil

[jillydabrat]

Most definitely. My 96 year old mum is in a nursing home. I dread visiting in the winter because of all the colds and chest infections going around. We almost lost mum to the flu 2 years ago. Because she was so ill I spent every day with her but I wore a surgical mask which kept me safe.

I have become a prolific hand washer or I use bacterial hand gel in public toilets as not many people wash their hands after toileting and then they use the door handle - not nice.

Other than getting sores on my face which my doc can’t explain but for which I was given antibiotics which didn’t help, I have been very luck avoiding infections, touch wood.

[Hydrox]

I too have problems with infections and viruses, any small cut or scratch takes ages to heal. Also I dread getting a cold or the flu as it knocks me off my feet literally. My WBC is 3.8 so I think this must account for some of it. I am Et Jack 2+ 7 years now. After reading the other replies it seems we are all having similar experiences.

[Lifam]

Yes, definitely with HU, when on any chemo medications our immune system will be lower than usual. I wear mask when go to supermarkets or any public places like restaurants especially in winter wile lots of people having flu or some sort of viruses, because we're on chemo drug we have to try our best not to be infected by anything, if we do it'll take us much longer to recover, sometimes can be more serious than other people. Public places with door knobs or handles, hand rails etc I would not contact with bear hands, because my own health is more important. Look after ourselves as much as possible. Hope you guys recover soon.

[stillkicking]

Hope you are improving. A week for a tummy bug is no fun at all. I'm not sure if I am any worse than before regards picking up illness as I have always found it easy to pick them up and hard to get rid of them! I have wondered if in my case developing ET later in life has been an outcome of an immune system that has never worked properly.

Kind thoughts,

Peter

[Bobthecob in reply to stillkicking]

Thank you for replying, are you taking Hydroxycarbamide, and how old were you when ET was diagnosed. I was diagnosed aged 37 and will be 57 after Christmas.

[katiewalsh in reply to stillkicking]

Hi. Have you ever had a doctor checked to see if you have a Primary Immune Deficiency? I was diagnosed with that many years before my MPN was diagnosed & there are ways to minimize it with treatment. Katie

[Bobthecob in reply to katiewalsh]

Hi Katie, I have never had that checked but it is certainly something I will asked to be looked at . Thank you once again

[stillkicking]

I have been taking hydroxy for a year and a half, and was on aspirin only for a year prior to that. I must have been 57 or 58 when I got the ET diagnosis... It is not yet 5 in the morning and my maths is not the best! Sorry you have had this from such a young age. It really can have a real impact on life and work.

Kind Thoughts to you,

Peter, (not quite awake!)

[katiewalsh]

Hi. I’m sorry to read about all of you who experience similar problems to Bob’s. But at least I now know I’m not alone. I could never figure out why things changed until a few of my docs said it’s the Hydrea. I just finished 3 1/2 months healing from a dog bite to my leg. Scratches & cuts get infected & heal very slowly. And now my respiratory infections require me to use oxygen 24/7. (I suffered serious lung damage years ago from Pulmonary Embolisms which made my lungs weaker.) Also, injuries to muscles & tendons don’t heal properly either. I’m told it’s all because of the Hydrea. Some tips for cuts: spray them with Puracyn (after washing with warm soap and water & blotting dry). Unlike other wound cleaners, this only kills germs, not healthy tissue. Let the Puracyn sit 5 minutes to soak in deeper before dressing it. I use a prescription ointment called Mupirocin for cuts and scraps because it works. And apply it twice daily. Mupirocin can be found online or in some US drug stores. Your pharmacy may have to order the Puracyn for you. I’m not sure if these are available outside the U.S. I also don’t touch the handles on doors after washing my hands in public but use my shirt/sweater or paper towel. I carry hand sanitizer to use as soon as I return to my car & wash my hands the minute I get home. You can buy thick cotton masks from Amazon which are at least a little better than the thin ones at pharmacies. You can also buy large packs of thin cotton gloves for anytime you’re concerned about germs. I use them when flying. And a scarf around your neck, or your shirt or sweater sleeve can be put over your nose to breath through if you lack a mask. But I learned at the “wound clinic” that we need lots of protein to heal as well as vitamins D, C & a little magnesium. Because I don’t eat properly I get those in vitamins. The amount of Protein needed is surprisingly large. I’m overweight now and at 5’7, 175 lbs., I was told I should have around 80(!!) grams each day. Increasing my protein intake was difficult but did speed up my healing. Don’t know if any of this is helpful. We all need to be extra cautious. Hope you all stay healthy this winter. Katie

[Bobthecob]

Thank you so much for all the tips and advice Katie. Although it isn't nice to hear of others struggling it is reassuring to hear others are having the same issues especially when a haematologist cannot see a reason for these issues in our blood work. Take care and stay healthy