MPN Voice

Hydrea, immune system and Vitamin C

Hi everyone.

First of all, I wish you all a very happy new year and one that's as healthy as possible.

My year is not ending well! I have nasty cellulitis on my left leg, for which I'm on a course of pretty strong antibiotics. I've had cellulitis a number of times but not for quite a while until this latest episode. This infection is the latest in a string of infections over the past few months including 2 bouts of cystitis and a long lasting cough for which I had an X ray. (all was well).

I have PV and I'm on 1 tablet of Hydrea Monday to Friday. I've had no problems with the medication and am regularly monitored by a good haematologist. The problem is that my immune system seems to be really compromised. I get infection after infection. I'm writing to ask if anyone knows of anything that will boost the immune system. I talked to my GP about vitamin C yesterday, but she was wary of very high doses of any vitamin. The pharmacist thought that the 1000 gram soluble ones would be OK and I have some ready to use, but I'm wary. Any advice/ experience would be very welcome. Thank you.

PS Sorry for the moan. I know that I have very little to complain about compared with some others on this site.

Sandra

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Hi Sandra, I was pleased to meet you at the London Forum.I looked around to say 'cheerio' but you must have departed ....the play we guessed. Sorry you are not bien Sante at the moment.My G P here prescribes me a monthly vit D,and she and the nurses recommend Royal Jelly,fresh if you can get it. Helps the compromised immune system we have.Surely Vit C is ok as long as not too much of it or any vit which passes out of the system anyway.....all docs seem to have their own opinions.

The minute it gets to busy shops etc ,I end up with a cough,then bronchitis,so me too on a low just now. I was lucky to keep going at the forum,was so tired,next day I could not cope at the show! My reds have shot up again as consultant reduced Hydrea to two per day instead of three as plaquettes tumbled to a very low level.Its like snakes and ladders this maladie......what next will come to add to the rest! I gave my G P all the info I could pick up at the forum,she is keen to read it all.Must admit a lot did go over my head,need to see the video.

Hope you soon feel better Sandra ,Best Wishes for 2018 xxSally

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Thanks Sally. Yes, it was nice to meet you and your husband too. I do take vit D in the Winter and I think I will take the vit C . My GP mentioned some "...osis" (I didn't catch what she said), but it was a nasty consequence of vitamin overdose!

The pharmacist seems to think that the amount of vitamin C that she is recommending is harmless, so I'll go with that. I'm not sure about the Royal Jelly. I'll have to look more into that.

Thank you for all your helpful comments.

Bonne Annee.

Amities, Sandra

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Don't overdose on vits A and D, can be nasty, too much D dissolves your bones, but normal doses are fine. I take cod liver oil capsules daily, very important in Winter. Vit C you can take as much as you want, perfectly harmless, but a waste of money if you eat raw fruit, excess will only stay in your system if it is injected, otherwise you just excrete it.

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Hi, I just read this post and it has given me some clarity on maybe how I've ended up with a really bad frozen shoulder ? I had been taking vit D in double dose of tablets and I think it was also in another multi vit I had been taking along with tons of milk... wonder of there is any connection or am in so much pain I just want to believe anything now 🤔🤔

Best wishes lainy

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It is a difficult one. I am on Hydrea 2xdaily, no problems except for recent auto-immune attacks linked to rheumatic problems, no idea if these link to PV, but unlikely to be caused by Hydrea. The Hydrea controls my PV very well. Re. the auto-immune problems I have read a lot of advice centred on natural remedies for leaky gut syndrome: I am gluten-intolerant, so it makes sense. I have various concoctions, but celery seed, cider vinegar and pineapple are included, along with aloe vera juice. No idea if any of this works but it is worth a try. Based on The Immune System Recovery Plan by Susan Blum. Good luck, and keep away from children and schools if you can!

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Thanks Luciboo,

I'll look at the Susan Blum plan. It sounds interesting.

Kind regards

Sandra

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I have PV and am sick ALL the time as well. I’m hoping you get some good advice that I can’t read too! I’m sick of being sick!

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Hi, You probably want to see how much C can be absorbed at once. I have a vague recollection that 500 mg twice a day can be absorbed but you can’t absorb 1,000 mg all at once so your body secretes the rest. I catch everything too and stay sick a long time. I’ve reduced the frequency by using hand sanitizer when out, not touching my face, wearing a face mask in Dr. Offices, clinics & hospitals. And washing my hands the minute I get home. Good luck. Katie

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Hi again, I just looked up Royal Jelly as I’d never heard of that before. WEBMD, considered a trustworthy site in USA, says it “may” intensify the effects of blood thinners and potentially cause other problems. So you might want to check with your doctors before using. Katie

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Thanks Katie and everyone for your information. As I suspected, boosting the immune system is never going to be easy. The answers of you all at least have helped me to think about possible alternatives. Thank you.

Sandra

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I go with things like the fish oils I take flexseed capsules, cod liver oil capsules, garlic and cinnamon as well as ginko and so far no problems and I take 2 500mg Mon-Fri and 1 Sat and Sun - I am a hospice medical social work and around all types of illnesses and in the last year have had no problems

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I too am on Hydrea I take 2 tablets 500mg mon-thru-Fri and 1 on Sat and Sun. I also take vitamins but was doing prior to starting Hydrea- my vitamin include: Garlic capsule, cinnamon, fish oil flexseed, cod liver oil, ginko on daily basis -so far no issues with immune system and am doing well on the hydrea been on for almost a year now. Hope this helps

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