PV and shingles

[Kelly2]

Hi. I am on Hydroxyurea unfortunately, since a year ago, one capsule, although I certainly need a second one with my platelets nearing 750. It lowers my immune system, years ago it did the same and I stopped it then. After a terrible cold with persistent cough this winter, that lasted one month, now I got the shingles which is the cherry on top! I have stopped Hydro a few days now as I didn't know what to do. Any of you know whether I am allowed to take it? By the way is there an app for Health Unlocked? There used to be one. Thank you!

[hunter5582]

You had best check with your MPN care team on this issue. Generally, you do not stop taking the cytoreductive medication when you are sick, unless your leukocytes are too low. You are correct to think the the hydroxycarbamide may bhave cutaneous adverse effects, however. There is a case report relevant to your question. academic.oup.com/ced/articl...

Suggest reviewing your specific situation with a MPN Specialist. One case report is not enough information on which to base a decision. Best to get expert consultation on this issue.

[ainslie in reply to hunter5582]

interesting case report , they reckoned HU caused shingles and he was put on Rux instead. Interesting as generally they reckon shingles can be an issue in about 6% on Rux but I hadn’t heard of it with HU. I note this patient was on omeprezol, any time I have used this med temporarily I quickly developed infections and food poisoning type issues which resolved on stopping it, my eco docs are not keen on it, they reckon we need sufficient stomach acid.

[hunter5582 in reply to ainslie]

Good case in point of how different we all react to meds. Between HU, RUX, and PEG we all react differently to all of them. I have to take a PPI as I have so much reflux that I developed a hiatal hernia and esophagitis. Then, of course, the PPI caused a magnesium deficiency. So on to magnesium supplements too.

It is all a balancing act with no one answer being right for everyone. Individualized care is essential for all of us.

[Janis12 in reply to hunter5582]

PPI also causes bone thinning.....everyone a winner!!

[hunter5582 in reply to Janis12]

It sure can. I just had to have a DEXA scan. Fortunately the bones are solid.

[EPguy in reply to ainslie]

That article is not open to public, it is strange to go to Rux for reducing Shingles risk.

I agree Rux has been considered uniquely riskier for Shingles among the normal MPN meds.

There seem to be no reports on the vax effectiveness while on Rux. But the advice is to get it since it logically should reduce the Shingles risk.

I got it while on HU.

[HazeBlue]

simply wigs

[Mazcd Partner MPNVoice]

Hi Kelly2, so sorry to hear that you have shingles, very unpleasant for you. With regards to your Hydroxycarbamide, you really do need to ask your doctor and your haematologist about this, you should only stop or change your dose of Hydroxycarbamide after consulting with your dr and haematologist. I do hope you feel better soon. Maz

[Kelly2 in reply to Mazcd]

I sent him a mail he hasn't answered yet! It is terribly painful but I have taken the antivirus pills immediately it started. Thank you.

[ainslie]

definitely check with your Haem BEFORE stopping or changing your cyto drugs.

Re shingles, I had it recently, I hear vaccine Shingrix is good , in the meantime the trick is to start Aciclivor or similar immediately you notice symptoms of shingles, the quicker it’s treated the shorter the duration will be and less chance of long term pain issues.

I keep a box of Aciclivor ready in case it comes back.

[Kelly2 in reply to ainslie]

Don't you consider vaccination?

[ainslie in reply to Kelly2]

yes , thats the Shingrix , if you can get it it is probably a good idea, I hope to get it soon.

[Kelly2 in reply to ainslie]

Must we stop medication before the vaccine?

[william-Indo]

You may take Dexamethasone topical and vitamin D3 oral for the shingles.

Do not stop HU, but talk to your doc

[bloby]

Fortunately my platelets were only 600. Only taken 2 tablets so far...only take Mon, Wed, Fri. Sympathy with shingles, had that several years ago...felt like I'd been kicked in the ribs. Kept me away from my aqua fit for ages. Noting down anything I feel is different. Like headache hours after taking the capsule. Good luck. 🤗

[shiftzz]

I had shingles on my head in September, my left eyebrow still tingles.It's going to take a long time to fix, if ever, second time I've had shingles

I dont think it's anything to do with pv or hydro, not been on hydro for 3 years.

I'm too young to have the vaccine and too soon after the infection..