Immunosuppressants advice anyone

My GP sent me into A and E earlier this week with the flu. Luckily after 4 nebuliser treatments and steroids I was allowed home under strict instructions to return if breathing got worse. Also told complete bed rest for five days. I know the usual, Hand washing, wearing a mask, avoiding people who are ill, washing fruit and veg, eat healthy. I was wondering is there anything else that people have found helpfull. Also has anyone any tips to show you are getting ill. I know to look out for high or low temp, blood in urine. I started Ruxolitinib in september and have now ended up in A and E twice. Pneumonia in november. I don’t seem to notice that I am not well until it’s severe. I have been told it’s like your early warning signals are shut down. well that was a ramble hope it made sense. Warm wishes. Liz59

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Dear @Liz59,
I am sorry to read you have been suffering with the flu. I do hope you start to feel better really soon. You have asked some really great questions here and I am sure you will get some responses with lived experience.
We have some really detailed pages on infection which I have attached here if you wanted to have a read, our infection video is also attached on this page - Infection symptoms and what to do | Blood Cancer UK.
As you mention it is really important to have access to a thermometer and keep an eye on your temperature, but it is also a good idea to generally monitor how you are feeling, if anything doesn’t feel quite right or you develop any symptoms of a virus/illness flag to your team straight away, it is always best to try to get on top of things early.
If you would like to talk things through our phoneline is open and you can reach us on - 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)

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Oh @Liz59 No magical ideas I am afraid and @Heidi-J-BloodCancerUK has given you great advice.
I was brought up that I will be better tomorrow, let it take it’s course, I don’t wan’t to bother them etc.
I think I am quite good at spotting a potential urine infection, however there are usually the tell tale signs. But there again I don’t want to take too many antibiotics.
Yes, taking my temperature or a Covid test might be a good idea.
Trouble is my symptoms appear as the weekend starts usually.
I haven’t been much help and your conditions are far more serious than I have been talking about.
It sound to me that you are doing all the right things, but I find once my immune system gets low it takes a very long time to build back up again.
Be ever so kind to and look after yourself

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Oh @Liz59, poor you with that flu and needing to go into hospital. And you’ve recently had pneumonia too?! I’d be feeling very sorry for myself tolerating just one of those. I’m sorry you’ve been going through it despite your best efforts to avoid becoming poorly. Hopefully you got to chat with some lovely nurses while in hospital.

Not much I can add to what you’re already doing to keep lurgies at bay. What have your doctors said, have you passed these recent illnesses by your haematologist? I might be tempted to ask if there’s anything you can eat or a supplement you could take to boost your immunity.

Personally I take a little echinacea tincture now and again in winter and when feeling run down, which is meant to help our immune systems, but don’t quote me on that as I’m not a doctor. Does the ruxolitinib suppress immunity, on top of the Myeloproliferative neoplasms (MPN) doing so?

Perhaps you’re used to tolerating aches and pains, like so many of us seem to have been raised to, and these viral illness symptoms simply crept up on you quickly. Having an Myeloproliferative neoplasms (MPN) might be all it takes to weaken our immunities, and hey presto another virus sneaks in!

Let us know how your recovery goes please @Liz59, and make sure to rest! I hope you’ve got family nearby to tend to your needs :hugs:

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Heidi Thank you for the link lots of usefull information. Erica I was brought up the same, but what I am finding is I have no noticeable warning signs that things aren’t right. Duncan yes the ruxolitinib suppresses the immunity. I back to haematology on 27 so will see if they have any advice. It’s not that I am ignoring signs I just don’t seem to have any. I have had asthma for about 35 years so am very familiar with signs of breathing getting worse. Hospital said min 5 days complete bed rest and my girls are making sure that happens and looking after me. Thank you all for taking the time to reply. Warm wishes Liz59

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I have read all of the information from Heidi carefully ,it was really helpfull. There were probably small signs that I just didn’t notice. So now it’s getting the balance of keeping a close eye on things, being carefull and if I feel a bit off to monitor and seek advice if not sure. Once again thanks for your kindness and support. Warm wishes Liz59

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Hi Liz59,
I am eight years since diagnosis with Chronic myeloid leukaemia and with my treatment my neutrophils are well below normal levels.
I find that my clues for either sickening for something or being overtired come in the late afternoon or as I go to bed. Sometimes I feel really wiped out very quickly. Sleep can revive me but what I plan to do the next day is really important. When I wake it is so easy to hit the next day with great gusto and ignore those mild symptoms of lack of energy, slight shakiness or feeling chilly. I was a teacher and we always work whilst feeling tired and give our all. It is a whole new skill to listen to your body and actually slow down and reorganise your day to get enough recovery. The other thing I would say is that if you get a cold etc do not have firm expectations that you will fling yourself back into a full day with maximum energy in three days. If you need two cups of coffee and some naughty calories to get you going then you are probably not quite right and should not plan too much for that day.You cannot work mind over body in your situation it just does not work and can take you longer to fully recover. The super good news is that as time progresses you will find that you probably get fewer viruses with each passing year. The only other thing is that the vaccinations you are offered flu, Covid, pneumaccocal and shingles (if you are old enough) are really important and take them as soon as they become available for you.

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I keep a pulse oxy meter at home
A blood pressure monitor
A thermometer
A list of what to look out for that I was given at first diagnosis
I also listen to my instinct if we have had colds etc in our house as I’m immunosuppressed and still shielding

I keep covid test’s
I keep up to date with my flu vaccination

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GrandmaJo and 2DB thank you for taking the time to reply and your kindness and understanding. I have had my flu, covid and pneumaccocal vaccines. I will ask about the shingles one. It is good to hear that I probably will get fewer viruses with time. Yes I need to pay more attention to those just not quite right days. I do have a pulse oxymeter and a thermometer. I do not have a blood pressure monitor as I do not know how to read one. Also a good point about being vigilant when others in the house are not well. Warm wishes Liz59

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