antivirals

[Linnie5]

Anyone any experience of taking the antivirals? Any side effects? any regrets?

I was hoping I’d escaped. I’ve had 5 jabs!

thanks

[hunter5582]

I took the monoclonal antibody infusion when I had COVID back in January. I was on Pegasys at that time. No regrets. It was the right choice for me.

[Hidden]

Hi Linnie5 So sorry to hear you’ve succumbed to the dreaded Covid …. I had it mid June, had an antiviral PCR test, which next day came back positive…. So, don’t know if it was me who should have done something else, but I had been led to believe I’d be contacted, phone questions to find out which meds best for me … and then they send me anti virals …. It seems that I unfortunately got Covid during a time of very high demand. The 5 day window was missed …. Oh but I did get sent (without me asking) within the 5 days, another PCR test!!! Having had Covid, and 4 days after starting to test negative … getting a cold and cough …. Which 2 weeks later is still here!!! I say, please if you can, get the anti virals ….I feel awful still …. I live in the U.K. and am told by many the system works wonderfully…. I obviously chose the wrong week to get Covid !!! Hope you feel lots better soon. Big hugs (virtual, so not spreading my germs)

[charl17]

I took Paxlovid. Acted on my intestines like a dose of miaLAX. Who knows what else it did to me or for me. I had symptoms for 5 days. I am double vaxxed and boosted. Now I have whatever natural immunity comes with omicron. I expect to get some kind of Covid in the future.

[Deefen]

I just had them last week when I contracted Covid. I was prescribed Paxlovid, which gave me an incredibly bitter taste in the mouth which amplified as the days went on. By day 3 I was vomiting within an hour of taking them, so discontinued under doctor’s orders. That said, I had a very mild dose of Covid - not even as bad as a mild cold - so they probably worked well in those 3 days.

[SuET2017]

I had the antiviral infusion. I was absolutely fine with it. And a very mild case of covid. No after effects that I can determine.

[Exeter21]

I have Covid too. Tried to get the Anti Virul as instructions but Exeter Hospital UK refused to do so.This was despite chest problems bought on by Covid. My own Dr also tried & was refused. Obviously my health area ignore MPN advice on the leaflets they gave me 🙈. I was given antibiotics by my own Dr. But Covid has made me pretty lifeless now 5 days. Just paracetamol & lots of water worked best . 👍

[Jazzyb50]

I had Covid for the first time at the beginning of June. I registered my result and was under the impression I would be contacted within 24 hours to discuss the option of antivirals. However I didn't get a phone call. It was my telephone appt with haematology within a couple of days of testing positive and at that point I wasn't feeling too bad so my consultant said I didn't need antivirals. I accepted his decision but then went on to feel quite poorly for about three weeks. I wouldn't want to get it again! Sadly I think the system is still not working for many of us with an MPN! Wishing you a speedy recovery xx

[cs1941]

I tested + on 20/7/22 at 7am and received a text from NHS trust at 16 27 same day saying I would receive a call from a doctor to discuss my medication /suitability to receive antiviral drugs.This morning 23/7 22 at 10.36am ( not within the suggested 24 hours) I finally received the call only to be told that having PRV and Polymyalgia and taking Hydroxycarbamide and Prednisolone did not mean my immune system was suppressed and because I said today I was feeling better (obviously better than 3 days ago) I would not be getting the antiviral drugs, which I do not understand.

[light]

I had Paxlovid and it was amazing that acted with in one hour of first doze making me feeling better. Very good experience overall and I am thankful for this anti-viral meds.

[Emmyroos in reply to light]

That is my experience also. It worked quickly and I was testing negative in a few days time.

[Janis12]

Hi, I took the anti viral after testing positive for Covid. At that point I had received four vaccines. I had no side effects and it was day eight before I tested negative, I did not feel ill at all. I have no idea how I would have reacted without he anti viral but I did not want to take the chance. Good luck.

[grannieblue]

Hello Linnie5, I have ET jac2+ and had 5 vaccinations and was very surprised to catch Covid middle of June.Husband had it too. I want into local hospital for infusion of antivirals, took half an hour.Felt better the next day but tested positive for 10 days. I wouldn't be concerned to have them again if necessary. Hope you feel better soon.

By the way I did have to be proactive and chase them vie the NHS app information for Wales.

[Anag]

My husband is in an orchestra. 27 members got Covid within 10 days. 1/2 of them took paxlovid really immediately at first symptoms. It worked on 1/2 and 1/2 of them were cured in 4-5 days, played 3-4 days and Covid came back for about 9-10 days. This med is definitely not tested enough and needs to be tweaked.

[EPguy in reply to Anag]

I agree, there are too many "rebounds." I read that the med works ok but it's the dose size. Some patients need a higher dose or longer treatment to prevent rebound but there is no standard yet to know how much to increase it.

[Devilgirl]

I caught covid in Early March only had mild symptoms but after doing a LFT on he 1st morning phoned my GP I had a call from the NHS the same afternoon & got the Paxlovid delivered the are evening. Very efficient here. I recovered in 4-5 days with no return. Definitely no regrets.

[Anag in reply to Devilgirl]

Lucky. You’re one of the 50% for whom it works.

[Timjonze]

Interesting reading the replies to this. I wasn’t contacted by NHS and when I rang the doctors they told me the drugs were only for people who were suffering badly (my covid was like a very bad lingering cold but nothing worse than that). I thought the drugs were supposed to be preemptive and taken early so it didn’t make much sense to me. Maybe so many people have it atm they need to limit the drugs?

[EPguy in reply to Timjonze]

That is strange they would use the level of suffering. It's supposed to be the level of risk- age, conditions etc. You're right about early, within 5 days of symptoms usually.

[Anag in reply to Timjonze]

The paxlovid has to be taken asap for it to work. It was written on the package. My husband started the day the symptoms started. He was well in 5 days but then Covid rebounded 4 days later. Then he was sick for 9 days.

[DJK12]

I notice from the press that President Biden has been given Paxlovid. Ghastly to have one's personal health issues discussed so publicly but what's interesting from our point of view is that his doctor reported substituting aspirin for his blood thinner Apixaban and stopping a cholesterol drug both while he's on the anti viral. I'd noticed that there are a lot of contra indications with the anti virals and I had assumed if I have the bad luck to catch it I would hopefully be offered the infusion because of my drugs.

[EPguy in reply to DJK12]

It is common for US politicians to be open on such things, but there are exceptions. At the other extreme, Trump near died from Covid, but it was hushed till recently.

I noticed that drug substitution also. It does suggest more flexibility on how Pax is taken.

[Anag in reply to EPguy]

Trump did not nearly die. He was back on tv just 5 days later. Nearly dying from Covid, like others takes more than a month for even a minimum recovery.

[Leighcox85]

I take anti virals twice a day for past 4 years I have mylefibrosis I have had no side effects but when I stopped them for awhile I did catch an infection quite quickly it does seem to help me a lot I don’t suffer utis anymore gout i no longer get so I definitely think they are worthwhile especially in these times with covid I take actilovor

[Anag in reply to Leighcox85]

Ive Never heard of taking antivirals for so long! Aren’t there side effects? Your own immune system must be disappearing. I used to get 3-4 horrific colds annually and usually needed anti biotics. Since being on the autoimmune paleo diet and taking fish oil, magnesium, CoQ10, etc. I didn’t catch a single cold in 4,5 years and my gout, Histamine intolerance, depression, bloating, nose infections, smelly armpits, morning breath, eczema, fatty liver, etc went away within 6 mos. to a year. Also 25 kg melted off although I consume more calories than before. If possible, it’s better to eat your way to health than just add meds to your body. Antivirals for life scare me.

[BeckyDing in reply to Anag]

Hi Please can you share what sort of duet you are on? Sounds really interesting? Thank you

[Anag in reply to BeckyDing]

It’s the Autoimmune Paleo Diet adjusted to my intolerances. My goal is to clean my body of as many toxins as possible!

Rule 1: I basically don’t buy anything produced and packaged.

Rule 2: best organic olive oil. No vegetabl oils that ignite the immune system. Especially no canola or rapeseed oil (except organic). I’m Greek. We’ve been cooking with olive oil for thousands of years. Just keep the heat low else it can go rancid. If it starts to smoke throw it out.

Rule 3: lots of veggies. Especially root vegetables. Stay away from sweet potato. Jacks up the thrombocytes!

Rule 4: as much organic as possible. I know it’s expensive, but if one is on a budget, fruit with thick skin are ok. Apples and strawberries coffee, must be organic! Check in internet „the dirty dozen“ to see the most pesticide burdened fruit/veggies. Coffee is most sprayed food on the planet.

Rule 5: no grains except rice. Almost all are GMO. Wheat is the worst culprit. With me, rye ist the worst, wheat in 2nd, oats!! In 3rd! Who would think that?

Rule 6: ALL chemicals out of the house and off my skin!! I wash my home with cheap vinegar and bicarbonate of Soda. Amazing! I put a tad of my organic shampoo in the bottle to help stabilize. Clothes I wash with dried chestnuts that fall of the trees in October. Look up in internet.

Supplements. I take only natural supplements. Terra Nova based in England are sensational.

Daily. I take VitC, Magnesium, Acetyl L-Carnitine, 2x 500mg, B Complex 3x/week, Vit D 40-60,000 weekly in tablet form, Fish oil as oil not in a capsule. Most capsules are rancid. Prick a capsule after opening the box and taste. Only then you know if it’s good quality. L-glutamine am every other day, stinging nettle tea daily for 3 weeks, 2 weeks not then again. Keep the body alkaline.

Salt baths to detox through the skin 1-2x weekly.

Rome was not built in a day. It took 9 months to make these changes. Slowly, one at a time. The AIP diet is my diet for life. Will never go back nor will my family and friends. We are sooo much healthier! It’s not Keto. Keto is too radical.

Start where you can. Every little change is a positive step in a healthy direction.

[BeckyDing in reply to Anag]

Thank you so much! I will definitely look into this - I do buy organic for the majority from fruit and veggies but didn’t know about coffee!

[Wyebird]

Hope you recover soon. I had covid after only two jabs. No antiviral drugs available then.I won’t hesitate to take them.

I always thought my white blood cells were ok but taking part in the myloid scan trial in Oxford shows that a more precise text on my white blood cells shows my immunity is compromised.

[EPguy in reply to Wyebird]

Reply to Wyebird:

Did you get each WBC reported? I recently posted that my MPN specialist said it's ok to have near zero Lymph since there are redundant sources in the lymph nodes and spleen. He has experience with lymphoma patients as a reference.

But Neut in blood needs to be higher since there is no other source for these in the body.

[Wyebird in reply to EPguy]

I had a cellular immunology which was explained to me as a break down of my lymphocyte count.ie- CD16+CD56+%NK cells, blood

Result 3.0% total lymph

It was categorised as low but didn’t give the range

10 different components in all.

4 low 1 high

IMMUNODEFICIENCY RESULT

low NK and B CE

This part of the blood test wasn’t repeated on my second visit. Apparently for us the results were to be expected.

This is all to do with the Lymphocytes only

I honestly am mesmerised by haematology and all involved with its understanding.

[EPguy in reply to Wyebird]

That is an incredible amount of lymph detail and I agree about the mysteries of Hematology. Our Drs learned a lot to get where they are.

My provider has 19-53% normal range for that so 3% would be low if that measures the same thing. But I believe the # of lymph is more important, that range is 1.2-3.7 for my provider. Did you get that one?

This is a report I posted in another reply. It would be enlightening to know what the the myloid scan trial group thinks of this for you and in general (which matches my Dr's comment):

<< It is also important to note that the lymphocytes in the blood represent only a small proportion of the total lymphocyte pool and may not always correlate with the composition and numbers of lymphocytes in other lymphoid (eg, nodes, spleen) and non-lymphoid (eg, lung, liver) tissues.>>

merckmanuals.com/profession...

[Wyebird in reply to EPguy]

Hi I followed the link you sent me. I must say it’s all beyond me. I’ve copied it to try and compare with my results. I’m going to post a further update on my Peg journey now.

[EPguy in reply to Wyebird]

If you mean that link just above, you're right it's quite technical. I note it mostly for the general idea in the quote which matches my Dr's idea that our very low Lymph results may be ok.

[Emmyroos]

I wish you a speedy and complete recovery! I took Paxlovid (doc prescribed the lower dose version). It worked well. No side effects. My husband took it also - it was hard on his stomach but no other complaints. They seemed to work quickly (within 24 hrs). No rebound for myself, husband or our other two friends that have taken Paxlovid also.