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17 Jan 2022 09:39
  • CindyL
  • CindyL
Apparently this was something the Government had just put out that morning.  Up until then, I thought I was getting my booster.  Not a big deal, I'll go back in June.
JJ, I didn't think about it like that.
Category: Social Chat
17 Jan 2022 05:26
  • clarry123
  • clarry123
I know this is an old post but I'm so glad to know I'm not along with this same symptom. Along with petechia, hot flashes are one of my tells that my platelets are low. I'm 47 and have been fobbed off for the last 6 months, since diagnosis that 'it's just the menopause'. To be honest I've find it quite ageist, they wouldn't be saying this if I was 37 and I only get the hot flashes when my platelets drop. Plus I've been tested, I am definitely not going through the menopause, FSH 4.6 and my estrogen is high  The curious thing is they were worse before I had an IVIG treatment and up until very recently were only what I could describe as hot head 'washes'. I too have had no explanation from the Hematologists, in fact I think they are fed up with me talking about my hormonal symptoms as it's not their 'department' even though it's absolutely tied into my platelets being low.
Has anyone had any joy with an explanation of why and if you don't mind me asking are you ladies also around menopausal age?
17 Jan 2022 02:59
  • JJ
  • JJ
For those of us having four, we have the fourth three months after the third here. My fourth is due. Will go for it on Thursday or Friday. You're lucky. Having a reaction likely shows that it is working, I get nothing.
Category: Social Chat
16 Jan 2022 10:38
  • CindyL
  • CindyL
Thanks, posey!  Feel much better today!  Didn't have to take any Gravol yesterday and actually got to eat a regular dinner.  Just had a slice of bread for breakfast. I lived on that and Tylenol on Friday.
I have now had the Astra Zeneca, Pfizer and Moderna shots. This is the one that knocked me on my ass. At least I know what to expect when I go for my booster! I'm pretty sure I had a fever, but unfortunately our thermometer broke and we haven't gotten a new one yet.
Category: Social Chat
15 Jan 2022 22:35
  • poseymint
  • poseymint
I hope you are feeling better now Cindy. Take good care of yourself. It can be intense, hope you get over it quickly!
I was down with my Moderna vax also for about 48 hours. I slept the first 24 hours, had body aches, chills and fever of 101. Still for me it wasn't as bad as the flu or bronchitis, symptoms were gone by the 3rd day. I took a full 5 days off work and responsibilities because I went back to my routine too soon after my second dose.

I also got 3 full doses of Moderna (most people got a half dose with their booster) because one of my doctors wrote in my medical chart wrote that I was "immune compromised due to drug therapy". I have Lupus/Sjogrens along with ITP and take a couple of drugs, Plaquinil and occasional prednisone yet I'm not actually compromised. But since my doctor wanted me to get the full booster so badly that he/she wrote that into my chart, I went along with it. My platelets fell after the second dose but stayed to same (29k) after the third/booster dose. I didn't have any lingering Lupus-type symptoms. Stay safe and healthy everyone!
Category: Social Chat
14 Jan 2022 09:26
  • CindyL
  • CindyL
So, we went to get our booster shots yesterday.
We were screened to see if we are immune compromised.  Steven isn't, but I am.  I was told I was going to get the full dose. We didn't know there was a difference.
I'm chatting with the nurse who was going to give me my shot, and she tells me, this is my third dose and in 5 months I go back for my booster!  Lucky me.
Unfortunately this Moderna is kicking my ass!  I feel so sick it's not funny! I have a wicked headache and so sick to my stomach. I think I'll be napping a lot today!
Category: Social Chat
13 Jan 2022 10:29
  • sonyalea
  • sonyalea
I self-inject at home, after being trained by a doctor in the clinic. It takes a few tries to get the hang of it, but it's fine to do. I traveled during the holidays and took several weeks of N plate with me. (Note - take an extra in case you get delayed.) I used a cold pak and a bag, put the needles in a checked bag. The medicine went through security no problem.
13 Jan 2022 10:17
  • sonyalea
  • sonyalea
Thank you for speaking up about this. I went on N Plate last year after my platelets plummeted to 11k, and these treatments failed—Dex, Prednisone, Rituximab, and Revolade. Even IVIG is very difficult with migraines, and sometimes anaphylactic shock. My dose is about 3/4 of a 250 mcg vial, or about 180 mcg. This results in platelets between 100 - 250k. My insomnia is very challenging, and I'm losing several nights of sleep each week, along with joint pain, and of course, fatigue. I'm trying to see if I can reduce this dose to get to a platelet result of 60-100k with less side effects, but I also lead an active life, and don't want to put my body in peril from a fall. I'm considering splenectomy once the covid crisis here is over. I'm wondering if anyone has looked at dosage with N plate, and had success at decreasing side effects?
12 Jan 2022 12:44
  • Cindy1
  • Cindy1
Hi Clarissa,
I was so happy to get your note. All your information about the elephants and blood results point to an infection or organism from your trip abroad. I did have incredibly itchy insect bites that lasted several days when I got back from Costa Rica.  I so hope that you can do something as simple as Rife Machine type electromagnetic currents and/or parasite destroying supplements and rid yourself of undetectable organisms and get rid of your ITP. For me once I got rid of whatever was triggering the ITP, I then needed several months to get my body back in balance. For example, slow weaning from prednisone and I took some homeopathics to get my adrenals stronger, etc.
Please keep me posted how your appointment went but please do not be disappointed if they tell you "you have ITP and get used to it."  That is what every hematologist told me.  I almost gave up until my friend directed me to the complementary medicine route which is how I ultimately got cured.
Sending you support and good healing thoughts!
Cindy
12 Jan 2022 10:33
  • JJ
  • JJ
I've got lymphoma and am on rituximab too. We don't have access to this drug yet in the UK but I would have it if I could. They're into treatment with Sotrovimab here rather than prevention, presumably because it's cheaper to wait until we catch covid than to try to prevent it. It seems unfair but nothing we can do.

Although on rituximab I've still received the vaccinations just in case it has some effect. Some studies have shown a T-cell response in patients using rituximab so I thought it worth a try. I am due a fourth vaccination round about now.
11 Jan 2022 15:45
  • midwest6708
  • midwest6708
My count is generally in the recommended range with NPlate treatment, but I also knew that didn't leave much room for a big drop from a missed dose.  I didn't actually want to deal with going anywhere else for the shot, so I didn't mind having to skip one week.  I suggested to my MD that I take a bit of prednisone during that time.  Five 10-mg doses got me up to 138 during the week without NPlate.  Today, count was down to 68 again, where I should be.
11 Jan 2022 02:20
  • Rob16
  • Rob16
mrsb04, You must have missed my response to your comment in early November on the "Sandi" thread:
pdsa.org/discussion-group/10-social-chat/30380-sandi.html#71890
I am incredibly thankful that you and others have remained constant at this website, carrying on this important work.

I remember long ago discussing the possibility that you may never be able to fully wean off steroids, that it is possible to be on steroids so long that your adrenals (or part of your pituitary) permanently atrophies from longterm steroid use. I don't recall you ever saying if you had gotten your cortisol levels checked, or gotten an insulin tolerance test (the “gold standard” for assessing ACTH and cortisol reserve).
11 Jan 2022 01:56
  • Rob16
  • Rob16
RR01, My wife, Ellen's hematologist eventually thanked us for teaching her not to panic in response to low (but not dangerously low) platelet counts. What wisdom we were able to pass on to her was wisdom we had gained here on this website. Her humility was a breath of fresh air! Eventually, ITP patients learn what counts they can live with, based on symptoms. It was a gradual process, which often meant asking for a repeat count in a couple of days before treating... lots of "watchful waiting". 

I have a theory, that part of the autoimmunity means that as your platelets drop, so do your antibody levels, which allows your platelets to recover. Similarly, when treating causes counts to rise, that causes antibodies to rise, creating a rebound response of platelets falling again. It's just a theory, but I have certainly seen where people who treat get into these crazy fluctuations; and I have seen where people who don't treat often stabilize at tolerable levels. The wild fluctuations end up being more scary than low counts that are predictably slow to change. I think that's what you meant when you talked about living with lower counts being "much more peaceful". 15k isn't so scary, if you're not afraid that the next morning it will be 5k or even lower. I even remember a man on here years ago who lived happily with counts steadily in the 4k-5k range. I don't recommend it for everyone, but it worked for him. He joked about how he missed juggling chainsaws, but otherwise he led a normal life.

The greatest lesson I learned from this website -- and I remember learning it first from Sandi -- is to calm down and don't overreact. Take it slow. Don't overtreat. Learn all you can, because the more you know the more you will realize this is not so scary, at least for the vast majority of people with ITP, with very few exceptions.
10 Jan 2022 19:53
  • RG
  • RG
Interestingly, at my pfizer booster in Oct nobody asked about Thrombocytopenia, but when my wife got her (3rd) pfizer booster at Walgreens in Dec they specifically asked if she has or had Thrombocytopenia.   Apparently the pharmaceuticals think there's now a reason to ask.   
10 Jan 2022 19:00
  • RR01
  • RR01
mrsb04 I m sure your counts will go back up  its just that sometimes our body needs some time to gear back up. I went fr blood work casually , count was 15K and dint have any symptoms at all but then was put on 60 mg prednisone :( I am at a 5 mg now and really want to get off of this but not sure if counts will go to 10 or 15k .. Its just too much anxiety going for blood work every week too..
10 Jan 2022 18:53
  • RR01
  • RR01
Sorry to hear about epidural lipomatosis - I just googled it , I hope it is resolved and you find a  medication that works for you the best soon .. I am on the same boat as your wife- my count dropped to 15-20K and doctor put me on steroids - I dint have any symptoms at that time though. My doctor does have a doubt that the Covid vaccine might have caused a dip in my counts .Now I want to get my booster shot but donno if it will drop my counts further. 
10 Jan 2022 17:50
  • mrsb04
  • mrsb04
Rob 16
It's been a long time since I last saw your name on  here. So sorry to hear about your problems. 

RR01
The physiological dose of Prednisolone is 7.5mg/day . Anything lower than that is not as destructive as higher doses. I was on 2mg/day for about 2 months and ready to taper down to 1mg prior to my latest platelet crash, which in answer to your question occurred  19 days after my booster. I've had 3 Pfizers and each one dropped my count which recovered spontaneously first time & necessitated me swapping from Eltrombopag to Romiplostim after 2nd dose.
After the booster with a count of 15 I gave up on Romiplostim again as side effects too much of a pain.  I've had really low counts since with  higher pred dose (starting at 20mg pred but now down to 10mg) and IVIg as symptomatic with a count of 6 which dropped to  4. 
It is now at 15 but I have absolutely no symptoms apart from bruises due to my normal clumsiness. 
Doctors seem to be obsessed with counts where as patients are more bothered about  medication side effects. It looks as if I have lost response to Prednisolone which as far as i am concerned is great news as it means I can taper and get off it again. 
10 Jan 2022 16:38
  • RR01
  • RR01
I feel exactly the same way , living with lower counts and no symptoms is much more peaceful than going for all these treatments honestly.
Wondering If anyone got their Booster shot while on prednisone? 
10 Jan 2022 15:55
  • Rob16
  • Rob16
Sometimes I think prednisone is like making a pact with the Devil. It works so well, but does so much damage.
My wife is the ITP patient, but I've been on prednisone -- mostly 15 mg per day -- for over a year for other autoimmune issues for which I haven't found effective treatments. I now have debilitating lower spine problems affecting my legs, which has been diagnosed as epidural lipomatosis (fat deposits inside the spinal canal pressing on the nerves), most likely caused by the prednisone. I will probably have to have spine surgery, wean off prednisone, and find a replacement medication that will put me at higher risk during a pandemic. Damned if you do, damned if you don't.
EDIT: Nope. Not caused by prednisone, in my case. I just got access to an old radiology report from over 2 years ago which showed that the lipomatosis was there long before I started taking prednisone. Nonetheless, steroid use is by far the greatest risk factor for this condition.
The ordering physician must have missed it in the report, or missed the report entirely. I should have had spine a long time ago!


My wife's ITP responds well to steroids, but she has learned she does just fine with low platelets, which hover in the high-20s to low-30s. If they drop below 20, she bruises easily, and starts monitoring her counts and watching for more serious symptoms, but the counts almost always recover on their own. Steroids are pretty much reserved for procedures when doctors require higher counts. Living with lower counts is often not nearly as bad as the risks and side effects of the various treatments.
10 Jan 2022 10:05
  • cs090978
  • cs090978
Has anyone here received Evusheld? My daughter has ITP and Nodal Marginal Zone Lymphoma and has not been able to receive any Covid vaccines due to allergies and receiving Rituximab, I was very encouraged to find out about Evusheld as a prophylactic until I saw the warnings about any coagulant issues and possible heart problems. Now I am not sure what to think.
10 Jan 2022 09:54
  • RR01
  • RR01
Thanks all for your responses!!  Is 3 mg considered a decent low dosage to be on for 4-5 months or is it still high enough to cause issues long term?  I am on 5 mg right now .
10 Jan 2022 00:31
  • MelA
  • MelA
I was on prednisone for almost 4 years - we were overseas and my hematologist in Hong Kong kept wanting my spleen & I wasn't going to let my count drop too low and need a splenectomy.   Even low doses of prednisone is not good for the body.   I have arthritis in hands/fingers, shoulders, had total replacement of both knees due to arthritis, have thin skin on arms and lower legs, osteoporosis [unfortunately calcium, D3 and magnesium did not help me like it did Janet] - due to prednisone?, maybe.  I also had cataract surgery last year - again, prednisone?    Maybe I shouldn't have been so hard-headed and stayed on it so long. 
10 Jan 2022 00:17
  • MelA
  • MelA
Janet I'm surprised your doctor's office did not make arrangements for you to receive your treatment from another doctor during that week.  Doesn't seem right to leave you high and dry.
09 Jan 2022 15:56
  • delta809
  • delta809
I had JJ vaccine and Pfizer booster. My platelets did not drop with JJ but did drop to 18k three days after Pfizer booster. 25mg Promacta usually keeps me around 50k-60k. Doubled dose of Promacta to 50mg and count went back to expected after a few days.
09 Jan 2022 15:22
  • clarry123
  • clarry123
Cindy,
I hope you all had a good Christmas and New Year in these strange times.
I haven’t asked my doctor about the parasite killing herbs/drugs yet but definitely will be chasing it up now that Christmas is over with. Especially after yesterday getting a copy of my blood test results from 2015, a month after returning from Thailand. My platelets were 112, WBC 4.0 and neutrophils 1.70! If I was told I have no recollection and I can’t remember the symptoms but from the tests it looks like I was worried about malaria. The previous blood results taken a year earlier were all perfectly normal.
We’d stayed at an Elephant sanctuary for a week where I was badly bitten on my legs through thin trousers while cleaning out the elephant enclosures. The bites were red hot, raised and really itchy. I’d gone to 1st aid and was given antihistamines which I’d never taken before. So took them every 4 hours as I was told, until I ran out and went to a chemist were I was told I should’ve been taking only 1 a day! So I inadvertently overdosed myself and had withdrawals (itching etc) when I stopped taking them.
I’m quite shocked that it appears I’ve had this problem for nearly 7 years without knowing but at least I have another Avenue to explore. Something either happened due to the tropical vaccines I had to go to Thailand or while I was there. I have an appointment with a private Haematologist on Tuesday so will put it to her and let you know how I get on.
All the best
Clarissa
07 Jan 2022 17:43
  • b2h
  • b2h
Ask your hemo for travel Nplate prescription. You can self-inject. Has to be kept cold.
07 Jan 2022 17:36
  • midwest6708
  • midwest6708
I took prednisone for at least 3 years at low to moderately low dosage.  It may have been longer than that, but my treatment log doesn't go back far enough to know for sure.  I did suffer a worsening of my osteopenia but no other obvious damage.  I was able to regain the lost bone mass by being very attentive to calcium/vit D/mag supplements after stopping the pred.

I agree with mrsb that Rituxan during a pandemic is a very bad idea.
06 Jan 2022 14:44
  • mrsb04
  • mrsb04
Unfortunately  it is not 100% certain a treatment will  work.
IVIg will only offer a temporary fix,  and is extremely expensive I believe. 
Rituximab is  too risky during a worldwide pandemic, in my opinion.
All treatments have long lists of side effects but no guarantee you will suffer from any of them
them. 
06 Jan 2022 12:03
  • RR01
  • RR01
Thanks everyone ! My hematologist doesn't want me to be on prednisone for long. Every treatment option seems to have a lot of side effects as well. I am thinking may be staying on low dose steroids is ok for a while like maybe 6 months than going for IvIG ,Nplate or Rituximab . Rituximab seems very scary reading thru the side effects .Honestly all of them sound scary to me :( on top of the high cost and uncertainty that it may or may not work for me.
06 Jan 2022 09:41
  • CindyL
  • CindyL
Back when I was first diagnosed in 2004, I was on Prednisone for the first whole year.  Started out at 60mg's but couldn't handle that, so on one test day, I asked the nurse to ask the doctor if I could drop the dose.  He said I could go down to 30.
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