TOPIC:

Hi there,
My name is Aimee and I am 43 living in Northern Alberta. I was diagnosed in December with a count of 3. I was given IvIG and dexamethasone. They rose to 260 but fell back down to 24 within 2 and half weeks. They tried the dexa again and stayed at 147 for only four days. I’ve hemorrhaged 2 times in the last 4 months. They then put me on high dose prednisone for 2 months which was absolutely terrible. They are now dropping again and last count was 50. In order to get rituximab I need to be approved after all unsucccessful treatments so I’m waiting for that now. I am not in any treatments now and I can tell they are dropping again. I haven’t been able to work since December. Does anybody else feel the extreme exhaustion as they drop? My regular doctors keep telling me I’m fine and I’m young but that’s not how I feel. I would like to get back to work but when my platelets are low I’m just too exhausted. I’m hoping I have luck with rituximab but the statistics aren’t so great. Any thoughts?

Hi Aimee. I'm in NB and did Rituxan in 2011. Do you see a hematologist? Mine got approval to use the drug on 3 of us. I'll admit, I don't know what he had to do to get the approval. I"m the only one it worked on. Counts started going up with the first dose.
I never noticed being tired when my counts dropped. I only knew they were down when I got blood drawn. The first year of diagnosis I was tested weekly and getting IVIG. I was on prednisone at the time. I've never hemorrhaged.
I'm sure others will chime in with their experiences.

If only your regular doctors could walk a mile in your shoes!

I never ever had any type of exhaustion due to a platelet count, I was diagnosed in 1989. But I know there are some that do. I'm sorry you are having this problem. When was your last count that came back 50k? Are you seeing a hematologist, if not you do need one!

Keep us posted on how you are doing!

Hi Aimee. Welcome!
You've been having a rough time. I agree with MeIA, you need a hematologist. You should start on Promacta, Nplate or other. Steroids are not good for long term use, but can be good in emergency situations along with IvIG. Rituximab may or may not work. It's pretty toxic compared to other options and it can take a while to kick in.
Yes, I get tired. It's no fun bleeding and being exhausted.
I hope you find a good hematologist and feel better soon.

I do have a hematologist. With Alberta health it is difficult to get approved for any drugs. They are working hard but my levels need to drop below 30 before they can apply again. I get blood work done every week and I can assume they are definitely below 50 this week just from the extra bruising I am seeing. I will see in Thursday where the numbers are at!

Aimee my hematologist won't treat until I'm at 30 or below - thankfully I haven't been that low in a long time.
Ok, glad you do have a hematologist - but is that the doctor who says you are fine or is it your medical doctor/primary care doctor?

My family doctor is the one who says I should be feeling fine and ITP will just “fizzle out”. I think I’ve done more research than he has!! I’ve been constantly below 30 without treatment so now that the prednisone is out of my system I will most likely hit that mark very soon.

Aimee, welcome to the club no-one wanted to join.
Most family doctor's knowledge of ITP would not fill the back of postage stamp. Be guided by your haematologist.
I would go for a TPO-RA such as Eltrombopag (Promacta/Revolade) or Avatrombopag (Doptelet) before trying Rituximab. Over here in the UK our ITP association doctors recommend not using Rituximab during the Covid pandemic.
I found once I was settled on Eltrombopag (after3 years of trying other meds) my fatigue reduced substantially. It still rears it's ugly head at times but nowhere near as often as it did.

Being on dexa and high dose of prednisone for 2 months will also cause extreme fatigue. Prednisone withdrawal with cause exhastion, fluish aches, joint pain, muscle weakness, depression and more. People do have fatigue with low platelets but I wonder if possibly the drop in counts coincided with prednisone withdrawal.
I've had it for 12 years, still waiting for it to "fizzle out" as your doctor suggested. haha As others have said, many people are managing their ITP very well and even having remissions with the newer drugs, Eltrombopag and Nplate. Rituxin suppresses the immune system, so I agree with MrsB and UK guidelines that its not safe to use during the pandemic. Also I don't think its advised to use it before you get vaccinated for Covid. It can cause the vaccine to not be as effective. Best to try the TPO drugs that do not suppress the immune system. Good you are doing your research!

Hi Aimee,
I'm your age too (41). I do feel super tired a lot when my counts are low and also when they're high, but from being medicated. I get a lot of pain, nausea and so on, my doctor says too it's not so bad or other people don't experience it. Well, but the doctors aren't in our bodies right. I was a bit shocked one wouldn't even acknowledge the obviously visible side effects, like huge edema. Different people experience it differently.

Hello Aimee. I was hit by ITP out of nowhere last July with a platelet level of 2. I was hospitalized for 6 days with high doses of Prednisone and 2 IVIG infusions which brought me up to a level of 42. Within 6 days I was back down to 3, back in the hospital this time in ICU for 4 days where they began the 4 weekly Retux infusions along with weekly Nplate injections. SInce that time my levels have stabilized at around 100. I havent had any treatments since my last Nplate injection this past November. This is good. What is not good is that I dont feel myself. I am also super fatigued. I have soreness throughout my upper legs as well as stiffness and a loss in range of motion. This time last year I was full of energy and always running, jumping, hopping, vaulting etc etc when on my Rural Mail Route. I loved physical movement. I was sure footed and light on my feet. I had a very fluid running motion all was great.

Since last July and the onset of ITP all of that has vanished. I did add around 20 lbs of fat to my gut from the month of high dosage Prednisone that is not going away as easily as it should simply because I no longer have the energy I once had burning tons of calories while on the job. I walk like an old person now. Im not so sure footed or light on my feet. Even if I am willing to ignore the pain and discomfort when running its still not the same. I dont have the same sense of balance or strength in my legs. Its very depressing to be honest.

So I dont know what the deal is. I really dont like what the deal and new reality is for me...it blows

It’s nice to hear I’m not alone!! Everything you’ve all said is exactly the case for me. The fatigue, the swelling, the soreness it’s all there! I ended up having a uterine ablation on Wednesday but just before surgery my levels were at 19 so they did a platelet infusion during surgery and ivig after surgery. They are now sending me for a bone marrow biopsy as my hemoglobin counts are still in the hundred range. I should qualify for rituximab In The next week or so so guess we will see the next steps.

I had zero issues with the 4 Rituximab infusions(other than freezing at the Oncology office I received them at because I wasnt properly dressed) however the day after the final IVIG was brutal. It was my first day home after that first hospital stay and I thought there were serious issues but they told me to take Tylenol which once I did, the severe headache and body aches subsided rather quickly

My platelet levels finally rose and stayed over 100 after the 3rd Ritux infusion. It really does take weeks for the impact to register. In fact after the 2nd treatment I was riding high at like 163 and then the next week back down to 40 and I was devastated. My hemo said not to worry about it yet and to wait for the next week and sure enough back up over 100 and I havent been below that since. That was in August of last year.

HI Aimee my count has never been above 25 it ranges from 10 up since 2007 and i also no when my platelets drop i get exhausted Ontario here

porqupine there was a group of us ITPers in town here who would get together every couple of months, unfortunately that fell through the cracks some years back. 2 of the "members", 1 male & 1 female, kept a count around 5k and were doing well, trying to recall if the female was the one who had gone to London for the indium scan and told it was her spleen doing the destruction so she had it removed when she came back here but her count went down to the 5k not long after.

Our son's orthodontist was diagnosed before me (I was in 1989) and he could tell when his count was low as he would get red dots around the outside of his eyes. We all are so different aren't we. I never have been tired or exhausted when my count lowers, just when my thyroid acts up.

Hope you are doing well!

Since I retired from the NHS front line my fatigue has virtually disappeared. Now the only way I know my count is low is nosebleeds.
I am a very clumsy person and bruise all the time irrespective of my count. All my life I've bruised easily, as a child I was permanently black and blue and all shades in-between. The only reason I went to see my GP (when I was diagnosed in 2014) was because the bruises I sustained falling over the wheelbarrow in the garden were different to normal in that they were swollen and bulging from my skin. My count was 12. Six months prior to that I was in A&E after a foot injury sustained when a drunk woman in stiletto heels trod on my (bare) foot at a party; my count was perfectly normal then.