Yes, totally get that it's always at back of mind, and sometimes dealing with it is actually easier.

Although after finishing outpatients appointments I tend to completely forget about it, after being in a french hopsital for 2 weeks with it, a few years later I went to the US without specific travel insurance as had totally forgotten about it. It's only vaccine and a friend having similar treatments for another illness this year that has made me think about it again. Feel if I totally forget about it, that's when life will swing a curve ball and give it back to me.

Sorry to hear about CVID (had to look it up), do you find it is affected by stress at all? I think my 3 instances of ITP, stress was probably a factor. I heard an interetsing view on stress other day by a GP....we each have a threshold....says it's 20 stresses, the last stress (making total 21) can tip you over the threshold and make illness likely to occur...we often look at the last stressor as a culprit but it can be all of them combined.....I think I've always been trying to find the common stressor, but I think it was probably I had reached my threshold and it wasn't one particular stressor but a combo (e.g. poor sleep can be one, poor diet, etc etc)

I don't know with age if I'm a little more careful with stress or if my immune system has improved with age...who knows

I also have normal counts or no count, hope the treatment works speedily and you have a super long remission.

When I had it a third time, I asked my hemo, if he'd had any other patients that had it three times and no more, he said he had one male patient (don't know if he was making it up to give me hope) but I left telling myself I will be his first female patient to have it no more than three times!

Hope you don't get it again and we can be members of the three times only club!

I hear you! I am glad you went from a short remission to a long one. There is hope!

I don’t know about triggers, but I do have CVID. That makes one prone to develop autoimmune diseases and is likely how/why I ended up with ITP.

My Hemo actually mentioned the vaccine piece today. I had my two doses in April. She mentioned that she has had another patient see platelet counts drop a few weeks after the vaccine. She was super clear that she was not saying the vaccine caused it, but it might be something they will / are researching.

The first two times, my counts were undetectable at the lowest. I seem to either have normal counts or no counts! This time, I was at 16k on Thursday. So, that is obviously better than 0. My Hemo wants to monitor for a few weeks, if we can (counts don’t drop, no active bleeding, no new symptoms). I have a Dex prescription to start if any of those things were to happen and am getting labs on Monday. If the counts stay the same, get worse, or other symptoms start up, she is going to schedule another round of Rituxan. It worked the last two times, so I feel oddly at peace with things at the moment.

When in remission, I feel like the idea of ITP coming back is always at the back if my mind. Now, it is back, so it takes away that anxiety … if that makes sense.

Best wishes for your continued remission!!

jessmeyer wrote: I came here to ask the same question. I was first diagnosed with ITP in Aug 2012. I did four rounds of Rituxan in Jan 2013, and I was in remission until Aug 2018. I did four rounds in Aug/Sept 2018, and I was in remission until today (June 2021). Frustrating that my remission time frame is getting shorter, but I tolerate it fairly well. I take Dexamethazone in pulses at the same time to inflate my platelet count until the Rituxan kicks in. Probably the worst side effect is that I get horrendous thrush, to the point that even drinking water tastes disgusting, and no meds help keep it at bay. I have to game plan treatment with my Hemo tomorrow, but I suspect I’ll do the same treatment again.

It is interesting the maintenance approach to Rituxan. I wonder if my remission time keeps getting shorter, that approach will be one to try.

I also have CVID, so my immunoglobulins are not a factor in Rituxan - as they are always low.

Have you talked to your hematologist about other short-term options besides Dexamethasone? That is a horrific steroid with terrible side effects. What are your counts running right now? Are you having active bleeding? It's great that Rituxan works well for you, but I can understand your reluctance to take the steroids. Are you responsive to Prednisone?

I came here to ask the same question. I was first diagnosed with ITP in Aug 2012. I did four rounds of Rituxan in Jan 2013, and I was in remission until Aug 2018. I did four rounds in Aug/Sept 2018, and I was in remission until today (June 2021). Frustrating that my remission time frame is getting shorter, but I tolerate it fairly well. I take Dexamethazone in pulses at the same time to inflate my platelet count until the Rituxan kicks in. Probably the worst side effect is that I get horrendous thrush, to the point that even drinking water tastes disgusting, and no meds help keep it at bay. I have to game plan treatment with my Hemo tomorrow, but I suspect I’ll do the same treatment again.

It is interesting the maintenance approach to Rituxan. I wonder if my remission time keeps getting shorter, that approach will be one to try.

I also have CVID, so my immunoglobulins are not a factor in Rituxan - as they are always low.

DomsmomONE wrote: I can understand what you are saying, however, in my son's case the hematologist wanted to watch and wait. And we did for 6 months, but after 6 months of steadily decreasing platelet counts, even to a critical level, I had enough. I demanded that they do something other than just watch and start figuring it out....and hematology did, it turns out my son has a primary immune deficiency disorder called CVID, which was causing his ITP. Now he is on weekly infusions and even though he still has ITP, his levels aren't critical anymore.
Watching and waiting might be fine for some, but don't you want the doctors to try and find a cause? Had my son's CVID not manifested as chronic, severe ITP, it could have been many more years before we even knew of his Primary immune deficiency disorder bc he isn't your standard CVID patient. Babies born with CVID are usually sickly children... not my son, my son was always healthy... The ITP got his PI diagnosis but only because I demanded that the doctors do something other than just watch and wait.

I'm happy to hear that in your case you were able to figure something out. There are most definitely times when thrombocytopenia is a secondary manifestation of a primary condition, as it was for your son. That is why they often call an ITP diagnosis "one of exclusion," which means that they have tested and ruled out other conditions that may be triggering thrombocytopenia.

That said, there are lots of us out here who really just do have ITP with no underlying secondary condition. I've had ITP since I was 8 years old and I'm now in my
40s! Let me tell you, they have tested me for everything and there is no other "answer" or "thing to treat" than just the ITP. Of course I "want the doctors to try and find a cause," but right now, science and medicine haven't reached a point to customize ITP treatments (or many other autoimmune condition treatments) to all of the potential triggers/mechanisms specific to each particular patient. I just thought I'd jump in there and state that "watch and wait" is a perfectly valid option for patients who have eliminated other, secondary conditions as contributors and really just have ITP. My counts run low enough that I require treatment, but I would sure LOVE to be in a high enough range with my platelets where I could just watch and wait!

As with anything, being an educated patient and an advocate for what you want with your doctor is the first step. Your advocacy for your child led the doctors to investigate further and find an answer for him. Best of luck to your son with his treatments.

I can understand what you are saying, however, in my son's case the hematologist wanted to watch and wait. And we did for 6 months, but after 6 months of steadily decreasing platelet counts, even to a critical level, I had enough. I demanded that they do something other than just watch and start figuring it out....and hematology did, it turns out my son has a primary immune deficiency disorder called CVID, which was causing his ITP. Now he is on weekly infusions and even though he still has ITP, his levels aren't critical anymore.
Watching and waiting might be fine for some, but don't you want the doctors to try and find a cause? Had my son's CVID not manifested as chronic, severe ITP, it could have been many more years before we even knew of his Primary immune deficiency disorder bc he isn't your standard CVID patient. Babies born with CVID are usually sickly children... not my son, my son was always healthy... The ITP got his PI diagnosis but only because I demanded that the doctors do something other than just watch and wait.

My son has had ITP for a long time as well. TuRns out he has hypogammaglobulinemia (low immunoglobulins) caused by a Primary Immune Deficiency Disorders called CVID. The chronic ITP is secondary problem caused by his primary immune deficiency disorder CVID. Has your child ever had his immunoglobulins checked? Even with weekly treatments of SCIG, he still has ITP, but his levels aren't critical anymore. He gets a CBC drawn every 3 or 4 wks. Good luck!

I've done a quick scout around for NHS (UK) guidelines; these are recommended as first line investigations for CVID
-Complete blood cell count with differential
-Total IgG, IgA, IgM and IgE levels
-Serum (and urine) electrophoresis
-Complement levels
-Functional antibodies (Tetanus, Hib and Pneumococci)
-IgG antibodies to previous infections and/or immunisations e.g. hepatitis B, meningococcus C, measles, rubella, CMV, VZV, EBV and others if appropriate
-If specific antibody levels are low, test immunisations (e.g. tetanus toxoid, pneumovax, Hib) should be given. Post immunisation blood samples should be taken after 4-6 weeks
-Lymphocytes subsets including T, B and NK cell numbers
-Switched memory B-cells (CD19+IgD–CD27+) and nonswitched (CD19+IgD+CD27+) memory B cells in the peripheral blood to identify patients with increased risk of bronchiectasis, splenomegaly or autoimmune disease
-Liver function tests, urea & creatinine, calcium
-Urine analysis

Thank you for your response and being direct regarding having it checked out. As mentioned I was diagnosed with ITP in 2011. In 2017 that resolved when I had my spleen removed, it was said to be very enlarged. 2 months ago, I had a CAT scan and they found several swollen Lymph nodes. 3 weeks ago i had a biopsy and learned they were not malignant. I was referred back to oncology. That doc reviewed my history and believes my history fits CVID. I am being referred to a Immunologist, and maybe they will be testing what you suggested. I appreciate your support and encouragement to seek medical attention, which I am doing. I thought to come back to this forum as I was told there can be a link between ITP and my current condition. I am hopeful to finally understand and treat what is going on with me.

Why is CVID suspected? Have your Immunoglobulins been tested - IgG, IgM, IgA?

I was diagnosed with ITP in 2011. In 2017 I was hospitalized for an infection and needed emergency surgery, however my platelets and white sells were critically low. The surgeon removed my spleen and treated the issue. My platelets and white cells shot up. Now 3 years later I am being treated for swollen lymph nodes. I had a biopsy and thankfully there was no malignancy. I am now being referred to a immunologist and they suspect I have CVID. Has anyone experienced this, or has knowledge about this autoimmune issue that is said to be common with ITP?

Now what?

My Daughter went into the Hospital below 2,000 platelets then 3days later went to 2,000 after 2weeks in hospital and 4 bags of plasma 4 bags of platelets 2bags of ivig 1bag of rituxin nothing was working then they tried n plate her numbers finally started going up she also has cvid.

mrsb04 - I am sorry your father had a stroke, what a blessing that he is now recovered enough to be discharged! I hope all goes well for him, and you!

Just curious - with all those infections you have had the past 4.5 years do you have CVID or a low Immunoglobulin G?

I have a Daughter that has been denied IVIG by her insurance co, her Hematologist fought for her insurance co denied him. Her Immunologist that she sees has also been turned down by the insurance co her Igg levels in June 2018 were Igg sub class 1 was 360 sub class 2 was 73 sub class 4 is less than 0.2. Igg serum is 532. Iga is 6. Rbc is 3.63. Hemoglobin 11.6. All the above are low what can I do for her before its to late. Thankyou her Mom.