Panic and Fear

Newly diagnosed. Platelets falling very rapidly. I read many of the posts here. It is clear that you can't predict how far the platelets will fall and which treatments will either work or not. I am 73. I am just a week into this and feeling uncontrollable panic and fear. And helplessness. Is this what other people feel when they first realize what is going on? I would like to hear. And if so, does this psychic pain reduce after a while and do you make some peace with the process. The pain from the shock feels almost unbearable. I have people around me who care, but I feel all alone with this.

Hi Edward - glad you have been looking around here and seeing our stories. I had too much on my mind when I was diagnosed since we were moving to Tokyo and had lots to do. Also I was fortunate to find out the orthodontist for our son also had ITP so this unknown "thing" wasn't unknown any more. So I really can't relate to your panic/fear/psychic pain/shock - I'm sorry. But do know there is life after diagnosis - I was diagnosed in 1989 and a couple months later moved to Tokyo on 60mg of prednisone & not knowing if I'd have a hematologist or not, still have my spleen all these years later and am enjoying life to the fullest even though my count bounces around and isn't usually in the normal range

What is your count - are you seeing a hematologist - are you being treated, if so with what?

You aren't alone - we're here for you.

Edward you are not alone. We are all here for you.
I've been a nurse for 46 years. I was diagnosed 5 years ago completely out of the blue. It rocked me to the core initially but as my mum died 3 weeks later I didn't have time to think about it.
It can be a rollercoaster to start with finding a treatment to suit. I still have my spleen it isn't going anywhere.
I lead a perfectly normal life with a platelet count of around 40-50.

We are here for you. Diagnosis/first months are trying, but it gets better and easier as you mentally and emotionally adjust and figure out what treatment works for you. This is a disease that can be managed with the variety of treatments available. Just requires care, attention, patience, vigilance and good communication with a specialist you trust. Keep informed, read, post, nurture yourself and your emotions. You got this.

Saw a hematologist for the first time. No Plan yet. Platelets went from 89 to 61 in past week. I am trying to learn about the disease. Bone marrow, Liver, spleen is all OK. No Hep A, B, or C. No H Pylori. I think he plans to wait until the platelets fall further. CBC monthly for now. I guess I am just starting. Thank you for writing and sharing hope.

And you are doing the right thing - learning! Actually your hematologist sounds like a good one - most seem to jump in and throw everything at once at the person. 89k is a great count - so is 61k. Most don't treat until about 30k, 20k. I take it you aren't having any symptoms?

Welcome. Shock and fear is normal. Hopefully it will ease up as you learn more.

I’m happy to hear you have people around you who care, what sounds like a good hematologist and a plan of action. Double digits are good and over 50 is very good. 89 to 61 is not too bad. I’ve lost over 200 in a week. I don’t write that to make it a competition, but to let you know that you are okay and also that ITP can vary quite a bit from person to person.

(I know you said you have no plan, but I count regular CBCs as a plan. Watch and wait is a good plan.)

Do you have any symptoms or was this discovered with a routine CBC?

A very sensible haematologist. Plan so far watch and wait. I'm all for that.

Welcome to the group. I hope you find your case is one of those acute ones, that remit quickly. I am not an ITP patient, but was mom of one, and I know it's scary. My daughter, now age 25, was diagnosed shortly before her 13th birthday. She was eventually deemed chronic, but her ITP remitted about three years in. (She still gets regular CBCs, and goes in for a count if she notices too much bruising, but she stays on the lower end of normal.) It is good that you came here, to get perspective from the folks who live this life. This site really helped me to calm down and know that we could deal with this. The folks on here can tell you that ITP requires some lifestyle changes, but it's manageable, and they live good lives with ITP. In our daughter's case, it required milder sports and activities, but she still had a great active lifestyle even when her counts were low. The early days are scary, when this is new and you don't know how you will respond to treatment or to a low platelet count. Some folks are bleeders or bruisers, and some aren't. Not all treatments work well for everyone. The folks on here have been through most everything, and can offer guidance and answer questions. It's good that you have a hematologist, and it sounds like he is willing to be patient and see how this goes. A good hematologist won't mind you bringing a list of questions and concerns to your visit. They've dealt with most of them. We were blessed with a team of hematologists who were patient and listened, and we soon came to see them as the primary care providers. Over time, we learned what our daughter could tolerate, and we learned to have a plan for certain issues. IVIG is a good rescue treatment for many, if the platelets dip to a dangerous level or a bleed must be stopped. It isn't a cure, and it can have some nasty side effects, but it helped my daughter by boosting the count rapidly, even though it fell slowly over the days after. (If you have IVIG, be sure to hydrate well and ask for benadryl and tylenol before, during, and for a couple days after, to prevent the headache some experience after IVIG.) Prednisone is used by many here to bring the count to a safe level for scheduled surgical procedures. (Yucky steroid side effects, but manageable. Take a stomach protectant and get ready for a bear of an appetite.) Decadron pulse works for some. Daughter tried it, but her platelet count rapidly plummeted, and she developed a nonstop nosebleed at a level she previously tolerated well, and she was hospitalized for IVIG treatment to stop the bleed. (It was worth a try, though, and I'm not sure it didn't play a role in her remission. Although her counts were still not normal, they were generally safer after that episode.) Some of my ITP life management tips: Keep bandages on hand at home and in the car, because you may bleed a bit more freely from cuts and scrapes. If you shave, you may want to invest in an electric razor. If you tend to have nosebleeds, you'll want to keep a kit of supplies handy in the house and in the car. (Afrin spray can stop a nosebleed in its tracks. Put that in the kit, along with paper towels and some bottled water to rinse your mouth after it stops.) Some find an icepack applied to the bridge of the nose slows a nosebleed. Not sure that ever helped with our girl. Use a super soft toothbrush to avoid bleeding gums. Extra vitamin C doesn't bring up the count, but does something good for capillary integrity. It helped our daughter bruise less severely and have fewer nosebleeds. (Too much can cause loose stools. If that happens, just back the dose down a bit.) Eating pineapple and drinking pineapple juice can help bruises go away more quickly. Be prepared for some fatigue with ITP. There are many doctors out there who say that's not an effect of ITP, but there are many patients here who would say otherwise. It may be the drain of dealing with a medical issue, but it's a real issue for many, and it was for my daughter. And while some would say this is a "no brainer," it bears repeating: Ask your hematologist about all your medical treatments, and certainly any medication or supplement that could cause bleeding or clotting. One surprise about ITP is that it may be a bleeding disorder, but, in certain patients, it goes hand in hand with clotting. Lastly, learn to say, "No." Give yourself the freedom to take care of yourself. It's easy for anyone to get overextended on doing for others, but this is a time when you need to do for you.
Peace,
Norma

I echo all the supportive statements. I'm even older than you are, and I have lived for 19+ years with ITP. Read about the treatment options on this site. Then you can talk to your doctor more easily.

Karen R