Diagnosed and in treatment

Hi there. Long story short, after a lot of tests this past spring/summer, I wound up diagnosed with ITP after I was admitted to the hospital and told hat there was a 90% chance that I have lymphoma. Needless o say I was devastated. I was given a platelet infusion, an IVIg treatment, put on pred and sent home. I spent the remainder of my summer in a fog.
I have had 2 additional IVIg treatments, been tapered down and back up on pred and through 3 of 4 planned Rituximab infusions. My playlets keep dropping. I have gained an obscene amount f weight, I have rashes, petaciea, mouth sores and depression.
Hoping for some insight and positivity. I have 2 young children that I must get through this for.
Thanks!

Well what are your counts, and what symptoms are you having? The mouth sores, if you mean blood blisters, are a symptom, and the petechia (I can't spell it either). Anything else? And, you said 'planned Rituximab', did you get it or was it only planned?
Erica

When I was admitted to the hospital I was at 8. The first IVIg treatment combined with a platelet infusion put me over 200. I slowly slid back down through the 50s and 30s. Lately that have to do manual CBC counts on mr because the computerized counts are low. On Friday, during my last Rituximab infusion, my count was 19. I have had 3 treatments with the last this coming Friday. Other symptoms I have had were severe bruising on the backs of both legs and my arms, blood blisters in my mouth, pain in my upper legs, fatigue and an extremely heavy and scary menstrual period.
I have had biopsies and CT scans galore. Hoping for an end here that avoids a spleenectomy.

Scarlett:

ITP is rarely fatal, so you can relax about that. If a person is being monitored and treated, the risk of death is nearly zero. Low counts can be serious, but many people do fine despite counts in single digits and many are not even hospitalized.

ITP isn't always something that you just 'get through'. It can be chronic, however, there can be long remissions at times. Rituxan can induce remission in people who are responsive, sometimes it lasts years. It can take 4 to 12 weeks after the first infusion to see a response.

Although the goal with ITP is achieve normal counts, sometimes just having safe counts can be more realistic. Anything over 30k is considered safe.

You can easily avoid splenectomy by just saying 'no'. There are quite a few treatment options. It would be a good idea to become familiar with all of them so you can be a part of the treatment decisions.

Most people here will agree, after dealing with this for a few years, that you can live a perfectly normal life with ITP. It takes some adjusting, but you'll get there.

This is a good thread to read if you haven't already:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Scarlett,
It's too soon to write off the Rituxan, it can take up to 12 weeks to take effect. 6 weeks is pretty typical.
Erica

Just repeating what Sandi said!

I was diagnosed when my kids were young they are adults now. When your first diagnosed with ITP it is scary but after a while it becomes a pain in the butt. Why I say that it is because you plan a count just before going away. I always get one done before I go camping or when I did indoor rock climbing.

Now my closest friends just say are you good to go! and I respond we'll soon find out!

Your life has not stopped you are just taking a different road!

Seeing my doctor tomorrow. Have acquired an infection so she wants to d another CBC before putting me on antibiotics. At this point, it's becoming really tiresome for my kids and taking up a lot of my time that could otherwise be spent taking care of my family.
I appreciate I ate all of your feedback. Hoping for a quick resolve to the infection and hoping the Rituxin kicks in and I have some time to not "be sick" for the holidays.

You probably won't "be sick" for the holidays. I was at zero platelets for ten days and felt fine until they destroyed all my red blood cells. Then I was exhausted but still not "sick." My biggest problem was vertigo even when seated until I got below 20 mg steroids. Then it disappeared. You will have to be careful not to be around sick people though.

I was really stoned on the pred in the beginning. I was on 50mg twice per day. Lately I have been doing much better, down to 30mg once per day. I am an elementary school teacher so I am around sick kids everyday. I am as careful as can be. Looking forward to a time when I can just be meds free.

You'll get there. Things will slow down. It's always a bit crazy at first, but CBC's and doctor appointments lessen in time.

Luckily with ITP, there is always a good chance that a person will become med free at one point, or at least only have to take one at a time. Some people with other autoimmune disorders never get to that point.

All you can do is take one day at a time and try to keep things as normal as possible.

Scarlett,
I am sorry you find yourself in this situation. I am the mother of a former ITP teen who is now an adult in remission. Thoughts (sorry for the long post):
1. I assume that, with all the tests, you had a bone marrow test, and that lymphoma and all the scary stuff have been ruled out. If you do not know that they've been ruled out, sit down with your doc, ask the questions, get some reassurance, and get a plan to rule out what hasn't been ruled out. You can't really focus, deal with ITP, and deal with the rest of your life if you are frightened or uninformed by your doctor.
2. I am also assuming your doc is a hematologist (may have missed that). If not, you need one if at all possible. They deal with ITP more frequently than general practitioners, and can offer the straight facts and options that can help you calmly plan (to the extent possible) for a life with ITP.
3. Some patients, my kid included, find that their bodies adapt to ITP and that the fatigue gets better over time.
4. Many ITP patients have spontaneous remission, so don't give up hope for that.
5. Vitamin C can help with bruising and bleeding gums, as it seems to help vessel integrity. It won't raise counts, but it won't hurt you and can make ITP a bit more manageable for some. It may also help avoid the colds and viruses that can tank some folks' counts. If you take too much, it will cause diarrhea, and you will know to back down the dose a bit.
6. Keep yourself, otherwise, as healthy as possible. You can't make ITP go away, but you can keep your system healthy and try to avoid the viruses and ailments that can tank the counts. A healthy body will withstand crises better than an unhealthy one. Contact sports are to be avoided, but most ITP patients can engage in some form of exercise. (No, I don't do as I say. I don't have ITP, but I'm approaching 50 and should take much better care of my own health. My ITP teen, on the other hand, truly felt better when she exercised regularly. I also think the endorphins can help with the mild situational depression that a health issue can bring.)
7. Enlist your significant other and family to help with what you cannot handle, and accept help when offered. This is tough if you're a control freak like I am, but accepting chores done to other people's standards is better than not having them done at all.
8. Haven't seen many splenectomy success stories on here. On the other hand, perhaps the successful ones go away and don't post anymore. I think the reported success rates are low enough that I wouldn't give up my spleen (and be at risk of sepsis the rest of my life) unless it was really the only way to go. (And I'd have to hear that from at least three hematologists in separate practices.)
Good luck in dealing with all this and adapting. Even without remission, most ITP patients can live a life that is not ruined or consumed by ITP.
Norma

Hi Scarlett, hope you are fine now. I can understand your situation. My wife also had the frrst infusion of rituxi day before yesterday. Before transfusion she was on solu medrol from last five days and her count was <10k. Post first infusion, just next morning count reached to 20k and then next day count was back to 10k. Don't Know what's happening. But doctor is saying it take some time, don't know how much, depend upon person to person.

Thanks to Sandi, I really appreciate the kind of awareness you are providing. I have shown all the details to my wife and now she is feeling comfertable. We are in hoapital from last eight days now hoping that rituxi would help.

Regards,
Yogesh

Hi,
Today is the 2nd day post we had the first Rituximab infusion (550 mg). As per today evening's report count is less than 10k. Do you have any idea how much time it takes and can we try anything else in between or should wait.

Thanks,
Yogesh

Yogesh:

Rituxan can take four to twelve weeks after the first infusion to work. It takes patience. How are her symptoms? Have they tried any other meds? I can't imagine that they'd keep her in the hospital for weeks.

Hi Sandi, She was on solumedrole for four days before Rituximab. She is also having prednisolone 50 mg. and Promacta 50mg. Per 21st November's report count was 22k which was the 4th day of first infusion.

We were waiting in hospital to reach the count at a safe level but as suggested by you, we discussed with our doctor and got discharged from hospital on 21st as there were no sign of active bleedings since she got hospitalised with count of less than 10k.

She will be going to have the second round of rituxi tomorrow and will have the CBC before that to check the current count.

Hopping for the best.

Thanks

Good luck! I wish you both the best.

As per today's CBC count is 5k. We have started the second round of rituxi. As I got to know from various PDSA members that it starts working bit late, hope it start working after this round. I am just wondering why promacta and predniaolone are not working this time. Its been third week she is continuously taking promacta but no use.

I had heard that promacta always works and also worked for her last time as well.

Though there is no sign of bleeding nither any red spot in body but i am not able to decide if we shoud stay in hospital aftetr this infusion today or should wait at home as we did last time.

Yogesh

Have completed the second round of Rituximab and decided to go back to home
I think staying at home with our kid would be more relaxing than spending nights at hospital. let see when it starts working.

Yogesh:

My counts were under 10 the entire month that I was getting Rituxan. I was never in the hospital and was, in fact, still working every day and running my three kids around. All doctors are different though. Point is...being home is not necessarily a bad decision. I'd rather be home too. Just watch the symptoms.

Thanks Sandi, you are such a great motivation to others. She is still taking promacta and prednisolone 50mg dose. We are also watchful for red spots.
I also read the herbal treatment section on this site and thinking to start ayurvedic treatment along side, as in ayurveda they are talking about the very good positive results and permanent cure of this problem.

Nothing is known to be a sure cure for ITP. You should maybe run this by her doctor first since some supplements can interfere with medications or cause ITP symptoms to get worse.

As pet today's CBC platelet count is 3k. This the 10th day of first infusion and just two days back she had the 2nd round of Rituximab.

Though there is'nt any red spots on body or in mouth so far, just called het doctor he asked to visit the hospital right now or get the cbc test done from any oyher lab as if there is no bleeding symptoms as he ia in doubt that with this count there should be red rasheshs as she had last time when count reached to 3k but there is no such sign this time.

Now I am worried.

Try not to worry. Not having symptoms is a good thing, and symptoms don't always happen every time counts are down.

She is getting 3rd infusion of Rituximab today that will take next 6 to 7 hrs. Three days back count was 3k so got three round of solumedrol in last three days. Just waiting today's CBC report.

As per CBC report before starting of 3rd infusion of Rituxi, platelet count was 15k, bit relaxing over 3k that she had last week.
Not sure if this increase is result of Rituxi or Solumedrole which she had last week (three round of 1gm solumedrole)when we got worried with 3k.
I asked her to get a CBC done after two or three days of 3rd round but she refused, may be she do not want to get disappoint with her count, anyway she has to get CBC on coming Monday before the 4th and last round.
Hope it will start working.

Today she is having her last and 4th infusion of Rituxi, it got delayed by one day due to non availability of the injection yesterday. As per last week CBC that she had before starte of 3rd round, platelet count was 15k. Did not have any test post that just because she did not has any symptoms or red spots over the body so we are bit positive this time.
Waiting for todays CBC that she had just before the starting of this last dose. Looking forwards for a count that can bring a smile on her face.

Thanks,
Yogesh

Hopefully you get good numbers

As per today's count that she had before starting of 4th dose was 5k.
Since this is the 4th week she is been treated with 3 Standard dose of rituxi, we were expecting something positive but I believe it has not started Working. Doctor is suggesting us to think and be prepared for splenectomy. She is also taking promacta 50mg.from last two month but that is also not working this time.

It's a bit soon to give up on Rituxan yet. It can take 4 to 12 weeks after the first infusion to see a result. There's still hope.

Forth week of Rituximab - Yesterday evening She got few red dots in her mouth. Called to her doctor, he advised that is because her count is very low and may need platelet transfusion. But as per our experience with platelet transfusion in last two month, she did not get any benefit of that so not sure on that. She got a dose of 1gm solumedrole yesterday and will get the same today as well as it worked last week for her.