Bleeding and scared

I've been having bleeding issues for the past month and am freaked out. On 6/12 hemo put me on 300 mg/day cyclsporine. On 6/20 had first ritoxin treatment. On 6/22 started 80 mg/day pred. Just came home from the hospital today after three days of needles, blood tests, and tears. What sent me to hospital was bleeding gums, huge mouth blood blisters that seeped through the cheek and formed hematoma, bloody nose, and bloody urine/blood clots. Got four bags of platelets during hospital stay. Almost look normal other than bruising. Tomorrow 6/27 am scheduled to see another hemo at Cedars Saini because the current one wants another set of eyes. Apparently my platelets no longer maintain any sort of livable levels. Was diagnosed about 2 1/2 years ago and have watched platelets slowly decline. Initially he did two bone marrow tests and didn't see a production problem. He tried one IVIG treatment that didn't work. He sent me to a surgeon for a spleenectomy. Then watched the numbers decline. No instances of bleeding during this period, just a decline in energy levels. They were between 10k and 12k for the past 6 months with no problems other than some petechia. The scary part of all this is the "trial and error" regarding treatment. I've been living in a glass house all this time not aware of exactly where all this could end up and right now it isn't looking real good. Anybody have suggestions?

Wish I could help, but still new to this. Month, month and a half. Not responding to 100mg of Pred., but do responde well to IVIG. Got a second bag today to get me out of danger zone. sending me to boston va to see surgeon for spleenectomy. IT didnt work for you?
Sorry I was no help.
wish I new more.
Neil

Sorry to hear what you are going through. ITP treatment is basically a "wait and see" game. What works for some may not work for others. Rituxin is one of the wait and see treatments. It can take several weeks after the last treatment before results can be seen. I have had two rounds of Rituxin treatments. Do not agree with the Splenectomy. Many of us experience decreased energy levels with ITP. Death is rare with ITP, so get that thought out of your head if it is there. Be patient and see what the Rituxin does. Relax for now. I know easier said than done.

You might ask for tranexamic acid liquid for the mouth bleeding. With the liquid you swish it all around the mouth and then swallow it and it helps stop the bleeding. It tastes like acid drops so not at all unpleasant.

Splenectomy is slowly going out of fashion for ITP so do think about it carefully. Good luck with what you decide to do.

Im confused, 7hawkc7 you did get a spleenectomy? If you did, your numbers whent down?
Ann, why is it going out of fashion? If it works, (Doc. said 70% it will work) then your good and no more meds.
Dean, why dont you agreewith a spleenectomy?
Thanks , Neil

Splenectomy is going out of fashion partly because patients simply don't want it and partly because the newer treatments work better than the old ones and with far fewer side effects. Also they now know that the spleen is more useful than they once thought it was. The death rate from infection or clotting following a splenectomy is said to be higher than the death rate from ITP.

Also 70% success rate is a tad optimistic, more like 60% and that's immediate success rate without factoring in the relapse rate. It is also the success percentage for younger people. Those over about 40 have much reduced success rate.

Sandi usually comes up with a list of articles about what they now know the spleen does.

Hawk:

A bone marrow biopsy does not prove that production is adequate. That is a misconception. A good portion of people with ITP do have problems with production. If treatments geared toward destruction fail (steroids, IVIG, splenectomy), the TPO's (N-Plate or Promacta) may be a good option since they stimulate production.

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Articles about splenectomy:

www.ncbi.nlm.nih.gov/pmc/articles/PMC2756197/


Complications of splenectomy include bleeding, infection, thrombosis, prolonged hospitalization, readmission to the hospital, and requirement for additional intervention. Reported complication rates vary considerably and may be greater in patients aged 65 years or older. In a recent systematic analysis, splenectomy complication rates were 12.9% with laparotomy and 9.6% with laparoscopy; mortality was 1.0% with laparotomy and 0.2% with laparoscopy.104

Because ITP and splenectomy are both associated with thromboembolic risks, ITP patients should receive appropriate postoperative thromboprophylaxis."

bloodjournal.hematologylibrary.org/content/115/2/168.full?sid=ad412af6-4704-473c-a7f4-5ac68db76fe3


In general, the long-term results of splenectomy -- long-term being defined as at least three to five years -- show a platelet count of about 50,000 in about 50% of patients. We see an awful lot of patients referred for refractory autoimmune thrombocytopenia. They have been splenectomized already. Sometimes these cases are frustrating because most of the drugs already have been tried at other institutions. With these patients, we are using a fair amount of Rituximab®. There are no large controlled studies, though. Frequently, we just go back to prednisone and IV-IgG.


www.hopkins-arthritis.org/physician-corn...ia_rheumrounds8.html


www.blackwellpublishing.com/isth2003/abstract.asp?id=9680


www.hemoncstem.net/index.php/volume-3/issue-2/3039.html

nb9094 wrote: Im confused, 7hawkc7 you did get a spleenectomy? If you did, your numbers whent down?
Ann, why is it going out of fashion? If it works, (Doc. said 70% it will work) then your good and no more meds.
Dean, why dont you agreewith a spleenectomy?
Thanks , Neil

Ann and Sandi pretty much explained it.

nb9094 wrote: Dean, why dont you agreewith a spleenectomy?
Thanks , Neil

Splenectomy is a treatment, not a cure. All treatments have side effects, some people experience them some don't. With other treatments, with rare exceptions, you stop the treatment and the side effects go away. Not so with a splenectomy. Thirty years ago it was the standard of care. Now, increasingly, patients and doctors prefer to try everything else and save splenectomy in case it is really needed. I said no to a splenectomy for years and years and agreed to try it only after two head bleeds. Shrug.

Hawk - have you tried Promacta?

Hey, Gort.
Did the splenectomy work for you?
How long ago did you have it?
Have you had any problems?

Thanks,
Neil

I had the splenectomy done 10/11. Didn't help one bit. Went to my local hemo dr yesterday. Just for info purposes I got a copy of my blood work history since becoming a patient of his in late 2010. Platelets were 63,000 then. There was never a bump up unless they were given for a medical procedure. They've consistently decreased. Before the bottom fell out the first of June I had one IVIG, a splenectomy, a couple weeks of Prednisone, and cyclosporine 300 mg/day. Cyclosporine seemed to slow everything down but dr took me off due to breast lump that is resolved for now. Since June 1 he's restarted the Cyclosporine and Prednisone and I will continue with the Rituxan. Cedars Saini dr took another bone marrow (my third). Won't get any results from that end for about three weeks. His blood test showed platelets at 2k. What I've learned through all this is I should have taken a more proactive role in my health...kicked and screamed and pushed for treatments before the bottom fell out. Seems like everybody stood around to see " how low can they go".

Hawk - you have to look at the other side of that coin though. ITP is sometimes overtreated which results in more side effects and damage to the body. Whether you treat at 50 or treat at 3, the results are the same; you either respond to a treatment or you don't. A lot of us have been below 5 too because most don't treat over 20 or 30 so a drop can easily occur.

I had years of up and down counts and would hang in the 20's for months. I didn't treat. Eventually they fell and I did treat under 10. So was I just prolonging the inevitable or saving myself extra time on steroids? I don't know. WHen I was newly diagnosed, my hemo made me start steroids at 63k. I did it. Would I do it now? No way.

It's great to be proactive and when you do get to a point where you think symptoms might start, yes, speak out.

nb9094 wrote: Did the splenectomy work for you?

No.

How long ago did you have it?

2007.

Have you had any problems?

From the splenectomy? Not really.

Our kid Off & on with prednisone hell. its hell on earth. Kept lowering dosage til felt better with no petichae.Beacause allowing prednisone to shrink her adrenals is long term unacceptable Now were going to try the Papaya leaf Extract. Have been changing diet to add foods, Beet juice, everyday...... Kinda bland, but a Great detoxifier. Papaya leaf extract has been known to help alot of people.

Alot of people are using & reporting benefits with Papaya leaf extract........... Non alcohol. Ive had a few Naysayers "DRS". But when i ask them "will it hurt me more than the prednisone? They shut up. Many take the extract with tea everyday, on an empty stomache

What sort of beet do you mean by beet juice? Is it the red beetroot that you mean, or sugar beets or what? I ask because I'm keeping a list of the weird and wonderful remedies for ITP used on this forum and beet juice makes number 70.