Please help! Anyone had similar symptom?

Hi everyone,

I feel lucky to find this forum. I really want to do something to help my boyfriend and I need your help!
My boyfriend was diagnosed thrombocytopenic purpura 5 years ago, and has tried kinds of treatments, including platelet transfusion during these years. But his platelet counts still remains at around 20 000 × 10^9/L or less. Most of the times there's no obvious symptom showing in his body, except for some purpura marks when he gets tired. But sometimes he can suddenly suffer from serious headache, acute wisdom tooth pericoronitis, and jugular tumefaction lymph, which usually lasts for a week. We noticed that these three symptoms always occur at the same time, and recently they occur more often than before. It seems that there are connections between the three symptoms. Before he got thrombocytopenic purpura, one of his wisdom teeth often bothered him, but he refused to pull it out. Instead, he took a lot of antibiotics to suppress the pain. He doubts that the antibiotics harmed his blood and thus his immune system. Now he really wants to get rid of the wisdom tooth, but his platelet counts is too low.
I felt suffering every time he was hit by the three-fold pain, because I couldn't do anything to ease his agony. His doctors haven't figured out the root cause or provide a fundamental solution to prevent the symptoms. I wonder if there's someone with a similar experience, or has some knowledge about this situation.
Any relevant information or suggestions would be appreciated!!!

The infection from the wisdom teeth, or the antibiotics for the infection, could cause the drop in platelets.

Can he take prednisone, or IVIG, and get platelets high enough to get the wisdom teeth out?
Erica

He's going to have to get the tooth pulled or it will never get better. His doctors are going to have to figure something out. Platelet transfusions do not work for ITP. What has he tried?

Hi Erica,

Thank you! We are thinking about doing this, but worried about the risk of pulling out his impacted tooth. He is 52 now. The dentists considered the risk and refused to operate, even if he could rose the platelet counts to a normal level in a short time. We don't know what to do now. It seems that nothing can be done but waiting for the next wave of pain. Anyway, thank you for your kind reply and suggestions!

Hi Sandi,

Thank you for your reply and advice! He has tried prednisone, vincristine and IVIG. But the prednisone and vincristine did not work, and the IVIG couldn't keep the platelet high for more than a week. A the moment he is trying traditional Chinese medicine, but we haven't seen any effect yet.

Has he tried Dexamethasone for a quick boost in counts? Doesn't work for everyone, but it does for many of us. Gives a short boost with a 2-4 day pulse treatment.

As for tooth removal. A lot depends on an individual's bleeding history and the oral surgeon involved. Some dentists and oral surgeons freak out and some do not. I've had both.

I just had an upper incisor surgically removed last Wednesday. My count was 19k with treatment. I consulted with my hematologist and the oral surgeon, we all agreed that a boost wasn't needed. I don't have a history of bad bleeds between 10k and 20k. There was no transfusion, no crash cart on standby, it all turned out to be a complete non-event.
The only problem I had was the pain med made me ill, so I didn't take any after the first day. I had normal bleeding (big sticky new platelets) and the stitches should fall out any day now.
I am kicking myself....I put this off since December because I was worried about platelets.

I also had a wisdom tooth surgically removed a little over a year ago. That was also a non-event.
Between those new big sticky platelets and the micro-particles floating about, I just didn't bleed much and healed very quickly.

Everyone is different, but that has been my experience with oral surgery and ITP.
I am 60, had ITP for at least 10 years now. My platelet count with treatment runs in the upper teens (19k at the last check).
.

His age shouldn't matter unless he has other health issues (heart, etc). My husband had a nasty wisdom tooth removed last year and he is 51. If IVIG can get him up for a week, he'd be able to do that before the scheduled surgery. As Jack said, Dex is also an option. There are also TPO's like N-Plate and Promacta that could get him to a safe count. Jack is right, it's just a matter of finding a doctor who is comfortable with the situation.

Sandi, when you point out that such platelet transfusions don't work, you are of course correct for long term, but they might be used to get a numbers above a necessary threshold for a window of time for surgery.

When my numbers were low, I would clear such transfusions within 24-48 hours, but they were high enough for long enough for major surgery. Maybe this strategy would work for oral surgery? I imagine the transfusion would be occurring while the patient is in the dentist chair and most dentist may not be able or equipped to do this. However ,if it is the only way....

Just a thought -
Mark

Hi Jack,

Thank you so much for sharing your experience! It is really helpful and we see the hope to solve his tooth problem! I wonder whether you have ever experience gum bleeding or lip bleeding before, because in some rare cases he had these problems.

Hi Sandi,

Thank you so much for your reply! There's no problem with his heart or other organs, though they locate in the opposite side of his body (for example, heart in the right side). Your advice and the medicine you suggested are extremely helpful. We decide to look for a dentist who doesn't feel uncomfortable with this situation.

Hi Mark,

Thank you for sharing your thought. I feel so lucky to have all these replies!

I wonder whether you have ever experience gum bleeding or lip bleeding before, because in some rare cases he had these problems.

Yes, I have gum bleeding, normal but not serious. And when my counts drop below 10k, I am covered in bruises.
In all truth, I left the oral surgeon's office last week a little bit disappointed.
.... "But but doctors, I have ITP! Hook me up to something quick!" .......

As I said, it was a complete non-event. I bled the normal amount of time, changed the gauze packing only once, then removed it after 90 minutes per the normal instructions. Big new sticky platelets and micro-particles do the trick.

Some doctors listen, look at your symptoms, look at your history, then do what is proper based upon your medical facts.
Other doctors just say, "You have a disorder that may affect my insurance premium, go away, I won't discuss it.".
I have found that the dentists, oral surgeons, and such who are the most informed are usually the most willing to perform procedures. Those who are not well educated about ITP, are usually the first to say , "no way".
This applies to all forms of doctors IMO. Early on in this ITP adventure, I had my shoulder operated on to remove bone spurs. It was also a non-event. Again, the doctor was educated on ITP. He is one of the tops in sports medicine at OSU. Shoulder healed fine with therapy, no issues since.

NOTE: I am not saying that everyone with ITP can just do whatever they want. I am saying that informed doctors will take the time to become informed about your own version of the disorder. Then use that information to weigh the risk factors.
We are all different.
.

Mark:

Yes, a platelet transfusion would work for a surgery. You're right. I would think though that it would be more appropriate for an emergency rather than a planned surgery, if IVIG or something else would work better. I wouldn't want to rely on just platelets alone unless I had to.

Hi Jack,

I can't agree more! It is true that doctors without much ITP knowledge are less likely to give active treatment. In fact, my boyfriend almost lost patience seeing doctors. It seems that none of the dentists he saw knew much about ITP. They just wanted to keep out of accident. You were so lucky to have a doctor with expertise on both sports medicine and ITP! I know the first task is to find a doctor who is well-informed and willing to listen. It is not easy, but we'll keep looking for. Thank you so much!

At 13, my ITP daughter needed several stubborn baby teeth removed to make way for braces. Our regular dentist could not risk the procedure in his office, so we spoke with our hematologist about the situation, and he recommended a dentist and faculty member at the same med school hospital. My daughter took prednisone for five days before and after the procedure, to boost her count. Her extractions were done in the OR, under anesthesia, at the hospital where bleeding could be controlled and platelets could be used in the emergency, if needed. He also used HemCon dental dressings. HemCon dressings were developed, so I understand, for the military, for bleeding control on the field. HemCon incorporates chitosan, a product made from shrimp shells, which acts to stop bleeding. This was the first time, to their knowledge, that the product had been used in our area. Some of the dressings fell out almost immediately after we arrived home, but with no major bleeding. The pediatric dentist, George Rockman, would probably be glad to talk with your boyfriend's dentist. Rockman was, at that time, in the dental school at Medical School of Georgia (now Georgia Regents University), in Augusta, Georgia, in the United States. Sounds like the wisdom tooth needs to go, if he is to get better. I agree with the others. Any illness can rev up the platelet destruction. Good luck.
Norma

I also should have added: The hematologist prescribed Amicar, which we filled, in case of bleeding after. After we got home, however, I realized that, with bc pills to prevent bleeding and having not yet been tested for antiphospholipid antibodies, Amicar might add too much risk of a dangerous clot. The hematologist agreed, and said she should not take it. Amicar is used by some ITP patients for bleeding, but you should ask the doctor whether there is any other clotting risk that rules that out.

Another good way to stop the oozing after a tooth extraction, if he gets to tooth out, is to place a frozen spent teabag on the spot. Careful not to break the paper. May want to wrap it in gauze. Just brew the tea and put the spent bag in the freezer, then apply as a compress to the tooth socket. The caffeine helps constrict the vessels and slow or stop the oozing bleeding.

Norma

Hi Norma,

The detailed description of your daughter's experience and the tips you provided are of great help to us! Thank you so much! The first attempt of using HemCon dressings is really impressive. I think any safe method that might help to prevent bleeding is worth trying. It is so kind of you to recommend Dr. Rockman to us! It would be great if we could get contact with him. Do you still have his contact information, like email address?

with great appreciation,
Iris

I am going to the PDSA conference and have asked by multiple people to ask all about Amicar, so hopefully I can answer next week!

Hi V,

That would be great! Thank you so much!