Hi everyone
Well after 5 months med free with a count of 30 that slowly dropped over the five months to 10, I have to go back on prednisone. I’m not looking forward to two weeks in it. I have to work full time this time and I have nobody to cover me if I get a side effect. I have never been offered anything but steroids. Ivig didn’t work. It’s like a bad dream I don’t wake up from. 😕
Dang!!!! I was going to try med free...but it’s not working for me either. My only next option is Splenectomy :(. Steroids are awful! I know some people can handle them, but I’m in your camp!! Good luck!
Oh I’ve had a stomach ache since I started them. I would just like it if they would try another medication. Ivig didn’t work so no matter how scared I am of the bone marrow biopsy, I guess I’ll have to do it.
There are so many meds and yet all they do is put me on steroids. My friend had her spleen out and she said it was the best thing she could have done. She had ITP in her 20s and she is 40 something now. She gets a phnumonia shot every 5 years and she lives a normal life. Take care
Glad to hear that. I'm getting my spleen out in a week. I'm terrified. But I've been on high dose steroids since October. They can't ween me off as I drop so fast the minute they lower the dose. The steroids make you feel awful. They even landed me in the hospital with heart issues. Having said all that I am terrified of the surgery and having no spleen. I'm glad someone has had good outcome with it. Good luck with you as well. I feel your steroid pain. Have you tried Rituxin? That is my next option if the splenectomy doesn't work.
They haven’t tried anything but steroids and ivig. My plan won’t cover nplate or ritruxn so I’m stuck. Positive energy coming your way.
They've only tried steroids here too. Don't have the idium scans here in the states either so doing the splenectomy based on faith it will work. I don't have a very good plan and oncologist suggested the splenectomy based on what my insurance would cover too. Good luck. Keep us posted on what happens. Sending good juju your way.
Hi,
Please seek a second opinion before you go ahead with a splenectomy, particularly without an Indium test. In the UK, most haematologists will consider removal of the spleen as a last resort.
There are now alternatives that you could discuss with your haematologist, e.g. Eltrombopag (Revolade), Romiplostim or MMF, which seems to be proving quite successful in the treatment of Thrombocytopenia.
Unfortunately, I do not know the ramifications regarding the insurance system in the US.
Best Wishes
Rafiq
Unfortunately it is the only option my insurance covers and it will still cost me a lot regardless. I just can't afford to end up in hospital again with heart issues caused by the steroids. I'm hopeful this will work since it's my only option. No idium scans here. Sadly. And the Rituxin is very very expensive and would require a lot of time off work. Getting my spleen out over spring break and back to work after 4/5 days after. Healthcare in the states is abysmal.
How did the splenectomy go. How are you feeling?
Heading to the hospital this morning. Very nervous. Will let you all know later this week how it went. I'm the first operation today. 😳
👍
Well, maybe I will feel differently next week. But I'm already regretting the splenectomy. Felt like I had no choice in the matter especially financially as chemo would have required time off continuously and the drugs were very expensive. The internal pain is excruciating right now. Worried I hurt myself the night of the surgery when my husband dropped me while helping me up from bed. Worried i may have injured something internally. So tired of hurting. Need some relief but trying to save my limited pain meds they gave me so that I can get through work on Monday. Hoping I can get some relief from some aleve or something over the weekend and save the good pills so I can survive work next week. Again, I may feel differently when the pain subsides, but I felt very pressured to have this procedure and my platelets haven't dramatically risen. They still have me on mega doses of prednisone so the 10,000 bump that I got is probably just related to that. I'm curious to see as they ween me off of steroids if my numbers still hold. That will be a more accurate test of success. I'm hopeful my hematologist will start weening me next Thursday. I can't wait to get rid of some of these steroids. I will keep you posted if I change my mind about this. But as of now, I wouldn't recommend it. At all. And I feel grateful that I have a job that I actually love (I teach students with severe disabilities), but I have felt very guilty this year as I've had to take time off for appts and don't feel like my job is very secure as of late. I have 2 post op appts coming up and I'm terrified to ask to get off 30 minutes (despite my kids already being gone for the day) early one day to see the surgeon. I don't think my boss understands how sick I've been this last year because I try to put on a brave face. I missed some days because I was in the hospital for my heart in January and had dropped down to 100lbs and was very weak yet was made to feel very guilty that I didn't return to work my usual self. Just been very weak and tired and no understanding on my boss' part. I partly felt pressured to get the splenectomy during our weeklong spring break so that my health might improve and my status at work might return. In a perfect world I wish I could afford to take a sabbatical to focus on getting my health better. Although I've looked like death on a stick for a year, I don't think people see heart conditions or platelet conditions on the outside so they might not feel like the symptoms are real. They are very real and my blood counts and ekg's are very real but don't think my boss realizes that. Good luck with everything and I promise to keep you posted if my situation changes and I suddenly like the whole splenectomy route. Keeping you in my thoughts.
Oh I am so sorry your hurting so much. Maybe some healing time will help which things. Take care.
Update:
Back in hospital with a possible abscess or perforation from the surgery. Had lots of problems with fever, pain and nausea since the splenectomy. On major antibiotics and possibly surgery in the morning to fix whatever is going on. So def not on Team Splenectomy yet. Haha. The good news is my last platelet count is 600,000. So I guess it worked. Just as long as it doesn't kill me in the short term. Hope all is well on your journey.
The bone marrow really isn’t that bad! I was shocked at how easy it was and I went out with my family right after it! Good luck!!
How are you with no drugs?
My platelets are normally less than 30” and after lots of ummming & arrring the Doctors agreed to try me with no meds, and I’ve had no major problems. I wear a medic alert bracelet all the time, and I’m encouraged to phone the Dr if I’m concerned.
Ten years, I’m still alive!
That’s awesome. I had no problem till my count dropped to 10. Then everyone freaked cause I was bruising and gums bleeding so back on steroids. Wait and see didn’t work for me
Can I purchase a medical alert braceletif possible what sites I only carry a card .
If you are in the UK
I think they are in other countries as well. There is an annual fee which funds a 24hr phone line medics can call to get more of your details
Hi wjoyful, there are other drugs what has your hematologist offered? Several members have had good results with Rituxan give weekly via IV infusion over one hour for four weeks. I had no adverse effects and sadly I did not respond. I had previously failed dexamethasone and IVIG and was started on Nplate (romiplostim) at 1mcg/kg injections with excellent results (2010). I am currently on 8mcg/kg to maintain my counts at 30 to 80K not great but high enough to live a fairly active, productive life, only draw back is weekly blood draws and injections. I have never experienced any side effects. Talk to your hematologist and get a plan of care. Until then be well
Hi wjoyful, I really must read all your post before wasting your time telling you about medications not covered by your insurance. What country are you in I live in Chicago USA. Be well
I am in Ontario. I have to have a bone marrow biopsy before they try anything else. I had ivig but my platelets went to 102 and crashed to 17. I just live 2 hours from the hematologist so it’s hard to get there. I’m also recovering from myocarditis (heart failure). My heart is recovered but I am still on a blood pressure pill which I still think makes my ITP worse. I seem to react weird to prednesone. I actually loose weight on it. I have to try not to loose to much. I’m feeling much better now since starting steroids on Saturday. No more nosebleeds or gum bleeds but my bruises take forever to heal.
Happy to to hear you’re feeling better, the fact that your active bleeding has stopped is a sign that the steroids are working; bruises take longer to resolve. Its unfortunate you must travel so far to see your hematologist especially with the winter we’re having. Do you live in a small town or is there a shortage of hematology/oncology doctors in Canada? I’m fortunate to live in Chicago where are four university major medical centers within a 14 mile radius. I will never complain about my weekly blood draws and injections, it takes me 15 minuets on the UC campus bus to make to the hospital.
Hopefully your insurance will cover Promacta and it will work well for you. It’s interesting that your insurance payed for IVIG, a very expensive drug) but will not consider others. My insurance refused to pay without a 10 day review period. My doctor suggested that I “go home and return to emergency room if stat bleeding and we can give it to you then “. I didn’t want to drive home during rush hour when a minor auto accident which engaged the air bag, hitting me in the chest causing massive bleeding and death at the scene. My only choice was to fake symptoms of a cerebral bleed was admitted endured a unnecessary CT to rule out bleeding and was given IVIG. My platelets increased to 22K, I was discharged, returned to the clinic on Monday with count of 10K and started on Rituxan infusions which also failed.
Continue doing well
Here I go again forgetting to mention your upcoming BM biopsy which can be very painful without proper pain management. In Chicago we use IV sedation with Fentanly (narcotic) and Versed (hypnotic) with excellent results and recommend acetaminophen for after the the procedure. This is the same combination used for colonoscopys and other minor surgical procedures. I of course, refused a biopsy as diagnosis of ITP had been made by lab work; nurses tend to make lousy pataints! You have been through enough dealing with side effects of steroids you don’t need to experience PREVENTABLE pain. Ask your doctor for pain management and have a painless BM, let me know how it went
Thank you!
Going Crazy!
Friday I have my splenectomy consultation
I'm new here...
I don't know if I really have ITP! 
