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TOPIC: Good Result/Success/Restored/Remission/Recovery/Cured

Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61089

  • Fender
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A thread to share good results.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61091

  • Fender
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A big thanks to those who’ve posted their ITP thoughts. Very useful to me and much appreciated. Thanks to God for my recovery from ITP. Optimistically, long may it last.

My ITP history from memory is as follows and please consult a doctor if any of this resonates with you as I’m just a layperson and I’m not intending to provide advice here.

August 21st 2016 very ill for a month with flu like symptoms. I did not see a doctor.

January 22nd ate mouldy pasta sauce. Mould was white and induced by dipping bread.

January 24th ITP symptoms start to present.

January 26th to 30th hospitalised due to platelet count (Pit) of zero.
- 53 year old male of Italian ethnicity referred by Haematologist with Thrombocytopenia
- Presenting with petechial bruising, oral blood blisters, platelets of 1 and otherwise normal FBC indices.
- Normal blood film with no red cell fragments or platelet clumps.
- Tests show HIV, Hep B and C negative.
- Primary Diagnosis ITP
- Commenced on 4 day pulse treatment of Dexamethasone 40mg daily and Tranexamic acid cover.
- Platelet count increased to 35
- Patient discharged on Jan 30th to home with weekly blood tests.

February 2nd to February15th hospitalised due to Pit 7*
- Patient had unilateral frontal headache last night lasting 3 hours but self resolved after taking diazepam.
- Soc.Hx: Never smoker. Occasional alcohol consumption.
- Multiply bruises over forearms and legs bilaterally mostly old with new bruising in antecubital fossa and L lateral knee.
- No evidence of bleeding from nose or oropharynx, no blisters, petechiae on L shin (resolving compared to last representation)
- Bloods: Hb 172 Hct 0.48, Pit 3*(7) WBC 10.7 Neut 9.7* Lymph 0.38 Monocytes 0.13 Myelocytes 0.43,Na 137 K 4.3
- Prednisone (80mg) regular, platelets of 1, IVIg (1g/kg) regular, platelets initially rose to 5 after first dose then dropped to 1 after second.
- IV methyl prednisolone (1g od) followed by 1mg/kg prednisone (90mg od) for 7 days then tapered off over the following 2 weeks.
- Bone marrow aspirate + trephine (subsequently negative).
- Splenectomy planning consisting of initial vaccinations given (Hib, PCV13, Tdap), Influenza vaccine to be given during funded influenza immunisation programme annually. Seen by general surgeon for planning. CT scan upper abdo in preparation for splenectomy. Prescribed Eltrombopag, 25mg to raise platelet count for surgery.
- Started on Eltrombopag (same as Revolade and Promacta), 25mg on February 11th
- Attended church in hospital Feb 12th and received my first sacrament.
- Platelet count improved to 58 on Feb 13th, 71 on Feb 14th and 111 on Feb 15th .
- Patient discharged on Feb 15th to home with weekly blood tests.

February 16nd to March 15th at home
- Blood test (FBC) weekly on Wednesdays.
- Antibiotic for throat infection: Amoxicillan Trihydrate Ca 500mg, 7 days. If H.pylori was an issue, then this would have helped.
- Diet: raw honey, manuka honey, fresh spinach, lettuce, broccoli, carrots, coffee, ground beef, pork, canned tuna, canned salmon, brown rice, fruit juice, apple cider vinegar, olive oil, bakery bread.
- Cleanses: Bentonite clay 4 doses, activated charcoal 3 doses
- Vitamins: C, D3, Zinc, all in moderation.
- Probiotics: Swanson Epic Pro (with LR-32), 21st Century Super Strength Acidophilus Probiotic Blend, Lactobif Probiotics.
- Environment: avoided all mould, chemicals, processed foods.
- One Eltrombopag 25mg daily for 4 weeks.
- Prednisone plan: 3 days of 80mg, 4 days of 60mg, 4 days of 40mg, 4 days of 20mg
- Platelet count improves to 150 and I decide to stop taking Eltrombopag.
- Platelet count drops to 7 in 5 days so start Eltrombopag 25mg daily again and another course of Prednisone for 10 days.
- Platelet count quickly climbs to 195 and eventually to a high of 295 around March 16th.

March 16th to May 9th
- Blood test (FBC) weekly on Wednesdays.
- Eltrombopag 25mg, 8 pills at 1 every 2 day, 4 pills at 1 every 3 days, 2 pills at 1 every 4 days, 1 pill at 5 days, 1 pill at 6 days, 1 pill at 7 days.
- Platelet count does not fall below 219 again.

May 10th to June 10th
- Blood test (FBC) every 2 weeks on Wednesdays for 2 months.
- Off of Eltrombopag and Prednisone.
- Stopped probiotics and vitamins.
- Diet: non processed foods with the occasional exception.

June 11 to present.
- All back to normal and I still have my spleen.
- Liver and kidney test with no issues.

Post Updated October 13th 2017 NZ time
Some more info to mull over.
- I exchanged saliva with an H.pylori carrier early January; very nice!
- On 23th January, I made coffee through a new microfibre vacuum cleaner post filter; damn fine coffee.
- My art studio stunk of mould which was possibly in the wall under a roof leak; fixed by Mr. V Motivated.
- Eltrombopag (same as Revolade and Promacta) 25mg is not funded other than for splenectomy; $90 New Zealand per pill.
- The hospitals here will not discharge when the platelet count is less than 15.
- Here in NZ haematologists are contracted to the hospitals in their geographic zone.
- My haematologist is a 2.5 hours drive away, the other is 7 hours. Only they can prescribe Eltrombopag under "special authority".
- I made friends with 2 doctors and scored 28 pills which my haematologist was saving for my pre/post splenectomy.
- Initially my haematologist considered Eltrombopag, in my case, as a waste of my money, but now knows otherwise.

Post Updated October 14th 2017 NZ time
- For a month there was a special on my favourite sausage, so being me, I feasted breakfast lunch and dinner. I'm drooling as I type this.
- Chemical exposure: at work household cleaner fumes which made me feel bad when exposed. I use a water & vinegar blend instead now.
- Prednisone Side effects: more outgoing in personality than my normal "out there", pissing every 20 minutes (DRINK DRINK DRINK).
- Promacta Side Effects: taken on a empty stomach at 7:00am with no food/vitamins for an hour after, no side effects.
- Multivitamin Side Effects: headache so I stopped taking my multi and used singles.
- Pre existing conditions: one year old Subdural Hematoma 2cm from a vein bruise (near my knee) which was dissolving (gone now). Fit, BMI normal.

Post Updated October 31st 2017 NZ time
- Keywords: Idiopathic thrombocytopenic purpura, Immune Thrombocytopenia, mold, mycotoxin, Onyalai, benzene, Lactobacillus rhamnosus .

Post Updated December 20th 2017 NZ time
-Links:
https://en.wikipedia.org/wiki/Onyalai
https://www.pdsa.org/about-us/itemlist/category/7-about-itp.html

Thanks heaps well wishers! I prayed for you all on here - well only those of you who like that sort of thing, LOL.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61092

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Wow - that's quite a presentation! So the whole thing only went on for six months? You never had the splenectomy? It's very possible that you had an acute case that resolved. It's rare to see a remission occur that quickly.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61093

  • Fender
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Yes I still have it and I've updated my initial post - thanks. My doctor gave me a %1 chance of keeping it but I said I was determined to. Children recover quickly I've read.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61096

  • kae0603
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hoping for continued recovery!!!!

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61097

  • jayinchicago
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hi Fender,

Something trigerred in my head after reading your post.
My reponse to NPlate was very high when I was on Prednisone than when I was not on it.
I think the combination therapy put you thorough remission or this could be acute like Sandy said.

TPO with a immunosuppresant can trigger very high platlet response.

Regards,
Jay

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61111

  • Hal9000
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Fender, thanks for posting. Love that data!
If you look at my ITP chart I think you will agree that row 2a would apply to your case. That certainly is the quickest 2a remission I've got in my notes of treatment. Congratulations. I think the 1% chance your doctor gave your spleen has turned out to be way, way, way off.

Jay, that is an interesting realization. Makes one wonder if steroids can accelerate remission for type 2. A good test to try? Take steroids for awhile and see if your baseline Nplate response improves when steroids are discontinued?
On a perhaps unrelated side note, if you look through 'robert1959' you'll see that his steroid response sort of bubbled. It was ok for awhile and then stopped. Eventually achieved remission through Nplate.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61113

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I think it's interesting that the doctor would even give a spleen percentage. I'd say that percentage should always be 100% because the patient always has the final say about whether or not they want a splenectomy. It's rarely, if ever, a necessity.

As for steroids and Promacta together causing remission....it shouldn't be done that way. Counts shouldn't be that high while on the TPO's. I know, it's all "YAY we're clapping for normal counts!" but it goes against protocol. I'm glad that the whole thing worked for you, Fender, I really am, but these doctors are getting slap-happy with the combo treatments.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61115

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I've moved this post to my original post as an update, so it's all in one place. As there were no replies to this post, all good.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61124

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Sandi:
My count was 16 July 18
after prednisone went to 330. Could not handle the prednisone. Count dropped to 23. started promacta went up to 43 2 weeks later 53 one week later it is 73. I go back to dr. 11/6. I am on the lowest dose 25mg. so dr said if it continues to go up, I can take the pill every other day. If it continues to stay up, I can stop taking the meds. I will have to get periodic blood checks, however I am hopeful for a recovery.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61127

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Waterbug - there is every reason to hope for remission. I just hope your doctor doesn't try to take you off of the meds too soon. It can take time.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 10 months ago #61153

  • EmilyK
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And promacta comes in 12.5 mg pills so 25 is not the lowest dose.
Diagnosed Jan 2015 at age 50 with 13,000.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 2 months ago #63634

  • Fender
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Been a while and I thought I'd add an update.
Wooohooo! Still doing great and living a normal life - med free and eating what I want.
Thanks God for that.
Wishing the same for you.

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 2 months ago #63635

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Great news! Are you still on Promacta?

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Good Result/Success/Restored/Remission/Recovery/Cured 1 year 2 months ago #63648

  • Hal9000
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And Fender chimes in. With one of the shortest treatment times to full remission via a Promacta and steroid combination.

After reading 'mhausser' comments in 'Neve24' thread, you've got to wondering if Rituxan could work for you as backup some day.

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