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Prophylaxis

9 years 5 months ago #46209 by
Replied by on topic Prophylaxis

BUT SOME ARE MORE DIFFERENT THAN OTHERS!


Why thank you!
I have been aiming for 'different' all of my life! :)
Good to know I got at least one thing right.

As George Orwell never said;
'All animals are different, but some animals are more different than others.'

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9 years 4 months ago #46617 by delta809
Replied by delta809 on topic Prophylaxis
Update:
Underwent the second biopsy and aspiration. Seemed to be a bit more painful this time around particularly the aspiration. Probably because current doc wanted a larger sample or not sure if being on corticosteroids for 4 months has anything to do with it.

Results again show normal.

Been taking promacta close to six weeks at 50mg. Last CBC showed platelets at 20.

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  • 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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9 years 4 months ago #46618 by Sandi
Replied by Sandi on topic Prophylaxis
It can take time to see results. Keep going, you'll get there!
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9 years 4 months ago - 9 years 4 months ago #46657 by delta809
Replied by delta809 on topic Prophylaxis
Thanks Sandi.

Also still taking prednisilone. Just tapered down to 15mg after last CBC. Hoping to taper off soon. Tired of side effects and sleeplessness.

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  • 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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9 years 4 months ago #46659 by Sandi
Replied by Sandi on topic Prophylaxis
That should get better soon. !5 mg's isn't too terribly high. Sometimes the lower you go, the more exhausted you feel, so that might hit soon.

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9 years 4 months ago #46670 by
Replied by on topic Prophylaxis
Glad to hear the biopsy results were good delta! I think anything above 5mg of prednisone is high ;) You are doing well - keep your positive attitude [and enjoy Chinese New Year Celebrations!].

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9 years 4 months ago #46804 by delta809
Replied by delta809 on topic Prophylaxis
Melinda,
Thanks. Happy lunar new year to you as well! I did get to see some of the local celebrations. However, been sick with a cold that is taking a while to go away so didn't get out as much as I'd like.

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9 years 4 months ago #46806 by Ann
Replied by Ann on topic Prophylaxis
This is a great article about platelet production in ITP and how the TPOs work. It's written by Kuter and Gernsheimer with whom we are familiar so we know it is going to be accurate.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2789970/
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9 years 3 months ago - 9 years 3 months ago #47366 by delta809
Replied by delta809 on topic Prophylaxis
Updated count at 18k. Been on promacta 50mg for 2 months. Corticosteroids for 5 months. Hema is adding cellcept back into the mix (2000mg daily). Frustrating but continuing on.

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9 years 3 months ago - 9 years 3 months ago #47628 by delta809
Replied by delta809 on topic Prophylaxis
Updated count at 38k. Tapered pred down to 10.

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9 years 3 months ago #47854 by delta809
Replied by delta809 on topic Prophylaxis
Update: I've been sick with a minor cold and count dropped to 14. :S

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9 years 3 months ago #47856 by
Replied by on topic Prophylaxis
Delta you are taking prednisone, promacta and cellcept? Hope you are feeling better soon and your count goes back up! 2 of the meds are immunosuppressant right?

Aside from the cold how are you feeling?

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9 years 3 months ago #47911 by delta809
Replied by delta809 on topic Prophylaxis
Melinda,
Yes taking those plus nexium still. Doc wants to stop prednisone and keep cellcept and promacta once there is a better response.
Besides cold, still have abdominal and headaches at times which I assume is because of the pred.

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  • mrsb04
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9 years 3 months ago #47912 by mrsb04
Replied by mrsb04 on topic Prophylaxis
Neither of those from Prednisolone however had both abdominal discomfort and headaches whilst taking cellcept. They both disappeared when I stopped it.
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9 years 3 months ago #47913 by
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delta one of the possible side effects listed for pred is headaches, didn't see abdominal pain. But saw headache and stomach pain/swelling listed as possible side effects of cellcept and stomach pain as possible side effect of promacta. What does the doctor say about the headaches & abdominal pain? Sure wish your count would level out higher for you!

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9 years 2 months ago #47966 by delta809
Replied by delta809 on topic Prophylaxis
Asked doc again today and he said the abdomen pains can be any one of the 3 (prednisilone, promacta or cellcept). Said to watch if it gets worse.

My count surprisingly went up to 101k today. One thing I did differently is I stopped taking nexium the last few days. Doc thinks its not related.

Doc just stopped my daily 10 mg of pred.

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  • Sandi
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9 years 2 months ago - 9 years 2 months ago #47967 by Sandi
Replied by Sandi on topic Prophylaxis
Great count!

Prednisone can wear away the stomach lining and cause reflux. Usually that takes more than one round, but some people can experience stomach problems. I have been on Prednisone for a very long time and do have reflux, but no real stomach pain. I'd stick with the Nexium though.

CellCept is huge for stomach pain though. I've taken it and experienced it.
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9 years 2 months ago - 9 years 2 months ago #47968 by
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On the other hand, everyone is different. :)

I've used Cellcept twice for ITP treatment; First from 2004 to 2006, with no stomach problems ... and ... I have been using Cellcept again from February of 2013 until right this very instant. No problems at all really.

I used Promacta for 2010-2013 and had no stomach problems with that one either. Once I sorted out when to take it.

But, I used Prednisone for only 4 months at the start of this adventure and THAT messed-up my stomach. Nasty stuff. I could not get off of it fast enough! I much prefer Dex to Pred!

.

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  • 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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9 years 2 months ago #47969 by Sandi
Replied by Sandi on topic Prophylaxis
Rice cakes have caused me more problems than any of those drugs! Took me 9 months to figure that one out. Dangerous, those things are~ :woohoo:

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9 years 2 months ago #47970 by delta809
Replied by delta809 on topic Prophylaxis
Thanks Sandi and Jack

Now that doc has stopped the prednisilone, will see if I can rule that out. Been on corticosteroids (dex and pred) for 6 months.

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9 years 2 months ago #47973 by
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Rice cakes have caused me more problems than any of those drugs!


Luckily, the last time I had a rice cake was a couple of decades ago! :)

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9 years 2 months ago #47976 by
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delta that is a very good count!! Fingers crossed it stays up there!

Now he just had you stop at 10mg and not take prednisone any more? Think you will like being off it finally!

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9 years 2 months ago #48053 by delta809
Replied by delta809 on topic Prophylaxis
Thanks Melinda

Yes, he had me stop at 10mg. Now I'm aching all over and dizzy. I took 5mg today and will try weaning myself off in a couple of days.

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  • mrsb04
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9 years 2 months ago #48056 by mrsb04
Replied by mrsb04 on topic Prophylaxis
cellcept upset my stomach...coming of pred too quickly is very dangerous. Over here in the UK we have specific guidelines issued by NICE
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9 years 2 months ago #48061 by Ann
Replied by Ann on topic Prophylaxis
Oh delta, you will feel rotten going from 10 to nothing. You are doing the right thing going to 5 and then maybe go to 5 and 0 on alternate days for a further week. It won't make any difference to your count but will ease the side effects a lot.
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9 years 2 months ago #48062 by
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Yeah, for as long as you were on prednisone and than stopping at 10 I can imagine you are not feeling right.

The thing is the body makes 7.5 a day so to take more than the body makes and then stop it my thought is the body doesn't have time to adjust or to start making it again. I'm no doctor and I'm no expert, this is just my opinion. When I did my own taper I had been on pred too long and was afraid to get off it - so I did one heck of a slow taper.

Hope you are doing well delta!!

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9 years 2 months ago #48323 by delta809
Replied by delta809 on topic Prophylaxis
Thanks Mrs B, Ann and Melinda.

Tapered off pred for a few days. Feeling better actually and abdomen pains and headaches seem to be going away.

However count went down to 25k.

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9 years 1 month ago #48943 by delta809
Replied by delta809 on topic Prophylaxis
Update: Last three platelet counts have been in the 40k to 50k range. Seems the 50mg of Promacta is working as expected.

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  • Sandi
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9 years 1 month ago #48944 by Sandi
Replied by Sandi on topic Prophylaxis
Perfect! Great news!
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9 years 1 month ago #48947 by
Replied by on topic Prophylaxis
Well now that is wonderful news! You can exhale now and enjoy the great experience of living in Hong Kong!

(My new hematologist told me with a count of 50k she would ok brain surgery - not having it, she was just using that as an example :) )

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