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  • StrayKat88
27 May 2020 20:56
ITP and Antidepressants/Antianxiety Meds was created by StrayKat88
I'm looking for any input/experience folks might have with taking an antidepressant or antianxiety type of med while having ITP. I'm struggling with anxiety (mostly health related) and am considering taking a med to get some relief. I talked with doc and he suggested Wellbutrin, but it seems most all of these SSRI type of products have platelet count reduction as a possible side effect. Given that I typically travel in the range of 27-90, I'm not able to take much in the way of platelet loss. Has anybody found a med or even something in the "natural health" sphere that has helped them with squashing platelets in the process? Thanks in advance for any ideas/experiences!
  • raj369459
28 May 2020 10:04
Wanted to give quick update on my daughter - the hematologist stopped Promacta 75mg for now and her platelets increased to 66 yesterday. I have a feeling she might have some other auto immune condition like IBD related to Crohn's disease which is causing her to drop platelets. I have read an old article in BMJ that there is a chance that one auto immune condition may cause another condition. I think we are treating and focusing on ITP rather than the underlying condition of IBD. I asked for her GI to do endoscopy and colonoscopy once her platelets are stable at >100K. I wanted to make sure that this might be the root cause of her ITP although the doctors wouldn't agree with me. I sent them the study from BMJ and they said there is not much research in that area. I will keep you all updated on this. For now it's just wait and watch until her platelets go upwards to 100k.
  • CindyL
28 May 2020 10:43
I've been going through pictures to put on a disc for mum's viewing (I know this sounds morbid, but I don't want to be doing it at the last minute) and even though I'm not happy with the picture, I'll put it in. We didn't get one of my parents and us on our wedding day, so this is pretty special.
I've pretty much stopped "trying" to lose weight. But due to other health issues, we've changed the way we eat. I'm not a big sweet eater, but like to snack in the afternoons.
  • MelA
29 May 2020 19:18
Morbid, no Cindy. We already have us paid for and which cemetery we will be in.

I've given up on losing weight too - but I should eat smarter than I do. I do like sweets, will blame my Mom for that ;)
  • rizzo1018
30 May 2020 03:26
Replied by rizzo1018 on topic promacta and eating grapefruit
my doctor told me that so its the only thing i did different as he said grapefruit intrferes with the 75mg. promacta otherwise its just not working anymore .. promaxta had me at 40s / 50s the last 2 years so i just pray . 2 weeks ago i came in at 93 so i was stunned but then the big drop .. be safe and we need a cure bro .. are you in the u s a ?? jimmy
  • mrsb04
30 May 2020 04:03
Melinda and Cindy
I know this will sound totally alien to the pair of you but I envy you a bit.
After Rich died suddenly in 2011 I developed anorexia and went from just over 126lbs to 70lbs in a matter of a couple of months and ended up being treated by a dietician friend once I returned to work. I gradually put weight back to about 98lbs over the next year. I developed ITP 2 years after that and when put on pred thought I'd put on some more but that didn't happen. I'm still too thin and was 101lbs last time I went to haem clinic in February.
My plot is paid for. I bought a double one when Rich was buried saves my boys having to deal with it. The headstone has room left for my details too so it shouldn't be too much of a financial outlay for them when I peg it.
  • mrsb04
30 May 2020 04:11
Replied by mrsb04 on topic promacta and eating grapefruit
I'd ask for the evidence base on that.
I have never been told not to eat grapefruit and Eltrombopag information leaflets do not mention it.
There are medications that are affected by grapefruit but as far as I am aware it usually results in increased serum levels of the drug not lowered ones.
  • CindyL
30 May 2020 11:19
Mum inherited four plots, so that's where she and dad will go. Steven and I have our names on one of the others. Mum started right after dad died saying she should pay for her funeral. We had to convince her to wait til we got him taken care of. He was cremated, so his urn is in her room. When the time comes, I think the plan is to put the urn in her coffin. The only thing left to pay for for her is the opening and closing of the grave. Her parents are buried there and some people I don't know.
Mrsb, I'm afraid of what I'll do if Steven goes first. We have 24 years coming up this September. He's been out on disability for the last 3 years, so this lock down is nothing for us. I think I'm going to be so lost without him. Mind you, I am 7 years older, so I could go first. I'll probably be depressed for a long time. Hope you're doing better now.
  • MelA
30 May 2020 21:57
Anne I'm thankful you have put on some weight, bless you - that has to be a tough battle. You are winning which is the important thing!

We were thinking of our sons too when we paid for our cremations already - they don't have to worry about a thing now or put out any money. My husband and I celebrate our 51st anniversary soon.
  • mrsb04
31 May 2020 03:36
Cindy:- My left wrist is fine but gets tired as doing so much. Right one I'm having physio which is going to be a long slow job unfortunately but it is gradually improving. Have sent you a PM.

Melinda:- It is hard but I am sure I'm maintaining weight, eating more now I have a dog and take him out for long walks. I hope I am compensating for what I'm burning off plus now having a good supper each night before I go to bed. I recently changed my Eltrombopag time. I used to take it last thing at night when I was working but as I always get up at least once usually about 3am-4am I've started taking it then.
I don't get on scales at home, dietician told me not to do that as one can get obsessed with minor changes. The only scales I go on are at ITP clinic which I haven't been to since February . I was supposed to go a couple of weeks ago but it was changed to a phone appointment due to Covid. It will be interesting to see what my weight is once clinic opens again.
  • CindyL
31 May 2020 11:44
Glad to hear the wrists are getting better! And that you're putting weight back on! Replied to your message. The notification worked great!
We don't have kids, so my sister will probably have to be the one to take care of our needs. We started the process a few years ago to pay for our funerals, but that kinda went by the way-side. Time to start the process back up.
Early Happy 51st Anniversary, Melinda and hubby!
  • rryerson
31 May 2020 13:17
So Confused was created by rryerson
I was diagnosed with ITP 35 years ago(Platelet count was 17k) and treated with prednisone(I think) and treatment ended when platelets went to 50k. Platelets maintained between 50k and 80k and I had an Aortic valve replaced. 25 years later I was also diagnosed with VonWillebrands RM Type 2 after a laproscoptic gall bladder removal left me with a hematoma the size of a football and led to 10 months of hell to resolve hematoma. 5 years ago I was told I needed a cardiac cath and the protocol with taking warfarin for the heart valve was 7 days in hospital in order to stop warfarin and go on Heparin drip. I did this and my heart was fine. Less than 4 weeks later my platelets dropped to 2k. I was told to get to ER where I was put on 120 mgs of prednisone to start and put in ICU. Within a week my platelets went to 100k and I was released. My hematolgist started tapering me off the prednisone but my platelets also dropped especially when my dosage went below 20mg. And I was suffering incredible nerve pain, weakness and mood swings. Started me on Nplate and after 8 weeks my platelets went to 120-190k. Stopped the nplate and finished tapering prednisone its now 3 years since ITP treatments and platelets maintaining ove 100k. But my life has been wrecked as I am weak, have difficulty walking and nerve pain due to severe spinal stenosis. By 2pm i just want to fall on floor. My cortisol level was checked and blood drawn at 8am after fasting was 6.2. Am levels are supposed to be at high point and lowers as day goes on but endocrinologist says its normal.
Fast forward to now. Docs want me to have a biopsy on prostate(PSA went to 22) and they found a mass in my chest near esophagus and they want to biopsy that. I am petrified to go back on heparin as I am sure that that pushed me out of remission and wrecked my platelets. I want to inject lovonox? instead as I have done once before. Hematogist said he did a study on my blood and did not think heparin caused the problem but won't guarantee that. I am 65 and was hoping to have a few years left but I cannot go through all those years again with prednisone. Anyone else have experience like this and know of another way to thin blood safely? Sorry this was so long but I'm beside myself trying to figure this out.
  • midwest6708
31 May 2020 16:21
Replied by midwest6708 on topic New to ITP
I'm late to this discussion, sorry. My Rituxan experience isn't something I usually relate to newbies, because it's still scary even to me. But since you asked for both the good and bad, you can read my Rituxan experience here ~
pdsa.org/discussion-group/7-treatment-general/30010-prednisone-self-help-rituxan-nightmare.html?start=0

The ONLY thing I want you to take from my story is to not be cavalier about this drug. It has helped many people in this forum with their disease. Others have not been helped at all, but neither have they been harmed like I was. Just be aware that side effects don't always happen to the "other guy", and you have to be prepared for the consequences if they happen to you.

Also, just so you know... NPlate isn't a drug that's used for a set period of time, discontinued, and then expected to have lasting effects. It's meant to be used weekly for life unless a remission occurs. It's no wonder your platelets dropped when you stopped it. That's what would happen to most of us. If it worked to bring your platelets up, the dose should then have been tweaked to a point where it holds your count to around 50. I've been taking NPlate for years without any side effects. I just wish I'd never tried to stop it by turning to Rituxan. Bad lesson learned.
  • mrsb04
31 May 2020 17:49
Replied by mrsb04 on topic So Confused
I've nursed patients with HIT (Heparin Induced Thrombocytopenia) quite a few times
This may be of interest ashpublications.org/blood/article/129/21/2864/36268/Heparin-induced-thrombocytopenia
It lists alternatives to heparin towards the end.
  • MelA
01 Jun 2020 00:10
Anne you are doing fantastic!! Your dietitian is right, shouldn't be getting on the scales and really that goes for anyone trying to gain or lose. Sounds like your new schedule for taking Eltrombopag is easier for you. How is it going in the UK - do you feel the clinics will be opening any time soon? Glad to hear your right wrist is improving - do you think physio would help your left wrist too? I was supposed to see the orthopedic surgeon about my left shoulder to see what he thinks, probably would send me to physical therapy but had to cancel because of the virus - I have a feeling I'm getting a frozen shoulder, have a couple exercises from when I broke it so doing them until I can get in again.

Cindy, thank you - and an early happy anniversary to you and Steven too!

And Teen, if you are around - that Cinnamon Bun Cake is really really good! So glad you shared it!
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