Search Results (Searched for: )

  • MelA
04 Sep 2023 13:52
Replied by MelA on topic Here we go again!!!!!!
 Have you 2 let Jeff know what is happening?
  • mrsb04
04 Sep 2023 19:37 - 05 Sep 2023 03:11
Replied by mrsb04 on topic Here we go again!!!!!!
Mel. It’s only happened the once to me. I have just logged on with no problems but will contact Jeff with screen shots if it happens again. 
  • CindyL
05 Sep 2023 09:45
Replied by CindyL on topic Here we go again!!!!!!
I've decided to not let it bother me, Mel.  It actually kept me logged in from yesterday.  I shut my computer down at night, so was expecting to have to log in today, but it came up as already logged in.  I'm not going to look a gift horse in the mouth.  Yeah, it can be annoying, but if it only happens every couple of months, so be it.
I don't know what else Jeff can do about it anymore.
I'm glad to hear your issues have seemed to straighten out too, mrsb.
  • CindyL
12 Sep 2023 09:23
How are your counts, mrsb?
  • Sydney
12 Sep 2023 09:39
Replied by Sydney on topic Nutrition and Platelets
Hello All, 
I’m new to this forum but have been perusing the PDSA website since my ITP diagnosis in September of 2020. This is my first post. 
When I learned I had ITP, my platelets were 30. My hematologist said if I get below 20, he would want me to start treatment, namely Rituxan infusion. I read up on that and the side effects greatly concern me as I already have other autoimmune diseases. I switched my diet to mostly vegetarian, eating a lot of sprouted pumpkin seeds, walnuts, peanuts, and kale. Aside from the benefit of losing weight, my platelets rose into the 50s. Then, in my research into foods that raise platelets, I discovered pomegranate juice. I drank 8 ounces daily for about 8 months and my platelets rose to 75. Very encouraging, and my hematologist said he doesn’t know how the juice works, but to keep drinking it because it obviously raised my platelets. Unfortunately, I developed high blood pressure (not from the pomegranate juice) and was put on Amlodipine. Through my own research reading scholarly articles and abstracts (which I can’t remember, sorry), I learned that pomegranates adversely affect most blood pressure meds (and antibiotics) the same way grapefruit juice/products do, so I had to stop drinking the juice. My hematologist never once mentioned this interaction. I stopped the juice and my platelets gradually fell down to 23 over the course if a year. Again, I adjusted my diet to drastically reduce my sodium intake to the point I no longer need to be on blood pressure medication. So, in August of 2023, I started back on the juice (I drink one 8.4 oz. bottle of POMONA 100% pomegranate juice a day on empty stomach) and my platelets are going up again (to 27 as of two weeks ago). If they continue to rise, I can confirm the pomegranate juice is highly effective. If my numbers go down again, my doctor will insist on putting me on Promacta. I took to heart the diet changes suggested by the PDSA website as well as from other well being sites related to ITP, and they’ve all made a positive impact not only in raising my platelets, but also slow yet significant weight loss the past 3 years. I’ll post here again with more news in a week or two with an update after a blood draw this Friday and another next week along with a consult with my hematologist.
From the beginning, he has really pushed for me to begin Rituxan and now Promacta if my platelets fall to 20. I’ve resisted. My doctor is relatively young and has never discussed dietary changes to increase my platelets. I feel if there’s a drug-free way to raise my platelets, that’s what I’m going to try. As patients, sometimes we must be the researchers; we must be our own advocate. At least for me, I’ve learned that my hematologist isn’t interested in diet changes. He has never even suggested it. He’s all about the expensive infusions and pills. Please understand I realize many people need infusions and drugs to control their ITP. I may be in that number one day, but until that day comes, if dietary changes can raise my platelets, I’ll continue my ITP journey with pomegranate juice, a low sodium vegetarian diet, and continued personal research. 
  • ITPguy
12 Sep 2023 14:00
Hello all,
I am a mid 30 year old that was diagnosed with ITP about 9 months ago, when I had a CBC with a platelet count of 1. I was completely refractory to steroids (dex and pred) and IVIG only had marginal effects. I got on promacta about 8 months ago and had immediate success. My platelets have stayed pretty stagnant, around 150, even with reduction of dosage from 50 mg, to 25 mg, to 12.5 mg every few days. 
I am now off the medication completely. Has anyone experienced long term remission due to promacta, and is it possible it is permanent? 
  • MelA
12 Sep 2023 14:03
Replied by MelA on topic General Remission Times with Promacta
I know nothing about promacta but I'm sure someone who does will see your post!
Just wanted to say congratulations and I really hope that your count stays up there!
Keep us posted!
  • MelA
12 Sep 2023 14:32
Replied by MelA on topic Nutrition and Platelets
Just a quick reply, will read this thoroughly later.
Wanted to say that Rituxan is not usually the 1st line of treatment - I'd question that too.  

Is your hematologist letting you help make the decisions on treatments?
I remember when a tetanus booster dropped my count to the gutter and my hematologist took out her pad to write a prescription for prednisone, which I had taken before - told her I would not take it because my son was getting married in a few weeks and my bruises matched the color of my dress.   She then had her people call my insurance to see if they would cover Win-Rho, they did and I had one IV and haven't had to treat since.   
  • Sydney
12 Sep 2023 17:08
Replied by Sydney on topic Nutrition and Platelets
Hello Mel,
Thank you for your reply. When I was first diagnosed, my hematologist put me through the usual tests including bone marrow biopsy (hip), spleen ultrasound (normal size), and 4 or 5 days of high dose of oral dexamethasone. The steroids did nothing for my platelets, so he told me if my platelets go under 30, he would discuss Rituxan treatment. I was very much against it because of the side effects and possible brain infection. My hematologist allowed me to make the decision to hold off on Promacta for two weeks to see if the pomegranate juice works. However, 2 weeks ago while going over my medication history with my new gynecologist, M.B., she asked me how long have I been taking Promacta? I said what? I’m not taking that! Not yet at least. She said it just came up on her computer screen that I was. Oh boy, was I not happy! M.B. remarked “Hmm…that’s a “cluster”!” So, you see, my hematologist is very gung-ho on me being on some kind of medication or treatment whereas I am NOT. He didn’t even wait the 2 weeks he said he’d give me to see if the pomegranate juice works! I’m not feeling very confident with him at this point, but all the other hematologists in my city are in the same health system so I’m doubtful a new doctor would be any different. They all push for these obscenely expensive drugs and treatments without discussing diet changes. My diet changes have worked so far.

i’m sorry your platelets went down after your tetanus shot. I learned that happens to most people after a vaccine of any kind, even in people who don’t have ITP. Good thing you put your foot down against Predisone! I’m very happy for you that Win Rho has worked for you! My doctor has never discussed Win Rho with me. Maybe my other autoimmune conditions exclude me from benefiting from it and that’s why he’s not mentioned it? I don’t know. Ugh. It’s all been so overwhelming…these past 3 years. 
  • mrsb04
13 Sep 2023 04:56
Cindy 
Last count was 60, getting another test on Friday but won't get results until Monday unless count is under 10.
  • mrsb04
13 Sep 2023 05:05 - 13 Sep 2023 05:05
Replied by mrsb04 on topic General Remission Times with Promacta
ITP Guy
My haemo told me she has a patient who only takes one tablet a week, I don't know the dose though.
 
  • CindyL
13 Sep 2023 09:31
That's a good number for you.  I forgot you were getting tests every fortnight now.
Fingers crossed you're not under 10!
  • MelA
18 Sep 2023 12:15
Oh mrsb that is a great count !!    Let us know what this next test shows!
  • Lman
18 Sep 2023 22:00
ITP and bodybuilding was created by Lman
Hi!
I used to do some weightlifting before I encountered ITP. I need to get back in shape a little. I once asked the doctor here and he told me it was fine and I could lift weights. I am worried about stretching veins and bleeding. Any ideas?
  • mrsb04
19 Sep 2023 03:16 - 19 Sep 2023 03:18
It was 30 Mel but I'm not worried. I have recently sustained a hamstring injury which has thrown me out of kilter completely. Spoke to a lovely registrar yesterday who said "30 is fine by me, you have no symptoms so let's not chase the count. Carry on as you are and retest in a week. Hopefully it is just the shock and stress of the injury causing it. If not then we will think about about gently tweeking your Avatrombopag dose." 
  • CindyL
19 Sep 2023 09:25
Oh, no, mrsb, I hope the injury isn't too severe!  And I also hope your count doesn't drop any more!
  • mrsb04
19 Sep 2023 14:15 - 19 Sep 2023 14:16
Thank you Cindy it is frustrating. I am normally very active but am now restricted to pottering around the house with one 15 minute walk a day. Fortunately for the dog a lifelong friend and her hubby are happy to take him out for walks.
An exercise programme  to follow  and back at the therapist in another 9 days. 
  • MelA
20 Sep 2023 00:13
mrsb I am so sorry about your hamstring injury, that must be painful and miserable!  So glad you have good friends who are happy to get some exercise with your dog!    I sure do like what the registrar said to you yesterday about your 30k and that if need be you can "gently" tweak the dose!  Sending you good thoughts!!
  • MelA
20 Sep 2023 00:15
Replied by MelA on topic ITP and bodybuilding
I have no idea about weight lifting - however if you have asked the doctor [hematologist?] and he/she said it was fine then I'd assume it is fine.  As you know since you used to weight lift you must start off gradually.
  • Lman
21 Sep 2023 22:37
Replied by Lman on topic ITP and bodybuilding
Hey!
Yes, I asked him again and he said lifting up to ~200 lb is fine. I asked about the major risks. Which of course he replied "Dropping weights on yourself"

I asked about specific cautions. He said checking the mouth for symptoms and checking skin superficial to the muscle with which I might lift weight would be enough. 
I'll stick to ice skating for now, lol. I am the only one wearing a helmet there. No body knows, but it is actually so brave of me to do so, lol. At the end of the day, I really don't blame ITP as, fortunately, most of the physical limitations are of the type "you can do x, but you should avoid it".  
  • MelA
24 Sep 2023 15:28
Replied by MelA on topic ITP and bodybuilding
Ice skating you can cut yourself with the blade :)    You have consulted your hematologist and have his opinion, now you have to do what you feel comfortable with!    

What is your count now?   I know after my 2 knee replacements I was very concerned about daily baby aspirin for a few weeks - darn little pills increased my count of all things!   Anyway you just do what is best for you.

Keep us posted!
  • Lman
24 Sep 2023 15:59
Replied by Lman on topic ITP and bodybuilding
I tend to be very cautious about blades. Actually, I have ordered a pair of skates. I hope they fit!

I had some cold symptoms and took a test on Friday which was 128k. But as the symptoms progressed, I started taking prednisone and I also noticed some red spots on my neck and mouth. I skipped today's skate session and will probably have to skip Wednesday as well.

I'm living in the US all by myself and it is hard though 
  • MelA
25 Sep 2023 00:18
Replied by MelA on topic ITP and bodybuilding
Ice skating is fun - nice you are enjoying it!   You should get into playing ice hockey :)   Hey, 128k is super!!  I never have gotten the lovely red spots in my mouth, even at 11k.    

You are doing well - keep it up!
  • Lman
25 Sep 2023 15:19
Replied by Lman on topic ITP and bodybuilding
Haha, thanks!

I like hockey as well. I'm not sure if it works for someone with ITP or not, lol. They tend to have better gears (and look less weird if you wear those gears), but not sure about bumps and hits.

Red spots are not lovely at all :P

By the way, how about yourself? Are you still taking Nplate or have the fortune to stop anything altogether?
  • mrsb04
26 Sep 2023 05:47
Count now 49, no changes to meds. Back to fortnightly bloods. 
  • CindyL
26 Sep 2023 09:12
That's not a bad number.  Slowly rising.  Good about the testing.
How's the hamstring injury?  That's part of the leg, right?
  • mrsb04
27 Sep 2023 04:22
Thank you Cindy. The injury is in lower buttock and is slowly improving. Back to see the therapist tomorrow. 
  • tracyberge
27 Sep 2023 04:33
Replied by tracyberge on topic Prolonged pain in muscles after exercising
Muscle soreness or stiffness after exercise, also known as delayed onset muscle soreness (DOMS), is a common occurrence and is generally not directly related to ITP. DOMS is caused by microscopic damage to muscle fibers during exercise or physical activity, particularly when you engage in new or more intense workouts. It is a normal part of the muscle adaptation process.
However, it's important to listen to your body and adjust your exercise routine accordingly. If you're experiencing prolonged or excessive muscle soreness, it may be beneficial to gradually increase the intensity and duration of your workouts. Give your body enough time to recover between sessions, and consider incorporating stretching or foam rolling exercises to help with muscle tightness and improve flexibility.
  • CindyL
27 Sep 2023 09:42
Boy, was I way off!
Glad it's getting better!  Even if it's slow going.
  • Saramkg
27 Sep 2023 10:52
Promacta and Plaquenil was created by Saramkg
My daughter is 10 years old and was diagnosed with ITP in January 2023.  She was treated with IvIG and prednisone in March with a temporary response and started promacta in June 2023.  We just received her first good count on promacta at 72,000 in September.  She also had a positive ANA, Smith and dsdNA antibodies but no physical symptoms of lupus. Her rheumatologist referred to it as evolving lupus.  Her rheumatologist recommended start on Plaquenil ASAP in conjunction with Promacta.  Has anyone had success with this combination preventing the further development of lupus and/or eliminating the need for promacta to increase counts?
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