New diagnosis lifestyle questions

Hello
I am newly diagnosed with itp... Have had multiple episodes of Petechiae on my legs for two years but my platelet count was normal after the first episode so just ignored them when they appeared. Recently had wet purpura and gum bleeding. Plts were 3... Got inpatient ivig and steroids with short lived response AND got aseptic meningitis. Have been on 60 mg Prednisone for almost two weeks and started promacta one week ago. Plts yesterday were reported as less than 3. Have a few questions if anyone can help

1. Do people work out? I used to exercise every day but am nervous about it with my platelets so low. I also have Petechiae covering my entire legs with almost no normal skin between after standing at work for a few hrs. What level of exercise do people do and is there a threshold you stop at?

2. I find myself incredibly fatigued but can't sleep (hopefully just the steroids). Any tricks? I work very long hrs doing pretty physical job and I'm just exhausted halfway through the day.

3. Does anyone drink any alcohol? Not to excess but a glass of wine with dinner would be great. My
Dr recommended absolutely no alcohol but I can't find much other information on this.

4. Do most people get a rescue therapy like ivig when they are this symptomatic? I'm terrified of the ivig headache/meningitis and am trying to avoid it but I also am not enjoying the blood blisters or looking like I have the measles.

Thanks in advance
D

Regarding #4, we were just discussing the merits of another rescue drug:
pdsa.org/forum-sp-534/7-treatment-general/29163-rho-d-immune-gobulin-winrho-aseptic-meningitis.html
It is something you should discuss with your hematologist next appointment, and not wait until you are dealing with an ER doc.

Hi D. Welcome.

I'll answer your questions as best as I can.

#1. Working out is dependent on platelet counts, as I'm sure you already know. Most activities can be done above 50k (within reason) , so if your counts are above that, you're good to go. Activities should be modified according to the count. You might be able to do some light exercise above 20k.

#2. Steroids do affect sleep and most people have insomnia during use. It's awful, but it gets better as you taper. We've all been there.

#3. Most people believe that alcohol in moderation is okay. Some doctors are very against it and some are fine with it. Wine can thin the blood however, so if counts are really low, your might want to avoid that.

#4. It seems as though you are doing two treatments that are not working out for you. There are other options. You don't have to have IVIG if you don't want it. You don't have to stay on Prednisone if it's not working (although you must taper), and you can try other treatments so that life can be more normal for you. N-Plate or Promacta would be good options to investigate. They have a good success rate with few side effects. Do your counts go up at all after IVIG?

Hi.
A lot depends on your count and your symptoms. Below 10, I don't think I would work out. Especially not with symptoms of bleeding.

I have a low tolerance for alcohol and I found that when my platelets were low my tolerance was even lower. Drinking has been debated many times on this board. It seems that most are fine with a drink or two. Alcoholism can be associated with platelet problems but I haven't seen anything to suggest that a drink or two is a problem. Again though you might want to be extra careful with such low counts and symptoms.

I also had a lot of fatigue with low counts. Maybe a sleep med to get you through this time and stay as healthy as possible?
Erica

Thanks for the fast responses! I'm still hoping the promacta will take effect since it's only been a week. My response to ivig only lasted a few days but did get my platelets up to 100. It took 3-4 days and they were back to single digits. I'm
Just struggling between how symptomatic I allow myself to get before biting the bullet and getting an infusion -
Will definitely ask my dr about that med!

One more question- somebody (smart) mentioned to me that orthopedic hardware can cause itp... I had a spinal fusion done in November and have some screws and a cage in my spine . Again- I can't find any information on this and wondering if anyone has heard of this. If so- does removing the hardware help? I don't need the hardware anymore now that the bones have fused.

D

For what it is worth, I think the reason for the alcohol restriction has more to do with steriods then ITP. I Totally avoided sugar of any kind while on steriods. Now that I am done with that nightmare, I have a glass of wine with dinner occassionally and my doctor is fine with it. That is just my experience. I hope the promacta starts to help.

My wife, Ellen, who has ITP has had 4 surgeries, first to correct hip dysplasia, then to resurface the hip joints. She has a wide variety of hardware implanted, both titanium and chromium alloys.

I did find this study:

www.dl.begellhouse.com/journals/1bef42082d7a0fdf,3277e99f7016683c,20e3f3d24a0c464f.html
A Nationwide Followup Study of Autoimmune and Connective Tissue Disease Among Hip and Knee Implant Patients
ABSTRACT
Because implants can provoke varied immune system responses, we assessed whether hip and knee implant recipients had an increased risk of autoimmune/connective tissue diseases (AI/CTDs). Using national registry data from Sweden, we compared hospitalization rates for AI/CTDs in 101,771 hip and 23,891 knee implant recipients to rates in the general population. Hip patients were followed up to 22 years and knee patients up to 14 years postimplantation. Our findings indicate that it is unlikely that hip or knee implantation results in any increased risk for most AI/CTDs. After long-term followup, the associations we observed with polyarteritis nodosa and fibrositis could be the basis for future investigations.

Anon - I missed that you were already on Promacta. That's good. It can take a while to work, so try to be patient. What is your dose? It can work within a few days for some and a few weeks for others.

IVIG is usually temporary. Sometimes aseptic meningitis can be avoided if you hydrate well the day before and the day of the infusion. Making sure they use a slow drip can also help, as well as the use of steroids. Sometimes it happens no matter what, but many people have found that those things help. As for when to get it, that depends on what you are comfortable with. Bruising and petechiae are not usually serious symptoms, but if you have mouth blisters or bleeding, you probably should treat. Most go by symptoms, not numbers. Since IVIG is so short-lived, how long after until symptoms show up again? I know counts drop in a few days, but do you also have symptoms that quickly?

I have not heard of hardware causing ITP. I have had two spinal surgeries with titanium rods and screws inserted and I did research it before I had the surgery. I didn't find anything. However, I am a believer that the body can reject any foreign substance or object, and can react with any sort of autoimmune response. How long ago was the surgery? Ask the smart somebody where he got that specific information.

I have been pretty symptomatic- everyday waking up with new oral blood blisters/tongue bruising in different area. I think I had three days a symptomatic from the ivig. Have had very short lived nose bleed and gum bleeding...but as long as it stops I'm getting more comfortable just waiting and watching. Hope I'm not being foolish staying home- but it seems counterproductive to get a treatment that lasts a few days and leads to being sick for five!

I've been reading through the posts and seems like people mostly hover higher in their platelets counts (can't seem to get mine above 3). Is it people's experience their first flare was the most severe? Or is this far outside the norm?

Some people are seemingly refractory to treatments. It doesn't happen often, but it sometimes does. After 18 years of being here on the PDSA almost daily, I have observed that of those people, nearly all of them do eventually respond to a treatment. You just have to find the right one or the right combination. Elderly patients have a more difficult time, so if you are young and healthy, your chances are good. So far, you've only had IVIG and Prednisone, right? Some people just don't respond well to those. I know you are trying Promacta, so that might kick in soon. Keep the hope.

I remember one woman here a few years ago who could not get counts up for months. Her counts were low like yours. Suddenly she responded to a treatment and has been in remission since. Odd things like that happen with no explanation.

There are more treatment options available for ITP than ever before. Hopefully, something will work soon. As far as getting IVIG when you are symptomatic, that has to be your call. You could try the things I suggested to prevent aseptic meningitis or you could suggest Win-Rho to your doctor. It isn't used often any more, but it is an option.

Thanks everyone- it's helpful to have people
to talk to on here.... Makes it seem less overwhelming

I have had a spinal fusion with a titanium plate too but I developed ITP while waiting for my surgery. I think it was due to some or all of the drugs I was on for 5 months after my disc herniated, Diclofenac, Omeprazole and Gabapentin. Or it could have been the flu jab or the typhoid jab I had a few months before that. Who knows!
I was refractory to Prednisone but Promacta worked well , gradually increasing my count from 3 to 150 over about 10 weeks so that I was eventually able to have the neck surgery successfully. Hope you soon see an improvement. What dose are you on? Unfortunately 3 years later I am much less responsive to Promacta but at max dose of 75 mg it is still keeping me safe from bleeding.The problem is likely to be one of age as I am almost 69.

Thanks-
I was somehow in completely different meds than you for my fusion...

.plts today were 4-lots of news blood blisters etc- pretty frustrating


At least dr told me I can give up on steroids and start tapering- also went up to 75 mg on promacta - how long did it take your platelets to start to rise?

Yes at 3/4 life is not great. I get blood blisters and bleeding nose and gums at that level too. You should be taking Tranexemic acid tablets if you are actively bleeding anywhere. Platelet transfusions for me are a waste of time and resources as I destroy the platelets as fast as they go in.I am sure that within a month however I started to see increasing counts. Remember not to eat foods high in calcium or iron for 4 hours before or after taking Promacta and also take it at least 2 hours before or after food. Just to be on the safe side I would leave 4 hours. I take it in the middle of the night if I eat late.No indigestion pills either as they are calcium rich.I started in the September 2012 and by 12th Nov I had had my surgery so not very long for count to rise. After the surgery the dose was reduced and my count fell to around 50 but I was never very stable even then. Hope the steroid withdrawal is not too bad; I felt awful, don't be surprised if you feel dizzy and spaced out but life does get back to normal eventually. Even with a very low count I try to get out and about as much as normal, driving ,walking ,gardening , holidaying but I've given up cycling in case of injury. Let us know how you progress.

Hi Anon-

Sounds like you are moving in the right direction- tapering prednisone and onto a better treatment, Promacta. Hang in there and give it time to work!

I have taken Promacta 4 times over the past 5 years. Sometimes I respond quickly- 3 days when I first start, and sometimes it takes over a week. Once I couldn't get a platelet rise on 25mg so had to go to 50mg. That got my counts going up over 50K so after a few months I was able to go back down to 25mg. I have seen the same thing happen to other people on the forum. They raise the dose up to 75mg and then after their numbers get up near or over 100K, they are able to lower the dose back down. Are you having any side effects from Promacta?

Yes, just my opinion, but I would not take Ivig if it gave me aseptic meningitis for a few days of high counts. Thats no rescue to me. I once had 5 days of absolute misery no-sleep crazy on dexamethasone for about 10 days of decent platelet counts- not worth it!

When you taper prednisone watch for symptoms of adrenal fatigue- flu-like body muscle joint aches, weakness, depression, dog-tired fatigue. Those symptoms and others may mean you are tapering too fast. take care and good luck!

Thanks posey and Margaret... Was starting to feel like there was a slim chance of me
Responding to promacta if I hadn't yet but decided to be hopeful instead ( this Friday will be about 2 weeks on it and 5 days on the 75mg dose).

Went from 60 mg pred to 40 mg today. Definitely feel the cramps but hydrating helps and they aren't unbearable- weirdly I was having leg cramps while on the prednisone too so am not sure its withdrawal or just dehydration. I think my coworkers will enjoy the non-roid rage version of me much more! Dr prescribed a fairly fast taper for me since I've only been on pred for 2
Weeks

I did get a script for the t acid- in case things get out of control

Will keep you posted- thanks for the encouragement!

Be wary of a fast taper. I was on 70mg for just less than 3 weeks and was also given a fast taper- it was terrible! I had to slow down because of the dizziness and diarrhoea . I agree that dexamethasone is also ghastly, even after just 4 days the withdrawal was bad and it had only a small brief effect on my count. I have never had a negative effect from moderate alcohol consumption,thank goodness and no side effects from Promacta. If you are bleeding make sure to have an iron rich diet as you don't want to get anaemic as well. Avoid iron pills though as they might affect the uptake of Promacta and would probably give you an upset gut.

Prednisone can cause potassium depletion which can cause muscle cramps. Stay hydrated and keep an eye on potassium. Gatorade has helped some people while tapering.

my platelets are still 4 after a week on promacta 50 mg and 5 days at 75mg. Still very symptomatic - although steroid taper is absolutely fine. working 12 hr days has left my with petechia all over everything and the mouth blood blisters are irritating. No dangerous bleeding though so still trying to manage without ivig. Getting very frustrated - anyone out there with similar experience and something finally work for them?

The dr says we will go up to 100mg next week if I'm still in the single digits and then try nplate instead probably. it seems doubtful I am going to respond to anything and have been living at less than 5 for about a month now.

If anyone has experienced anything similar and encouraging please let me know.... Part of me just wants to try a splenectomy and get back to some semblance of a normal life- right now I basically go to work and then hang out at home because I'm afraid I'm pushing it by working on my feet for so long everyday and the more I'm active the more petechia and bruising I get

Thanks

Yes, there have been stories like yours and as I said above, it can take time but usually something works eventually. I know it's frustrating, but patience is key. Hang in there.

Sandi is quite correct..patience is the key..it takes a while to find a treatment that works..I'm now on N plate which is my 4th second line treatment in 18 months and fingers crossed it is working..tapering steroids drops my platelet count but can up N plate dose if it drops too drastically