TOPIC:

I was diagnosed with ITP 2 months ago. Finding this site has really helped me understand more about ITP and I'm extremely thankful that PDSA exists.

Questions for the group:

• While on immune suppressants, has anyone been on any meds for prevention (prophylaxis)? Since diagnosed 2 months ago, I've been prescribed Valtrex to prevent shingles and this week prescribed Cotrimoxazole (Trimethoprim/sulfamethoxazole; brand name = Bactrim or Septrin). I'm reading that this drug can cause ITP and not feeling comfortable taking it. Does anyone have any experience with Cotrimoxazole or any other meds for prophylaxis that I can/should recommended to my hematologist?
• I've tried both splitting my Prednisilone doses to twice a day or taking the full dose in the morning. When taking it all in the morning, I often feel fatigued by late afternoon. Doc says it's up to me how I take it. Does anyone have any recommendations around this and does it matter?

Summary of my experience:
* First week of November, went to clinic for spontaneous bruising that I've had for a at least 3 months. Found platelets at 8. Admitted to hospital for 5 days. Bone marrow biopsy shows normal. Given four day course of Dexamethasone 40 mg per day, Dexilant 60 mg per day, Span-K (potassium chloride) 1200 mg per day, Transamin 750mg per day. The day before discharge, platelets were at 61.
* 5 days later, platelets at 7. Put on another four day course of high-dose Dexamethasone 40 mg per day, Dexilant 60 mg per day, Span-K (potassium chloride) 1200 mg per day, Transamin 750 mg per day. This second course made me feel really sick 2 days afterwards (assuming due to withdrawal which I did not have after the first course - I was on Dexamethasone 2 weeks in a row).
* 4 days later, platelets at 3. Admitted to hospital for 9 days. Received IVIG, Prednisilone 30mg, Cellcept 1000mg per day, Dexilant 60 mg per day, Span-K (potassium chloride) 1200 mg per day, Valtrex 500mg. Platelets were above 100 when discharged.
* I was on 40mg of Pred for about 3 weeks (along with Nexium 40mg per day and potassium chloride 600mg three times a day). This week's CBC found my platelets at 22 so doc raised dose to 60mg and also gave me the Cotrimoxazole 480mg to take twice daily for 2 non-consecutive days a week.

Very frustrated but trying best to hang in there. I didn't know what ITP was until 2 months ago, now it's the top thing on my mind.

Happy New Year to all!

I take co-trimoxazole (Septrin) 480mg per day as prophylaxis but only because I have a Primary Immune Deficiency. I've taken it for a year now and it has had no effect on the ITP. I have never heard of anyone taking antibiotics or antivirals just because they are taking immunosuppressants but different countries do different things. Where are you in the world?

Very rare for Co-trimaxozole to cause a platelet drop but far more common for it to cause a high potassium level in the blood so I might question taking more potassium.

I was told to take the prednisolone before 8 o'clock in the morning in one dose but others here have been told different.

Good luck and hope things improve for you quickly.

No, no meds for prevention and I was on prednisone a long time.

My doctor gave me a reason I should take prednisone in the morning: that is when the body makes it naturally.

Good luck!

Wow, you sure are medicated! In all the years I've been here, no one has ever been given meds to prevent something that probably won't happen.

I'm wondering where you are too since all of that is very unusual. Can you get a second opinion? I think I might go in that direction at this point.

Thank you all so much for the helpful feedback. Should've mentioned where I currently am. I'm from new york, but relocated to here in hong kong for a job opportunity recently. Diagnosed shortly after being out here. Have wondered if it's the new surroundings and living outside the US for the first time, but docs don't think so.

I've been wondering if the preventative meds are really needed as well. I've switched doctors and gotten opinions from 3 doctors here regarding treatment options. Prophylaxis seems to be prescribed regularly here as I've been told due to opportunistic infections. I know the population is dense here, but not sure if that should be a factor. Biggest issue I have is there seems to be an insufficient number of hematologists here versus demand, so when I meet with one, the wait is long and I feel rushed through my questions. Again, glad this site exists.

Is it possible to experience adrenal fatigue while still on the same dose of Pred or increasing the dose?
In the last few days, I've been feeling more and more fatigued and loss my appetite. Also felt flu like chills the other night even with the heat on and it's not even cold here. This happened while I was on 40mg for the third week and when I increased to 60mg this week.

Being on and off of Dex like that and having your Prednisone dose raised and lowered could cause your adrenals to be a mess for a while. I'm sure fatigue could play a part in the symptoms of the steroid withdrawal, etc.

delta I lived in Hong Kong after my diagnosis here in the States [we moved to Tokyo a couple months after diagnosis and then to Hong Kong] - not once was I put on an antibiotic or all that other stuff you have been put on while we were in Hong Kong.

I had the most fantastic hematologist in Tokyo - in Hong Kong I had a Brit-trained hematologist and she knew nothing about ITP and went into a panic when my count dropped which of course put me in a panic since I was new to all of this.

Are you in the Hong Kong system or a private medical system there?

I know someone in Hong Kong, her daughter is the one with ITP. I don't recall her daughter being put on meds like that, she eventually had a splenectomy and now I'm not sure if she is on an antibiotic or not. I can ask.

Melinda -Great to find someone with experience in HK.

I have private insurance through my employer and have been visiting private clinics. All the hemas I've seen are educated here though.

Wish I could remember where the office was - Queensway near a subway entrance/exit. We too had private insurance. The hematologist I had wasn't all that great - but she was able to give me my count right away. And like I said, all she gave me was prednisone. We lived at South Bay on the island.

Thanks Melinda. I currently live on the island side a few stops from central. I'm honestly just comforted hearing from someone who has experience with both ITP and living here from the US. Thank you again!

I have always taken my prednisone in the morning because medium to big doses get me wired up, making it harder to sleep.

Thanks Karen. I'm taking the full dose in the mornings now. Makes sense.

Seems that no one here takes any prophylaxis specifically because of being on immunosuppressants. Further makes me think I don't need to either.

It's not common practice here in the US, even for people who are on chemo (not the people I've known, anyway). Things might be different in Japan, I don't know.

I wasn't put on antibiotics or anything else but prednisone when living in Japan, same with Hong Kong.

Melinda - Were you on maybe a lower dosage of prednisone? Also, side question, how long did it take you to get used to living out here? I'm still getting acclimated.

delta we moved to Tokyo when I was on 60mg and I believe it was 10mg when we moved to Hong Kong. I'm going to ask my friend if her daughter was put on any meds when she was on prednisone.

Honestly it didn't take long to get used to living there - probably coming from Tokyo helped. I was so excited for our family to have this opportunity I just jumped in - did make some good friends in our building and the one behind us so that helped. I got to the point where I'd get in a taxi and if the driver told me he doesn't speak English I'd tell him I know he does [shame on me]. I think the thing to do is just to get out and go, to see all you can see - you have been given a great opportunity to explore and know there are different cultures and ways of life besides what we know here. Now the big difference is I wasn't working, my husband was - I do know the business world is different.

How long are you there?


Editing this because I've been thinking (dangerous I know) - Valtrex is taken to treat shingles (I've had it 2x - once before ITP and once after ITP when I came out of remission and got myself all stirred up thinking I'd have to take prednisone again) To hopefully prevent shingles there is the vaccine - but it is a live virus and I was told ITPers shouldn't have live virus vaccinations.

And according to the NIH, yes people taking immune suppressants are at a higher risk for shingles.
www.nlm.nih.gov/medlineplus/magazine/issues/winter10/articles/winter10pg16-17.html

You are on prednisone, Valtrex and Cotrimoxazole now?

I'm wondering if it's possible that protocol changed since you were there, Melinda? Who knows.

I was always aware of the possibility of shingles when I was on Prednisone, and even worried when I had to take my kids to the pediatrician. I didn't want to run into any kids with chicken pox. I didn't have a problem back then though. Maybe chicken pox is going around in Japan? They vaccinate kids for it now here in the US, maybe they don't in Japan?

I think I'd check into that and find out why they are trying to prevent it. Long term antibiotics can be a double edged sword. There are many people here on Prednisone, and very few have had shingles because of it.

I just came off dexamethasone.I was on it for 4 days every 2 weeks. For a total of 6 treatments. Thats about 3 months. I took 2 antibiotics to prevent thrush but thats it. Now, that i am off the meds I think I do have adrenal insufficiency. Its only been a month since I came off the steroids. I am slowly recovering from the effects.

Why take antibiotics to prevent thrush..they are known to cause it.

They have the chicken pox vaccine in Tokyo. But Sandi, delta is in Hong Kong.

Ooops, wrong place! You know what I meant. I'm just guessing here.

Thank you all again for the helpful feedback. Really good to hear from folks who are also going through this experience.

Melinda - Plan is to be here for two years. Relocated with my wife (she doesn't work). Still getting used to it, but you're right about the great opportunity to experience living in a place outside the US.

Initial doc gave me valtrex. Current doc took it off the list and said it's not needed. Currently on prednisilone 60, potassium chloride, cotrimoxazole, nexium (which I also feel I do not really need but they automatically prescribed it - I've actually stopped taking this in the last few days and don't have any stomach issues).

This week realized I have thrush and added nystatin (liquid form for swishing then swallowing).

@Kinetic - Thanks for sharing your experience. Glad to hear you are recovering. Dex was awful (on it for two weeks in a row) and my counts went even lower after stopping it each time. Sounds like it worked for you which is great.

Has anyone taken slow release potassium chloride tablets during treatment?

I just read articles on pubmed that the tablets have caused serious ulcers in small intestines.

Doing business is different isn't it [was more so in Japan]. Tell your wife to join an expat women's group - I met ladies from all over thanks to that group. And you 2 take advantage of travel whenever you can - even bus trips into the mainland or the jet foil to Macau. Enjoy the restaurants (we ate in some there that I would never even have walked into if they had been here ). Is the Mandarin Hotel still there - they used to have the best "cake shop" & every now and then I'd bring a couple goodies home for dessert.

I put ITP on the back burner and enjoyed - then when it was time for a count I'd panic because my hematologist would panic, I'd meet my husband for lunch and cry. Next day I'd take the bus to Central with friends and put ITP on the back burner again. Not easy since this is all new for you (the ITP I mean - was new for me when we moved to Tokyo).

Does your company give you and your wife a home leave after you have been there a year? If so you could contact a hematologist at home for an appointment when you are on home leave. I already had a hematologist at home since diagnosed about 2 months before moving. We kept track of my count and what dose of prednisone I was on and if I was sick at the time of the count, my husband made a spread sheet. You might want to do that too.

delta the Nexium is probably because prednisone can be hard on the stomach. I wasn't told this & was never given anything like that - but others I knew did.

Never have taken slow release potassium chloride - is it treating you ok?

Sorry about the thrush - that must be miserable.

Melinda,
Yes, doing business is different. Learning and sharing customs and norms. Fascinating and makes me better and more appreciative too. You're right about exploring more. Really need to. Thanks for the recommendations -I shared with my wife. Shortly after arriving here, we did visit Macau for a weekend and saw the ruins and walked around the city. Have not been to the Mandarin and will add to the to do list!
Yes, I do have leave to take but not planned yet. Maybe in the summer. Moving my notes to a spreadsheet is a great idea.

I do get occasional abdomen pains but no idea if it's just gas from food or prednisilone or potassium chloride. Actually, I took my third dose of potassium chloride 600mg right before I slept last night and felt a burning sensation initially in my stomach/chest area and then in the abdomen. Bad idea to take before trying to sleep. Already barely sleep being on pred.

My first experience with thrush. Was given Augementin for a cough at the hospital for a week. Might be because of that.

So it sounds like it is not generally standard to automatically prescribe Nexium/Dexilant with corticosteroids. Usually given later on if you are experiencing issues. Is that fair to say?


All in Group,
Do most start with only Prednisone and no other medications as well?

Also question about being sick, is it ok to taper down while you are sick? From your experiences, does it make is better or worse?

When my folks visited us I took them into the mainland - think it was a hydrofoil, from there we got on a tour bus and toured Shenzhen and then a train back to the island. We had a ball! Did a bus trip into the New Territories when my ex-brother-in-law came. The bus trips were a good way to show them around areas we weren't familiar with.

Another idea - husband's company had an office in Beijing, someone there set us up with a taxi driver when we went there, Mr. Wu picked us up each morning at our hotel and he stayed with us all day and dropped us off at our hotel before dinner. That was super!

The ruins in Macau are very interesting.

delta my hematologist or MD should have put me on something for my stomach when prednisone was prescribed - that's my opinion.

I don't know whether if sick one should wait to taper the prednisone dose. I was off prednisone the time I got the real flu and my count went up to 401k. So for some being sick may bring up the count.

Delta:

Prednisone can cause potassium levels to go down, but most people do not have a problem with that. Once in a while it does happen, but it is usually treated after it's discovered. If a person is taking potassium, the levels have to be checked frequently because if the potassium level gets too high, it could be serious. I've taken potassium (script) and it can cause stomach problems....pains, diarrhea, etc. See if you can find out what your last potassium level was and go from there.

As for the Nexium, most doctors do not prescribe that with Prednisone, but it is one that probably should be given. Prednisone can eat away at the stomach lining and it doesn't hurt to prevent that. It probably won't happen after one or two rounds of steroids, but if you are a person who has GERD or frequent indigestion, I'd stick with that one.

Most people are given steroids as a first-line treatment. If counts keep dropping, people move on to the next treatment either at the suggestion of the doctor or the patient. You might have to prompt that since many doctors just keep pushing the steroids.

Taking antibiotics in addition to Nexium and Prednisone is a perfect set up for thrush. I've had it countless times. My concern is the imbalance of good bacteria that will be going on. It's a perfect set up for C-Diff or other gastro problems. All this prevention can cause problems too.

Yes, it is okay to taper when you are sick. Everyone is different as to how counts will respond in that situation. Some antibiotics can cause counts to drop, so can an illness, but they could also go up or stay the same.

Sandi,
Really grateful for the advice. I have not had a potassium level check. It was something the docs automatically added since the start. Current doc has me taking 600 mg of potassium chloride three times a day (1800 total). Wonder if related to my fatigue and loss of appetite. Funny thing is I've been losing weight as I hear most people gain weight. I've mentioned fatigue to the doc and was told it's not related to anything I've taken.

I've asked about Promacta but doc stated that there are concerns once you are on it and stop, platelets can drop to even worse levels.

Just read about C-Diff. Horrible. It's a fine line balancing prevention and additional issues. From what I just read, thinking I should take probiotics. I've taken them in the past and they usually make my bowels loose . Sorry for being descriptive. Do you think it's ok to take probiotics at this point?

Melinda,
Thanks for the suggestions and helping to get my mind off ITP. I have not been to the mainland or the new territories side. Bus trips sound like a good idea. I'll stop by a travel agency one of these days to get more info.

Wow! 401k when getting off prednisone. That's great!


Thank you both for the feedback on getting sick. Surrounded by sick people as it's flu season here. Better safe than sorry with the Nexium. Back on it.

I always take probiotics when I'm on antibiotics. I also eat a lot of yogurt because I do take a proton pump inhibitor for GERD and have been on Prednisone for the last nine years. I also take NSAID's and aspirin so between all of those, I have stomach issues. If you can tolerate the probiotics, it wouldn't hurt. That is a lot of potassium you are taking there. My doctors have always been really conservative about potassium use and have only given it when my levels were below 2.5. I do take an OTC daily but it is low dose.

Promacta can cause counts to drop if you stop taking it, but people have been able to get off of it successfully and studies are showing that is can cause remissions for some people. The side effects are few for most. I wouldn't rule that out....check out the posts about it here on the Forum. A doctor who has current info about Promacta will not dismiss it so quickly. It has done wonders for many people. Your counts are great though, so you might not have to think about that for a while.