New, Questions, Fatigue

Routine blood work during my annual physical found my platelet levels to be 52,000 on 12/23/14. Went for a retest 1/5 and the count was 45,000. I was able to get into a hematologist after my primary care doctor freaked me out on 1/13. At that visit my count was 47,000. My last count on 2/10 was 52,000. We are in 'watchful waiting' mode and I am fine with that. Platelets I have are 'high functioning'. I am comfortable with that. I already have osteopenia so am not a good candidate for prednisone. I have learned so much reading everyone's posts.

I do have some questions - I do experience fatigue. I am working full-time as an executive assistant. High stress. My Doctor seems to look for reasons other than ITP. None have been found. Iron and B12 are good. Any thoughts?

Also, what are thoughts on medic alert bracelets? I am a worrier. And the medical information in the event of an emergency being relayed properly worries me, especially when I travel.

I appreciate any advice or comments.

Bet:

Fatigue is different for everyone. Some people have it, some do not. I didn't really notice it until my counts were below 20k.

Stress can play a huge part in fatigue, so the reason could be that. Sometimes there are other factors such as Vitamin deficiencies or thyroid disorders (to name two), so it's a good idea to check some things out instead of just assuming it's ITP. You don't want to miss anything.

As for the bracelets...some people like them and some do not. It's up to you.

I was also recently diagnosed this past summer. I have been on prednisone since august and have been tapering down very slowly. I had been doing well with high platelet counts unless I began to drop down till 10mg and they slowly started to go down. I eventually tapered to 5mg and they went down even more so I went back up to 10mg but they have stayed low. trying to decide what should be next treatment option. I don't want to keep taking steroids as I am worried for the long term side effects (side note, how long have you been on steroids or how long for a time period have you taken them?) I have many questions.. :blink: but I will start with that

Smit:

When I was diagnosed, I was on Prednisone for about 3 months, started at 60 mg's and had a slow taper. My counts stayed up for about four months then dropped again, and I started Prednisone again at 40 mg's. That went on for another few months. I then did smaller doses over the next few years, got tired of that and used Rituxan.

At this point, you have several options. Rituxan is one, and N-Plate or Promacta is another. Keep in mind that counts do not have to be normal; anything above 30k is safe for most people.

smvitale what is your count? Is it safe? Are you having symptoms? I was on prednisone longer than should be, but that was my choice since we had moved overseas after diagnosis and I did not trust my hematologist. When I did taper it was very slow.

bettek I can't say I ever had fatigue due to ITP - due to not sleeping from high doses of prednisone, yes I have an alert bracelet - I keep it in the car, don't really wear it any more.

Both of you - keep us posted!

Thank you Melinda and Sandi!

My counts have been about 23-27 for the last two months and I have been on 5mg then back up to 10mg but I dont think the pred is working anymore..however for the most part I feel completely fine other than the low counts.

My doctor is considering trying another steroid before we do anything else. I believe it is called Decodraine or something like that. It would be a very high dose for four days followed by a low dose of the pred..have you or anyone heard of this? (I am afraid that the high doses is going to ruin my skin and make me break out, I know what is probably the least of my worries but it happened when I was on the high dose of pred and it really bothered me)

Also, did you ever receive a bone marrow biopsy before starting the rituxan ? My one doctor is very adamant about and my other said I do not need it. Thoughts? I am really trying to avoid that one lol

Decodraine or something like that. It would be a very high dose for four days followed by a low dose of the pred..have you or anyone heard of this?

A Dexamethasone (Decadron) pulse is fairly standard next step after Prednisone.
Usually it is taking 40mg dose of Dex for 4 days.
You will probably not be thinking about skin breaking out while on Dex. It is interesting stuff.

Basically, the 40 mg dose of Dexamethasone is equal to a 267 mg dose of Prednisone.

www.globalrph.com/steroid.cgi

.

smvitale2,

The treatment you refer to is called high-dose dexamethasone, or HD-DXM or sometimes just HDD.

The usual protocol is 4 days of dexamethasone at 40 mg. 40 mg of dex is like 280 mg of prednisone, because it is much stronger. Often it is given repeatedly - every two weeks or every four weeks - for four or six cycles, for much better sustained results.

Some researchers have gotten really excellent results with this approach, especially when repeated, in terms of sustained remissions. If you tolerate it fairly well, I would recommend (based on the research I have read) that you do the repeated cycles. This approach is not widely used, at least among people on this discussion board. Where are you being treated?

The advantages are that a 4 day course is not long enough to suppress your adrenal gland, or to develop an insensitivity to glucocorticoid steroids, so tapering is not necessary; nor is there significant weight gain or moon face. It has been shown to be often effective even for those patients who do not respond to prednisone. As a first line treatment, it is safer that Rituxan (rituximab), less permanent than splenectomy, and cheaper than TPOs.

The main disadvantage is that the psychological effects can be fairly intense for some people (but not so bad for others). Yes, your skin will probably break out, but it will begin to clear up soon after you stop taking the dex.

Some researchers have also had good results adding HD-DXM to treatment with Rituxan.

My wife has had HD-DXM several times, and was able to go about 6 months without treatment. The psychological effects each time were unpleasant, her skin broke out, her appetite was excessive, but it only lasted several days. More recently, she has had HD-DXM along with "low-dose Rituxan" (another topic!).She has had what is called a "partial response" (meaning her platelets are remaining above the treatment level of 30k) for about six months and is holding steady around 40k. We have no way of knowing whether this last response has been to the LD-RTX, the HD-DXM or to the combination.

Finally, I would refer you to this thread for a more in-depth discussion:
pdsa.org/forum-sp-534/7-treatment-general/27806-prednisone-versus-high-dose-dexamethasone.html

wierdjack,

I read somewhere that dexamethasone crosses the blood-brain barrier more readily than prednisone, which which is one additional reason why the psychological effects of HD-DXM are so "interesting".

Smit:

Many of us have had a bone marrow biopsy. It's really not necessary for ITP although some doctors still perform them. The information gained is not all that useful. If you do decide to get one though, they are not as bad as they sound. They numb the skin and muscles pretty good and the only time it really hurts is when they extract the marrow. It's a quick jolt and over before you even realize what happened. It took about 20 minutes in the Drs. office and I left with a band-aid on my butt. You feel sore for a few days, like you got kicked by a horse.

The Dex sounds scary...equivalent to 280 mg of pred?? I felt weird on 60mg I don't think I would be able to function normally on that..

Another question, but have you guys ever stopped treatment for a period of time to give your body a break? Even when i was first diagnosed my platelet count was never lower then it is now on the pred. I fell like I want to detox before I try anything else? Thoughts on this??

Smit:

Yes, people do sometimes decide not to treat, especially if the meds are not working. Whether or not they can or should do that depends on the symptoms.

smvitale2 wrote: The Dex sounds scary...equivalent to 280 mg of pred?? I felt weird on 60mg I don't think I would be able to function normally on that..

Here is the link again for the chart that shows various steroid equivalencies. Compare the two.
[url] www.globalrph.com/steroid.cgi [/url]

One can function normally on Dex pulses...it is just a different normal.
You get accustomed to using it now and then, life continues.




.

smvitale I did have a bone marrow biopsy - I was diagnosed in 1989 and I assume it was the norm then. I have not had Rituxan but a couple years ago my hematologist did do some blood work to see if I could have it - I don't remember his exact words about the blood work though.

Once you tapered prednisone did the break out go away - mine wasn't too bad and did go away.

Sounds like you have 2 doctors who do not agree - which doctor says you need a BMB and which one says you don't need it.

Mine was done when I was put in the hospital with my count at 11k and dropping - I'll be honest, it did hurt - but when I finally was given a hematologist she told me had she done it instead of the hospital doctor it would not have hurt.

My new [as of January] hematologist said she would go with Dex if I needed treatment again, I'm not fond of what I read about it or have heard here from those who have been on it - so she & I would have to discuss that.

Regarding stopping treatment - it never crossed my mind, but my situation was different. We had moved overseas and my hematologist didn't know a thing so I was afraid to stop treatment.

You are your own best advocate.

What treatments have you received? are you count stable now? Have have you heard about the Dex?

Thanks for all your help

smvitale my treatment was prednisone [started at 60mg - in fact moved overseas on that dose] - went into what I call "remission" for 9 years then in 2002 had a tetanus booster [found it was a Td] which tanked my count, refused prednisone so had 1 WinRho IV and have been with decent counts since.

Just what I have read about Dex here makes me not want to take it - even what weirdjack said "One can function normally on Dex pulses...it is just a different normal." - what Rob said " which is one additional reason why the psychological effects of HD-DXM are so "interesting"." makes me not want to take it.

However I have learned to never say never - I would really have to question my hematologist about it and what any other options would be.

Melinda wrote: Just what I have read about Dex here makes me not want to take it - even what weirdjack said "One can function normally on Dex pulses...it is just a different normal." - what Rob said " which is one additional reason why the psychological effects of HD-DXM are so "interesting"." makes me not want to take it.

However I have learned to never say never - I would really have to question my hematologist about it and what any other options would be.

"
On another thread I wrote: [Ellen] dislikes the treatments, but there is no taper and negligible weight gain or moon face, and the negatives don't last for long. Ellen has had a much easier time of it than what I have heard from a lot of people on prednisone."

And DeeDee wrote : "I tolerated the side affects very well. I did a total of 4 pulses spread out two weeks in-between each pulse. You do feel a little bad when you get to the 4th day (tired from the Decadron). But, overall, you sort of know that they are not going to damage you as much as some as the other medications. ... I tolerated the dexamethasone better than the Prednisone. If I relapse, This will be my first line of choice..."

There seems to be a lot of difference in how different people respond to all of these treatments. IVIG put Ellen in the hospital for four days, for example, while others just find it boring. The good thing about the dex is that if, for you, the side effects get to be too much, you can quit and things return to normal fairly quickly.

Agreed.
As nasty as Dex pulses can be, for me (perhaps not for everyone) they are far easier to live on than constant Prednisone use. Which is why I have not taken prednisone in over 11 years.


.

Right, Dex side effects last about a week. Prednisone keeps on giving for months and side effects accumulate. I tried to search some Dex experiences but there were too many posts to weed through. We can't just go by Jack because he is weird and enjoys the hallucinations.

I tried once, for a 4 day pulse. The effects did last a week after the last tablet. I felt very drunk the whole week and couldn't walk straight. I was scared that the feeling wouldn't go away, that was probably the most scary part of it. I wouldn't do dex pulses again but it was worth trying it once. My count went up nice and high and a week later crashed down to a count of 2.

I also had a dex drip during surgery once. That resulted in closed eye hallucinations for the next 5 days. It was interesting but again I was scared it would never stop. Sleeping was difficult because closing my eyes would have me see whole desert scenes, pyramids and castles and I couldn't rest.

I also tried dexa once, hope to never take it again. I took a half dose 20mg for 4 days- I was afraid to take the recommended 40 mg. Not fun! I was so wired and over the top I was afraid to talk to people, I was too INTENSE. Running full speed but couldn't accomplish anything.

I had audio hallucinations- the noise inside my head was like an orchestra tuning up with everyone in the audience talking at once. Sleep was fitful at best. On day 5 I was exhausted and depressed, felt hopeless. Day 6 was better.

My plates rose to 95K for 5 days, then crashed back down. It was too harsh a treatment and for me not worth it.

How was your response to prednisone? What other treatments have you tried? how are your counts now?

hi smvitale~ I respond to prednisone but counts do not stay up. I have been on a low dose for several years, it has given me bone loss. I started with normal bone density, I now have osteopenia. prednisone is not good long term. I am taking 1mg now, tapering off slowly.

I have also tried dexamethasone, Rituxin, Promacta and Nplate. I am currently on Nplate which is working well for me. My counts are around 40K-50K with little to no side effects.

If I had counts in the 10K-20s without treatment, I wouldn't do anything. But you have to look at symptoms. I don't have bleeding problems. Some people have serious bleeding at low counts. I treat because my counts will fall to 1K or lower if I don't.

I've had ITP diagnosed since 2008 and have never had a bone marrow biopsy. I've been to 3 respected hemotologists in the San Francisco area who agree there is no need for a bone marrow biopsy, they say they can get all the information they need from a CBC. good luck!

It is fascinating to me that people respond so differently to this drug. It seems that people either say it is horrible or "not so bad" with little in between.


Or is it the dosage and not the drug? Has anyone been able to handle high doses of prednisone but not dexamethasone? Or vice versa? Remember: dexamethasone is 7 times as strong as prednisone.

I managed 60mg prednisolone okay, well I did get a tremor that took a year to completely resolve. But 20mg dex for 4 days was awful.

The question of fatigue is interesting. I had experienced the odd feeling of attempting to do some activity, like vacuum cleaning or changing the bed sheets, and being completely overwhelmed with exhaustion almost immediately. I would continue but feel terrible. Then I went to one of the UK patients' conferences where a speaker talked about fatigue in autoimmune conditions and explained that there are two sorts of fatigue, one the sort I was feeling and the other which caused sleepiness.

I have never experienced the sleepiness sort which is why I had felt a bit of a fraud. She explained that they did not necessarily go together and the one sort was just as debilitating as the other. This somehow made me feel better and it was as though I had been given permission to feel ill. From then on I accepted how I felt and just went with it, and took longer to do things and sat down when I needed to.

I've been pushed into a sort of remission with Nplate and now on no drugs, with my last count being 116 and I no longer have that overwhelming exhaustion feeling.