Dexamethasone Maintenance

I am (a 67 yr old male) now starting to 'seek a maintenance dose' of dexamethasone after having several cycles (20mg x4 days 3 wks apart) which started July 3 2015.
Treatment started when I got down to 19 count. Highest I got to on that dosage/cycle was 174.

My hematologist has now trusted me to 'play with it' (his words) to seek a comfortable maintenance dose that would maintain anything higher that 40 count. I have a standing order for blood testing so I can monitor any changes I do with my dosage or time in between.

So far, I have started my maintenance with 20mg (for 1 day) followed with a blood test 6 days later with 153 count. The plan is to do this for 2 weeks in a row (which I am into the 2nd by 3 days now) and do another blood test after 6 days. I am very confident that the next test, in 3 days, will be just as high if not higher.

My Concerns are of the dexamethasone side effects and wondering how I should 'play with it' to seek what works for me is going to be interesting.

Questions I have for anyone doing a 'maintenance dosage'... what did you find works for you
- did you take a lesser dosage for a certain period ?
- or did you take an average dosage for a longer period between doses?

Just thinking that lesser medication to achieve a sustainable count would be the best approach or is it best to take a higher dose and stretch out the days in between?

Thanks in advance for any input on this topic

Islander

Greetings Islander,

"Maintenance dose" and "dexamethasone" are not generally used in the same sentence.

Dexamethasone is a very strong steroid, about 7X stronger than prednisone, so prednisone is usually used except at high doses. You are on a high dose, but if you are thinking of trying lower doses you will want to switch to a bio-equivalent dosage of prednisone.

Steroids have serious side effects when used long term, in addition to the symptoms you are probably experiencing already. For that reason, after a brief trial with steroids, usually patients are switched to other treatments.

If your lowest count has been 19, you may decide not to treat at all, or only when needed.
How quickly are your counts dropping to 19? More importantly, how bad are your symptoms?
It is much more effective to treat the symptoms rather than the counts! There are plenty of ITP patients who live with lowest counts in the teens, without treatment and with acceptable symptoms. You respond well to steroids, and this means that you can afford to let your counts get a little low, and only use dexamethasone (or prednisone) as rescue treatment if you start getting bothersome symptoms, like bleeding gums.

The way most doctors over-treat, there is more harm done by treatments than by the ITP itself. For that reason, your goal should be to keep your platelets at a safe level, not a normal level.

My wife , Ellen, was treated with Rituxan August 2014. She had a "partial" response, so her platelets remain low. She had a dip into the teens, but recovered without further treatment, and is now in the sixties.

Personally dex is not a drug I would "play" with - nor would I stay on it indefinitely to maintain a count. And I'm not sure I'd like my hematologist telling me to play around with a med.

What count are you striving to have? You realize you can't pinpoint a certain count and say I want this count and then stay at that count.

My new hematologist told me she did not like counts going up high all of a sudden, dangerous.

I was going to say exactly what Rob and Melinda said. I've never seen Dex used as a 'maintenance' drug and I've never heard of anyone playing with Dex. I've been here for 18 years. Dex has a protocol that is usually followed. Other than one time, the only deviation I've ever seen of that protocol is when a lower than recommended dose was used.

Dex side effects have a way of sneaking up on you (short-term and long-term). Also, results can vary even though you might expect to see the same result over and over. There are other ways to manage ITP that can be far safer for the patient. The constant spikes and drop in counts can be just as dangerous as low counts.

Well to clarify... when my hematologist used the term 'play with it' it was because he has faith in my ability to monitor and administer the dex carefully to achieve and maintain a count above 40.

I only reached 19 one time and it was my lowest... that was when my treatment started.
My symptoms were few... only some gum bleeding while brushing my teeth at the lowest count.

I am aware of the swings in counts... but.. I was not aware that dex is that much (7x) stronger than prednisone.

However, I am now seeking a 'maintenance med dosage' and well off the high dose I was on previously.

For that reason alone... I would like to continue to reduce the dosage and increase the length of time between treatments striving for a count "around" 40 (or above).

For some reason the dexamethasone is my hematologist's favorite drug of choice.
He only mentioned prednisone once and never went back about it.

I have great faith in my hematologist simply because he has many accolades from his peers and awards as being the best in my Province.

Islander

Sandi... could I ask you to elaborate on this please?

"There are other ways to manage ITP that can be far safer for the patient."

and this also

"Dex has a protocol that is usually followed"

Thank you
Islander

Islander - why does your hematologist have "faith in my ability to monitor and administer the dex carefully to achieve and maintain a count above 40." I don't understand this. Nor do I understand that there could/would be a maintenance dose of dex. I do know that dex is one drug I'll avoid if I can.

Also messing around with dex is messing around with your adrenal gland.

Please read the PDSA's page on steroids:
pdsa.org/component/k2/item/96.html?Itemid=118

You can do a google search on Decadron (dexamethasone)

Someone who has a high jump in counts has a risk of stroke - that is why my hematologist doesn't like a quick jump in count. I don't see her for a while but when I do I'm going to ask her if she has ever allowed a patient to self-medicate dex.

Islander:

I understand the desire to take control of treatment. I was the same way when I was dealing with ITP. I believed that I knew what I was doing and I believe that you think the same way. I did similar things with Prednisone at times. That doesn't make it right.

The thing is, ITP doesn't need maintenance treatment. You could take 20 mg's of Dex once a week and keep your counts above 100k forever, but what IF you are taking it and your counts would have stayed up anyway on their own? You would have no way of knowing that and would attribute it to Dex. All you'd do in that case is accumulate side effects. Taking any drug to prevent a drop is overkill because with ITP, you only need to treat the drops, not try to prevent drops that may never happen. Some might argue that N-Plate is a maintenance drug and to some extent, it is. But it is only used when patients have consistently low counts and nothing else will get counts into a 'safe' range.

Here is another way to explain it. I have heard of doctors using Rituxan as a maintenance drug. The individual gets one infusion every three months to keep counts up. In 2004, I had one Rituxan infusion but had a reaction and couldn't get any more. My counts went to 150k a week later. I fully expected them to drop because one Rituxan infusion isn't known to keep counts up. That was 12 years ago and I haven't had to treat since. Imagine if I hadn't had the reaction and did maintenance every three months. By this point, that would be 48 infusions of Rituxan that I would have gotten but didn't need. I would have kept getting them thinking that Rituxan was keeping counts up all those years. ALL that expense and toxicity for absolutely nothing.

If 19k was your lowest and you had few symptoms, you are actually doing pretty good. Why not see if you level out first before jumping into treatment that might not be needed?

Here is Dex protocol:

Although it has been abandoned in the treatment of chronic refractory ITP patients,39,40 recent results from 2 large first-line studies with dexamethasone suggest both a high initial response rate and a substantial sustained response rate (Table 4). Administration of dexamethasone 40 mg/day for 4 days (equivalent to ∼ 400 mg of prednisone per day) produced sustained response in 50% of newly diagnosed adults with ITP. In another study, 4 cycles of dexamethasone (40 mg/day for 4 days) given every 14 days produced an 86% response rate with 74% having responses lasting a median time of 8 months.41 RCTs are needed to definitively assess these encouraging results and to distinguish whether pulse dexamethasone is the preferred corticosteroid approach with regard to response, duration of response, and toxicity.

www.bloodjournal.org/content/115/2/168.full?sso-checked=true

As for your other question about safe treatments, none of the treatments are actually 'safe'. They all come with side effects and risks. What I meant was that ITP treatments should be controlled and monitored carefully. You can't base a dose and dosing schedule on two consecutive counts. Your counts could respond better than you think and in a month, counts could go to 600k. People with ITP are at risk of blood clots, even more so than the general population. Also as I said, drops and spikes in counts could also be dangerous. If you are going to do this safely, you should be monitored weekly. You asked for our opinions, here they are. Dex is potent stuff.

Melinda wrote: Also messing around with dex is messing around with your adrenal gland.

Excellent point, Melinda! I didn't think of that and that is huge.

Thank you all for your informative responses.

It is greatly appreciated.

I shall digest all this and post later.

Islander

It's just a lot to put your body through if you really don't need it. I think you'd find that in time, your body will start to react negatively with physical symptoms (fatigue, muscle pain, joint pain, atheroslcerosis, osteoporosis, cataracts, etc). 20 mg's of Dex is equal to 200 mg's of Prednisone. That's a lot to start and stop abruptly all the time. You will start to suppress your immune system, you will be at greater risk for certain cancers, and your adrenals will become fatigued, among other things. If you are otherwise healthy, using Dex like that won't keep you that way.

Yes, please keep us updated.

Islander wrote:

I only reached 19 one time and it was my lowest... that was when my treatment started. My symptoms were few... only some gum bleeding while brushing my teeth at the lowest count.

Sandi wrote:

If 19k was your lowest and you had few symptoms, you are actually doing pretty good. Why not see if you level out first before jumping into treatment that might not be needed?

Exactly!
So far your symptoms are: gums bleeding while brushing teeth.
Possible side effects of dexamethasone:

SIDE EFFECTS
(listed alphabetically, under each subsection)
The following adverse reactions have been reported with dexamethasone or other corticosteroids:

Allergic Reactions
Anaphylactoid reaction, anaphylaxis, angioedema.

Cardiovascular
Bradycardia, cardiac arrest, cardiac arrhythmias, cardiac enlargement, circulatory collapse, congestive heart failure, fat embolism, hypertension, hyper-trophic cardiomyopathy in premature infants, myocardial rupture following recent myocardial infarction (see WARNINGS: Cardio-Renal), edema, pulmonary edema, syncope, tachycardia, thromboembolism, thrombophlebitis, vasculitis.

Dermatologic
Acne, allergic dermatitis, dry scaly skin, ecchymoses and petechiae, erythema, impaired wound healing, increased sweating, rash, striae, suppression of reactions to skin tests, thin fragile skin, thinning scalp hair, urticaria.

Endocrine
Decreased carbohydrate and glucose tolerance, development of cushingoid state, hyperglycemia, glycosuria, hirsutism, hypertrichosis, increased requirements for insulin or oral hypoglycemic agents in diabetes, manifestations of latent diabetes mellitus, menstrual irregularities, secondary adrenocor-tical and pituitary unresponsiveness (particularly in times of stress, as in trauma, surgery, or illness), suppression of growth in pediatric patients.

Fluid and Electrolyte Disturbances
Congestive heart failure in susceptible patients, fluid retention, hypokalemic alkalosis, potassium loss, sodium retention.

Gastrointestinal
Abdominal distention, elevation in serum liver enzyme levels (usually reversible upon discontinuation), hepatomegaly, increased appetite, nausea, pan-creatitis, peptic ulcer with possible perforation and hemorrhage, perforation of the small and large intestine (particularly in patients with inflammatory bowel disease), ulcerative esophagitis.

Metabolic
Negative nitrogen balance due to protein catabolism.

Musculoskeletal
Aseptic necrosis of femoral and humeral heads, loss of muscle mass, muscle weakness, osteoporosis, pathologic fracture of long bones, steroid myopathy, tendon rupture, vertebral compression fractures.

Neurological/Psychiatric
Convulsions, depression, emotional instability, euphoria, headache, increased intracranial pressure with papilledema (pseudotumor cerebri) usually following discontinuation of treatment, insomnia, mood swings, neuritis, neuropathy, paresthesia, personality changes, psychic disorders, vertigo.

Ophthalmic
Exophthalmos, glaucoma, increased intraocular pressure, posterior subcapsular cataracts.

Other
Abnormal fat deposits, decreased resistance to infection, hiccups, increased or decreased motility and number of spermatozoa, malaise, moon face, weight gain.

All of the treatments have side effects and carry serious risks. It is very, very important that one balance the risks of low platelets against the risks of treatment. Right now the risks of your lowest platelet counts are minimal in comparison.

It's been over 2 years since I've posted... very sorry for being away.
My hematologist has been great, allowing me to monitor my levels and take dex only to maintain a good level all under his supervision of course. Last time I saw him was in Jan. '18, he wanted me to stop dex all together until I got down to 50 this he said would prove that I was dependant . I have not taken any dex for 28 weeks and oddly enough my counts have been quite good "on their own".
Can anyone explain to me why my 'platelet counts' would do this > 4 weeks after dex Oct4/17 '138', Nov2/17 '159', Nov30/17 '140', Dec28/17 '158', Feb21/18 '94', Mar22/18 '171' < No Dex in between other than Sept7/17 20mg 1 day treatment, prior that was May18/17 20mg 1 day treatment . As you may see from my poor explanation, my platelet counts bounce around quite a bit 'without' dexamethasone, But from 94 up to 171 (?) ..Is this common ? Don't get me wrong... I am very happy with these results and even more happy that I can prolong any dex treatment. My hematologist once said "I'm dependant that it wouldn't go away". i.e. once I have ITP it is for life.
I would appreciate any foresight into my question
Thank you Dennis

Hi Dennis:

First of all, your Hemo is wrong about having ITP for life. There are remissions; maybe he forgot about that. Remissions can last a few weeks, months, years or a lifetime. I've been in remission since 2006 after struggling with ITP for 8 years.

I cannot tell you why this is happening, I can only guess that you have hit a remission. It might last a long time or it may not. Only time will tell. There are case studies about remissions after a 6 month Dex pulse. I would suggest that you look into other treatments though. Dex should not be used long-term due to permanent long-term side effects.

Thank You very much for your reply Sandi...
Your knowledge is greatly appreciated.
My counts have not been any threat except at the beginning in 2015 when they dropped to 19.
Last year (2017) I only took dex 4 times...Jan., Mar., May., Sept. (1day each, 20mg each) and even then my counts were still above 130's. It wasn't necessary and I admit I was wrong in trying to maintain a safe 'high' level...also wrong about my original thread title, sorry about that as well.
I know better now and I am better off for it... lately it seems that even without taking dex my counts stay up or rise well over 100 on their own.
So for now, I happy to follow my hematologist's suggestion to stop the dex and see where my counts go.
I was very glad this month when I saw my counts jump from 94 up to 171 on their own...I hope that is a good thing.
I like the way you described that "Remissions can last a few weeks, months, years or a lifetime" that makes more sense to what has been going on with me this past year.
Congratulations for your remission with ITP !
From what I have read in some of the posted treads on this great forum I have nothing to complain about.
Regards
Dennis

Dennis - don't apologize. You didn't do anything wrong. It takes time to learn and become comfortable with this.