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TOPIC: Low Platelets..Help PLS!!! only 22 years old

Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31304

  • jwest52
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well I recently celebrated my 23rd birthday woohoo :silly: and the ITP...well the ITP is coming along just fine I think under me urging my hematologist and running out of options finally gave me immunoglobulin..it worked/works AWESOME for me at least it has been 6 months down the road from my last treatment and my numbers are around 127 last time i had them checked which was over 4 months ago :blush: I kinda fell off the earth from my doctor..I feel as though my platelets are maintaining but with no real count recently im not sure but no ptechaei rash ill take as a good sign although I bruise easier than normal nothing too crazy..if my platelets crash again which fingers crossed they wont im looking into the option of anabolics ;)

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31307

  • Melinda
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jwest52 you posted something similar to this in another section and I answered you there:

Seriously? With the side effects of anabolic steroids? Sorry to ask this jwest52, but are you into body building or sports?

www.mayoclinic.com/print/performance-enh...HQ01105/METHOD=print

[and I do know that any of the meds we take for any reason have side effects - we have to weigh the pros and cons. I can see no pro in taking anabolic steroids!



I'll add now that I've read this post of yours - it is your body and if you want to mess with it you can.

Sorry the site I posted above won't work - but you can do a google search to find the side effects of anabolic steroids. I'm just wondering if you aren't looking for and excuse to take them.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31312

  • jwest52
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just looking for some feedback from people who have tried it and how effectively it treated their ITP

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31313

  • eklein
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Can you educate us a little on what the difference is with the types of steroids? You mentioned danazol is an example of an anabolic steroid and prednisone isn't. What about dex? what are some others, and what is the difference? Maybe if we heard the drug names we might remember some stories from the board.

I've heard of a number of people using danazol, very few but not zero successes.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31317

  • jwest52
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dexamethasone or dex is just another powerful corticosteroid .. danazol is just a modified testosterone molecule the difference is, is that one is a signaler for muscle growth growth for example danazol.. and corticosteroids are catabolic meaning they do not build and also destroy muscle for example dex...but basically danazol is modified testosterone with little androgenic effects because doctors are looking to utilize the immunosuppressant effect of the testosterone for obvious reasons and not the anabolic one..just looking for someone who has either tried danazol or another anabolic steroid and what their experience was like treating ITP with it..

but when you say zero successes do you mean like it did not raise their platelet count or it was not able to cure their ITP?

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31320

  • Ann
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All the drugs that we know as steroids are corticosteroids and nothing to do with anabolic steroids and body building... so that's Pred and Dex and hydrocortisone and any others we hear mentioned.

Danazol isn't much use for bodybuilders and such like and it isn't much use for ITP either. We very rarely see anyone get any success with it. Women get nasty masculinising side effects and men get nothing. If you're thinking that the side effects would be good for you and a nice byproduct then you'll be disappointed.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31322

  • jwest52
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I just wanted an alternative to the prednisone because I look at this way if I half to take a something to keep my platelets from crashing I would rather it be something thats not catabolic causing muscle break down and fat storage i'm not really looking to get any bigger i'm 6'2" 230 with 10 precent body fat..I already look Im on "juice"..but I get terrible side effects from prednisone ranging from migraines, to fatigue, restlessness, hypertension, proteinuria, and hematuria..just not worth the hassle anymore taking it

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31324

  • eklein
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If you search the discussion board for danazol, you will find some stories. I meant there are some success stories, I used a double negative, there are not zero successes, sorry.

Thanks for the explanation.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31330

  • Sandi
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I think you'd just be in for more unwanted side effects. The side effect list for anabolics is pretty long too. Look at Lance Armstrong. While I cannot prove that anabolic steroids caused his cancer, I'd be willing to bet that it did. They are just as dangerous as catabolic steroids. I doubt a doctor would prescribe it.

No one likes Prednisone. I've been on it for 7 years straight in varying doses (not for ITP). I don't like it, but at this point I have no choice. You have to do what you have to do.

I'm not sure what other treatments you've tried....can you tell us?

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31331

  • jwest52
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Rituximab, prednisone, IVIG. I tested my blood in my Physio lab and Im (B-) so that means I could be a candidate anti-D...I just don't feel comfortable about N-Plate because it causes your bone marrow to produce platelets much faster than normally would..the only reason I feel so comfortable with anabolics is because I understand how they work and I know the dangers which all things considerings don't seem that bad when stacked against n-plate...that and i know everyone will agree those 5 to 6 hour infusion for Rituximab suck!

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31337

  • Melinda
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I don't think you will find anyone here who has tried it. Call me the nasty one because I'm not going to be calm cool and collected and say please and thank you - but I just cannot see anyone using anabolic steroids for ITP - much less for anything else under the sun!!! I can't even imagine how someone would come up with anabolic steroids for a treatment. You are a male - have you read some of the side effects of anabolic steroids, you think any of those are better than a 6 hours infusion? Why would any male take the stuff when side effects are:
•Increased erectile dysfunction, and impotence, even though sexual desire is increased.
•Gynecomastia (growth of the breasts) a condition that is generally irreversible and plastic surgery is required to remove the breasts.
•Atrophy or shrinkage of the testicles can occur and is reported usually with high dose use of anabolic steroids.
menshealth.about.com/cs/fitness/a/anab_steroids.htm

I found the same side effects at other sites but not listing them. If I found out my sons [and yes I have sons] were taking this stuff or even considering it they would have hell to pay!

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31340

  • 2Jacks
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Melinda wrote: I don't think you will find anyone here who has tried it. Call me the nasty one because I'm not going to be calm cool and collected and say please and thank you - but I just cannot see anyone using anabolic steroids for ITP - much less for anything else under the sun!!! I can't even imagine how someone would come up with anabolic steroids for a treatment. You are a male - have you read some of the side effects of anabolic steroids, you think any of those are better than a 6 hours infusion? Why would any male take the stuff when side effects are:
•Increased erectile dysfunction, and impotence, even though sexual desire is increased.
•Gynecomastia (growth of the breasts) a condition that is generally irreversible and plastic surgery is required to remove the breasts.
•Atrophy or shrinkage of the testicles can occur and is reported usually with high dose use of anabolic steroids.
menshealth.about.com/cs/fitness/a/anab_steroids.htm

I found the same side effects at other sites but not listing them. If I found out my sons [and yes I have sons] were taking this stuff or even considering it they would have hell to pay!


I'm sorry but I don't think it's fair to chastise someone for asking a question.

JWest has obviously tried a few things and he's frustrated and looking for other options. I don't blame him. I said I was interested as well because I'm in agreement with him - Nplate side effects are scarier, to me, than the side effects associated with anabolic steroids. Leukaemia and bone marrow changes as a side effect are pretty much a non-starter for us.

I thought (and had hoped) that this forum would be full of open minded individuals who are sharing ideas, thoughts, frustrations and experiences without harsh judgements. You may not agree with the method but being openly judgmental and crucifying with your response doesn't get any of us any farther ahead.
The following user(s) said Thank You: jwest52

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31341

  • eklein
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Those side effects won't necessarily come from the dose effective to help ITP (is there an effective dose, ??). It's not a one time dose causes those things - these side effects are the result of long time use usually.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31344

  • Melinda
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As I said 2Jacks - call me the nasty one, I'm not going to pussy foot around. If someone writes something [me or you or Jane Doe or Joe Blow] then they are inviting answers, if they can't take opinions along with the niceties then maybe they shouldn't ask.

I stick to what I said.

And thank you Erica - with conviction you said that the side effects won't necessarily come from a dose effective to ITP, but you add you don't know what that does is, makes sense. Maybe the dose can cause those side effects, as you said you don't know - interesting a man who isn't body building or trying to hit home runs would want to chance it.

But as I did say - it is your body, mess with it all you want.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31345

  • Ann
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Danazol is a normal ITP treatment but I don't think anyone has ever outright called it an anabolic steroid here before which is maybe what is causing the problem for some forum members. As a treatment it isn't one I'd think of using first. I'd rather think of azathioprine or mycophenolate before danazol. But then I'm female so my thoughts about it will be different. It wasn't a drug that I tried.

We all have to weigh up the pros and cons of the various treatments and decide whether the risks outweigh the benefits. For example for me the risks of PML with rituxan coupled with immunosuppression for a year even if it didn't work, was too much of a risk for me to take, while Nplate with its risk of reversible fibrosis was one I thought worth taking.

Also jwest52, if your blood group is rhesus negative, Anti-D is unfortunately not going to be of any use for you.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31347

  • eklein
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There are a number of medical uses for anabolic steroids, according to Mayo Clinic:

Anabolic steroids are used for several reasons:

To help patients gain weight after a severe illness, injury, or continuing infection. They also are used when patients fail to gain or maintain normal weight because of unexplained medical reasons.
To treat certain types of anemia.
To treat certain kinds of breast cancer in some women.
To treat hereditary angioedema, which causes swelling of the face, arms, legs, throat, windpipe, bowels, or sexual organs.
Anabolic steroids may also be used for other conditions as determined by your doctor.

Anabolic steroids are available only with your doctor's prescription.

Once a medicine has been approved for marketing for a certain use, experience may show that it is also useful for other medical problems. Although these uses are not included in product labeling, anabolic steroids may be used in certain patients with the following medical conditions:

Certain blood clotting diseases
Growth failure
Turner's syndrome

I agree with Ann, the risks are comparable to the other drugs we use for ITP. The question is, other than Danazol which seems to help a small minority with ITP, is it an effective treatment? Maybe your doctor would be willing to go off label, like many brave ones did and still do with Rituxan.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31353

  • Sandi
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I think that the bottom line is: If anabolic steroids were successful in treating ITP, it would be a valid treatment. It seems as though the anabolic steroid mechanism just won't do the trick. Not all drugs are created equal. Tylenol is easy to take too. It doesn't raise counts.

I actually thought that the time taken for 4 Rituxan treatments was justified. Of course, this is largely because I did respond. However, Win-Rho never raised my counts at all. I'd been on and off of Prednisone for 8 years and couldn't tolerate it any more. Plus, the weeks and months I was on it were not good for my family or employer. TPO's were not yet available. I'd never even bothered with IVIG because the infusions are just as long and in a year's time, you'd most likely need more than 4. So Rituxan it was. Only missed 4 days of work that year due to ITP, which was actually more than I'd missed any other year.

If you can't find any data on anabolics and ITP, it's probably because there isn't any. It won't work. But if you feel this strongly about it, ask your doctor to give you a script.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31354

  • 2Jacks
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Well Melinda, you've officially proven there is always one. :ohmy:

I'm not sure why a man (or woman) who isn't a body builder or hitting home runs wouldn't want to try something if they personally feel that they prefer the risks and / or side effects of it versus another steroid like Prednisone. It's their body and their decision. Just because you don't think it's the right thing to do that doesn't mean it isn't right for someone else. I think the main goal is finding what works for you and hoping to god or whatever that there is something that works.

From the research I've quickly done it looks like it's typically or historically used to treat Endometriosis. I don't see anything stating it will help with ITP. JWest, I look forward to reading whatever research you find.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31355

  • Sandi
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Ok, but taking Decadron once isn't the same as doing it multiple times. Many people report that multiple uses make side effects worse each time. Also, the dose may have been different than the dose for ITP.

There are many tragic stories that come from anabolic steroid use. I personally know of one. Successful national body builder. Ended up dead at age 37 because of the side effects. Ego + rages = "I can do what I want" and he dropped dead. He lived alone and no one found him for days.

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Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31356

  • Sandi
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Also, I am one who takes Prednisone on a daily basis. I do feel better taking it. Any time I try to taper down, I end up with too much Lupus and RA inflammation.

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Re: Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31360

  • Jdangle
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See you on here. Do you know anything about ITP with CLL and SLL?

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Re: Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31382

  • jwest52
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in response to everyone going on about anabolic steroids..do your research please..yes taken in the doses that world class body builders take them they suffer a increased risk of side effects much like any drug too much of a good thing can be bad and considering they cycle about 7 different compounds at one time(test e,prop,tren,sust,deca,winni v, HGH..ect) ..no sh!t they have health problems LOL..

(rant by me about competitive bodybuilding please do not read if not interested)

and if you pay attention to bodybuilding(i know many do not its kind of a dull sport if you don't lift) for example all the IFFB pro's have a team of health practitioners and doctors monitoring them at all times I don't want to say the sport is safer now but their is a lot more information out their on steroids now and the athletes are under medical supervision.. The people you speak dying at 37 are those that started doing them early in life and never cycled*(that means come off them) and they had no proper medical supervision. (BY NO MEANS AM I SAYING BLATANT DISREGARD FOR ABUSING STEROIDS IS ACCEPTABLE) what I am saying though is people abuse alcohol, pain pills and other illegal substances just the same and cause serious and injury to their selves

(end of me ranting)

As for the side effect of steroids..they are so effective at dampening the immune system that if abused has a chance of permanently dampening your immune system.. source ( en.wikipedia.org/wiki/Anabolic_steroid )..its listed under adverse effects...besides that look up the grocery list of side effects for other ITP treatments such as RItuxin not to add insult to injury but they include death.. on the other hand anabolic steroids have been around since 1930s and have been used to treat several medical conditions but yes they have their own negative side effects like any other drug just saying I think they need to given a chance at least for males..One reason I believe that they have not been explored by health practitioners in treating ITP is because the disease is more pronounced in women and children unlikely candidates for them

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Re: Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31383

  • jwest52
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@ 2jacks thanks for the support honestly I am frustrated and just looking for a better treatment like you said even if it is off label.. just from research it looks like they would be an effective treatment you would just half to work with your doctor to dial them in by that I mean finding the lease possible dose that would maintain your counts at a reasonable level much like prednisone..although anabolics can be a taboo subject for doctors because their scheduled stage 2 drug and most doctors do not want to write scripts because it will red flag them in the system

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Re: Low Platelets..Help PLS!!! only 22 years old 6 years 7 months ago #31385

  • Sandi
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Well, Jwest, I'll be interested to know if you end up getting what you want. Please keep us updated on the progress or lack thereof.

I have had several doctors prescribe off-label meds, but there was prior data on effectiveness and quite a few studies on how the patients tolerated the drug and side effects. I was able to find tons of internet info. I've never had a doctor prescribe something that is out in left field.

You bring up a good point about women being the majority of ITP patients, which could be why anabolic steroids are not prescribed. However, both Danazol and Prednisone are better suited for males and taken long-term, produce quite a few unwanted male side effects (deep voice, facial hair, loss of menses, hair loss, smaller breasts, etc). Doctors don't care about that. Sometimes it works.

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Re: Low Platelets..Help PLS!!! only 22 years old 5 years 4 months ago #41851

  • jwest52
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just wanted to close this topic out in the right way..the anabolics worked im back to feeling like myself and almost year of a clean board of health..I am in no way suggesting that anyone try them with out proper doctor supervision. Second ive taken notice to my BMI and my symptoms..clear and simple.. lower fat to muscle ratio less symptoms..


ill let everyone share their opinions im just sharing what worked for me and possible giving other men in my situation a little hope..

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Re: Low Platelets..Help PLS!!! only 22 years old 5 years 4 months ago #41852

  • Vdeutsch85
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Thank you for sharing your story. You may be on to something. Itp does effect more females than men, so I'm assuming that there haven't been too many studies on this. I'm very glad that they worked for you and you are feeling better. Maybe it can give hope to young men. I know there are a few new young men on the boards who may be interested in your story.

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Re: Low Platelets..Help PLS!!! only 22 years old 5 years 4 months ago #41856

  • Sandi
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Just curious - what drug did you use, what dose and how long? What were your counts before and after treatment?

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